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Not the best New Years gift

Forums General Melanoma Community Not the best New Years gift

  • Post
    LindyVA
    Participant

      My husband (stage four mel) started Yervoy Dec 1 2012…4 infusions and he did well, only fevers, bad rash and fatigue. The Ong told us he was a melanoma expert only to find out my husband was the melanoma patient and the only Yervoy patient. I watched the test using all the tips I learned on this wonderfully, informative resource…melanoma.org.  I knew he was responding by the numbers.

      My husband (stage four mel) started Yervoy Dec 1 2012…4 infusions and he did well, only fevers, bad rash and fatigue. The Ong told us he was a melanoma expert only to find out my husband was the melanoma patient and the only Yervoy patient. I watched the test using all the tips I learned on this wonderfully, informative resource…melanoma.org.  I knew he was responding by the numbers. But the Ong said ACL's have nothing to do this whether the drug was working or not.   After # 4 the PET/CT showed tumor reduction in lungs, adrenal, heart(this was almost as large as heart)  and brain.(Brain MRI) He has had gamma knife 3 times.

      I asked the Ong about maintainence. He told me there was not such thing. I produced several pages of comments on maintaince every 12 weeks. So he agreed and did one maintainence and said that since my husband was too tired to play golf he should have no more Yervoy. Well, it was Aug and 103 degrees in Virginia, but a new CT scan said everything was OK. I really felt we needed to continue maintainence until the end of the year, but the family was ecsatic over the good reports so I remained possitive.

      Well, 2 days before Christmas Ong informs us he has "hot spot" on adrenda glandl. I said he had met on adrendal 13 months ago before yervoy…could it be the Yervoy lighting it up? He said absolutely not. I asked if we could do some more maintainence and Ong said only if he survives the surgery then we will talk about it. But he would have to due re-introduction because maintainence would no longer be viable. I would think as a good Yervoy responder, that there would be other options than going directly to surgery.

      He says we need to see surgeon asap and hear about this cool new robot they would use for the surgery. Surgeon says my husband not good candidate for surgery do to heart conditions, but he survived last 4 melanoma surgeries so let's go ahead and schedule surgery asap and hope the second adrenal functions for both. I mentioned to the surgeon it could be the Yervoy… and he says he never heard of Yervoy, but it has stopped working by now (12 months after first yervoy treatment) so surgery is the only thing to do

      I have been researching and found posts stating they can not tell if "hot spot" is active met or active yervoy attacking the met. I am so confused and scared. I can not tell our 6 children, their spouces and our 11 grandchildren we are on the rollercoaster again.

      There are so many of you that are very knowledgeable of yervoy and I used your knowledge to get him this far. Thank you.

      Questions? Can it be Yervoy and not the met lighting up and is there any way to tell if it is a new or the same mass? 

      Can we ask for another reading of the PET/CT scan to try and clarify what is lighting up?

       Must yervoy be totally re-introduced or can we re-start maintainece. 

      How do we find a second opinion when we do not have a melonoma specialist in our city (Richmond, VA)

      Am I wrong to question these professionals and to postpone this surgery until we have more information.

      Thank you for your time and attention to my concerns and for any suggestions you my have.

      Linda

       

                   

    Viewing 26 reply threads
    • Replies
        LindyVA
        Participant

          I am so sorry. First yervoy was Dec 1, 2011.

          LindyVA
          Participant

            I am so sorry. First yervoy was Dec 1, 2011.

              Snickers60
              Participant

                Linda – RUN – Don't walk to the nearest or fartherest MELANOMA CANCER CENTER !   Get on a plane, train, auto, – but go somewhere else and get an opinion ASAP.   I'm sorry, your Doc doesn't sound like he knows Bat about what he's doing.   Sorry to be so blunt, but it does sound as if you know a lot more about treating MEL than he does.   He could learn more on this board alone.

                PLEASE DON'T WAIT – DEAL WITH REALITY – TELL YOUR FAMILY and GET GOING GIRL………….this is the worst mess, so you need the BEST OF THE BEST DOCS and CANCER CENTER.

                WE GO TO MDANDERSON IN HOUSTON and it's AMAZING….,voted # ono 1 in the country – but there are other good one's too, but they must specialize in MELANOMA !   

                Here's wishing you the very best – and KEEP US UPDATE PLEASE.    

                Docs are not all created equal as you know, and when it's your LIFE, you do "WHATEVER" you have to to go to the BEST !   At least, that's how we feel.  

                BE YOUR OWN ADVOCATE AND LISTEN WITH YOUR "HEART" !!!

                Nancy (devoted wife of 2 X Warrior Wayne) 

                Snickers60
                Participant

                  Linda – RUN – Don't walk to the nearest or fartherest MELANOMA CANCER CENTER !   Get on a plane, train, auto, – but go somewhere else and get an opinion ASAP.   I'm sorry, your Doc doesn't sound like he knows Bat about what he's doing.   Sorry to be so blunt, but it does sound as if you know a lot more about treating MEL than he does.   He could learn more on this board alone.

                  PLEASE DON'T WAIT – DEAL WITH REALITY – TELL YOUR FAMILY and GET GOING GIRL………….this is the worst mess, so you need the BEST OF THE BEST DOCS and CANCER CENTER.

