› Forums › General Melanoma Community › zelboraf resistant what next.
- This topic has 27 replies, 6 voices, and was last updated 13 years ago by
JC.
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- November 30, 2012 at 8:36 pm
Melanoma now resistant to zelboraf after 14 months. What do I do next. Oncologist thinks I should do yervoy while my turmor load is small. I'm thinking about trying to join a clinical trial. I live in idaho so would have to travel to be involved in a trail. I would appreciate anyones thoughts.
Melanoma now resistant to zelboraf after 14 months. What do I do next. Oncologist thinks I should do yervoy while my turmor load is small. I'm thinking about trying to join a clinical trial. I live in idaho so would have to travel to be involved in a trail. I would appreciate anyones thoughts.
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- November 30, 2012 at 10:42 pm
Remember Yervoy works very slowly. I stopped Zel to start Ipi 10/1, also with very little tumor burden, but still responding. Diagnosed with 2 brain mets, did SRS, then the tiny cardiac tumor I had really ballooned. Now back on Zel and have last round of Ipi 12/3. Traditionally Yervoy scans are only done after 12 and 24 weeks. That can be a long time. My tumors were always slow growing until now. i Haven’t even made it to the 12 week scan mark yet!! -
- November 30, 2012 at 10:42 pm
Remember Yervoy works very slowly. I stopped Zel to start Ipi 10/1, also with very little tumor burden, but still responding. Diagnosed with 2 brain mets, did SRS, then the tiny cardiac tumor I had really ballooned. Now back on Zel and have last round of Ipi 12/3. Traditionally Yervoy scans are only done after 12 and 24 weeks. That can be a long time. My tumors were always slow growing until now. i Haven’t even made it to the 12 week scan mark yet!! -
- November 30, 2012 at 10:42 pm
Remember Yervoy works very slowly. I stopped Zel to start Ipi 10/1, also with very little tumor burden, but still responding. Diagnosed with 2 brain mets, did SRS, then the tiny cardiac tumor I had really ballooned. Now back on Zel and have last round of Ipi 12/3. Traditionally Yervoy scans are only done after 12 and 24 weeks. That can be a long time. My tumors were always slow growing until now. i Haven’t even made it to the 12 week scan mark yet!! -
- November 30, 2012 at 11:11 pm
I'm sorry I don't have any suggestions, but wanted to say hello and offer my prayers to you. We live in the same neck of the woods – I'm in Weiser. I was diagnosed in October of 2010, fortunately at Stage 1B, and have remained there to date. This site is full of wonderful people and such valuable information, I hope you will receive much needed information!!
Shelley
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- November 30, 2012 at 11:11 pm
I'm sorry I don't have any suggestions, but wanted to say hello and offer my prayers to you. We live in the same neck of the woods – I'm in Weiser. I was diagnosed in October of 2010, fortunately at Stage 1B, and have remained there to date. This site is full of wonderful people and such valuable information, I hope you will receive much needed information!!
Shelley
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- November 30, 2012 at 11:11 pm
I'm sorry I don't have any suggestions, but wanted to say hello and offer my prayers to you. We live in the same neck of the woods – I'm in Weiser. I was diagnosed in October of 2010, fortunately at Stage 1B, and have remained there to date. This site is full of wonderful people and such valuable information, I hope you will receive much needed information!!
Shelley
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- December 2, 2012 at 2:25 am
I did have the wide excision and SNB, all negative for spread thankfully. After reading so many stories of people that have advanced after being diagnosed at 1B, I do worry, but know I'm really one of the lucky ones and hopefully my journey ends with the surgery. I wish you the very best, and will keep you in my prayers.
Shelley
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- December 2, 2012 at 11:18 am
"After reading so many stories of people that have advanced after being diagnosed at 1B, I do worry," I say and think that same thing all the time, but the response usually is the statistics don't show that and we're only reading the stories of people who post because the others are out living and not posting, etc. . . I don't know if I completely buy that, but. . . .
