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First oncologist after Stage 4 diagnosis

Forums General Melanoma Community First oncologist after Stage 4 diagnosis

  • Post
    randallgford
    Participant

      We had our first onc appt since diagnosis of malignant lung mass. I really liked the Doctor

      efficient, informative and great manner. I had a list of questions based on my research here on

      the board and he addressed them all before I asked. Game Plan: Brain MRI and PET scan

      Friday to see extent of disease. Will do BRAF analysis on tissue from lung biopsy. He is

      planning: Zelboraf if BRAF positive; IPI if negative. Will assess response then consider potential

      We had our first onc appt since diagnosis of malignant lung mass. I really liked the Doctor

      efficient, informative and great manner. I had a list of questions based on my research here on

      the board and he addressed them all before I asked. Game Plan: Brain MRI and PET scan

      Friday to see extent of disease. Will do BRAF analysis on tissue from lung biopsy. He is

      planning: Zelboraf if BRAF positive; IPI if negative. Will assess response then consider potential

      clinical trials at Sylvester Miami. Based on CT scan, he doubts 3.8,m lungmass is isolated so

      isnt talking surgery as yet. He also trained with and knows the Dr. at Sylvester Center

      Miami we used with first 2001 diagnosis (2b WLE with negative SNB). My husand is a very

      calm person (I've always jokingly called him my Dalia Lama (sp?)) and has a positive attitude so

      the oncologist said these people seem to respond well. When I asked best/worse case scenario, he

      said "I can see you've done your homework so you know the stats- but forget them because he is

      an individual and the only stat I need to think of is his – and it is unknown. I really liked that answer.

      I now have hope and a more positive attitude. 

      Vicki, his wife

    Viewing 17 reply threads
    • Replies
        akls
        Participant

          Vicki,

          I'm so glad you had a good appointment.  I love the answer your Dr. gave you about statistics.  It sounds like your husband is in good hands.

          Amy S. in Michigan

          akls
          Participant

            Vicki,

            I'm so glad you had a good appointment.  I love the answer your Dr. gave you about statistics.  It sounds like your husband is in good hands.

            Amy S. in Michigan

            akls
            Participant

              Vicki,

              I'm so glad you had a good appointment.  I love the answer your Dr. gave you about statistics.  It sounds like your husband is in good hands.

              Amy S. in Michigan

              POW
              Participant

                I am glad that you like your oncologist and had a good, informative appointment. Obviously, you can't decide on a treatment plan until you know if the tumor has the BRAF mutation and you get the results of the brain scans. Once you have those data, I strongly suggest that you bring copies all of the images and reports and consult with the melanoma clinic and Moffitt before deciding how to proceed.

                My concern is that your oncologist suggested that his first plan of attack would be Zelboraf. While Z can be a wonder drug for people whose life is imminently threatened by the number and/or location of their tumors, it's effect is temporary. Yes, sure, there are some people who have been on Z for a long time. But the vast majority become resistant, and when the tumors come back they tend to be very aggressive.

                That's what happened to my brother. Zelboraf worked well for him for 4 months. But a single lung tumor started to grow again, indicating that his tumors were starting to become resistant. His doctor took him off Z for 30 days to prepare for either a clinical trial or for ipi. At the end of 30 days my brother had 6 brain mets and was disqualified from all available clinical trials. He had a bad reaction to his first dose of ipi and can't get it again. He is now very debilitated and nothing else works very well on brain mets so there is no effective treatment his doctor can offer him. 

                So based on my experience, I would reserve Zelboraf for when it is absolutely, critically needed. But when newly diagnosed and not at the point of death, I would advise a treatment that has a better chance of a long-term response. I would first go with a clinical trial, if possible. Probably anti-PD1 or some type of combination therapy that aims to give a one-two punch to the melanoma. I would also consider a BRAF/MEK combo, which is soon to be approved by the FDA.

                Zelboraf is an exciting new weapon in the melanoma arsenal. But if you progress on Zelboraf you may not have enough time left to try some of the new immune-based treatments that take longer to work but have a better chance of long-term effectiveness. That is why I suggest you consult with the melanoma specialists at Moffitt before you make your final decision. 

                POW
                Participant

                  I am glad that you like your oncologist and had a good, informative appointment. Obviously, you can't decide on a treatment plan until you know if the tumor has the BRAF mutation and you get the results of the brain scans. Once you have those data, I strongly suggest that you bring copies all of the images and reports and consult with the melanoma clinic and Moffitt before deciding how to proceed.

                  My concern is that your oncologist suggested that his first plan of attack would be Zelboraf. While Z can be a wonder drug for people whose life is imminently threatened by the number and/or location of their tumors, it's effect is temporary. Yes, sure, there are some people who have been on Z for a long time. But the vast majority become resistant, and when the tumors come back they tend to be very aggressive.

                  That's what happened to my brother. Zelboraf worked well for him for 4 months. But a single lung tumor started to grow again, indicating that his tumors were starting to become resistant. His doctor took him off Z for 30 days to prepare for either a clinical trial or for ipi. At the end of 30 days my brother had 6 brain mets and was disqualified from all available clinical trials. He had a bad reaction to his first dose of ipi and can't get it again. He is now very debilitated and nothing else works very well on brain mets so there is no effective treatment his doctor can offer him. 

                  So based on my experience, I would reserve Zelboraf for when it is absolutely, critically needed. But when newly diagnosed and not at the point of death, I would advise a treatment that has a better chance of a long-term response. I would first go with a clinical trial, if possible. Probably anti-PD1 or some type of combination therapy that aims to give a one-two punch to the melanoma. I would also consider a BRAF/MEK combo, which is soon to be approved by the FDA.

