cksterne

Hi-

i was diagnosed with metastatic melanoma in 2009.  I did IL-2 (utterly vile, laid me out flat, and I got no benefit at all.)  I've also done a number of clinical trials without much effect until I did BRAF, which gave me some shrinkage and then stability for nearly 15 months.    I had a number of side effects, including joint pain, itching and fatigue, so I ended up on a low dose.  I got some good reduction, but it stalled.  I did Ipi this fall.  I worked fulltime through all four infusions, but felt progressively more fatigued after each, and immediately after the fourth infusion had major nausea.  From that point, I had terrible diarrhea, and ended up being one of that very small percentage of people who get ulcerative colitis from Yervoy.  It was a bad scene, I ended up in the hospital for two weeks, and they nearly had to perform surgery on my colon.  A combination of Remicade and Prednisone eventually handled the issue.   After discharge from the hospital, they started reducing the steroid dose, and the symptoms came right back.  So I'm still taking a lot of steroids, and I've started a Remicade infusion protocol.  After the next infusion we'll try reducing the Prednisone again, and see of the Remicade infusions will keep the nasty at bay.   BUT, I had a PET/CT this week, and low and behold, I got a really good result from the Yervoy.  I had a lot of lymph node activity that is now completely gone, and my primary tumors have shrunk considerably.  And the positive effects may still be happening.  Given this result, I would make the decision to to Yervoy even if I knew I would be an unlucky recipient of major side effects.   If I start getting regrowth, my next stop is PD-1.

Melanoma is a difficult road to travel, but there is a lot of optimism these days, the science is moving at lightening speed.  The succession of trials has kept me going much longer than first expected – here I am at the three year mark, still working, still living a very full life.   Hang in there, and embrace trials – I'm convinced that the various trials back to back cumulatively, has brought me this far – and new things keep coming along at a good pace.   Whether one has cancer or doesn't have cancer, no one knows what the future holds, and every day is a blessing.

C in SB

Hi-

i was diagnosed with metastatic melanoma in 2009.  I did IL-2 (utterly vile, laid me out flat, and I got no benefit at all.)  I've also done a number of clinical trials without much effect until I did BRAF, which gave me some shrinkage and then stability for nearly 15 months.    I had a number of side effects, including joint pain, itching and fatigue, so I ended up on a low dose.  I got some good reduction, but it stalled.  I did Ipi this fall.  I worked fulltime through all four infusions, but felt progressively more fatigued after each, and immediately after the fourth infusion had major nausea.  From that point, I had terrible diarrhea, and ended up being one of that very small percentage of people who get ulcerative colitis from Yervoy.  It was a bad scene, I ended up in the hospital for two weeks, and they nearly had to perform surgery on my colon.  A combination of Remicade and Prednisone eventually handled the issue.   After discharge from the hospital, they started reducing the steroid dose, and the symptoms came right back.  So I'm still taking a lot of steroids, and I've started a Remicade infusion protocol.  After the next infusion we'll try reducing the Prednisone again, and see of the Remicade infusions will keep the nasty at bay.   BUT, I had a PET/CT this week, and low and behold, I got a really good result from the Yervoy.  I had a lot of lymph node activity that is now completely gone, and my primary tumors have shrunk considerably.  And the positive effects may still be happening.  Given this result, I would make the decision to to Yervoy even if I knew I would be an unlucky recipient of major side effects.   If I start getting regrowth, my next stop is PD-1.

Melanoma is a difficult road to travel, but there is a lot of optimism these days, the science is moving at lightening speed.  The succession of trials has kept me going much longer than first expected – here I am at the three year mark, still working, still living a very full life.   Hang in there, and embrace trials – I'm convinced that the various trials back to back cumulatively, has brought me this far – and new things keep coming along at a good pace.   Whether one has cancer or doesn't have cancer, no one knows what the future holds, and every day is a blessing.

C in SB

Hi-

i was diagnosed with metastatic melanoma in 2009.  I did IL-2 (utterly vile, laid me out flat, and I got no benefit at all.)  I've also done a number of clinical trials without much effect until I did BRAF, which gave me some shrinkage and then stability for nearly 15 months.    I had a number of side effects, including joint pain, itching and fatigue, so I ended up on a low dose.  I got some good reduction, but it stalled.  I did Ipi this fall.  I worked fulltime through all four infusions, but felt progressively more fatigued after each, and immediately after the fourth infusion had major nausea.  From that point, I had terrible diarrhea, and ended up being one of that very small percentage of people who get ulcerative colitis from Yervoy.  It was a bad scene, I ended up in the hospital for two weeks, and they nearly had to perform surgery on my colon.  A combination of Remicade and Prednisone eventually handled the issue.   After discharge from the hospital, they started reducing the steroid dose, and the symptoms came right back.  So I'm still taking a lot of steroids, and I've started a Remicade infusion protocol.  After the next infusion we'll try reducing the Prednisone again, and see of the Remicade infusions will keep the nasty at bay.   BUT, I had a PET/CT this week, and low and behold, I got a really good result from the Yervoy.  I had a lot of lymph node activity that is now completely gone, and my primary tumors have shrunk considerably.  And the positive effects may still be happening.  Given this result, I would make the decision to to Yervoy even if I knew I would be an unlucky recipient of major side effects.   If I start getting regrowth, my next stop is PD-1.

Melanoma is a difficult road to travel, but there is a lot of optimism these days, the science is moving at lightening speed.  The succession of trials has kept me going much longer than first expected – here I am at the three year mark, still working, still living a very full life.   Hang in there, and embrace trials – I'm convinced that the various trials back to back cumulatively, has brought me this far – and new things keep coming along at a good pace.   Whether one has cancer or doesn't have cancer, no one knows what the future holds, and every day is a blessing.

C in SB