                  WE GO TO MDANDERSON IN HOUSTON and it's AMAZING….,voted # ono 1 in the country – but there are other good one's too, but they must specialize in MELANOMA !   

                  Here's wishing you the very best – and KEEP US UPDATE PLEASE.    

                  Docs are not all created equal as you know, and when it's your LIFE, you do "WHATEVER" you have to to go to the BEST !   At least, that's how we feel.  

                  BE YOUR OWN ADVOCATE AND LISTEN WITH YOUR "HEART" !!!

                  Nancy (devoted wife of 2 X Warrior Wayne) 

                  Snickers60
                  Participant

                    Linda – RUN – Don't walk to the nearest or fartherest MELANOMA CANCER CENTER !   Get on a plane, train, auto, – but go somewhere else and get an opinion ASAP.   I'm sorry, your Doc doesn't sound like he knows Bat about what he's doing.   Sorry to be so blunt, but it does sound as if you know a lot more about treating MEL than he does.   He could learn more on this board alone.

                    PLEASE DON'T WAIT – DEAL WITH REALITY – TELL YOUR FAMILY and GET GOING GIRL………….this is the worst mess, so you need the BEST OF THE BEST DOCS and CANCER CENTER.

                    WE GO TO MDANDERSON IN HOUSTON and it's AMAZING….,voted # ono 1 in the country – but there are other good one's too, but they must specialize in MELANOMA !   

                    Here's wishing you the very best – and KEEP US UPDATE PLEASE.    

                    Docs are not all created equal as you know, and when it's your LIFE, you do "WHATEVER" you have to to go to the BEST !   At least, that's how we feel.  

                    BE YOUR OWN ADVOCATE AND LISTEN WITH YOUR "HEART" !!!

                    Nancy (devoted wife of 2 X Warrior Wayne) 

                  LindyVA
                  Participant

                    I am so sorry. First yervoy was Dec 1, 2011.

                    awillett1991
                    Participant
                      Linda,

                      My heart goes out to you, it sounds like you are trying so hard and you really need a melanoma specialist. PET/CT is not as detailed as a regular CT. MRI is even better. My PETs have had many false hot spots. No one has yet to cut or radiate me without

                      Where are you located? Are you able to travel for a consult to one of the bigger centers? The process of getting into MD Anderson took me three weeks from phone call to appointment check in. Lots of work gathering and sending documents, scans, etc, in between but worth it.

                      Good luck!
                      Amy

                        LindyVA
                        Participant

                          Thank you. I am filing out the request appointment on MD Anderson's website right now. I will do the leg work or what ever it takes to get him the best care. We are in Richmond, VA and I have been trying to find a melanoma specialist for two years. The ong he had for 5 years said he was an expert and my husband took him at his word. But he had never heard of yervoy. 2nd ong…well you read his story. I think MD Anderson would be wonderful, but an earlier post said they request $40.000. deposit. My husband was a teacher for 48 years so he did not make much but has terrific insurance. I am the second wife (19 years) so I raised my sons on a single pay.

                          Thank you and I am runnnnnnnning to find better care.

                           

                          Linda

                           

                          scots
                          Participant
                            UVA has two melanoma specialist. A surgeon and an oncologist. Have tried there yet? There are people on here that go there. I had my WLE done UVA by surgeon who specializes in procedures on the head. I did not know at the time that there melanoma specialist at UVA.

                            Scot

                            scots
                            Participant
                              UVA has two melanoma specialist. A surgeon and an oncologist. Have tried there yet? There are people on here that go there. I had my WLE done UVA by surgeon who specializes in procedures on the head. I did not know at the time that there melanoma specialist at UVA.

                              Scot

                              scots
                              Participant
                                UVA has two melanoma specialist. A surgeon and an oncologist. Have tried there yet? There are people on here that go there. I had my WLE done UVA by surgeon who specializes in procedures on the head. I did not know at the time that there melanoma specialist at UVA.

                                Scot

                                Snickers60
                                Participant

                                  YOU GO GIRL !!!!!!!!!!   :-))))))   It will not take you long to find out something from MDA – they do not DILLY DALLY !    We have been going there for 22 years off and on.   I posted before that our Ins. deduct was met when we went there,  and we have paid a total of $248.00 for the year out of pocket….and we have gone every 28 days since April.   They never said any such thing to us abut $40,000…..maybe because Wayne was a former patient – don't know, but I've never heard of that.  

                                  YOU WILL LOVE IT THERE……..if there is a such thing as loving a Cancer Center.   We are heading there on the 16th for 3 days for Pets/Sedated Brain MRI – the works.    We are just so GRATEFUL FOR THEM being there.   Don't forget about http://www.houstongroundangels.org for a free ride from any airport there.   They are a wonderful volunteer organization and a lot of the volunteers are former patients…..and very kind and nice.   A Cab ride to and from airport there can be from $75-100 depending on which airport you traveling to.  Stay at the ROTARY HOUSE HOTEL across the street from MDA.  It is connected to the Clinic by a catwalk and there is a shuttle ride.    You can get bloodwork done downstairs at the Hotel Rotary as soon as you arrive and they will have it there by the time you have your appointment.   ROTARY HOUSE OFFICE has all this info.   There are also wheelchairs available everywhere that go to and fro from the Clinic to the Hotel.   Hope this helps a little.   Please feel free to ask any other questions you might have.  

