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Doctors gave up on my mom…but I don’t want to give up on her

Forums General Melanoma Community Doctors gave up on my mom…but I don’t want to give up on her

  • Post
    Mli0709
    Participant

      Hello,

      My name is Maria and my mother was diagnosed with vulvar melanoma in Nov 2015. It all started with a woman's wellness check after she noticed a lump in her private part and was misdiagnosed. We live in Texas close to MD Anderson but unfortunately was denied because she does not have insurance and does not qualify for assistance program due to her immigrant residency status.  She was granted a gold card and we were able to get care from Harris county hospital. They diagnosed her with stage 3 and told her that surgery was not an option due to the delicate area so they recommended immunotherapy. The treatment was interrupted due to the immune system making her psoriasis flare up even worse (she already had a skin condition to begin with and the immunotherapy made it even worse) so the doctor decided to drop one of the drugs and keep her on ipi. In the meantime, the tumor was growing and was on lots of narcotics to keep the pain down so the doctors started radiation treatment on her to attempt to shrink the tumor down while on the immunotherapy. She received 6 weeks of immunotherapy and the tumor shrunk significantly. A couple of months later they repeated scans and found that the cancer had metastasized to her lungs and back even the the initial tumor and lymph node were almost undetectable. Because she receives care at a county hospital she has been seen by fellows and residents and unfortunately the first fellow we had ended her rotation when she told us the news about the spread. They recommended chemo as the next option but after 2 cycles I could see the chemo sucking the life out of my mom. The first visit with the new fellow was a nightmare. He pretty much told us that there's no cure for this and eventually the cancer will outgrown the chemo. After the two cycles and my mother barely unable to walk the doctors convinced us to just stop treatment and go home to enjoy life. My reaction to them is "so you're just giving up? Just like that?" And they went on to explain that quality of life at this point is the priority. We are not the richest people on earth, my mother has no insurance but she is one of the hardest working people I know. Does this really mean that there is really no hope for this woman because of lack of access to resources? The doctors have given up on her but I just refused to. I have turned in an application for Medicaid (since MD Anderson accepts this as form of insurance) but they said it takes 45 days to see if she gets accepted of denied…..I just graduated from pharmacy school in May and turned 25 this month.  this year has been the most challenging year of my life but I believe that it's not over until God says it's over. I am trying to explore clinal trials options but I don't know if they cost money and I am new to the process. If anyone has any information that may be helpful to my mother and my family I will really appreciate it. 

      God Bless,

      Maria 

       

      – ps I have read some of the stories on the threads and you all inspire me to keep fighting this ugly disease. Thank you for reading. 

    Viewing 29 reply threads
    • Replies
        MoiraM
        Participant

          Your mother has been through a lot. What does she want to do?

          Could the doctor be right? Is it time to think about her qualityof life rather than the length?

          From what you have written, although your mother's access to treatment may have been affected by her residential status and lack of insurance, she has received ipi/nivo immunotherapy, radiation and chemotherapy. What additional treatment are you hoping that MD Anderson will offer?

          I hope that you are successful with the Medicaid application and, if that is what your mother wishes to do, you get your second opinion from MD Anderson.

            Mli0709
            Participant

              Hi,

              My mom wishes to fight. She's very prayerful and still believes God will answer her prayers. Yes, I understand that she has exhausted her options of treatment but my thought process behind getting her into MD Anderson is that they may have some insight on her case that the other doctors may not have? She's now at home recovering and of course we are thinking about her quality of life but as a concerned daughter I'm just trying to find what else is out there that may be an option. I know there's not much but I believe in miracles. 

               

              Thank you for your feedback 

              MoiraM
              Participant

                Then spoil your Mum, get her as healthy as possible and try to push that Medicaid application through so you can get a second apinion at MD Anderson.

                MoiraM
                Participant

                  Then spoil your Mum, get her as healthy as possible and try to push that Medicaid application through so you can get a second apinion at MD Anderson.

                  MoiraM
                  Participant

                    Then spoil your Mum, get her as healthy as possible and try to push that Medicaid application through so you can get a second apinion at MD Anderson.

                    Mli0709
                    Participant

                      Hi,

                      My mom wishes to fight. She's very prayerful and still believes God will answer her prayers. Yes, I understand that she has exhausted her options of treatment but my thought process behind getting her into MD Anderson is that they may have some insight on her case that the other doctors may not have? She's now at home recovering and of course we are thinking about her quality of life but as a concerned daughter I'm just trying to find what else is out there that may be an option. I know there's not much but I believe in miracles. 

                       

                      Thank you for your feedback 

                      Mli0709
                      Participant

                        Hi,

                        My mom wishes to fight. She's very prayerful and still believes God will answer her prayers. Yes, I understand that she has exhausted her options of treatment but my thought process behind getting her into MD Anderson is that they may have some insight on her case that the other doctors may not have? She's now at home recovering and of course we are thinking about her quality of life but as a concerned daughter I'm just trying to find what else is out there that may be an option. I know there's not much but I believe in miracles. 

                         

                        Thank you for your feedback 

                      MoiraM
                      Participant

                        Your mother has been through a lot. What does she want to do?

                        Could the doctor be right? Is it time to think about her qualityof life rather than the length?

                        From what you have written, although your mother's access to treatment may have been affected by her residential status and lack of insurance, she has received ipi/nivo immunotherapy, radiation and chemotherapy. What additional treatment are you hoping that MD Anderson will offer?

                        I hope that you are successful with the Medicaid application and, if that is what your mother wishes to do, you get your second opinion from MD Anderson.

                        MoiraM
                        Participant

                          Your mother has been through a lot. What does she want to do?

                          Could the doctor be right? Is it time to think about her qualityof life rather than the length?

                          From what you have written, although your mother's access to treatment may have been affected by her residential status and lack of insurance, she has received ipi/nivo immunotherapy, radiation and chemotherapy. What additional treatment are you hoping that MD Anderson will offer?

                          I hope that you are successful with the Medicaid application and, if that is what your mother wishes to do, you get your second opinion from MD Anderson.

                          JoshF
                          Participant

                            Any chance anyone can "fast track" medicaid due to medical necessity? Have you contacted MDA to see if they will see her now…at least a consultation? They don't do any charity care?Though I do agree quality of life is important but Maria is right…what does your mom want to do? She want to fight? If so push…and push hard. I'm sorry you're going through this and your Mom has been suffering. There potentially may be a clinical trial or something she could do…I pray that you find a path here…

                            Josh

                              Mli0709
                              Participant

                                Hi Josh,

                                Ive asked for a fast track route but was told they don't do that. My mom wants to fight of course. She's very spiritual and she still believes God will answer our prayers. Because of my expirience in health care I try to be the best advocate I can be for her. I just feel like she's at a disadvantage because she may not be receiving the best care? Perhaps MD Anderson may have more clinical knowledge and I noticed they have a melanoma clinic with experts on the field vs hematology oncology follows at the county. I know this doesn't guarantee anything but I just wonder. When I hear of others' success stories they always mention how they were able to travel, had good insurance or were seen by the best doctors. I'm not sure I can say the same for my mother and this scares me. She's 2.5 weeks out of her last chemo and recovering at home. She's not experiencing any symptoms from the actual melanoma but I'm trying to figure out other options while she rests and recovers. 

                                 

                                Thank you for your feedback 

                                Mli0709
                                Participant

                                  Hi Josh,

                                  Ive asked for a fast track route but was told they don't do that. My mom wants to fight of course. She's very spiritual and she still believes God will answer our prayers. Because of my expirience in health care I try to be the best advocate I can be for her. I just feel like she's at a disadvantage because she may not be receiving the best care? Perhaps MD Anderson may have more clinical knowledge and I noticed they have a melanoma clinic with experts on the field vs hematology oncology follows at the county. I know this doesn't guarantee anything but I just wonder. When I hear of others' success stories they always mention how they were able to travel, had good insurance or were seen by the best doctors. I'm not sure I can say the same for my mother and this scares me. She's 2.5 weeks out of her last chemo and recovering at home. She's not experiencing any symptoms from the actual melanoma but I'm trying to figure out other options while she rests and recovers. 

                                   

                                  Thank you for your feedback 

                                  Mli0709
                                  Participant

                                    Hi Josh,

                                    Ive asked for a fast track route but was told they don't do that. My mom wants to fight of course. She's very spiritual and she still believes God will answer our prayers. Because of my expirience in health care I try to be the best advocate I can be for her. I just feel like she's at a disadvantage because she may not be receiving the best care? Perhaps MD Anderson may have more clinical knowledge and I noticed they have a melanoma clinic with experts on the field vs hematology oncology follows at the county. I know this doesn't guarantee anything but I just wonder. When I hear of others' success stories they always mention how they were able to travel, had good insurance or were seen by the best doctors. I'm not sure I can say the same for my mother and this scares me. She's 2.5 weeks out of her last chemo and recovering at home. She's not experiencing any symptoms from the actual melanoma but I'm trying to figure out other options while she rests and recovers. 