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- December 2, 2012 at 11:18 am
"After reading so many stories of people that have advanced after being diagnosed at 1B, I do worry," I say and think that same thing all the time, but the response usually is the statistics don't show that and we're only reading the stories of people who post because the others are out living and not posting, etc. . . I don't know if I completely buy that, but. . . .
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- December 2, 2012 at 11:18 am
"After reading so many stories of people that have advanced after being diagnosed at 1B, I do worry," I say and think that same thing all the time, but the response usually is the statistics don't show that and we're only reading the stories of people who post because the others are out living and not posting, etc. . . I don't know if I completely buy that, but. . . .
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- December 2, 2012 at 2:25 am
I did have the wide excision and SNB, all negative for spread thankfully. After reading so many stories of people that have advanced after being diagnosed at 1B, I do worry, but know I'm really one of the lucky ones and hopefully my journey ends with the surgery. I wish you the very best, and will keep you in my prayers.
Shelley
-
- December 2, 2012 at 2:25 am
I did have the wide excision and SNB, all negative for spread thankfully. After reading so many stories of people that have advanced after being diagnosed at 1B, I do worry, but know I'm really one of the lucky ones and hopefully my journey ends with the surgery. I wish you the very best, and will keep you in my prayers.
Shelley
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- November 30, 2012 at 11:45 pm
Wow! It must have been such a blow to learn that your melanoma is progressing again! I mean, we all know that Zelboraf doesn't work forever, but you had such a great response for such a long time! I'm so sorry for your bad news.
I understand your dilemma. Any of the monoclonal antibody-based therapies (Ipi, anti-PD1, anti-PDL1, etc) take several months to exert their effect. Not everybody responds to any given treatment. And, as happened with Amy, sometimes (not every time), when a tumor becomes resistant to Zelboraf it starts to grow faster than it did originally. So time is of the essence here.
Based on PRELIMINARY data (you might want to watch the recorded webinar about anti-PD1–the link was posted earlier today) more people respond to anti-PD1 than respond to Ipi, which would suggest you might want to try a clinical trial. However, it takes time to get into a clinical trial and I don't know if you would have to travel to a trial site. Since Ipi is already FDA approved, you could start that right away.
If your tumor burden is low and it is not growing very fast, an anti-PD1 or anti-PDL1 clinical trial might be a good idea. That way, if you don't respond, you could immediately switch to Ipi. However, since it will take several months for the Ipi to work, perhaps you should start with that right away. Nobody–not even the doctors–has enough experience with these new therapies to predict exactly what will happen with your case. All you can do is decide which option is the most comfortable for you and go with that. There is no "right" or "wrong" answer here.
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- December 1, 2012 at 3:51 am
I wish you the best of luck, at least you are going with an approved drug and not scrambling and muddling through the approvals process only to maybe get on something with more unknowns. I have had limited side effects on Ipi but my dr did warn me there is something about Zel -> Ipi in sequence that makes you more susceptible to the Ipi rash. I would definitely push your doc for earlier scans if you have any symptoms. As I stated clearly above, according to my doc I was still responding to Zel. Do your homework though, known that on Yervoy things often get worse before they get better. I know the latest PD1 trial at Vandy filled in a flash. -
- December 1, 2012 at 3:51 am
I wish you the best of luck, at least you are going with an approved drug and not scrambling and muddling through the approvals process only to maybe get on something with more unknowns. I have had limited side effects on Ipi but my dr did warn me there is something about Zel -> Ipi in sequence that makes you more susceptible to the Ipi rash. I would definitely push your doc for earlier scans if you have any symptoms. As I stated clearly above, according to my doc I was still responding to Zel. Do your homework though, known that on Yervoy things often get worse before they get better. I know the latest PD1 trial at Vandy filled in a flash. -
- December 1, 2012 at 3:51 am
I wish you the best of luck, at least you are going with an approved drug and not scrambling and muddling through the approvals process only to maybe get on something with more unknowns. I have had limited side effects on Ipi but my dr did warn me there is something about Zel -> Ipi in sequence that makes you more susceptible to the Ipi rash. I would definitely push your doc for earlier scans if you have any symptoms. As I stated clearly above, according to my doc I was still responding to Zel. Do your homework though, known that on Yervoy things often get worse before they get better. I know the latest PD1 trial at Vandy filled in a flash.