                                  I hated to be so blunt, but I'm watching Dr. Phil now and he just said:    WINNERS DEAL WITH THE TRUTH and THE TRUTH WILL SET YOU FREE, so I took that as a confirmation that I said the right thing to you. πŸ™‚    Sometimes, we just need someone to say it to us.   This is an illness where you have to take the bull by the horns kind of thing.  πŸ™‚   FIGHT – FIGHT – FIGHT !   Whatever that takes.   Never give up….never ever, ever, give up !  πŸ™‚

                                  I'm just soooo sorry you are having to go through this, and so wish you and the family the very best.   You need a DOC who knows what he's doing with this critical cancer.    Just because a Doc tells you something, doesn't mean it's the truth or the best information.  This is an illness you have to "DOCTOR" yourself.   I have to do that with my own illness.   We just have to keep on shopping til we find the right one……like a pair of shoes that fit 

                                  Let us know how it goes……you are on the RIGHT RUNNING TRACK !   :-))))  

                                  Nancy (devoted wife of 3 X Warrior Wayne)  <>< 

                                  Snickers60
                                  Participant

                                    YOU GO GIRL !!!!!!!!!!   :-))))))   It will not take you long to find out something from MDA – they do not DILLY DALLY !    We have been going there for 22 years off and on.   I posted before that our Ins. deduct was met when we went there,  and we have paid a total of $248.00 for the year out of pocket….and we have gone every 28 days since April.   They never said any such thing to us abut $40,000…..maybe because Wayne was a former patient – don't know, but I've never heard of that.  

                                    YOU WILL LOVE IT THERE……..if there is a such thing as loving a Cancer Center.   We are heading there on the 16th for 3 days for Pets/Sedated Brain MRI – the works.    We are just so GRATEFUL FOR THEM being there.   Don't forget about http://www.houstongroundangels.org for a free ride from any airport there.   They are a wonderful volunteer organization and a lot of the volunteers are former patients…..and very kind and nice.   A Cab ride to and from airport there can be from $75-100 depending on which airport you traveling to.  Stay at the ROTARY HOUSE HOTEL across the street from MDA.  It is connected to the Clinic by a catwalk and there is a shuttle ride.    You can get bloodwork done downstairs at the Hotel Rotary as soon as you arrive and they will have it there by the time you have your appointment.   ROTARY HOUSE OFFICE has all this info.   There are also wheelchairs available everywhere that go to and fro from the Clinic to the Hotel.   Hope this helps a little.   Please feel free to ask any other questions you might have.  

                                    I hated to be so blunt, but I'm watching Dr. Phil now and he just said:    WINNERS DEAL WITH THE TRUTH and THE TRUTH WILL SET YOU FREE, so I took that as a confirmation that I said the right thing to you. πŸ™‚    Sometimes, we just need someone to say it to us.   This is an illness where you have to take the bull by the horns kind of thing.  πŸ™‚   FIGHT – FIGHT – FIGHT !   Whatever that takes.   Never give up….never ever, ever, give up !  πŸ™‚

                                    I'm just soooo sorry you are having to go through this, and so wish you and the family the very best.   You need a DOC who knows what he's doing with this critical cancer.    Just because a Doc tells you something, doesn't mean it's the truth or the best information.  This is an illness you have to "DOCTOR" yourself.   I have to do that with my own illness.   We just have to keep on shopping til we find the right one……like a pair of shoes that fit 

                                    Let us know how it goes……you are on the RIGHT RUNNING TRACK !   :-))))  

                                    Nancy (devoted wife of 3 X Warrior Wayne)  <>< 

                                    Snickers60
                                    Participant

                                      YOU GO GIRL !!!!!!!!!!   :-))))))   It will not take you long to find out something from MDA – they do not DILLY DALLY !    We have been going there for 22 years off and on.   I posted before that our Ins. deduct was met when we went there,  and we have paid a total of $248.00 for the year out of pocket….and we have gone every 28 days since April.   They never said any such thing to us abut $40,000…..maybe because Wayne was a former patient – don't know, but I've never heard of that.  

                                      YOU WILL LOVE IT THERE……..if there is a such thing as loving a Cancer Center.   We are heading there on the 16th for 3 days for Pets/Sedated Brain MRI – the works.    We are just so GRATEFUL FOR THEM being there.   Don't forget about http://www.houstongroundangels.org for a free ride from any airport there.   They are a wonderful volunteer organization and a lot of the volunteers are former patients…..and very kind and nice.   A Cab ride to and from airport there can be from $75-100 depending on which airport you traveling to.  Stay at the ROTARY HOUSE HOTEL across the street from MDA.  It is connected to the Clinic by a catwalk and there is a shuttle ride.    You can get bloodwork done downstairs at the Hotel Rotary as soon as you arrive and they will have it there by the time you have your appointment.   ROTARY HOUSE OFFICE has all this info.   There are also wheelchairs available everywhere that go to and fro from the Clinic to the Hotel.   Hope this helps a little.   Please feel free to ask any other questions you might have.  