                                     

                                    Thank you for your feedback 

                                  JoshF
                                  Participant

                                    Any chance anyone can "fast track" medicaid due to medical necessity? Have you contacted MDA to see if they will see her now…at least a consultation? They don't do any charity care?Though I do agree quality of life is important but Maria is right…what does your mom want to do? She want to fight? If so push…and push hard. I'm sorry you're going through this and your Mom has been suffering. There potentially may be a clinical trial or something she could do…I pray that you find a path here…

                                    Josh

                                    JoshF
                                    Participant

                                      Any chance anyone can "fast track" medicaid due to medical necessity? Have you contacted MDA to see if they will see her now…at least a consultation? They don't do any charity care?Though I do agree quality of life is important but Maria is right…what does your mom want to do? She want to fight? If so push…and push hard. I'm sorry you're going through this and your Mom has been suffering. There potentially may be a clinical trial or something she could do…I pray that you find a path here…

                                      Josh

                                      ecc26
                                      Participant

                                        So sorry to hear about your mother. You're right- I can't really relate to her situation, not only because of the location of her tumors, but also because I am fortunate and do have good insurance. The affordable care act was intended to ease this burden on people, but it was such a fight getting it through Congress, and so much was cut out of it that it's not that useful for many. Add to that the number of states that refused to allow the medicaid expansion offered (I believe Texas was one) and you get terrible situations like the one you're in. I wish there was something I could do to help. Seems like MD Anderson would have some sort of program to help out people in your situation, at least to get a consult. I don't live in Texas though so I don't know.

                                        I hope you get something figured out. 

                                        As far as trial costs go- most of the time the drug company pays for the drug and any testing related specifically to the trial, but they may charge insurance for scans or regular follow-ups that they see as things that would happen anyway, so if there's no insurance to charge, it's unlikely that your mom would be accepted into a trial. 

                                        I live in central NY state and we have an amazing non-profit center set up to help people just  like your mom- have you checked to see if something like that exists in your area?

                                        -Eva

                                        ecc26
                                        Participant

                                          So sorry to hear about your mother. You're right- I can't really relate to her situation, not only because of the location of her tumors, but also because I am fortunate and do have good insurance. The affordable care act was intended to ease this burden on people, but it was such a fight getting it through Congress, and so much was cut out of it that it's not that useful for many. Add to that the number of states that refused to allow the medicaid expansion offered (I believe Texas was one) and you get terrible situations like the one you're in. I wish there was something I could do to help. Seems like MD Anderson would have some sort of program to help out people in your situation, at least to get a consult. I don't live in Texas though so I don't know.

                                          I hope you get something figured out. 

                                          As far as trial costs go- most of the time the drug company pays for the drug and any testing related specifically to the trial, but they may charge insurance for scans or regular follow-ups that they see as things that would happen anyway, so if there's no insurance to charge, it's unlikely that your mom would be accepted into a trial. 

                                          I live in central NY state and we have an amazing non-profit center set up to help people just  like your mom- have you checked to see if something like that exists in your area?

                                          -Eva

                                          ecc26
                                          Participant

                                            So sorry to hear about your mother. You're right- I can't really relate to her situation, not only because of the location of her tumors, but also because I am fortunate and do have good insurance. The affordable care act was intended to ease this burden on people, but it was such a fight getting it through Congress, and so much was cut out of it that it's not that useful for many. Add to that the number of states that refused to allow the medicaid expansion offered (I believe Texas was one) and you get terrible situations like the one you're in. I wish there was something I could do to help. Seems like MD Anderson would have some sort of program to help out people in your situation, at least to get a consult. I don't live in Texas though so I don't know.

                                            I hope you get something figured out. 

                                            As far as trial costs go- most of the time the drug company pays for the drug and any testing related specifically to the trial, but they may charge insurance for scans or regular follow-ups that they see as things that would happen anyway, so if there's no insurance to charge, it's unlikely that your mom would be accepted into a trial. 

                                            I live in central NY state and we have an amazing non-profit center set up to help people just  like your mom- have you checked to see if something like that exists in your area?

                                            -Eva

                                            jbronicki
                                            Participant

                                              Hi Maria,

                                              I can speak as a daughter that has lost both her parents (one to cancer, not melanoma, and my father to an agressive form of Parkinson's called PSP).  I understand how hard this all is and just know that you are doing a great job as a daughter and an advocate.  You mother is proud of you for sure.  It's very tough to be the care giver and the advocate as well.

                                              I'm not sure if this is where you went first to get Medicaid form but MD Anderson does have this:

                                              https://www.mdanderson.org/about-md-anderson/business-legal/office-of-health-policy/uncompensated-care-program.html

                                              The uncompensated care program.  If you are already going through this, not sure if there is anything that can be done about the 45 day delay.

                                              I would also call the Patient Advocates Group at MD Anderson.  Your best bet is usually to get a social worker to help you navigate the red tape.  They might know the shortcuts that can speed up applications, etc.

                                              https://www.mdanderson.org/patients-family/diagnosis-treatment/patient-support/patient-advocacy.html

                                              https://www.mdanderson.org/publications/cancerwise/2014/07/how-social-work-counselors-help-our-cancer-paitents.html

                                              My experience has been that I can sometimes save time by going through people who should know the answers to these questions or at least find out for you.

                                              Best of luck and many hugs to you and your mother.

                                              Jackie

                                               

                                              jbronicki
                                              Participant

                                                Hi Maria,

                                                I can speak as a daughter that has lost both her parents (one to cancer, not melanoma, and my father to an agressive form of Parkinson's called PSP).  I understand how hard this all is and just know that you are doing a great job as a daughter and an advocate.  You mother is proud of you for sure.  It's very tough to be the care giver and the advocate as well.

                                                I'm not sure if this is where you went first to get Medicaid form but MD Anderson does have this:

                                                https://www.mdanderson.org/about-md-anderson/business-legal/office-of-health-policy/uncompensated-care-program.html

                                                The uncompensated care program.  If you are already going through this, not sure if there is anything that can be done about the 45 day delay.

                                                I would also call the Patient Advocates Group at MD Anderson.  Your best bet is usually to get a social worker to help you navigate the red tape.  They might know the shortcuts that can speed up applications, etc.

                                                https://www.mdanderson.org/patients-family/diagnosis-treatment/patient-support/patient-advocacy.html

                                                https://www.mdanderson.org/publications/cancerwise/2014/07/how-social-work-counselors-help-our-cancer-paitents.html

                                                My experience has been that I can sometimes save time by going through people who should know the answers to these questions or at least find out for you.

                                                Best of luck and many hugs to you and your mother.

                                                Jackie

                                                 

                                                jbronicki
                                                Participant

                                                  Hi Maria,

                                                  I can speak as a daughter that has lost both her parents (one to cancer, not melanoma, and my father to an agressive form of Parkinson's called PSP).  I understand how hard this all is and just know that you are doing a great job as a daughter and an advocate.  You mother is proud of you for sure.  It's very tough to be the care giver and the advocate as well.

                                                  I'm not sure if this is where you went first to get Medicaid form but MD Anderson does have this:

                                                  https://www.mdanderson.org/about-md-anderson/business-legal/office-of-health-policy/uncompensated-care-program.html

                                                  The uncompensated care program.  If you are already going through this, not sure if there is anything that can be done about the 45 day delay.

                                                  I would also call the Patient Advocates Group at MD Anderson.  Your best bet is usually to get a social worker to help you navigate the red tape.  They might know the shortcuts that can speed up applications, etc.

                                                  https://www.mdanderson.org/patients-family/diagnosis-treatment/patient-support/patient-advocacy.html

                                                  https://www.mdanderson.org/publications/cancerwise/2014/07/how-social-work-counselors-help-our-cancer-paitents.html

                                                  My experience has been that I can sometimes save time by going through people who should know the answers to these questions or at least find out for you.

                                                  Best of luck and many hugs to you and your mother.

                                                  Jackie

                                                   

                                                    jbronicki
                                                    Participant

                                                      The uncompensated program might not work for your mother due to her immigrant status, but social work may have ideas if there are programs, etc.

                                                       

                                                      Mli0709
                                                      Participant

                                                        Hi Jackie,

                                                        I read on your profile that your husband is under MD Anderson care. How has the experience been for you all? 

                                                        Mli0709
                                                        Participant

                                                          Hi Jackie,

                                                          I read on your profile that your husband is under MD Anderson care. How has the experience been for you all? 

                                                          Mli0709
                                                          Participant

                                                            Hi Jackie,

                                                            I read on your profile that your husband is under MD Anderson care. How has the experience been for you all? 

                                                            jbronicki
                                                            Participant

                                                              Hi Mlio,

                                                              I'll gladly share our experience at MD Anderson.  My husband was diagnosed in February 2014, he had large tumor on his upper left back. The Breslow depth was 19 mm and the tumor was about 2 cm diameter and had no epidermal component.  So he is technically "stage 4" since they consider it a metastasized tumor from unknown primary.   I felt pretty lucky that we moved to Houston from Ann Arbor Mich in that year so we happened to live right by MD Annderson.  

                                                              My husband is a bit of a unique case in that he has only had surgery so far, no other treatment.  MD Anderson, got us into surgery within that week.  I did have to go a little "Terms of Endearment", Shirley Maclaine, on the scheduling people though.  

                                                              Our melanoma surgeon, Dr. Janice Cormier, is absolutely top knotch.  I think that's definitely a key component.  Not only is she a great surgeon, but also very good bedside manner that made me feel better.  I sat alone outside during John's surgery and she came out after and told me there was hope, since at that point we thought this was the end.

                                                              John was then referred to Dr. Rodabe Amaria, who is a melanoma medical oncologist at MD Anderson.  She did the genetic testing and presented us with all of our options including immunotherapy, except she did not recommend interferon, which I totally agree with her on no interferon.  My husband chose wait and watch so we go every 3 months for scans and just got switched to the 6 month schedule.  In the beginning they also did lymph node ultrasounds and took node biopsies in the beginning to make sure they caught any spread through lymph nodes quickly. We just had 2 1/2 year scans. Dr. Amaria is really good, and I feel good that these people are on the forefront of the current protocols and treatment options for melanoma. 