                  Zelboraf is an exciting new weapon in the melanoma arsenal. But if you progress on Zelboraf you may not have enough time left to try some of the new immune-based treatments that take longer to work but have a better chance of long-term effectiveness. That is why I suggest you consult with the melanoma specialists at Moffitt before you make your final decision. 

                  POW
                  Participant

                    I am glad that you like your oncologist and had a good, informative appointment. Obviously, you can't decide on a treatment plan until you know if the tumor has the BRAF mutation and you get the results of the brain scans. Once you have those data, I strongly suggest that you bring copies all of the images and reports and consult with the melanoma clinic and Moffitt before deciding how to proceed.

                    My concern is that your oncologist suggested that his first plan of attack would be Zelboraf. While Z can be a wonder drug for people whose life is imminently threatened by the number and/or location of their tumors, it's effect is temporary. Yes, sure, there are some people who have been on Z for a long time. But the vast majority become resistant, and when the tumors come back they tend to be very aggressive.

                    That's what happened to my brother. Zelboraf worked well for him for 4 months. But a single lung tumor started to grow again, indicating that his tumors were starting to become resistant. His doctor took him off Z for 30 days to prepare for either a clinical trial or for ipi. At the end of 30 days my brother had 6 brain mets and was disqualified from all available clinical trials. He had a bad reaction to his first dose of ipi and can't get it again. He is now very debilitated and nothing else works very well on brain mets so there is no effective treatment his doctor can offer him. 

                    So based on my experience, I would reserve Zelboraf for when it is absolutely, critically needed. But when newly diagnosed and not at the point of death, I would advise a treatment that has a better chance of a long-term response. I would first go with a clinical trial, if possible. Probably anti-PD1 or some type of combination therapy that aims to give a one-two punch to the melanoma. I would also consider a BRAF/MEK combo, which is soon to be approved by the FDA.

                    Zelboraf is an exciting new weapon in the melanoma arsenal. But if you progress on Zelboraf you may not have enough time left to try some of the new immune-based treatments that take longer to work but have a better chance of long-term effectiveness. That is why I suggest you consult with the melanoma specialists at Moffitt before you make your final decision. 

                    WendyPam
                    Participant

                      Hi Vicki,

                       

                      I'm glad that your appointment went well today. However, I hope that you made an appointment with Dr. Weber at Moffitt before deciding on any treatment plan. I recently lost my Mom to Melanoma. I regret that we stayed in Miami and didn't get to Moffitt or MDAnderson sooner. I'm not saying that the outcome would have been different. It's just that Dr. Weber is a highly regarded leading expert in the world of Melanoma. Also, his center can offer so many more clinical trials then are not available in Miami. Keep us posted..

                       

                      Regards,

                      Wendy

                      WendyPam
                      Participant

                        Hi Vicki,

                         

                        I'm glad that your appointment went well today. However, I hope that you made an appointment with Dr. Weber at Moffitt before deciding on any treatment plan. I recently lost my Mom to Melanoma. I regret that we stayed in Miami and didn't get to Moffitt or MDAnderson sooner. I'm not saying that the outcome would have been different. It's just that Dr. Weber is a highly regarded leading expert in the world of Melanoma. Also, his center can offer so many more clinical trials then are not available in Miami. Keep us posted..

                         

                        Regards,

                        Wendy

                        WendyPam
                        Participant

                          Hi Vicki,

                           

                          I'm glad that your appointment went well today. However, I hope that you made an appointment with Dr. Weber at Moffitt before deciding on any treatment plan. I recently lost my Mom to Melanoma. I regret that we stayed in Miami and didn't get to Moffitt or MDAnderson sooner. I'm not saying that the outcome would have been different. It's just that Dr. Weber is a highly regarded leading expert in the world of Melanoma. Also, his center can offer so many more clinical trials then are not available in Miami. Keep us posted..

                           

                          Regards,

                          Wendy

                            randallgford
                            Participant

                              Thanks for your input. I have sent everything to Moffit, but my husband is resistant to

                              traveling because he thinks Sylvester Center is fine. But I agree and it looks like I am

                              going to have to insist. Since we have the scans today Ill go ahead with them and send

                              those results over to Moffit as well and then go.

                              Thanks so much for the advice.

                              randallgford
                              Participant

                                Thanks for your input. I have sent everything to Moffit, but my husband is resistant to

                                traveling because he thinks Sylvester Center is fine. But I agree and it looks like I am

                                going to have to insist. Since we have the scans today Ill go ahead with them and send

                                those results over to Moffit as well and then go.

                                Thanks so much for the advice.

                                randallgford
                                Participant

                                  Thanks for your input. I have sent everything to Moffit, but my husband is resistant to

                                  traveling because he thinks Sylvester Center is fine. But I agree and it looks like I am

                                  going to have to insist. Since we have the scans today Ill go ahead with them and send

                                  those results over to Moffit as well and then go.

                                  Thanks so much for the advice.

                                  randallgford
                                  Participant

                                    I hope this isnt a stupid question, but if you go to Moffit and decide on a treatment

                                    plan, is it administered there? Do you do treatments at home and then just go back for

                                    say weekly or monthly appts?

                                    My husband is so worried about job (bills/insurance) which I tell him, you are fighting

                                    for your life so that is all that matters. But there is some practicality involved I guess.