                                      I hated to be so blunt, but I'm watching Dr. Phil now and he just said:    WINNERS DEAL WITH THE TRUTH and THE TRUTH WILL SET YOU FREE, so I took that as a confirmation that I said the right thing to you. πŸ™‚    Sometimes, we just need someone to say it to us.   This is an illness where you have to take the bull by the horns kind of thing.  πŸ™‚   FIGHT – FIGHT – FIGHT !   Whatever that takes.   Never give up….never ever, ever, give up !  πŸ™‚

                                      I'm just soooo sorry you are having to go through this, and so wish you and the family the very best.   You need a DOC who knows what he's doing with this critical cancer.    Just because a Doc tells you something, doesn't mean it's the truth or the best information.  This is an illness you have to "DOCTOR" yourself.   I have to do that with my own illness.   We just have to keep on shopping til we find the right one……like a pair of shoes that fit 

                                      Let us know how it goes……you are on the RIGHT RUNNING TRACK !   :-))))  

                                      Nancy (devoted wife of 3 X Warrior Wayne)  <>< 

                                      awillett1991
                                      Participant
                                        We never paid more at MDA than here at home. They also have a vast network of financial counselors, social workers, etc to help with lots of things. They are experts and very upfront about insurance. Lots of trials there too, some of just their own.

                                        I’d think In VA you’d have closer options like Sloan in NYC or Moffitt in Tampa is supposed to be excellent. I go to Vanderbilt in Nashville now and while certainly not as big as these, my oncologist is amazing and is involved with lots of trials and research and has been for many years.

                                        No matter where, you will still need a local Onc that can work with these far away experts for things like local blood work, etc.

                                        Good luck! I think you are on the right path!

                                        awillett1991
                                        Participant
                                          We never paid more at MDA than here at home. They also have a vast network of financial counselors, social workers, etc to help with lots of things. They are experts and very upfront about insurance. Lots of trials there too, some of just their own.

                                          I’d think In VA you’d have closer options like Sloan in NYC or Moffitt in Tampa is supposed to be excellent. I go to Vanderbilt in Nashville now and while certainly not as big as these, my oncologist is amazing and is involved with lots of trials and research and has been for many years.

                                          No matter where, you will still need a local Onc that can work with these far away experts for things like local blood work, etc.

                                          Good luck! I think you are on the right path!

                                          awillett1991
                                          Participant
                                            We never paid more at MDA than here at home. They also have a vast network of financial counselors, social workers, etc to help with lots of things. They are experts and very upfront about insurance. Lots of trials there too, some of just their own.

                                            I’d think In VA you’d have closer options like Sloan in NYC or Moffitt in Tampa is supposed to be excellent. I go to Vanderbilt in Nashville now and while certainly not as big as these, my oncologist is amazing and is involved with lots of trials and research and has been for many years.

                                            No matter where, you will still need a local Onc that can work with these far away experts for things like local blood work, etc.

                                            Good luck! I think you are on the right path!

                                            LindyVA
                                            Participant

                                              Thank you. I am filing out the request appointment on MD Anderson's website right now. I will do the leg work or what ever it takes to get him the best care. We are in Richmond, VA and I have been trying to find a melanoma specialist for two years. The ong he had for 5 years said he was an expert and my husband took him at his word. But he had never heard of yervoy. 2nd ong…well you read his story. I think MD Anderson would be wonderful, but an earlier post said they request $40.000. deposit. My husband was a teacher for 48 years so he did not make much but has terrific insurance. I am the second wife (19 years) so I raised my sons on a single pay.

                                              Thank you and I am runnnnnnnning to find better care.

                                               

                                              Linda

                                               

                                              LindyVA
                                              Participant

                                                Thank you. I am filing out the request appointment on MD Anderson's website right now. I will do the leg work or what ever it takes to get him the best care. We are in Richmond, VA and I have been trying to find a melanoma specialist for two years. The ong he had for 5 years said he was an expert and my husband took him at his word. But he had never heard of yervoy. 2nd ong…well you read his story. I think MD Anderson would be wonderful, but an earlier post said they request $40.000. deposit. My husband was a teacher for 48 years so he did not make much but has terrific insurance. I am the second wife (19 years) so I raised my sons on a single pay.

                                                Thank you and I am runnnnnnnning to find better care.

                                                 

                                                Linda

                                                 

                                              awillett1991
                                              Participant
                                                Linda,

                                                My heart goes out to you, it sounds like you are trying so hard and you really need a melanoma specialist. PET/CT is not as detailed as a regular CT. MRI is even better. My PETs have had many false hot spots. No one has yet to cut or radiate me without

                                                Where are you located? Are you able to travel for a consult to one of the bigger centers? The process of getting into MD Anderson took me three weeks from phone call to appointment check in. Lots of work gathering and sending documents, scans, etc, in between but worth it.