                                                              So from my perspective, they have offered everything in terms of monitoring John and his doctor has gathered all the information that they can (i.e. genetic testing, lymph node scintigraphy, etc).  They haven't missed any step so far that we think they should have done, etc.  My husband would say wait times are frustrating since he has to miss work, but I consider that a non-problem.  We actually recommended to them they should function like an airline where you can login and see if there is a "delay" and plan your day accordingly.  The staff really liked that idea.  The longest we had to wait was 2 hours once, but most times we get in within 30 minutes and we always get our scan results the same day which helps with the massive anxiety around the scans.  That is a huge plus and I don't take it for granted! Also, if anything develops, I believe John would be in the pipeline for treatment immediately.  

                                                              In terms of the scheduling personnel and financial personnel, they can be pretty tough and I don't expect any help from them (However, the new scheduling people have been better and they always work with me on putting the scans and dr. appointment on one day since John doesn't like to miss work).  My husband would agree with Maria that the financial department is the most difficult to deal with and you won't find any empathy or even helpfulness there, which I guess isn't shocking.  

                                                              However, like Bubbles was saying, you do really have to be the advocate for either yourself or your family member.  and even good advocates with tons of knowledge struggle within our system of insurance, clinical trial requirements, etc.   I went through this with my father (they actually did a story on us on NPR about disparate healthcare in the US).  

                                                              But other then the normal insurance stuff and scheduling, I would say our experience with MD Anderson has been that they melanoma specialists and surgeons know what they are doing and obviously are on top of the current research for this type of aggresive cancer.  

                                                              Having gone through what I did with my dad at a non-specialty hospital, the first step is getting to these specialists if you can and someone that deals with melanoma as their specialty.  

                                                               

                                                              Hope that helps!

                                                              Hugs,

                                                              Jackie

                                                               

                                                              jbronicki
                                                              Participant

                                                                Hi Mlio,

                                                                I'll gladly share our experience at MD Anderson.  My husband was diagnosed in February 2014, he had large tumor on his upper left back. The Breslow depth was 19 mm and the tumor was about 2 cm diameter and had no epidermal component.  So he is technically "stage 4" since they consider it a metastasized tumor from unknown primary.   I felt pretty lucky that we moved to Houston from Ann Arbor Mich in that year so we happened to live right by MD Annderson.  

                                                                My husband is a bit of a unique case in that he has only had surgery so far, no other treatment.  MD Anderson, got us into surgery within that week.  I did have to go a little "Terms of Endearment", Shirley Maclaine, on the scheduling people though.  

                                                                Our melanoma surgeon, Dr. Janice Cormier, is absolutely top knotch.  I think that's definitely a key component.  Not only is she a great surgeon, but also very good bedside manner that made me feel better.  I sat alone outside during John's surgery and she came out after and told me there was hope, since at that point we thought this was the end.

                                                                John was then referred to Dr. Rodabe Amaria, who is a melanoma medical oncologist at MD Anderson.  She did the genetic testing and presented us with all of our options including immunotherapy, except she did not recommend interferon, which I totally agree with her on no interferon.  My husband chose wait and watch so we go every 3 months for scans and just got switched to the 6 month schedule.  In the beginning they also did lymph node ultrasounds and took node biopsies in the beginning to make sure they caught any spread through lymph nodes quickly. We just had 2 1/2 year scans. Dr. Amaria is really good, and I feel good that these people are on the forefront of the current protocols and treatment options for melanoma. 

                                                                So from my perspective, they have offered everything in terms of monitoring John and his doctor has gathered all the information that they can (i.e. genetic testing, lymph node scintigraphy, etc).  They haven't missed any step so far that we think they should have done, etc.  My husband would say wait times are frustrating since he has to miss work, but I consider that a non-problem.  We actually recommended to them they should function like an airline where you can login and see if there is a "delay" and plan your day accordingly.  The staff really liked that idea.  The longest we had to wait was 2 hours once, but most times we get in within 30 minutes and we always get our scan results the same day which helps with the massive anxiety around the scans.  That is a huge plus and I don't take it for granted! Also, if anything develops, I believe John would be in the pipeline for treatment immediately.  

                                                                In terms of the scheduling personnel and financial personnel, they can be pretty tough and I don't expect any help from them (However, the new scheduling people have been better and they always work with me on putting the scans and dr. appointment on one day since John doesn't like to miss work).  My husband would agree with Maria that the financial department is the most difficult to deal with and you won't find any empathy or even helpfulness there, which I guess isn't shocking.  

                                                                However, like Bubbles was saying, you do really have to be the advocate for either yourself or your family member.  and even good advocates with tons of knowledge struggle within our system of insurance, clinical trial requirements, etc.   I went through this with my father (they actually did a story on us on NPR about disparate healthcare in the US).  

                                                                But other then the normal insurance stuff and scheduling, I would say our experience with MD Anderson has been that they melanoma specialists and surgeons know what they are doing and obviously are on top of the current research for this type of aggresive cancer.  

                                                                Having gone through what I did with my dad at a non-specialty hospital, the first step is getting to these specialists if you can and someone that deals with melanoma as their specialty.  

                                                                 

                                                                Hope that helps!

                                                                Hugs,

                                                                Jackie

                                                                 

                                                                jbronicki
                                                                Participant

                                                                  Hi Mlio,

                                                                  I'll gladly share our experience at MD Anderson.  My husband was diagnosed in February 2014, he had large tumor on his upper left back. The Breslow depth was 19 mm and the tumor was about 2 cm diameter and had no epidermal component.  So he is technically "stage 4" since they consider it a metastasized tumor from unknown primary.   I felt pretty lucky that we moved to Houston from Ann Arbor Mich in that year so we happened to live right by MD Annderson.  

                                                                  My husband is a bit of a unique case in that he has only had surgery so far, no other treatment.  MD Anderson, got us into surgery within that week.  I did have to go a little "Terms of Endearment", Shirley Maclaine, on the scheduling people though.  

                                                                  Our melanoma surgeon, Dr. Janice Cormier, is absolutely top knotch.  I think that's definitely a key component.  Not only is she a great surgeon, but also very good bedside manner that made me feel better.  I sat alone outside during John's surgery and she came out after and told me there was hope, since at that point we thought this was the end.

                                                                  John was then referred to Dr. Rodabe Amaria, who is a melanoma medical oncologist at MD Anderson.  She did the genetic testing and presented us with all of our options including immunotherapy, except she did not recommend interferon, which I totally agree with her on no interferon.  My husband chose wait and watch so we go every 3 months for scans and just got switched to the 6 month schedule.  In the beginning they also did lymph node ultrasounds and took node biopsies in the beginning to make sure they caught any spread through lymph nodes quickly. We just had 2 1/2 year scans. Dr. Amaria is really good, and I feel good that these people are on the forefront of the current protocols and treatment options for melanoma. 

                                                                  So from my perspective, they have offered everything in terms of monitoring John and his doctor has gathered all the information that they can (i.e. genetic testing, lymph node scintigraphy, etc).  They haven't missed any step so far that we think they should have done, etc.  My husband would say wait times are frustrating since he has to miss work, but I consider that a non-problem.  We actually recommended to them they should function like an airline where you can login and see if there is a "delay" and plan your day accordingly.  The staff really liked that idea.  The longest we had to wait was 2 hours once, but most times we get in within 30 minutes and we always get our scan results the same day which helps with the massive anxiety around the scans.  That is a huge plus and I don't take it for granted! Also, if anything develops, I believe John would be in the pipeline for treatment immediately.  

                                                                  In terms of the scheduling personnel and financial personnel, they can be pretty tough and I don't expect any help from them (However, the new scheduling people have been better and they always work with me on putting the scans and dr. appointment on one day since John doesn't like to miss work).  My husband would agree with Maria that the financial department is the most difficult to deal with and you won't find any empathy or even helpfulness there, which I guess isn't shocking.  

                                                                  However, like Bubbles was saying, you do really have to be the advocate for either yourself or your family member.  and even good advocates with tons of knowledge struggle within our system of insurance, clinical trial requirements, etc.   I went through this with my father (they actually did a story on us on NPR about disparate healthcare in the US).  

                                                                  But other then the normal insurance stuff and scheduling, I would say our experience with MD Anderson has been that they melanoma specialists and surgeons know what they are doing and obviously are on top of the current research for this type of aggresive cancer.  

                                                                  Having gone through what I did with my dad at a non-specialty hospital, the first step is getting to these specialists if you can and someone that deals with melanoma as their specialty.  

                                                                   

                                                                  Hope that helps!

                                                                  Hugs,

                                                                  Jackie

                                                                   

                                                                  jbronicki
                                                                  Participant

                                                                    Hi Mlio,

                                                                    I'll gladly share our experience at MD Anderson.  My husband was diagnosed in February 2014, he had large tumor on his upper left back. The Breslow depth was 19 mm and the tumor was about 2 cm diameter and had no epidermal component.  So he is technically "stage 4" since they consider it a metastasized tumor from unknown primary.   I felt pretty lucky that we moved to Houston from Ann Arbor Mich in that year so we happened to live right by MD Annderson.  

                                                                    My husband is a bit of a unique case in that he has only had surgery so far, no other treatment.  MD Anderson, got us into surgery within that week.  I did have to go a little "Terms of Endearment", Shirley Maclaine, on the scheduling people though.  