                                    Thanks and bear with my naivete.

                                    Vicki

                                    randallgford
                                    Participant

                                      I hope this isnt a stupid question, but if you go to Moffit and decide on a treatment

                                      plan, is it administered there? Do you do treatments at home and then just go back for

                                      say weekly or monthly appts?

                                      My husband is so worried about job (bills/insurance) which I tell him, you are fighting

                                      for your life so that is all that matters. But there is some practicality involved I guess.

                                      Thanks and bear with my naivete.

                                      Vicki

                                      randallgford
                                      Participant

                                        I hope this isnt a stupid question, but if you go to Moffit and decide on a treatment

                                        plan, is it administered there? Do you do treatments at home and then just go back for

                                        say weekly or monthly appts?

                                        My husband is so worried about job (bills/insurance) which I tell him, you are fighting

                                        for your life so that is all that matters. But there is some practicality involved I guess.

                                        Thanks and bear with my naivete.

                                        Vicki

                                        buffcody
                                        Participant

                                          You and your husband feel comfortable with the oncologist you are working with.  He is anxious about shifting to Tampa for a number of reasons.  Why not just look upon seeing Dr. Weber (I sometimes feel on my time on the Forum that he must be superhuman if he ends up seeing everyone in the Florida environs and everywhere else that has melanoma.) as a second opinion consult.  My gut reaction is that your current doctor will be open to dialogue with you about Zelboraf, which is down the line because the BRAF status is not determined, and will be supportive of your informing yourself about the disease through your own self-education in places like our Forum and your seeking a second opinion.  You may further down the line have to make a choice of treatment venues.  Right now, you have enough on your plate.  Take some deep breaths, don't add further tension.  I don't think you need to be persuading your husband to leave his comfort zone right now.  Despite being the Dalai Llama, I'm sure he is like most of us mortals.  I have a good oncologist at a good institution here in Michigan, but I have taken the trip to New York twice in the last 8 months to get a second opinion when big choices were at hand.  And, in my case, the experts at Sloan Kettering affirmed the treatment, surgery for lung, watch and wait, ipi, and SRS for brain mets, that was recommended here.  I would not want to travel to New York very often!  I'm 72 and after a lung surgery to remove one large met (no others), and SRS to shrink to small brain tumors,a full course of ipi, and maybe with a small subcutaneous tumor now,  I'm very, very hopeful and feeling just great!

                                          buffcody
                                          Participant

                                            You and your husband feel comfortable with the oncologist you are working with.  He is anxious about shifting to Tampa for a number of reasons.  Why not just look upon seeing Dr. Weber (I sometimes feel on my time on the Forum that he must be superhuman if he ends up seeing everyone in the Florida environs and everywhere else that has melanoma.) as a second opinion consult.  My gut reaction is that your current doctor will be open to dialogue with you about Zelboraf, which is down the line because the BRAF status is not determined, and will be supportive of your informing yourself about the disease through your own self-education in places like our Forum and your seeking a second opinion.  You may further down the line have to make a choice of treatment venues.  Right now, you have enough on your plate.  Take some deep breaths, don't add further tension.  I don't think you need to be persuading your husband to leave his comfort zone right now.  Despite being the Dalai Llama, I'm sure he is like most of us mortals.  I have a good oncologist at a good institution here in Michigan, but I have taken the trip to New York twice in the last 8 months to get a second opinion when big choices were at hand.  And, in my case, the experts at Sloan Kettering affirmed the treatment, surgery for lung, watch and wait, ipi, and SRS for brain mets, that was recommended here.  I would not want to travel to New York very often!  I'm 72 and after a lung surgery to remove one large met (no others), and SRS to shrink to small brain tumors,a full course of ipi, and maybe with a small subcutaneous tumor now,  I'm very, very hopeful and feeling just great!

                                            buffcody
                                            Participant

                                              You and your husband feel comfortable with the oncologist you are working with.  He is anxious about shifting to Tampa for a number of reasons.  Why not just look upon seeing Dr. Weber (I sometimes feel on my time on the Forum that he must be superhuman if he ends up seeing everyone in the Florida environs and everywhere else that has melanoma.) as a second opinion consult.  My gut reaction is that your current doctor will be open to dialogue with you about Zelboraf, which is down the line because the BRAF status is not determined, and will be supportive of your informing yourself about the disease through your own self-education in places like our Forum and your seeking a second opinion.  You may further down the line have to make a choice of treatment venues.  Right now, you have enough on your plate.  Take some deep breaths, don't add further tension.  I don't think you need to be persuading your husband to leave his comfort zone right now.  Despite being the Dalai Llama, I'm sure he is like most of us mortals.  I have a good oncologist at a good institution here in Michigan, but I have taken the trip to New York twice in the last 8 months to get a second opinion when big choices were at hand.  And, in my case, the experts at Sloan Kettering affirmed the treatment, surgery for lung, watch and wait, ipi, and SRS for brain mets, that was recommended here.  I would not want to travel to New York very often!  I'm 72 and after a lung surgery to remove one large met (no others), and SRS to shrink to small brain tumors,a full course of ipi, and maybe with a small subcutaneous tumor now,  I'm very, very hopeful and feeling just great!

                                              randallgford
                                              Participant

                                                Thanks so much – great advice as well, and its the first time I laughed in the past week ๐Ÿ™‚ as Randall is

                                                definitey a mere mortal. (Love is blind as they say.) I like the idea of a second opinion consult. I appreciate

                                                everybody's input as we all have different experiences.