                                                Good luck!
                                                Amy

                                                awillett1991
                                                Participant
                                                  Linda,

                                                  My heart goes out to you, it sounds like you are trying so hard and you really need a melanoma specialist. PET/CT is not as detailed as a regular CT. MRI is even better. My PETs have had many false hot spots. No one has yet to cut or radiate me without

                                                  Where are you located? Are you able to travel for a consult to one of the bigger centers? The process of getting into MD Anderson took me three weeks from phone call to appointment check in. Lots of work gathering and sending documents, scans, etc, in between but worth it.

                                                  Good luck!
                                                  Amy

                                                  audgator
                                                  Participant

                                                    What about NIH? I 've seen that mentioned on this board. DC area, right?      Dan

                                                    audgator
                                                    Participant

                                                      What about NIH? I 've seen that mentioned on this board. DC area, right?      Dan

                                                      audgator
                                                      Participant

                                                        What about NIH? I 've seen that mentioned on this board. DC area, right?      Dan

                                                        JerryfromFauq
                                                        Participant

                                                          Lindy, You are not wrong to question the professionals.  According to local Oncologists I died in 2007 after 3 1/2 years of mis-diagnosis by the local family Doctor and then improper follow-up by the local surgeon. (Read my profile. and start one for y'all.)

                                                             I finally learned what an Oncologist was and went to two great melanona Specialists at UVA in Charlottesfile, VA.  Dr Craig Sslingluff is both one of the top melanoma surgeons in the world and is a great and compassionate Researcher that listens to and works with his patients. (and one of the reasons I'm alive now.)  The Medical Oncologist that he referred me to is the head of the Medical Oncology Department at UVA.  Dr. Weiss is also a great man and melanoma specialist that listens to his patients.  He tried the best available treatment at the time (not bettered by the new treatments now) when I stopped responding to it (IL-2), he, Slingluff and the Melanoma Team at UVA researched my findings and agreed to start me off-label on a treatment that had only been written up by one Doctor on one patient in one per reviewed medical journal.  (Dr Wen Jen Hwu at MDA was also contacted by the UVA team as she was doing research on this c-kit melanoma treatment.)  This treatment immediately stabilized my widly growing new tumors and the newly expanding older tumors.  I'm still doing amazing well.  Our stage IV DebbieVA fired her Richmand Oncologist (second oncologist she "fired") and changed to Dr Weiss.  She is now five years NED.    Dr. Grosh at UVA has a good reputation with some other Virginia melanooma patients I know.  I also have a friend that was treated with Yervoy by Dr Weiss.  She had major problems with her intestines and had to be hospitalized twice for intensive care.  The last I heard she has been back at work full time now for over six months.
                                                           

                                                           

                                                          JerryfromFauq
                                                          Participant

                                                            Lindy, You are not wrong to question the professionals.  According to local Oncologists I died in 2007 after 3 1/2 years of mis-diagnosis by the local family Doctor and then improper follow-up by the local surgeon. (Read my profile. and start one for y'all.)

                                                               I finally learned what an Oncologist was and went to two great melanona Specialists at UVA in Charlottesfile, VA.  Dr Craig Sslingluff is both one of the top melanoma surgeons in the world and is a great and compassionate Researcher that listens to and works with his patients. (and one of the reasons I'm alive now.)  The Medical Oncologist that he referred me to is the head of the Medical Oncology Department at UVA.  Dr. Weiss is also a great man and melanoma specialist that listens to his patients.  He tried the best available treatment at the time (not bettered by the new treatments now) when I stopped responding to it (IL-2), he, Slingluff and the Melanoma Team at UVA researched my findings and agreed to start me off-label on a treatment that had only been written up by one Doctor on one patient in one per reviewed medical journal.  (Dr Wen Jen Hwu at MDA was also contacted by the UVA team as she was doing research on this c-kit melanoma treatment.)  This treatment immediately stabilized my widly growing new tumors and the newly expanding older tumors.  I'm still doing amazing well.  Our stage IV DebbieVA fired her Richmand Oncologist (second oncologist she "fired") and changed to Dr Weiss.  She is now five years NED.    Dr. Grosh at UVA has a good reputation with some other Virginia melanooma patients I know.  I also have a friend that was treated with Yervoy by Dr Weiss.  She had major problems with her intestines and had to be hospitalized twice for intensive care.  The last I heard she has been back at work full time now for over six months.
                                                             

                                                             

                                                            JerryfromFauq
                                                            Participant

                                                              Lindy, You are not wrong to question the professionals.  According to local Oncologists I died in 2007 after 3 1/2 years of mis-diagnosis by the local family Doctor and then improper follow-up by the local surgeon. (Read my profile. and start one for y'all.)