                                                                    Our melanoma surgeon, Dr. Janice Cormier, is absolutely top knotch.  I think that's definitely a key component.  Not only is she a great surgeon, but also very good bedside manner that made me feel better.  I sat alone outside during John's surgery and she came out after and told me there was hope, since at that point we thought this was the end.

                                                                    John was then referred to Dr. Rodabe Amaria, who is a melanoma medical oncologist at MD Anderson.  She did the genetic testing and presented us with all of our options including immunotherapy, except she did not recommend interferon, which I totally agree with her on no interferon.  My husband chose wait and watch so we go every 3 months for scans and just got switched to the 6 month schedule.  In the beginning they also did lymph node ultrasounds and took node biopsies in the beginning to make sure they caught any spread through lymph nodes quickly. We just had 2 1/2 year scans. Dr. Amaria is really good, and I feel good that these people are on the forefront of the current protocols and treatment options for melanoma. 

                                                                    So from my perspective, they have offered everything in terms of monitoring John and his doctor has gathered all the information that they can (i.e. genetic testing, lymph node scintigraphy, etc).  They haven't missed any step so far that we think they should have done, etc.  My husband would say wait times are frustrating since he has to miss work, but I consider that a non-problem.  We actually recommended to them they should function like an airline where you can login and see if there is a "delay" and plan your day accordingly.  The staff really liked that idea.  The longest we had to wait was 2 hours once, but most times we get in within 30 minutes and we always get our scan results the same day which helps with the massive anxiety around the scans.  That is a huge plus and I don't take it for granted! Also, if anything develops, I believe John would be in the pipeline for treatment immediately.  

                                                                    In terms of the scheduling personnel and financial personnel, they can be pretty tough and I don't expect any help from them (However, the new scheduling people have been better and they always work with me on putting the scans and dr. appointment on one day since John doesn't like to miss work).  My husband would agree with Maria that the financial department is the most difficult to deal with and you won't find any empathy or even helpfulness there, which I guess isn't shocking.  

                                                                    However, like Bubbles was saying, you do really have to be the advocate for either yourself or your family member.  and even good advocates with tons of knowledge struggle within our system of insurance, clinical trial requirements, etc.   I went through this with my father (they actually did a story on us on NPR about disparate healthcare in the US).  

                                                                    But other then the normal insurance stuff and scheduling, I would say our experience with MD Anderson has been that they melanoma specialists and surgeons know what they are doing and obviously are on top of the current research for this type of aggresive cancer.  

                                                                    Having gone through what I did with my dad at a non-specialty hospital, the first step is getting to these specialists if you can and someone that deals with melanoma as their specialty.  

                                                                     

                                                                    Hope that helps!

                                                                    Hugs,

                                                                    Jackie

                                                                     

                                                                    jbronicki
                                                                    Participant

                                                                      Hi Mlio,

                                                                      I'll gladly share our experience at MD Anderson.  My husband was diagnosed in February 2014, he had large tumor on his upper left back. The Breslow depth was 19 mm and the tumor was about 2 cm diameter and had no epidermal component.  So he is technically "stage 4" since they consider it a metastasized tumor from unknown primary.   I felt pretty lucky that we moved to Houston from Ann Arbor Mich in that year so we happened to live right by MD Annderson.  

                                                                      My husband is a bit of a unique case in that he has only had surgery so far, no other treatment.  MD Anderson, got us into surgery within that week.  I did have to go a little "Terms of Endearment", Shirley Maclaine, on the scheduling people though.  

                                                                      Our melanoma surgeon, Dr. Janice Cormier, is absolutely top knotch.  I think that's definitely a key component.  Not only is she a great surgeon, but also very good bedside manner that made me feel better.  I sat alone outside during John's surgery and she came out after and told me there was hope, since at that point we thought this was the end.

                                                                      John was then referred to Dr. Rodabe Amaria, who is a melanoma medical oncologist at MD Anderson.  She did the genetic testing and presented us with all of our options including immunotherapy, except she did not recommend interferon, which I totally agree with her on no interferon.  My husband chose wait and watch so we go every 3 months for scans and just got switched to the 6 month schedule.  In the beginning they also did lymph node ultrasounds and took node biopsies in the beginning to make sure they caught any spread through lymph nodes quickly. We just had 2 1/2 year scans. Dr. Amaria is really good, and I feel good that these people are on the forefront of the current protocols and treatment options for melanoma. 

                                                                      So from my perspective, they have offered everything in terms of monitoring John and his doctor has gathered all the information that they can (i.e. genetic testing, lymph node scintigraphy, etc).  They haven't missed any step so far that we think they should have done, etc.  My husband would say wait times are frustrating since he has to miss work, but I consider that a non-problem.  We actually recommended to them they should function like an airline where you can login and see if there is a "delay" and plan your day accordingly.  The staff really liked that idea.  The longest we had to wait was 2 hours once, but most times we get in within 30 minutes and we always get our scan results the same day which helps with the massive anxiety around the scans.  That is a huge plus and I don't take it for granted! Also, if anything develops, I believe John would be in the pipeline for treatment immediately.  

                                                                      In terms of the scheduling personnel and financial personnel, they can be pretty tough and I don't expect any help from them (However, the new scheduling people have been better and they always work with me on putting the scans and dr. appointment on one day since John doesn't like to miss work).  My husband would agree with Maria that the financial department is the most difficult to deal with and you won't find any empathy or even helpfulness there, which I guess isn't shocking.  

                                                                      However, like Bubbles was saying, you do really have to be the advocate for either yourself or your family member.  and even good advocates with tons of knowledge struggle within our system of insurance, clinical trial requirements, etc.   I went through this with my father (they actually did a story on us on NPR about disparate healthcare in the US).  

                                                                      But other then the normal insurance stuff and scheduling, I would say our experience with MD Anderson has been that they melanoma specialists and surgeons know what they are doing and obviously are on top of the current research for this type of aggresive cancer.  

                                                                      Having gone through what I did with my dad at a non-specialty hospital, the first step is getting to these specialists if you can and someone that deals with melanoma as their specialty.  

                                                                       

                                                                      Hope that helps!

                                                                      Hugs,

                                                                      Jackie

                                                                       

                                                                      jbronicki
                                                                      Participant

                                                                        Hi Mlio,

                                                                        I'll gladly share our experience at MD Anderson.  My husband was diagnosed in February 2014, he had large tumor on his upper left back. The Breslow depth was 19 mm and the tumor was about 2 cm diameter and had no epidermal component.  So he is technically "stage 4" since they consider it a metastasized tumor from unknown primary.   I felt pretty lucky that we moved to Houston from Ann Arbor Mich in that year so we happened to live right by MD Annderson.  

                                                                        My husband is a bit of a unique case in that he has only had surgery so far, no other treatment.  MD Anderson, got us into surgery within that week.  I did have to go a little "Terms of Endearment", Shirley Maclaine, on the scheduling people though.  

                                                                        Our melanoma surgeon, Dr. Janice Cormier, is absolutely top knotch.  I think that's definitely a key component.  Not only is she a great surgeon, but also very good bedside manner that made me feel better.  I sat alone outside during John's surgery and she came out after and told me there was hope, since at that point we thought this was the end.

                                                                        John was then referred to Dr. Rodabe Amaria, who is a melanoma medical oncologist at MD Anderson.  She did the genetic testing and presented us with all of our options including immunotherapy, except she did not recommend interferon, which I totally agree with her on no interferon.  My husband chose wait and watch so we go every 3 months for scans and just got switched to the 6 month schedule.  In the beginning they also did lymph node ultrasounds and took node biopsies in the beginning to make sure they caught any spread through lymph nodes quickly. We just had 2 1/2 year scans. Dr. Amaria is really good, and I feel good that these people are on the forefront of the current protocols and treatment options for melanoma. 

                                                                        So from my perspective, they have offered everything in terms of monitoring John and his doctor has gathered all the information that they can (i.e. genetic testing, lymph node scintigraphy, etc).  They haven't missed any step so far that we think they should have done, etc.  My husband would say wait times are frustrating since he has to miss work, but I consider that a non-problem.  We actually recommended to them they should function like an airline where you can login and see if there is a "delay" and plan your day accordingly.  The staff really liked that idea.  The longest we had to wait was 2 hours once, but most times we get in within 30 minutes and we always get our scan results the same day which helps with the massive anxiety around the scans.  That is a huge plus and I don't take it for granted! Also, if anything develops, I believe John would be in the pipeline for treatment immediately.  

                                                                        In terms of the scheduling personnel and financial personnel, they can be pretty tough and I don't expect any help from them (However, the new scheduling people have been better and they always work with me on putting the scans and dr. appointment on one day since John doesn't like to miss work).  My husband would agree with Maria that the financial department is the most difficult to deal with and you won't find any empathy or even helpfulness there, which I guess isn't shocking.  

                                                                        However, like Bubbles was saying, you do really have to be the advocate for either yourself or your family member.  and even good advocates with tons of knowledge struggle within our system of insurance, clinical trial requirements, etc.   I went through this with my father (they actually did a story on us on NPR about disparate healthcare in the US).  

                                                                        But other then the normal insurance stuff and scheduling, I would say our experience with MD Anderson has been that they melanoma specialists and surgeons know what they are doing and obviously are on top of the current research for this type of aggresive cancer.  

                                                                        Having gone through what I did with my dad at a non-specialty hospital, the first step is getting to these specialists if you can and someone that deals with melanoma as their specialty.  