                                                Vicki

                                                randallgford
                                                Participant

                                                  Thanks so much – great advice as well, and its the first time I laughed in the past week ๐Ÿ™‚ as Randall is

                                                  definitey a mere mortal. (Love is blind as they say.) I like the idea of a second opinion consult. I appreciate

                                                  everybody's input as we all have different experiences.

                                                  Vicki

                                                  randallgford
                                                  Participant

                                                    Thanks so much – great advice as well, and its the first time I laughed in the past week ๐Ÿ™‚ as Randall is

                                                    definitey a mere mortal. (Love is blind as they say.) I like the idea of a second opinion consult. I appreciate

                                                    everybody's input as we all have different experiences.

                                                    Vicki

                                                    kylez
                                                    Participant

                                                      Vicki,

                                                      I'm also *all* for getting second opinions, which Moffitt would be great for. Moffitt is also an NCI designated cancer center.

                                                      But, speaking as someone who's never been there, Sylvester certainly seems like an appropriate place to get treatment for advanced melanoma as well.  

                                                      The Sylvester Comprehensive Cancer Center where you're going sounds like it's an academic hospital — which is a good thing. It is listed on both this site's doctor finder and also the doctor finder at the Aim at Melanoma web site. Their listing says: 

                                                       

                                                      University of Miami

                                                      Sylvester Comprehensive Cancer Center

                                                      1475 N.W. 12th Ave.

                                                      Miami, FL  33136

                                                      http://www.sylvester.org

                                                      Lynn Feun, MD  305-243-6636

                                                      John Goldberg, MD  305-243-2795 – Pediatric

                                                      James Grichnik, MD,  Dir. of Melanoma Program  305-243-6045

                                                       

                                                      There's are more excellent melanoma specialists and clinics than the three that perhaps get the most mentions here (Moffitt, MDA and Sloan). I go to a melanoma clinic (UCSF) that's not one of three for example.

                                                      kylez
                                                      Participant

                                                        Vicki,

                                                        I'm also *all* for getting second opinions, which Moffitt would be great for. Moffitt is also an NCI designated cancer center.

                                                        But, speaking as someone who's never been there, Sylvester certainly seems like an appropriate place to get treatment for advanced melanoma as well.  

                                                        The Sylvester Comprehensive Cancer Center where you're going sounds like it's an academic hospital — which is a good thing. It is listed on both this site's doctor finder and also the doctor finder at the Aim at Melanoma web site. Their listing says: 

                                                         

                                                        University of Miami

                                                        Sylvester Comprehensive Cancer Center

                                                        1475 N.W. 12th Ave.

                                                        Miami, FL  33136

                                                        http://www.sylvester.org

                                                        Lynn Feun, MD  305-243-6636

                                                        John Goldberg, MD  305-243-2795 – Pediatric

                                                        James Grichnik, MD,  Dir. of Melanoma Program  305-243-6045

                                                         

                                                        There's are more excellent melanoma specialists and clinics than the three that perhaps get the most mentions here (Moffitt, MDA and Sloan). I go to a melanoma clinic (UCSF) that's not one of three for example.

                                                        kylez
                                                        Participant

                                                          Vicki,

                                                          I'm also *all* for getting second opinions, which Moffitt would be great for. Moffitt is also an NCI designated cancer center.

                                                          But, speaking as someone who's never been there, Sylvester certainly seems like an appropriate place to get treatment for advanced melanoma as well.  

                                                          The Sylvester Comprehensive Cancer Center where you're going sounds like it's an academic hospital — which is a good thing. It is listed on both this site's doctor finder and also the doctor finder at the Aim at Melanoma web site. Their listing says: 

                                                           

                                                          University of Miami

                                                          Sylvester Comprehensive Cancer Center

                                                          1475 N.W. 12th Ave.

                                                          Miami, FL  33136

                                                          http://www.sylvester.org

                                                          Lynn Feun, MD  305-243-6636

                                                          John Goldberg, MD  305-243-2795 – Pediatric

                                                          James Grichnik, MD,  Dir. of Melanoma Program  305-243-6045

                                                           

                                                          There's are more excellent melanoma specialists and clinics than the three that perhaps get the most mentions here (Moffitt, MDA and Sloan). I go to a melanoma clinic (UCSF) that's not one of three for example.

                                                          kylez
                                                          Participant

                                                            I misread your message — since Sylvester is *not* where you're actually going — melanoma specialist clinics are good things to go to. Two melanoma specialist finders (with overlapping but not identical listings) are:

                                                            http://www.melanoma.org/learn-more/melanoma-treatment-center-finder

                                                            and

                                                            http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html

                                                            Just put Florida into each one of them. If your current doctor is not a listed melanoma specialist, would strongly recommend getting a second opinion (at the least) from someone who is. Even if your current doctor sounds like he or she is on top of things.

                                                            kylez
                                                            Participant

                                                              I misread your message — since Sylvester is *not* where you're actually going — melanoma specialist clinics are good things to go to. Two melanoma specialist finders (with overlapping but not identical listings) are:

                                                              http://www.melanoma.org/learn-more/melanoma-treatment-center-finder

                                                              and

                                                              http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html

                                                              Just put Florida into each one of them. If your current doctor is not a listed melanoma specialist, would strongly recommend getting a second opinion (at the least) from someone who is. Even if your current doctor sounds like he or she is on top of things.