                                                                 I finally learned what an Oncologist was and went to two great melanona Specialists at UVA in Charlottesfile, VA.  Dr Craig Sslingluff is both one of the top melanoma surgeons in the world and is a great and compassionate Researcher that listens to and works with his patients. (and one of the reasons I'm alive now.)  The Medical Oncologist that he referred me to is the head of the Medical Oncology Department at UVA.  Dr. Weiss is also a great man and melanoma specialist that listens to his patients.  He tried the best available treatment at the time (not bettered by the new treatments now) when I stopped responding to it (IL-2), he, Slingluff and the Melanoma Team at UVA researched my findings and agreed to start me off-label on a treatment that had only been written up by one Doctor on one patient in one per reviewed medical journal.  (Dr Wen Jen Hwu at MDA was also contacted by the UVA team as she was doing research on this c-kit melanoma treatment.)  This treatment immediately stabilized my widly growing new tumors and the newly expanding older tumors.  I'm still doing amazing well.  Our stage IV DebbieVA fired her Richmand Oncologist (second oncologist she "fired") and changed to Dr Weiss.  She is now five years NED.    Dr. Grosh at UVA has a good reputation with some other Virginia melanooma patients I know.  I also have a friend that was treated with Yervoy by Dr Weiss.  She had major problems with her intestines and had to be hospitalized twice for intensive care.  The last I heard she has been back at work full time now for over six months.
                                                               

                                                               

                                                              jcmp
                                                              Participant

                                                                Hi Linda,

                                                                 

                                                                My husband has been treated at UVA for years.  They have a great melanoma team, including Dr. Slingluff, Dr. Weiss and Dr. Grosh.  My husband has been treating with Dr. Grosh who is wonderful.  He has also been treated by Dr. Slingluff and Dr. Weiss at various times.  I highly recommend UVA!  My husband has received excellent care there. 

                                                                 

                                                                jcmp
                                                                Participant

                                                                  Hi Linda,

                                                                   

                                                                  My husband has been treated at UVA for years.  They have a great melanoma team, including Dr. Slingluff, Dr. Weiss and Dr. Grosh.  My husband has been treating with Dr. Grosh who is wonderful.  He has also been treated by Dr. Slingluff and Dr. Weiss at various times.  I highly recommend UVA!  My husband has received excellent care there. 

                                                                   

                                                                  jcmp
                                                                  Participant

                                                                    Hi Linda,

                                                                     

                                                                    My husband has been treated at UVA for years.  They have a great melanoma team, including Dr. Slingluff, Dr. Weiss and Dr. Grosh.  My husband has been treating with Dr. Grosh who is wonderful.  He has also been treated by Dr. Slingluff and Dr. Weiss at various times.  I highly recommend UVA!  My husband has received excellent care there. 

                                                                     

                                                                    Fen
                                                                    Participant

                                                                      Change. Now.  Let us know the upshot.  

                                                                      OK – that's a lot to ask of someone who is in the middle of this incredibly difficult situation.  Do you have someone who can help you get into a different medical center?  Good support?  

                                                                      My general rule is to get a second opinion if my gut tells me to.  When I asked my current oncologist about a 2nd opinion  he thought it was a great idea.  Never stay with a physician who doesn't discuss options with you, treat you and your husband with respect, or explore all types of treatment.   Sounds like yours doesn't.

                                                                      Keeping you and your husband in my prayers.    Fen

                                                                      Fen
                                                                      Participant

                                                                        Change. Now.  Let us know the upshot.  

                                                                        OK – that's a lot to ask of someone who is in the middle of this incredibly difficult situation.  Do you have someone who can help you get into a different medical center?  Good support?  

                                                                        My general rule is to get a second opinion if my gut tells me to.  When I asked my current oncologist about a 2nd opinion  he thought it was a great idea.  Never stay with a physician who doesn't discuss options with you, treat you and your husband with respect, or explore all types of treatment.   Sounds like yours doesn't.

                                                                        Keeping you and your husband in my prayers.    Fen

                                                                        Fen
                                                                        Participant

                                                                          Change. Now.  Let us know the upshot.  

                                                                          OK – that's a lot to ask of someone who is in the middle of this incredibly difficult situation.  Do you have someone who can help you get into a different medical center?  Good support?  

                                                                          My general rule is to get a second opinion if my gut tells me to.  When I asked my current oncologist about a 2nd opinion  he thought it was a great idea.  Never stay with a physician who doesn't discuss options with you, treat you and your husband with respect, or explore all types of treatment.   Sounds like yours doesn't.

                                                                          Keeping you and your husband in my prayers.    Fen

                                                                          Swanee
                                                                          Participant

                                                                            Hi Linda,

                                                                            So sorry you are experiencing this kind of care for your husband.  Most of us being treated by a melanoma specialist, have great care and 24/7 access to our dr.'s or their staff who will respond with immediate answers or direction.  I agree, you need 2nd opinion and a melanoma center.  I think you are in a great location with the top doc's and centers all around you.  I've heard great things about NCI/NIH and that is not that far from Richmond, VA.  Most of us travel a few hours to appts. if not across the country.  I heard if NCI accepts you, they pay for your treatment there and MD Anderson is just the same with their support as well.

                                                                            This burden is to big for one person and I know you don't want to stress your family out, but that's why we're called family.   It is always difficult to burden others, I agree, but family is there for each other, giving and taking and supporting each other through  the good and the bad.  I strongly urge you to consult with family and ask for their help, you can't do this alone, you need their wisdom and support and it will draw you closer as a family.  Also, don't underestimate the power of friends….they can be a huge source of knowledge as well.  It was our dear friends who directed us to our current melanoma dr., surgeon  and facility.  You know the saying, it takes a village to raise a child, well it takes a whole lot of us to help a friend who is battling this beast,  and we're your friends in a roundabout way : ) and we're here to help!