                                                                         

                                                                        Hope that helps!

                                                                        Hugs,

                                                                        Jackie

                                                                         

                                                                        jbronicki
                                                                        Participant

                                                                          The uncompensated program might not work for your mother due to her immigrant status, but social work may have ideas if there are programs, etc.

                                                                           

                                                                          jbronicki
                                                                          Participant

                                                                            The uncompensated program might not work for your mother due to her immigrant status, but social work may have ideas if there are programs, etc.

                                                                             

                                                                            jbronicki
                                                                            Participant
                                                                              jbronicki
                                                                              Participant
                                                                                jbronicki
                                                                                Participant
                                                                                  Mli0709
                                                                                  Participant

                                                                                    Hi Jackie,

                                                                                    Thank you for this encouraging post! I had a really crappy day today and reading your post really made my heart smile. God bless you! I am sorry to hear about your parents but rest assure you that they're smiling down from heaven knowing that their child is helping others who are faced with similar struggles.  It is a beautiful thing to be able to help others. Someone once told me that sometimes we go through things in life to make us stronger and to help others down the line. This is a perfect example of that. 

                                                                                    As far as MD Anderson, I called the financial clearance department and the woman I spoke to (very mean lady) told me that she cannot be accepted because she doesn't meet the 5 year US residency requirement (she only has 2.5 yr residency). I explain to her the situation and she told me they make no exceptions. I was speechless not only at the fact that they could not even attempt to make an exception given the circumstances but at the fact that this woman had no ounce of compassion in her voice. Not even an 'I'm so sorry you're going through this; I wish I could help. I got nothing, just – SORRY! Can't help ya. Anyways, I will call the patient advocate on Monday but I'm not sure how much luck I will have since she's technically not a patient?. I will give it a shot anyways. It doesn't hurt to try. Also, thank you for the link to the trials. I am also exploring those options while I continue to figure out her insurance situation. I am trying to stay strong and not give up. 

                                                                                    Thank you again for your beautiful post and God bless you again sis! 

                                                                                     

                                                                                    Maria

                                                                                     

                                                                                    Mli0709
                                                                                    Participant

                                                                                      Hi Jackie,

                                                                                      Thank you for this encouraging post! I had a really crappy day today and reading your post really made my heart smile. God bless you! I am sorry to hear about your parents but rest assure you that they're smiling down from heaven knowing that their child is helping others who are faced with similar struggles.  It is a beautiful thing to be able to help others. Someone once told me that sometimes we go through things in life to make us stronger and to help others down the line. This is a perfect example of that. 

                                                                                      As far as MD Anderson, I called the financial clearance department and the woman I spoke to (very mean lady) told me that she cannot be accepted because she doesn't meet the 5 year US residency requirement (she only has 2.5 yr residency). I explain to her the situation and she told me they make no exceptions. I was speechless not only at the fact that they could not even attempt to make an exception given the circumstances but at the fact that this woman had no ounce of compassion in her voice. Not even an 'I'm so sorry you're going through this; I wish I could help. I got nothing, just – SORRY! Can't help ya. Anyways, I will call the patient advocate on Monday but I'm not sure how much luck I will have since she's technically not a patient?. I will give it a shot anyways. It doesn't hurt to try. Also, thank you for the link to the trials. I am also exploring those options while I continue to figure out her insurance situation. I am trying to stay strong and not give up. 

                                                                                      Thank you again for your beautiful post and God bless you again sis! 

                                                                                       

                                                                                      Maria

                                                                                       

                                                                                      Mli0709
                                                                                      Participant

                                                                                        Hi Jackie,

                                                                                        Thank you for this encouraging post! I had a really crappy day today and reading your post really made my heart smile. God bless you! I am sorry to hear about your parents but rest assure you that they're smiling down from heaven knowing that their child is helping others who are faced with similar struggles.  It is a beautiful thing to be able to help others. Someone once told me that sometimes we go through things in life to make us stronger and to help others down the line. This is a perfect example of that. 

                                                                                        As far as MD Anderson, I called the financial clearance department and the woman I spoke to (very mean lady) told me that she cannot be accepted because she doesn't meet the 5 year US residency requirement (she only has 2.5 yr residency). I explain to her the situation and she told me they make no exceptions. I was speechless not only at the fact that they could not even attempt to make an exception given the circumstances but at the fact that this woman had no ounce of compassion in her voice. Not even an 'I'm so sorry you're going through this; I wish I could help. I got nothing, just – SORRY! Can't help ya. Anyways, I will call the patient advocate on Monday but I'm not sure how much luck I will have since she's technically not a patient?. I will give it a shot anyways. It doesn't hurt to try. Also, thank you for the link to the trials. I am also exploring those options while I continue to figure out her insurance situation. I am trying to stay strong and not give up. 

                                                                                        Thank you again for your beautiful post and God bless you again sis! 

                                                                                         

                                                                                        Maria

                                                                                         

                                                                                      Bubbles
                                                                                      Participant

                                                                                        Hi Maria….

                                                                                        So sorry for all you and your mom has been dealing with.  Sorry it took so long for me to get a good response to you – with limited access to computer and internet recently…it has taken me a minute.  I started to reach you by email…and you are more than welcome to continue to reach me there…but thought others might benefit from any info I can find..so….here we go.  (It may take a few posts because of MPIP spam blockers related to links.)

                                                                                        First off, here is a link to a PDF file that may be helpful giving a general overview of melanoma treatment:

                                                                                        http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/if-you-like-graphs-cool-pics-and-fairly.html

                                                                                        It's a little behind as far as the US…because Nivo (Opdivo) was approved in the US in 2014 for melanoma and the combo (ipi/nivo) was approved for use in melanoma in 2015.  But the basic info for both targeted therapy and immunotherapy is good.

                                                                                        As to your mom specifically: 

                                                                                        1.  Immunotherapy takes time…whether you are doing either of the anti-PD1 products (Nivolumab/Opdivo or Pembrolizumab/Keytruda), ipilimumab/ipi (an anti-CTLA4 product) or the combination of ipi/nivo.

                                                                                        2.  Immunotherapy can cause side effects that are immune related…they can exacerbate existing conditions like psoriasis, asthma, arthritis.  However, ipi is the bad boy of side effects.  You can certainly get them with the anti-PD1 products…but it is much more of a problem with ipi.

                                                                                        3.  BRAF inhibitors (which should always be combined with a MEK inhibitor so as to decrease resistance and side effects) work quickly to decrease tumor burden in BRAF positive patients.  Their downside is fairly frequent quick resistance to the meds via tumor mutations (about 9 months in many) though some are managed well on these products for years.  Many melanoma specialist use these drugs first on patients with high tumor burden to decrease it and then quickly switch patients to immunotherapy since it works more slowly.

                                                                                        4. Just because your mom's docs haven't mentioned her BRAF status…assume nothing!  You need to KNOW if she was tested…and what that testing showed.

                                                                                        5.  Clinical trials are great.  However, despite the belief that they are by the general public….they are rarely free.  In fact, they can be very expensive…especially if one has to travel for the care.  However, the drug company usually pays for the drug.  The insitution usually pays for the "study labs".  BUT…that leaves the patient holding the bag for travel (though there are groups who can help with that), food and lodging (though HOPE Lodge and other groups can help with that), as well as doc visit charges, radiology reading charges, all radiology that they consider NOT related to the trial but simply "routine scans for a melanoma patient", and everything from tubing to give the infusion with, to facilitiy charges!!!  In other words, most of the time..the patient…or the patients' insurance, is responsible for everything but the drug and a bit of lab.

                                                                                        None of this means…give up!!!!  More stuff particular to your mom next!  celeste

                                                                                        Bubbles
                                                                                        Participant

                                                                                          Hi Maria….

                                                                                          So sorry for all you and your mom has been dealing with.  Sorry it took so long for me to get a good response to you – with limited access to computer and internet recently…it has taken me a minute.  I started to reach you by email…and you are more than welcome to continue to reach me there…but thought others might benefit from any info I can find..so….here we go.  (It may take a few posts because of MPIP spam blockers related to links.)

                                                                                          First off, here is a link to a PDF file that may be helpful giving a general overview of melanoma treatment:

                                                                                          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/if-you-like-graphs-cool-pics-and-fairly.html

                                                                                          It's a little behind as far as the US…because Nivo (Opdivo) was approved in the US in 2014 for melanoma and the combo (ipi/nivo) was approved for use in melanoma in 2015.  But the basic info for both targeted therapy and immunotherapy is good.

                                                                                          As to your mom specifically: 

                                                                                          1.  Immunotherapy takes time…whether you are doing either of the anti-PD1 products (Nivolumab/Opdivo or Pembrolizumab/Keytruda), ipilimumab/ipi (an anti-CTLA4 product) or the combination of ipi/nivo.

                                                                                          2.  Immunotherapy can cause side effects that are immune related…they can exacerbate existing conditions like psoriasis, asthma, arthritis.  However, ipi is the bad boy of side effects.  You can certainly get them with the anti-PD1 products…but it is much more of a problem with ipi.

                                                                                          3.  BRAF inhibitors (which should always be combined with a MEK inhibitor so as to decrease resistance and side effects) work quickly to decrease tumor burden in BRAF positive patients.  Their downside is fairly frequent quick resistance to the meds via tumor mutations (about 9 months in many) though some are managed well on these products for years.  Many melanoma specialist use these drugs first on patients with high tumor burden to decrease it and then quickly switch patients to immunotherapy since it works more slowly.