                                                              kylez
                                                              Participant

                                                                I misread your message — since Sylvester is *not* where you're actually going — melanoma specialist clinics are good things to go to. Two melanoma specialist finders (with overlapping but not identical listings) are:

                                                                http://www.melanoma.org/learn-more/melanoma-treatment-center-finder

                                                                and

                                                                http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html

                                                                Just put Florida into each one of them. If your current doctor is not a listed melanoma specialist, would strongly recommend getting a second opinion (at the least) from someone who is. Even if your current doctor sounds like he or she is on top of things.

                                                                POW
                                                                Participant

                                                                  Vicky, the main reason to go to Moffitt at this time is to get a second opinion about your husband's diagnosis and to discuss the pros and cons of various treatment options. If you decide on an FDA approved treatment, that can probably be done in your home town. 

                                                                  The other reason to go to Moffitt is to discuss clinical trials. In the last few years there has been an explosion of new understanding about and treatments for melanoma. Some of the most promising treatments are just entering clinical trials so that's the only way you can get access to them. So when you go to Moffitt, you will probably discuss whether to try an approved treatment or a clinical trial. Or perhaps an approved treatment first and then a clinical trial as a Plan B. (It's always good to have a Plan B.)

                                                                  If you participate in a clinical trial, you will probably have to go to Moffitt frequently, especially during the first few weeks of the treatment when they need to monitor the patient carefully for side effects or take tissue samples for genetic analysis and so on. But the number and frequency of visits is different for each trial.

                                                                  I think it's good that your husband is concerned about continuing to work and continung his health insurance (DAMN the for-profit American healthcare system!). That means that he intends to beat this disease and resume his normal life some day. So I applaud his determination. I wouldn't poo-poo his concerns– they are real and need to be factored into your decision. But you could research what type of help is available if he needs to travel to Moffitt frequently– Angel Flights, American Cancer Society travel assistance, some clinical trials will subsidize travel and so on. Be sure to talk to the Moffitt social worker while you are there and ask what resources would be available if you decide on a clinical trial.

                                                                  POW
                                                                  Participant

                                                                    Vicky, the main reason to go to Moffitt at this time is to get a second opinion about your husband's diagnosis and to discuss the pros and cons of various treatment options. If you decide on an FDA approved treatment, that can probably be done in your home town. 

                                                                    The other reason to go to Moffitt is to discuss clinical trials. In the last few years there has been an explosion of new understanding about and treatments for melanoma. Some of the most promising treatments are just entering clinical trials so that's the only way you can get access to them. So when you go to Moffitt, you will probably discuss whether to try an approved treatment or a clinical trial. Or perhaps an approved treatment first and then a clinical trial as a Plan B. (It's always good to have a Plan B.)

                                                                    If you participate in a clinical trial, you will probably have to go to Moffitt frequently, especially during the first few weeks of the treatment when they need to monitor the patient carefully for side effects or take tissue samples for genetic analysis and so on. But the number and frequency of visits is different for each trial.

                                                                    I think it's good that your husband is concerned about continuing to work and continung his health insurance (DAMN the for-profit American healthcare system!). That means that he intends to beat this disease and resume his normal life some day. So I applaud his determination. I wouldn't poo-poo his concerns– they are real and need to be factored into your decision. But you could research what type of help is available if he needs to travel to Moffitt frequently– Angel Flights, American Cancer Society travel assistance, some clinical trials will subsidize travel and so on. Be sure to talk to the Moffitt social worker while you are there and ask what resources would be available if you decide on a clinical trial.

                                                                    POW
                                                                    Participant

                                                                      Vicky, the main reason to go to Moffitt at this time is to get a second opinion about your husband's diagnosis and to discuss the pros and cons of various treatment options. If you decide on an FDA approved treatment, that can probably be done in your home town. 

                                                                      The other reason to go to Moffitt is to discuss clinical trials. In the last few years there has been an explosion of new understanding about and treatments for melanoma. Some of the most promising treatments are just entering clinical trials so that's the only way you can get access to them. So when you go to Moffitt, you will probably discuss whether to try an approved treatment or a clinical trial. Or perhaps an approved treatment first and then a clinical trial as a Plan B. (It's always good to have a Plan B.)

                                                                      If you participate in a clinical trial, you will probably have to go to Moffitt frequently, especially during the first few weeks of the treatment when they need to monitor the patient carefully for side effects or take tissue samples for genetic analysis and so on. But the number and frequency of visits is different for each trial.

                                                                      I think it's good that your husband is concerned about continuing to work and continung his health insurance (DAMN the for-profit American healthcare system!). That means that he intends to beat this disease and resume his normal life some day. So I applaud his determination. I wouldn't poo-poo his concerns– they are real and need to be factored into your decision. But you could research what type of help is available if he needs to travel to Moffitt frequently– Angel Flights, American Cancer Society travel assistance, some clinical trials will subsidize travel and so on. Be sure to talk to the Moffitt social worker while you are there and ask what resources would be available if you decide on a clinical trial.

                                                                    JerryfromFauq
                                                                    Participant

                                                                      In general I prefer surgery if the tumor load is very low or only singular.  This is hard to tell in the lungs at the start as CT and PET scans often miss tiny groups of cancer cells. 

                                                                      Zelboraf is great for reducing the tumor load, if it is large or very fast growing.  IL-2 and Ipi (Yervoy) are more likely to provide long term effects, especially the earlier they are taken, with smaller tumor loads. They are often much harder on one than the Zelboraf, so I go with their administration when one is at the strongest point physically.   IL-2 provides the quickest response as to its working systemically while Ipi can take much longer to be effective if it works. Both can be rough on the recipient.