                                                                            Please keep us posted to your discoveries and I will be praying for you that you find the best melanoma care for your husband, don't stop until you find it!     You're doing a great job all by yourself and I applaud you in your valiant efforts but you need reinforcements now to help you find your way through this melanoma maze, it's a tough challenge and there's no choice about whether you want to participate or not!  

                                                                            Take care Linda!

                                                                            Swanee 

                                                                            Swanee
                                                                            Participant

                                                                              Hi Linda,

                                                                              So sorry you are experiencing this kind of care for your husband.  Most of us being treated by a melanoma specialist, have great care and 24/7 access to our dr.'s or their staff who will respond with immediate answers or direction.  I agree, you need 2nd opinion and a melanoma center.  I think you are in a great location with the top doc's and centers all around you.  I've heard great things about NCI/NIH and that is not that far from Richmond, VA.  Most of us travel a few hours to appts. if not across the country.  I heard if NCI accepts you, they pay for your treatment there and MD Anderson is just the same with their support as well.

                                                                              This burden is to big for one person and I know you don't want to stress your family out, but that's why we're called family.   It is always difficult to burden others, I agree, but family is there for each other, giving and taking and supporting each other through  the good and the bad.  I strongly urge you to consult with family and ask for their help, you can't do this alone, you need their wisdom and support and it will draw you closer as a family.  Also, don't underestimate the power of friends….they can be a huge source of knowledge as well.  It was our dear friends who directed us to our current melanoma dr., surgeon  and facility.  You know the saying, it takes a village to raise a child, well it takes a whole lot of us to help a friend who is battling this beast,  and we're your friends in a roundabout way : ) and we're here to help!

                                                                              Please keep us posted to your discoveries and I will be praying for you that you find the best melanoma care for your husband, don't stop until you find it!     You're doing a great job all by yourself and I applaud you in your valiant efforts but you need reinforcements now to help you find your way through this melanoma maze, it's a tough challenge and there's no choice about whether you want to participate or not!  

                                                                              Take care Linda!

                                                                              Swanee 

                                                                              Swanee
                                                                              Participant

                                                                                Hi Linda,

                                                                                So sorry you are experiencing this kind of care for your husband.  Most of us being treated by a melanoma specialist, have great care and 24/7 access to our dr.'s or their staff who will respond with immediate answers or direction.  I agree, you need 2nd opinion and a melanoma center.  I think you are in a great location with the top doc's and centers all around you.  I've heard great things about NCI/NIH and that is not that far from Richmond, VA.  Most of us travel a few hours to appts. if not across the country.  I heard if NCI accepts you, they pay for your treatment there and MD Anderson is just the same with their support as well.

                                                                                This burden is to big for one person and I know you don't want to stress your family out, but that's why we're called family.   It is always difficult to burden others, I agree, but family is there for each other, giving and taking and supporting each other through  the good and the bad.  I strongly urge you to consult with family and ask for their help, you can't do this alone, you need their wisdom and support and it will draw you closer as a family.  Also, don't underestimate the power of friends….they can be a huge source of knowledge as well.  It was our dear friends who directed us to our current melanoma dr., surgeon  and facility.  You know the saying, it takes a village to raise a child, well it takes a whole lot of us to help a friend who is battling this beast,  and we're your friends in a roundabout way : ) and we're here to help!

                                                                                Please keep us posted to your discoveries and I will be praying for you that you find the best melanoma care for your husband, don't stop until you find it!     You're doing a great job all by yourself and I applaud you in your valiant efforts but you need reinforcements now to help you find your way through this melanoma maze, it's a tough challenge and there's no choice about whether you want to participate or not!  

                                                                                Take care Linda!

                                                                                Swanee 

                                                                                LindyVA
                                                                                Participant

                                                                                  Thank you all very much for your kind words and wonderful suggestions. Unfortunately my husband tripped on fell on the sidewalk going into a resturant and broke his hip and a rib. We need to address these issues before getting back to the melanoma issue.

                                                                                  Again, thank you very much and prayer for us.

                                                                                   

                                                                                  Linda

                                                                                   

                                                                                   

                                                                                  LindyVA
                                                                                  Participant

                                                                                    Thank you all very much for your kind words and wonderful suggestions. Unfortunately my husband tripped on fell on the sidewalk going into a resturant and broke his hip and a rib. We need to address these issues before getting back to the melanoma issue.

                                                                                    Again, thank you very much and prayer for us.