                                                                                          4. Just because your mom's docs haven't mentioned her BRAF status…assume nothing!  You need to KNOW if she was tested…and what that testing showed.

                                                                                          5.  Clinical trials are great.  However, despite the belief that they are by the general public….they are rarely free.  In fact, they can be very expensive…especially if one has to travel for the care.  However, the drug company usually pays for the drug.  The insitution usually pays for the "study labs".  BUT…that leaves the patient holding the bag for travel (though there are groups who can help with that), food and lodging (though HOPE Lodge and other groups can help with that), as well as doc visit charges, radiology reading charges, all radiology that they consider NOT related to the trial but simply "routine scans for a melanoma patient", and everything from tubing to give the infusion with, to facilitiy charges!!!  In other words, most of the time..the patient…or the patients' insurance, is responsible for everything but the drug and a bit of lab.

                                                                                          None of this means…give up!!!!  More stuff particular to your mom next!  celeste

                                                                                          Bubbles
                                                                                          Participant

                                                                                            Hi Maria….

                                                                                            So sorry for all you and your mom has been dealing with.  Sorry it took so long for me to get a good response to you – with limited access to computer and internet recently…it has taken me a minute.  I started to reach you by email…and you are more than welcome to continue to reach me there…but thought others might benefit from any info I can find..so….here we go.  (It may take a few posts because of MPIP spam blockers related to links.)

                                                                                            First off, here is a link to a PDF file that may be helpful giving a general overview of melanoma treatment:

                                                                                            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/if-you-like-graphs-cool-pics-and-fairly.html

                                                                                            It's a little behind as far as the US…because Nivo (Opdivo) was approved in the US in 2014 for melanoma and the combo (ipi/nivo) was approved for use in melanoma in 2015.  But the basic info for both targeted therapy and immunotherapy is good.

                                                                                            As to your mom specifically: 

                                                                                            1.  Immunotherapy takes time…whether you are doing either of the anti-PD1 products (Nivolumab/Opdivo or Pembrolizumab/Keytruda), ipilimumab/ipi (an anti-CTLA4 product) or the combination of ipi/nivo.

                                                                                            2.  Immunotherapy can cause side effects that are immune related…they can exacerbate existing conditions like psoriasis, asthma, arthritis.  However, ipi is the bad boy of side effects.  You can certainly get them with the anti-PD1 products…but it is much more of a problem with ipi.

                                                                                            3.  BRAF inhibitors (which should always be combined with a MEK inhibitor so as to decrease resistance and side effects) work quickly to decrease tumor burden in BRAF positive patients.  Their downside is fairly frequent quick resistance to the meds via tumor mutations (about 9 months in many) though some are managed well on these products for years.  Many melanoma specialist use these drugs first on patients with high tumor burden to decrease it and then quickly switch patients to immunotherapy since it works more slowly.

                                                                                            4. Just because your mom's docs haven't mentioned her BRAF status…assume nothing!  You need to KNOW if she was tested…and what that testing showed.

                                                                                            5.  Clinical trials are great.  However, despite the belief that they are by the general public….they are rarely free.  In fact, they can be very expensive…especially if one has to travel for the care.  However, the drug company usually pays for the drug.  The insitution usually pays for the "study labs".  BUT…that leaves the patient holding the bag for travel (though there are groups who can help with that), food and lodging (though HOPE Lodge and other groups can help with that), as well as doc visit charges, radiology reading charges, all radiology that they consider NOT related to the trial but simply "routine scans for a melanoma patient", and everything from tubing to give the infusion with, to facilitiy charges!!!  In other words, most of the time..the patient…or the patients' insurance, is responsible for everything but the drug and a bit of lab.

                                                                                            None of this means…give up!!!!  More stuff particular to your mom next!  celeste

                                                                                            Bubbles
                                                                                            Participant

                                                                                              If I understand correctly…your mom was being given the ipi/nivo combo….then developed side effects…

                                                                                              1.  Sometimes steroids and a break will decrease side effects…then the patient can go on with their treatment and do ok.

                                                                                              2.  Sometimes the patient can't tolerate the current treatment and adjustments have to be made.

                                                                                              3.  Given that we KNOW that ipi causes more side effects than nivo…the proper decision could be to stop the Ipi, but continue the nivo.  I am very concerned that that approach was not taken with your mom.

                                                                                              4.  Traditional chemo like cisplatin, vincristin, etc does not work on melanoma.  Sometime dacarbazine is tried but it provides very little (if any) help and is a last resort….your mom does NOT seem to be in a place of last resort….at least as to the meds given thus far!!!

                                                                                              5.  Radiation and immunotherapy work very well in melanoma.  That may be the thing that help get rid of your mom's first lesions.  Radiation alone…not so effective in melanoma…but WITH immunotherapy….aswesome results for many:

                                                                                              Here is a post with many links within re radiation:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/review-of-abscopal-responses-after.html

                                                                                              Next….giving the patient time….    c

                                                                                              Bubbles
                                                                                              Participant

                                                                                                If I understand correctly…your mom was being given the ipi/nivo combo….then developed side effects…

                                                                                                1.  Sometimes steroids and a break will decrease side effects…then the patient can go on with their treatment and do ok.

                                                                                                2.  Sometimes the patient can't tolerate the current treatment and adjustments have to be made.

                                                                                                3.  Given that we KNOW that ipi causes more side effects than nivo…the proper decision could be to stop the Ipi, but continue the nivo.  I am very concerned that that approach was not taken with your mom.

                                                                                                4.  Traditional chemo like cisplatin, vincristin, etc does not work on melanoma.  Sometime dacarbazine is tried but it provides very little (if any) help and is a last resort….your mom does NOT seem to be in a place of last resort….at least as to the meds given thus far!!!

                                                                                                5.  Radiation and immunotherapy work very well in melanoma.  That may be the thing that help get rid of your mom's first lesions.  Radiation alone…not so effective in melanoma…but WITH immunotherapy….aswesome results for many:

                                                                                                Here is a post with many links within re radiation:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/review-of-abscopal-responses-after.html

                                                                                                Next….giving the patient time….    c

                                                                                                Bubbles
                                                                                                Participant

                                                                                                  If I understand correctly…your mom was being given the ipi/nivo combo….then developed side effects…

                                                                                                  1.  Sometimes steroids and a break will decrease side effects…then the patient can go on with their treatment and do ok.

                                                                                                  2.  Sometimes the patient can't tolerate the current treatment and adjustments have to be made.

                                                                                                  3.  Given that we KNOW that ipi causes more side effects than nivo…the proper decision could be to stop the Ipi, but continue the nivo.  I am very concerned that that approach was not taken with your mom.

                                                                                                  4.  Traditional chemo like cisplatin, vincristin, etc does not work on melanoma.  Sometime dacarbazine is tried but it provides very little (if any) help and is a last resort….your mom does NOT seem to be in a place of last resort….at least as to the meds given thus far!!!

                                                                                                  5.  Radiation and immunotherapy work very well in melanoma.  That may be the thing that help get rid of your mom's first lesions.  Radiation alone…not so effective in melanoma…but WITH immunotherapy….aswesome results for many:

                                                                                                  Here is a post with many links within re radiation:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/review-of-abscopal-responses-after.html

                                                                                                  Next….giving the patient time….    c

                                                                                                  Bubbles
                                                                                                  Participant

                                                                                                    Immunotherapy takes a minute to work…for some….the time can be much longer than we wish it and there can even be progression initially.  The mantra of melanoma experts to other oncologists has become:  "Give the patient time!!!!"

                                                                                                    Here are some links (and there are MANY more on my blog!!!):

                                                                                                    This one is when looking Pembrolizumab/Keytruda (anti-PD1 product basically identical to nivo in response rates and side effects) but the same applies to nivo and ipi:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/melanoma-big-dogs-review-results-of-pts.html

                                                                                                    Graph showing time to response in ipi and nivo:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html

                                                                                                    It doesn't seem that your mom was given adequate time!!  celeste

                                                                                                    Bubbles
                                                                                                    Participant

                                                                                                      Immunotherapy takes a minute to work…for some….the time can be much longer than we wish it and there can even be progression initially.  The mantra of melanoma experts to other oncologists has become:  "Give the patient time!!!!"

                                                                                                      Here are some links (and there are MANY more on my blog!!!):

                                                                                                      This one is when looking Pembrolizumab/Keytruda (anti-PD1 product basically identical to nivo in response rates and side effects) but the same applies to nivo and ipi:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/melanoma-big-dogs-review-results-of-pts.html

                                                                                                      Graph showing time to response in ipi and nivo:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html

                                                                                                      It doesn't seem that your mom was given adequate time!!  celeste

                                                                                                      Bubbles
                                                                                                      Participant

                                                                                                        Immunotherapy takes a minute to work…for some….the time can be much longer than we wish it and there can even be progression initially.  The mantra of melanoma experts to other oncologists has become:  "Give the patient time!!!!"

                                                                                                        Here are some links (and there are MANY more on my blog!!!):

                                                                                                        This one is when looking Pembrolizumab/Keytruda (anti-PD1 product basically identical to nivo in response rates and side effects) but the same applies to nivo and ipi:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/melanoma-big-dogs-review-results-of-pts.html

                                                                                                        Graph showing time to response in ipi and nivo:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html

                                                                                                        It doesn't seem that your mom was given adequate time!!  celeste

                                                                                                        Bubbles
                                                                                                        Participant

                                                                                                          Additional treatment options:

                                                                                                          As far as your mom's care….