                                                                      Timing, tumor load, speed of progression, and physical condition are all items to be factored in.

                                                                      In general I prefer surgery if the tumor load is very low or only singular.  This is hard to tell in the lungs at the start as CT and PET scans often miss tiny groups of cancer cells. 

                                                                      Zelboraf is great for reducing the tumor load, if they are large or very fast growing. IL-2 and Ipi (Yervoy) are more likely to provide long term effects, especially the earlier they are taken, with smaller tumor loads. They are often much harder on one than the Zelboraf so I go with their administration when one is at the strongest point physically. IL-2 provides the quickest response as to its working systemically while Ipi can take much longer to be effective if it works.

                                                                      Timing, tumor load, speed of progression, and physical condition are all factors to be factored in.

                                                                       

                                                                       

                                                                       

                                                                       

                                                                       

                                                                       

                                                                       

                                                                       

                                                                       

                                                                       

                                                                       

                                                                       

                                                                       

                                                                      i

                                                                       

                                                                       

                                                                      JerryfromFauq
                                                                      Participant

                                                                        In general I prefer surgery if the tumor load is very low or only singular.  This is hard to tell in the lungs at the start as CT and PET scans often miss tiny groups of cancer cells. 

                                                                        Zelboraf is great for reducing the tumor load, if it is large or very fast growing.  IL-2 and Ipi (Yervoy) are more likely to provide long term effects, especially the earlier they are taken, with smaller tumor loads. They are often much harder on one than the Zelboraf, so I go with their administration when one is at the strongest point physically.   IL-2 provides the quickest response as to its working systemically while Ipi can take much longer to be effective if it works. Both can be rough on the recipient.

                                                                        Timing, tumor load, speed of progression, and physical condition are all items to be factored in.

                                                                        In general I prefer surgery if the tumor load is very low or only singular.  This is hard to tell in the lungs at the start as CT and PET scans often miss tiny groups of cancer cells. 

                                                                        Zelboraf is great for reducing the tumor load, if they are large or very fast growing. IL-2 and Ipi (Yervoy) are more likely to provide long term effects, especially the earlier they are taken, with smaller tumor loads. They are often much harder on one than the Zelboraf so I go with their administration when one is at the strongest point physically. IL-2 provides the quickest response as to its working systemically while Ipi can take much longer to be effective if it works.

                                                                        Timing, tumor load, speed of progression, and physical condition are all factors to be factored in.

                                                                         

                                                                         

                                                                         

                                                                         

                                                                         

                                                                         

                                                                         

                                                                         

                                                                         

                                                                         

                                                                         

                                                                         

                                                                         

                                                                        i

                                                                         

                                                                         

                                                                        JerryfromFauq
                                                                        Participant

                                                                          In general I prefer surgery if the tumor load is very low or only singular.  This is hard to tell in the lungs at the start as CT and PET scans often miss tiny groups of cancer cells. 

                                                                          Zelboraf is great for reducing the tumor load, if it is large or very fast growing.  IL-2 and Ipi (Yervoy) are more likely to provide long term effects, especially the earlier they are taken, with smaller tumor loads. They are often much harder on one than the Zelboraf, so I go with their administration when one is at the strongest point physically.   IL-2 provides the quickest response as to its working systemically while Ipi can take much longer to be effective if it works. Both can be rough on the recipient.

                                                                          Timing, tumor load, speed of progression, and physical condition are all items to be factored in.

                                                                          In general I prefer surgery if the tumor load is very low or only singular.  This is hard to tell in the lungs at the start as CT and PET scans often miss tiny groups of cancer cells. 

                                                                          Zelboraf is great for reducing the tumor load, if they are large or very fast growing. IL-2 and Ipi (Yervoy) are more likely to provide long term effects, especially the earlier they are taken, with smaller tumor loads. They are often much harder on one than the Zelboraf so I go with their administration when one is at the strongest point physically. IL-2 provides the quickest response as to its working systemically while Ipi can take much longer to be effective if it works.

                                                                          Timing, tumor load, speed of progression, and physical condition are all factors to be factored in.

                                                                           

                                                                           

                                                                           

                                                                           

                                                                           

                                                                           

                                                                           

                                                                           

                                                                           

                                                                           

                                                                           

                                                                           

                                                                           

                                                                          i

                                                                           

                                                                           

                                                                            randallgford
                                                                            Participant

                                                                              Thanks, all good advice. Will consider all after Wednesday appt with test results and suggested regimen.

                                                                              The local oncologist trained with Lynn Feun at Sylvester who we used the first go-around 12 yrs ago so

                                                                              at the least we will get a second opinion from either him or a consult at Moffit.

                                                                              randallgford
                                                                              Participant

                                                                                Thanks, all good advice. Will consider all after Wednesday appt with test results and suggested regimen.

                                                                                The local oncologist trained with Lynn Feun at Sylvester who we used the first go-around 12 yrs ago so

                                                                                at the least we will get a second opinion from either him or a consult at Moffit.

                                                                                randallgford
                                                                                Participant

                                                                                  Thanks, all good advice. Will consider all after Wednesday appt with test results and suggested regimen.

                                                                                  The local oncologist trained with Lynn Feun at Sylvester who we used the first go-around 12 yrs ago so

                                                                                  at the least we will get a second opinion from either him or a consult at Moffit.