                                                                                     

                                                                                    Linda

                                                                                     

                                                                                     

                                                                                      5374brian
                                                                                      Participant

                                                                                        Linda, 

                                                                                        My wife was diagnosed with Stage 4 melonoma 12/7/2012. We live in Florida. She is being treated at Moffitt Cancer Center in Tampa. When her dermatologist gave us the news, we did not know what to do first. What a blessing her dermatologist was. He had already contacted Moffitt and they opened an appt up for us on 12/18/2012. Neither of us could believe we were getting into a speciality center so fast. The doctors that we have meet with are Dr. Sondak, Dr. Kudhadkar,Dr. Roa, and Dr. Etamie. I have never been to a specialtiy center before that compares. The team had all the biopsy and scans done in just a few days. They found a small 5mm spot on her brain that Dr. Roa and Dr. Etamie said raditiation would be the best in that situation. The other spots found were lung, liver and abdomen and a few pea size under her skin arm, shoulder and neck. The radiation was done on 1/3/13 and today was here first Yervoy treatment 01/16/13. The team working with us has been unbelievable with all the information they offer. I say all of this because if you do not feel comfortable with who you are dealing with then most definitely look around. We feel that the Moffitt Caner team gets to know the patient and we are just not a number. If it wasn't for there caring i do not feel my wife would be this far in her treatment plan. I hope your next stop you will feel as comfortable as we do at the Moffitt Cancer Center in Tampa Fl. 

                                                                                        5374brian
                                                                                        Participant

                                                                                          Linda, 

                                                                                          My wife was diagnosed with Stage 4 melonoma 12/7/2012. We live in Florida. She is being treated at Moffitt Cancer Center in Tampa. When her dermatologist gave us the news, we did not know what to do first. What a blessing her dermatologist was. He had already contacted Moffitt and they opened an appt up for us on 12/18/2012. Neither of us could believe we were getting into a speciality center so fast. The doctors that we have meet with are Dr. Sondak, Dr. Kudhadkar,Dr. Roa, and Dr. Etamie. I have never been to a specialtiy center before that compares. The team had all the biopsy and scans done in just a few days. They found a small 5mm spot on her brain that Dr. Roa and Dr. Etamie said raditiation would be the best in that situation. The other spots found were lung, liver and abdomen and a few pea size under her skin arm, shoulder and neck. The radiation was done on 1/3/13 and today was here first Yervoy treatment 01/16/13. The team working with us has been unbelievable with all the information they offer. I say all of this because if you do not feel comfortable with who you are dealing with then most definitely look around. We feel that the Moffitt Caner team gets to know the patient and we are just not a number. If it wasn't for there caring i do not feel my wife would be this far in her treatment plan. I hope your next stop you will feel as comfortable as we do at the Moffitt Cancer Center in Tampa Fl. 

                                                                                          5374brian
                                                                                          Participant

                                                                                            Linda, 

                                                                                            My wife was diagnosed with Stage 4 melonoma 12/7/2012. We live in Florida. She is being treated at Moffitt Cancer Center in Tampa. When her dermatologist gave us the news, we did not know what to do first. What a blessing her dermatologist was. He had already contacted Moffitt and they opened an appt up for us on 12/18/2012. Neither of us could believe we were getting into a speciality center so fast. The doctors that we have meet with are Dr. Sondak, Dr. Kudhadkar,Dr. Roa, and Dr. Etamie. I have never been to a specialtiy center before that compares. The team had all the biopsy and scans done in just a few days. They found a small 5mm spot on her brain that Dr. Roa and Dr. Etamie said raditiation would be the best in that situation. The other spots found were lung, liver and abdomen and a few pea size under her skin arm, shoulder and neck. The radiation was done on 1/3/13 and today was here first Yervoy treatment 01/16/13. The team working with us has been unbelievable with all the information they offer. I say all of this because if you do not feel comfortable with who you are dealing with then most definitely look around. We feel that the Moffitt Caner team gets to know the patient and we are just not a number. If it wasn't for there caring i do not feel my wife would be this far in her treatment plan. I hope your next stop you will feel as comfortable as we do at the Moffitt Cancer Center in Tampa Fl. 

                                                                                          LindyVA
                                                                                          Participant

                                                                                            Thank you all very much for your kind words and wonderful suggestions. Unfortunately my husband tripped on fell on the sidewalk going into a resturant and broke his hip and a rib. We need to address these issues before getting back to the melanoma issue.

                                                                                            Again, thank you very much and prayer for us.

                                                                                             

                                                                                            Linda

                                                                                             

                                                                                             

                                                                                            Marilynn Eiken
                                                                                            Participant

                                                                                              Lindy,

                                                                                               

                                                                                              I am gearing up for a second opinion, as well, for my husband.  Never question  yourself questioning a doctor.  I am a nurse and I do it all the time even if I am wrong!  You've gotten some great advice on here and I pray your husbands recovery from his fall will be swift.  Best wishes to you both.

                                                                                               

                                                                                              Marilynn

                                                                                              Marilynn Eiken
                                                                                              Participant

                                                                                                Lindy,

                                                                                                 

                                                                                                I am gearing up for a second opinion, as well, for my husband.  Never question  yourself questioning a doctor.  I am a nurse and I do it all the time even if I am wrong!  You've gotten some great advice on here and I pray your husbands recovery from his fall will be swift.  Best wishes to you both.

                                                                                                 

                                                                                                Marilynn

                                                                                                Marilynn Eiken
                                                                                                Participant

                                                                                                  Lindy,

                                                                                                   

                                                                                                  I am gearing up for a second opinion, as well, for my husband.  Never question  yourself questioning a doctor.  I am a nurse and I do it all the time even if I am wrong!  You've gotten some great advice on here and I pray your husbands recovery from his fall will be swift.  Best wishes to you both.

                                                                                                   

                                                                                                  Marilynn

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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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