                                                                                                          1.  Radiation and resuming nivo would probably be my first choice if I were in her shoes…for all the reasons noted above.  Yes, radiation is tough…but many of us here have withstood that and more!!!  I bet your mom can, too!!  At any rate…it beats standard chemo and the alternative of nothing!!  And, yes…you can do SRS to lung mets!!!

                                                                                                          2.  I would confirm her BRAF status…because that is an untapped treatment for her if she is BRAF positive.

                                                                                                          3.  There are many trials for which she would likely qualify.  Here is one for folks who progressed on immunotherapy that is currently enrolling:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/07/new-trial-recruiting-pembro-plus-mga271.html

                                                                                                          4.  Here is a link talking about new treatments that a melanoma expert thinks are promising:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html

                                                                                                          5.  If you google – clinicaltrials.gov – you will be routed to a site that lists all trials going.  You can put in melanoma and it will list them.  It notes if they are finished, active, still recruiting, etc.  It tells you the drugs used and treatment arms, inclusion and exclucion criteria, and where the trials are located.

                                                                                                          6.  If you are at all interested in a trial….CALL!!!  Even if you don't think it is an option due to logistics, etc.  Call the clinical trial coordinator.  All they can say is no.  Hard to hear of course, but nothing lost.

                                                                                                          7.  Very few trials allow folks with brain mets.   There are some, but they are few.  Which brings me to ask whether your mom has had an MRI of the brain???  She should have had one just to provide a complete assessment of her condition.  Once you are Stage IV with mets to lungs, etc…you must check the brain.  I hope they did.

                                                                                                          More ideas re specifics of your mom's status next

                                                                                                          Bubbles
                                                                                                          Participant

                                                                                                            Additional treatment options:

                                                                                                            As far as your mom's care….

                                                                                                            1.  Radiation and resuming nivo would probably be my first choice if I were in her shoes…for all the reasons noted above.  Yes, radiation is tough…but many of us here have withstood that and more!!!  I bet your mom can, too!!  At any rate…it beats standard chemo and the alternative of nothing!!  And, yes…you can do SRS to lung mets!!!

                                                                                                            2.  I would confirm her BRAF status…because that is an untapped treatment for her if she is BRAF positive.

                                                                                                            3.  There are many trials for which she would likely qualify.  Here is one for folks who progressed on immunotherapy that is currently enrolling:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/07/new-trial-recruiting-pembro-plus-mga271.html

                                                                                                            4.  Here is a link talking about new treatments that a melanoma expert thinks are promising:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html

                                                                                                            5.  If you google – clinicaltrials.gov – you will be routed to a site that lists all trials going.  You can put in melanoma and it will list them.  It notes if they are finished, active, still recruiting, etc.  It tells you the drugs used and treatment arms, inclusion and exclucion criteria, and where the trials are located.

                                                                                                            6.  If you are at all interested in a trial….CALL!!!  Even if you don't think it is an option due to logistics, etc.  Call the clinical trial coordinator.  All they can say is no.  Hard to hear of course, but nothing lost.

                                                                                                            7.  Very few trials allow folks with brain mets.   There are some, but they are few.  Which brings me to ask whether your mom has had an MRI of the brain???  She should have had one just to provide a complete assessment of her condition.  Once you are Stage IV with mets to lungs, etc…you must check the brain.  I hope they did.

                                                                                                            More ideas re specifics of your mom's status next

                                                                                                            Bubbles
                                                                                                            Participant

                                                                                                              Additional treatment options:

                                                                                                              As far as your mom's care….

                                                                                                              1.  Radiation and resuming nivo would probably be my first choice if I were in her shoes…for all the reasons noted above.  Yes, radiation is tough…but many of us here have withstood that and more!!!  I bet your mom can, too!!  At any rate…it beats standard chemo and the alternative of nothing!!  And, yes…you can do SRS to lung mets!!!

                                                                                                              2.  I would confirm her BRAF status…because that is an untapped treatment for her if she is BRAF positive.

                                                                                                              3.  There are many trials for which she would likely qualify.  Here is one for folks who progressed on immunotherapy that is currently enrolling:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/07/new-trial-recruiting-pembro-plus-mga271.html

                                                                                                              4.  Here is a link talking about new treatments that a melanoma expert thinks are promising:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html

                                                                                                              5.  If you google – clinicaltrials.gov – you will be routed to a site that lists all trials going.  You can put in melanoma and it will list them.  It notes if they are finished, active, still recruiting, etc.  It tells you the drugs used and treatment arms, inclusion and exclucion criteria, and where the trials are located.

                                                                                                              6.  If you are at all interested in a trial….CALL!!!  Even if you don't think it is an option due to logistics, etc.  Call the clinical trial coordinator.  All they can say is no.  Hard to hear of course, but nothing lost.

                                                                                                              7.  Very few trials allow folks with brain mets.   There are some, but they are few.  Which brings me to ask whether your mom has had an MRI of the brain???  She should have had one just to provide a complete assessment of her condition.  Once you are Stage IV with mets to lungs, etc…you must check the brain.  I hope they did.

                                                                                                              More ideas re specifics of your mom's status next

                                                                                                              Bubbles
                                                                                                              Participant

                                                                                                                Ok…so what to do with your mom's reality of insurance and immigrant status…

                                                                                                                This is why I HATE insurance and the medical system we have in this country that causes immediate doom and NO OPTIONS should you lose, or fail to have insurance…FOR ANY REASON!!!  We have created a medical care system that PROVIDES for the CEO's and business of insurance…..rather than the needs of the individual HUMAN patients for whom we are supposed to care!!  I deal with it everyday in my office….and I HATE it!!!  I hate big institutions like MDAnderson, too!!!  I try not to say too much about it here…because when folks need the help and can meet their demands…good help can be provided.  But, I have seen folks turned down too often from that institution (and others!!!) because they didn't have the most desireable monetary coverage (for business means!!!) or phsyical status (for trial results!!!)….ads with "cancer" crossed out, my ass!!!  If you got money, honey!!!  The ads don't include that line, now do they?  Hopefully, Biden can make some changes there are well….and folks like us will make some noise until we are actually heard.  Sorry, rant over…

                                                                                                                I am a fighter.  It is not for everyone. I fight for my patients everyday.  I fight for many folks who contact me through my blog.  It is what I do.  If I were in your shoes….this is the approach I would take:

                                                                                                                1.  County hospitals get tax payer dollars in order to provide indigent care.  That is our only "system" we have for folks who have lost their insurance or never had the funds or ability to acquire it in the first place.  They CANNOT refuse to treat those people.  They are given funds with which to do it.  However, the big loop hole they use is putting restrictions on that care by defining the "patient"….has to be citizen, has to have lived here for x number of years…etc.  Or by defining the "care"….has to be emergent…not long term…etc.  However, I would pass all their malarky by the by…and go to the social worker, CEO, whoever…with the KNOWN facts….you get money to provide indigent care!!!

                                                                                                                2.  Once care has been started….even if the patient doesn't pay you, is mean to you, says they don't like your service…you name it…you can't "abandon care".  I can't in my office.  Neither can hospitals.  You can give patients a notice….that within this much time you must find another resource…but you can't just drop them.  It gets even more complicated with a patient with cancer that hasn't be mean or threatening etc….because cancer care ALWAYS takes a minute.  You can't just say 'never mind'!!!  Now…clearly in cancer care and many other diseases…there comes a time when one can't be helped further.  However, with the information given…that doesn't seem to be the case with your mom. And if it is NOT the case….you can't make it the case just by saying it!!!  So, this is how I would approach it.  "You took her off the wrong medicine.  I want it restarted.  In the realm of melanoma…we do not give up just because a patient is Stage IV!!!  She needs an MRI of the brain (if she has not had one). You cannot make the decision that she is too far gone without one!"

                                                                                                                3.  I would take that mantra with the data I have given you to support it….continue nivo…..add radiation….check her brain…and then we will see if she really doesn't respond…..as far as I had to.  Sometimes the noisy wheel gets the oil.  It will be hard and frustrating and I know you are young and scared.  I am sorry this is how it is.  But, you can do it and you will get lots of support here.

                                                                                                                4.  Reach out to Tim of the Melanoma Research Foundation that runs this forum for help and resources. 

                                                                                                                5.  Reach out to actual hospitals that are classed as "non-profit charities" rather than county or 'for profit" insitiutions.  They might be able to provide your mom more services.

                                                                                                                Sorry this has all been so crazy…as though melanoma alone was not enough.  Hang in there.  Contact me any way you like.  Let us all know what you need.  Yours, celeste

                                                                                                                  WithinMySkin
                                                                                                                  Participant
                                                                                                                    Wow, Celeste, so much info!! As always, your research is amazing!! And please, keep up the rant. So many patients have no idea what kind of system they’re up against and have know way of knowing how to get decent care. The care EVERYONE deserves, not just those with the best insurance. We are all grateful for your constant dedication – thank you!
                                                                                                                    WithinMySkin
                                                                                                                    Participant
                                                                                                                      Wow, Celeste, so much info!! As always, your research is amazing!! And please, keep up the rant. So many patients have no idea what kind of system they’re up against and have know way of knowing how to get decent care. The care EVERYONE deserves, not just those with the best insurance. We are all grateful for your constant dedication – thank you!
                                                                                                                      WithinMySkin
                                                                                                                      Participant
                                                                                                                        Wow, Celeste, so much info!! As always, your research is amazing!! And please, keep up the rant. So many patients have no idea what kind of system they’re up against and have know way of knowing how to get decent care. The care EVERYONE deserves, not just those with the best insurance. We are all grateful for your constant dedication – thank you!
                                                                                                                        Lee Parlier
                                                                                                                        Participant

                                                                                                                          I learn so much reading your posts. Thank you for being so considerate to take the time to post details like this!!!!