                                                                                  JerryfromFauq
                                                                                  Participant

                                                                                    Most of the good people that I have met that are also Melanoma Oncologists ha ve been open to working with ones local melanoma specialist in cases where distance and time off work is a problem.

                                                                                    JerryfromFauq
                                                                                    Participant

                                                                                      Most of the good people that I have met that are also Melanoma Oncologists ha ve been open to working with ones local melanoma specialist in cases where distance and time off work is a problem.

                                                                                      JerryfromFauq
                                                                                      Participant

                                                                                        Most of the good people that I have met that are also Melanoma Oncologists ha ve been open to working with ones local melanoma specialist in cases where distance and time off work is a problem.

                                                                                        jennypenny
                                                                                        Participant

                                                                                          IL-2 and Ipi (Yervoy) – what are the differences between these two.  Are they both about the same in the physical toll?

                                                                                           
                                                                                          It would seem to be that taking immunological treatments is the better first choice and then moving to the B-raf type treatments if necessary?
                                                                                          thanks – sister of newly diagnosed 
                                                                                          jennypenny
                                                                                          Participant

                                                                                            IL-2 and Ipi (Yervoy) – what are the differences between these two.  Are they both about the same in the physical toll?

                                                                                             
                                                                                            It would seem to be that taking immunological treatments is the better first choice and then moving to the B-raf type treatments if necessary?
                                                                                            thanks – sister of newly diagnosed 
                                                                                            buffcody
                                                                                            Participant

                                                                                              Brief answer to your question.  Both have side effects.  Both can have difficult side effects.  Only a minority (15% or less) suffer significant side effects on ipi.  Everyone has significant "physical toll" during the 5-day ICU infusions of IL-2.  If you don't have significant toll from the latter, it isn't working.  If you have relatively mild side effects with IPI it may very well be working.  No proportion between the severity of side effects and "cure" rate has been seen.  But it seems that there is a relationship between some side effects and success with the drug.

                                                                                              buffcody
                                                                                              Participant

                                                                                                Brief answer to your question.  Both have side effects.  Both can have difficult side effects.  Only a minority (15% or less) suffer significant side effects on ipi.  Everyone has significant "physical toll" during the 5-day ICU infusions of IL-2.  If you don't have significant toll from the latter, it isn't working.  If you have relatively mild side effects with IPI it may very well be working.  No proportion between the severity of side effects and "cure" rate has been seen.  But it seems that there is a relationship between some side effects and success with the drug.

                                                                                                buffcody
                                                                                                Participant

                                                                                                  Brief answer to your question.  Both have side effects.  Both can have difficult side effects.  Only a minority (15% or less) suffer significant side effects on ipi.  Everyone has significant "physical toll" during the 5-day ICU infusions of IL-2.  If you don't have significant toll from the latter, it isn't working.  If you have relatively mild side effects with IPI it may very well be working.  No proportion between the severity of side effects and "cure" rate has been seen.  But it seems that there is a relationship between some side effects and success with the drug.

                                                                                                  JerryfromFauq
                                                                                                  Participant

                                                                                                    The most significant IL-2 side effects are omostly gone in 3 days after release from the Hospital.  I was in for six weeks out of 20 months (three rounds).  At times I was outside working the day after getting out of the hospital..  I have a friend that spent a month twice in the hospital during a 4 month period after she was put on Ipi(Yervoy).  The experience of the  location and staff where one gets each drug where one gets treatment makes a huge difference. 

                                                                                                    Personnally I prefer the IL-2 due to the short recovery time after each weeks treatment.  Without it I wouldn't still be here.  Either way I do recommend the immunotheropy treatmeants over the A-BRAF unless one has to heavy a tumor load and may not be in shape for the IL-2 nor have time for Ipi to start working.

                                                                                                    JerryfromFauq
                                                                                                    Participant

                                                                                                      The most significant IL-2 side effects are omostly gone in 3 days after release from the Hospital.  I was in for six weeks out of 20 months (three rounds).  At times I was outside working the day after getting out of the hospital..  I have a friend that spent a month twice in the hospital during a 4 month period after she was put on Ipi(Yervoy).  The experience of the  location and staff where one gets each drug where one gets treatment makes a huge difference. 

                                                                                                      Personnally I prefer the IL-2 due to the short recovery time after each weeks treatment.  Without it I wouldn't still be here.  Either way I do recommend the immunotheropy treatmeants over the A-BRAF unless one has to heavy a tumor load and may not be in shape for the IL-2 nor have time for Ipi to start working.

                                                                                                      jennypenny
                                                                                                      Participant

                                                                                                        Thank you for the reply! I appreciate it, we are unsure if she is BRAF at this time, waiting for results.

                                                                                                        jennypenny
                                                                                                        Participant

                                                                                                          Thank you for the reply! I appreciate it, we are unsure if she is BRAF at this time, waiting for results.

                                                                                                          jennypenny
                                                                                                          Participant

                                                                                                            Thank you for the reply! I appreciate it, we are unsure if she is BRAF at this time, waiting for results.

                                                                                                            jennypenny
                                                                                                            Participant

                                                                                                              Thank you for the reply! I appreciate it, we are unsure if she is BRAF at this time, waiting for results.

                                                                                                              jennypenny
                                                                                                              Participant

                                                                                                                Thank you for the reply! I appreciate it, we are unsure if she is BRAF at this time, waiting for results.

                                                                                                                jennypenny
                                                                                                                Participant

                                                                                                                  Thank you for the reply! I appreciate it, we are unsure if she is BRAF at this time, waiting for results.