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- November 30, 2012 at 11:45 pm
Wow! It must have been such a blow to learn that your melanoma is progressing again! I mean, we all know that Zelboraf doesn't work forever, but you had such a great response for such a long time! I'm so sorry for your bad news.
I understand your dilemma. Any of the monoclonal antibody-based therapies (Ipi, anti-PD1, anti-PDL1, etc) take several months to exert their effect. Not everybody responds to any given treatment. And, as happened with Amy, sometimes (not every time), when a tumor becomes resistant to Zelboraf it starts to grow faster than it did originally. So time is of the essence here.
Based on PRELIMINARY data (you might want to watch the recorded webinar about anti-PD1–the link was posted earlier today) more people respond to anti-PD1 than respond to Ipi, which would suggest you might want to try a clinical trial. However, it takes time to get into a clinical trial and I don't know if you would have to travel to a trial site. Since Ipi is already FDA approved, you could start that right away.
If your tumor burden is low and it is not growing very fast, an anti-PD1 or anti-PDL1 clinical trial might be a good idea. That way, if you don't respond, you could immediately switch to Ipi. However, since it will take several months for the Ipi to work, perhaps you should start with that right away. Nobody–not even the doctors–has enough experience with these new therapies to predict exactly what will happen with your case. All you can do is decide which option is the most comfortable for you and go with that. There is no "right" or "wrong" answer here.
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- November 30, 2012 at 11:45 pm
Wow! It must have been such a blow to learn that your melanoma is progressing again! I mean, we all know that Zelboraf doesn't work forever, but you had such a great response for such a long time! I'm so sorry for your bad news.
I understand your dilemma. Any of the monoclonal antibody-based therapies (Ipi, anti-PD1, anti-PDL1, etc) take several months to exert their effect. Not everybody responds to any given treatment. And, as happened with Amy, sometimes (not every time), when a tumor becomes resistant to Zelboraf it starts to grow faster than it did originally. So time is of the essence here.
Based on PRELIMINARY data (you might want to watch the recorded webinar about anti-PD1–the link was posted earlier today) more people respond to anti-PD1 than respond to Ipi, which would suggest you might want to try a clinical trial. However, it takes time to get into a clinical trial and I don't know if you would have to travel to a trial site. Since Ipi is already FDA approved, you could start that right away.
If your tumor burden is low and it is not growing very fast, an anti-PD1 or anti-PDL1 clinical trial might be a good idea. That way, if you don't respond, you could immediately switch to Ipi. However, since it will take several months for the Ipi to work, perhaps you should start with that right away. Nobody–not even the doctors–has enough experience with these new therapies to predict exactly what will happen with your case. All you can do is decide which option is the most comfortable for you and go with that. There is no "right" or "wrong" answer here.
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- December 1, 2012 at 4:39 pm
Hello,
Ippi may be slow but for some it works well and not to slow. We watched the sub q's shrink. Even the one tumor under the skin that was pushing on the spine we could see it shrink away.
If you want to read more check out my husbands profile. He is now NED (no evidence of disease) and was Stage IV with liver, lung, the one on the spine and 4 sub q's.
Judy (loving wife of Gene)
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- December 1, 2012 at 4:39 pm
Hello,
Ippi may be slow but for some it works well and not to slow. We watched the sub q's shrink. Even the one tumor under the skin that was pushing on the spine we could see it shrink away.
If you want to read more check out my husbands profile. He is now NED (no evidence of disease) and was Stage IV with liver, lung, the one on the spine and 4 sub q's.
Judy (loving wife of Gene)
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- December 1, 2012 at 4:39 pm
Hello,
Ippi may be slow but for some it works well and not to slow. We watched the sub q's shrink. Even the one tumor under the skin that was pushing on the spine we could see it shrink away.
If you want to read more check out my husbands profile. He is now NED (no evidence of disease) and was Stage IV with liver, lung, the one on the spine and 4 sub q's.
Judy (loving wife of Gene)
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