                                                                                                                          Lee Parlier
                                                                                                                          Participant

                                                                                                                            I learn so much reading your posts. Thank you for being so considerate to take the time to post details like this!!!!

                                                                                                                            Lee Parlier
                                                                                                                            Participant

                                                                                                                              I learn so much reading your posts. Thank you for being so considerate to take the time to post details like this!!!!

                                                                                                                            Bubbles
                                                                                                                            Participant

                                                                                                                              Ok…so what to do with your mom's reality of insurance and immigrant status…

                                                                                                                              This is why I HATE insurance and the medical system we have in this country that causes immediate doom and NO OPTIONS should you lose, or fail to have insurance…FOR ANY REASON!!!  We have created a medical care system that PROVIDES for the CEO's and business of insurance…..rather than the needs of the individual HUMAN patients for whom we are supposed to care!!  I deal with it everyday in my office….and I HATE it!!!  I hate big institutions like MDAnderson, too!!!  I try not to say too much about it here…because when folks need the help and can meet their demands…good help can be provided.  But, I have seen folks turned down too often from that institution (and others!!!) because they didn't have the most desireable monetary coverage (for business means!!!) or phsyical status (for trial results!!!)….ads with "cancer" crossed out, my ass!!!  If you got money, honey!!!  The ads don't include that line, now do they?  Hopefully, Biden can make some changes there are well….and folks like us will make some noise until we are actually heard.  Sorry, rant over…

                                                                                                                              I am a fighter.  It is not for everyone. I fight for my patients everyday.  I fight for many folks who contact me through my blog.  It is what I do.  If I were in your shoes….this is the approach I would take:

                                                                                                                              1.  County hospitals get tax payer dollars in order to provide indigent care.  That is our only "system" we have for folks who have lost their insurance or never had the funds or ability to acquire it in the first place.  They CANNOT refuse to treat those people.  They are given funds with which to do it.  However, the big loop hole they use is putting restrictions on that care by defining the "patient"….has to be citizen, has to have lived here for x number of years…etc.  Or by defining the "care"….has to be emergent…not long term…etc.  However, I would pass all their malarky by the by…and go to the social worker, CEO, whoever…with the KNOWN facts….you get money to provide indigent care!!!

                                                                                                                              2.  Once care has been started….even if the patient doesn't pay you, is mean to you, says they don't like your service…you name it…you can't "abandon care".  I can't in my office.  Neither can hospitals.  You can give patients a notice….that within this much time you must find another resource…but you can't just drop them.  It gets even more complicated with a patient with cancer that hasn't be mean or threatening etc….because cancer care ALWAYS takes a minute.  You can't just say 'never mind'!!!  Now…clearly in cancer care and many other diseases…there comes a time when one can't be helped further.  However, with the information given…that doesn't seem to be the case with your mom. And if it is NOT the case….you can't make it the case just by saying it!!!  So, this is how I would approach it.  "You took her off the wrong medicine.  I want it restarted.  In the realm of melanoma…we do not give up just because a patient is Stage IV!!!  She needs an MRI of the brain (if she has not had one). You cannot make the decision that she is too far gone without one!"

                                                                                                                              3.  I would take that mantra with the data I have given you to support it….continue nivo…..add radiation….check her brain…and then we will see if she really doesn't respond…..as far as I had to.  Sometimes the noisy wheel gets the oil.  It will be hard and frustrating and I know you are young and scared.  I am sorry this is how it is.  But, you can do it and you will get lots of support here.

                                                                                                                              4.  Reach out to Tim of the Melanoma Research Foundation that runs this forum for help and resources. 

                                                                                                                              5.  Reach out to actual hospitals that are classed as "non-profit charities" rather than county or 'for profit" insitiutions.  They might be able to provide your mom more services.

                                                                                                                              Sorry this has all been so crazy…as though melanoma alone was not enough.  Hang in there.  Contact me any way you like.  Let us all know what you need.  Yours, celeste

                                                                                                                              Bubbles
                                                                                                                              Participant

                                                                                                                                Ok…so what to do with your mom's reality of insurance and immigrant status…

                                                                                                                                This is why I HATE insurance and the medical system we have in this country that causes immediate doom and NO OPTIONS should you lose, or fail to have insurance…FOR ANY REASON!!!  We have created a medical care system that PROVIDES for the CEO's and business of insurance…..rather than the needs of the individual HUMAN patients for whom we are supposed to care!!  I deal with it everyday in my office….and I HATE it!!!  I hate big institutions like MDAnderson, too!!!  I try not to say too much about it here…because when folks need the help and can meet their demands…good help can be provided.  But, I have seen folks turned down too often from that institution (and others!!!) because they didn't have the most desireable monetary coverage (for business means!!!) or phsyical status (for trial results!!!)….ads with "cancer" crossed out, my ass!!!  If you got money, honey!!!  The ads don't include that line, now do they?  Hopefully, Biden can make some changes there are well….and folks like us will make some noise until we are actually heard.  Sorry, rant over…

                                                                                                                                I am a fighter.  It is not for everyone. I fight for my patients everyday.  I fight for many folks who contact me through my blog.  It is what I do.  If I were in your shoes….this is the approach I would take:

                                                                                                                                1.  County hospitals get tax payer dollars in order to provide indigent care.  That is our only "system" we have for folks who have lost their insurance or never had the funds or ability to acquire it in the first place.  They CANNOT refuse to treat those people.  They are given funds with which to do it.  However, the big loop hole they use is putting restrictions on that care by defining the "patient"….has to be citizen, has to have lived here for x number of years…etc.  Or by defining the "care"….has to be emergent…not long term…etc.  However, I would pass all their malarky by the by…and go to the social worker, CEO, whoever…with the KNOWN facts….you get money to provide indigent care!!!

                                                                                                                                2.  Once care has been started….even if the patient doesn't pay you, is mean to you, says they don't like your service…you name it…you can't "abandon care".  I can't in my office.  Neither can hospitals.  You can give patients a notice….that within this much time you must find another resource…but you can't just drop them.  It gets even more complicated with a patient with cancer that hasn't be mean or threatening etc….because cancer care ALWAYS takes a minute.  You can't just say 'never mind'!!!  Now…clearly in cancer care and many other diseases…there comes a time when one can't be helped further.  However, with the information given…that doesn't seem to be the case with your mom. And if it is NOT the case….you can't make it the case just by saying it!!!  So, this is how I would approach it.  "You took her off the wrong medicine.  I want it restarted.  In the realm of melanoma…we do not give up just because a patient is Stage IV!!!  She needs an MRI of the brain (if she has not had one). You cannot make the decision that she is too far gone without one!"

                                                                                                                                3.  I would take that mantra with the data I have given you to support it….continue nivo…..add radiation….check her brain…and then we will see if she really doesn't respond…..as far as I had to.  Sometimes the noisy wheel gets the oil.  It will be hard and frustrating and I know you are young and scared.  I am sorry this is how it is.  But, you can do it and you will get lots of support here.

                                                                                                                                4.  Reach out to Tim of the Melanoma Research Foundation that runs this forum for help and resources. 

                                                                                                                                5.  Reach out to actual hospitals that are classed as "non-profit charities" rather than county or 'for profit" insitiutions.  They might be able to provide your mom more services.

                                                                                                                                Sorry this has all been so crazy…as though melanoma alone was not enough.  Hang in there.  Contact me any way you like.  Let us all know what you need.  Yours, celeste

                                                                                                                                Want2help
                                                                                                                                Participant
                                                                                                                                  Hi Maria,
                                                                                                                                  I’m so sorry about what your mother is going through and for you too, you are doing a great job supporting her.
                                                                                                                                  I would also ask about monotherapy with anti PD1. I also wonder if anyone has mentioned KIT inhibitors. I read somewhere that BRAF mutations are less common in mucosal melanoma and KIT mutations seem to be more common in mucosal melanoma than others.
                                                                                                                                  http://m.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-treating-targeted-therapy
                                                                                                                                  It might be worth just to ask. I wish you all the best!
                                                                                                                                  Want2help
                                                                                                                                  Participant
                                                                                                                                    Hi Maria,
                                                                                                                                    I’m so sorry about what your mother is going through and for you too, you are doing a great job supporting her.
                                                                                                                                    I would also ask about monotherapy with anti PD1. I also wonder if anyone has mentioned KIT inhibitors. I read somewhere that BRAF mutations are less common in mucosal melanoma and KIT mutations seem to be more common in mucosal melanoma than others.
                                                                                                                                    http://m.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-treating-targeted-therapy
                                                                                                                                    It might be worth just to ask. I wish you all the best!
                                                                                                                                    Want2help
                                                                                                                                    Participant
                                                                                                                                      Hi Maria,
                                                                                                                                      I’m so sorry about what your mother is going through and for you too, you are doing a great job supporting her.
                                                                                                                                      I would also ask about monotherapy with anti PD1. I also wonder if anyone has mentioned KIT inhibitors. I read somewhere that BRAF mutations are less common in mucosal melanoma and KIT mutations seem to be more common in mucosal melanoma than others.
                                                                                                                                      http://m.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-treating-targeted-therapy
                                                                                                                                      It might be worth just to ask. I wish you all the best!
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