                                                                                                                  JerryfromFauq
                                                                                                                  Participant

                                                                                                                    The most significant IL-2 side effects are omostly gone in 3 days after release from the Hospital.  I was in for six weeks out of 20 months (three rounds).  At times I was outside working the day after getting out of the hospital..  I have a friend that spent a month twice in the hospital during a 4 month period after she was put on Ipi(Yervoy).  The experience of the  location and staff where one gets each drug where one gets treatment makes a huge difference. 

                                                                                                                    Personnally I prefer the IL-2 due to the short recovery time after each weeks treatment.  Without it I wouldn't still be here.  Either way I do recommend the immunotheropy treatmeants over the A-BRAF unless one has to heavy a tumor load and may not be in shape for the IL-2 nor have time for Ipi to start working.

                                                                                                                    jennypenny
                                                                                                                    Participant

                                                                                                                      IL-2 and Ipi (Yervoy) – what are the differences between these two.  Are they both about the same in the physical toll?

                                                                                                                       
                                                                                                                      It would seem to be that taking immunological treatments is the better first choice and then moving to the B-raf type treatments if necessary?
                                                                                                                      thanks – sister of newly diagnosed 
                                                                                                                    Theresa123
                                                                                                                    Participant

                                                                                                                      I was told by a melanoma specialist that Zelboraf is an end stage drug.  It works for a while to extend your life, and then your tumor load increases astronomically.  It is for people that want 6-9 more months to live when everything is spent.  Maybe I am wrong now since I have heard of better results when it is used with MEK or something like that.  Listen to Dr. Ribas on the subject on the MRF webcams.  He was upset so many people were getting Zel too early.  Be careful.

                                                                                                                      Good luck.

                                                                                                                      Theresa123
                                                                                                                      Participant

                                                                                                                        I was told by a melanoma specialist that Zelboraf is an end stage drug.  It works for a while to extend your life, and then your tumor load increases astronomically.  It is for people that want 6-9 more months to live when everything is spent.  Maybe I am wrong now since I have heard of better results when it is used with MEK or something like that.  Listen to Dr. Ribas on the subject on the MRF webcams.  He was upset so many people were getting Zel too early.  Be careful.

                                                                                                                        Good luck.

                                                                                                                        Theresa123
                                                                                                                        Participant

                                                                                                                          I was told by a melanoma specialist that Zelboraf is an end stage drug.  It works for a while to extend your life, and then your tumor load increases astronomically.  It is for people that want 6-9 more months to live when everything is spent.  Maybe I am wrong now since I have heard of better results when it is used with MEK or something like that.  Listen to Dr. Ribas on the subject on the MRF webcams.  He was upset so many people were getting Zel too early.  Be careful.

                                                                                                                          Good luck.

                                                                                                                          TSchulz
                                                                                                                          Participant

                                                                                                                            First of all, I am sorry you have to start down this path – but as you've seen there are now many different weapons to fight this stuff!

                                                                                                                            I couldn't agree more with trying to avoid use of vemurafenib for as long as possible.  I think there are so many other options that may lead to a long term durable response, without the need to take medication long term, that these need to be considered.  Of course there are many factors that influence which treatment, trial, etc. is best and works for your situation.  

                                                                                                                            As someone who has appreciates not wanting to travel and disrupt the daily life.  This stuff needs to shoot to the top of the priority list.  Many of the treatments available require short (1 week – 1 month hospitalizations) among other disruptions but the effects are often short lived and the pay-offs possibly lifelong!  

                                                                                                                            Please consider as many options as you can hear about and learn about – as long as time allows. 

                                                                                                                            Good luck and best wishes, 

                                                                                                                            Troy

                                                                                                                            TSchulz
                                                                                                                            Participant

                                                                                                                              First of all, I am sorry you have to start down this path – but as you've seen there are now many different weapons to fight this stuff!

                                                                                                                              I couldn't agree more with trying to avoid use of vemurafenib for as long as possible.  I think there are so many other options that may lead to a long term durable response, without the need to take medication long term, that these need to be considered.  Of course there are many factors that influence which treatment, trial, etc. is best and works for your situation.  

                                                                                                                              As someone who has appreciates not wanting to travel and disrupt the daily life.  This stuff needs to shoot to the top of the priority list.  Many of the treatments available require short (1 week – 1 month hospitalizations) among other disruptions but the effects are often short lived and the pay-offs possibly lifelong!  

                                                                                                                              Please consider as many options as you can hear about and learn about – as long as time allows. 

                                                                                                                              Good luck and best wishes, 

                                                                                                                              Troy

                                                                                                                              TSchulz
                                                                                                                              Participant

                                                                                                                                First of all, I am sorry you have to start down this path – but as you've seen there are now many different weapons to fight this stuff!

                                                                                                                                I couldn't agree more with trying to avoid use of vemurafenib for as long as possible.  I think there are so many other options that may lead to a long term durable response, without the need to take medication long term, that these need to be considered.  Of course there are many factors that influence which treatment, trial, etc. is best and works for your situation.  

                                                                                                                                As someone who has appreciates not wanting to travel and disrupt the daily life.  This stuff needs to shoot to the top of the priority list.  Many of the treatments available require short (1 week – 1 month hospitalizations) among other disruptions but the effects are often short lived and the pay-offs possibly lifelong!  

                                                                                                                                Please consider as many options as you can hear about and learn about – as long as time allows. 

                                                                                                                                Good luck and best wishes, 

                                                                                                                                Troy

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                                                                                                                            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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