› Forums › General Melanoma Community › BRAF Negative and ipi ?
- This topic has 21 replies, 5 voices, and was last updated 7 years, 8 months ago by
JuTMSY4.
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- August 15, 2016 at 6:01 pm
Hello,
I am Stage 3a and did not qualify for S1405 (ipi/interferon arm vs pembrolizumab arm) because I only had 1 sentinal lymph node positive and not 2. Dr. Kirkwood at Hillman Cancer Center recommended interferon as a treatment option. I declined and got a 2nd opinion with Dr. Schucter in Philadelphia. She recommended no treatment because my original melanoma was superficial spreading, 1.3 mm, clark III and Mitosis rate = 0-1/mm2. She said I was low risk. She asked me how I felt about that and I told her I understood what she was saying but I was looking for a treatment option. She sent pre-authorization to my insurance company for ipilimumab at 3mg rather than the 10 mg and I had my first treatment two weeks ago.
Questions are: How will I know if I am a responder to ipilimumab? And will ipilimumab work on BRAF negative melanomas?
Thanks in advance!
Laura
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- August 15, 2016 at 6:12 pm
The thing about being stage 3 is that we have no clue if the treatment is "working". We have no clue if we even still have melanoma cells in our body after surgery. The hope is that IF there are still cells inside, the Ipi will take care of them. The only way to know is if we never have a recurrance, and even if we do have a reccurance some years down the line, does that mean Ipi didn't work? Does it mean it worked but only for a short period of time? We don't know…. fun being stage3, huh? BRAF status doesn't come into play with Ipi, I don't know if there are any studies that have looked into whether it has worked better for those with or without it… but it's not a BRAF targeted drug so you shouldn't worry too much about that part.
I hope your time with Ipi goes smoothly.
All the best,
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- August 15, 2016 at 6:12 pm
The thing about being stage 3 is that we have no clue if the treatment is "working". We have no clue if we even still have melanoma cells in our body after surgery. The hope is that IF there are still cells inside, the Ipi will take care of them. The only way to know is if we never have a recurrance, and even if we do have a reccurance some years down the line, does that mean Ipi didn't work? Does it mean it worked but only for a short period of time? We don't know…. fun being stage3, huh? BRAF status doesn't come into play with Ipi, I don't know if there are any studies that have looked into whether it has worked better for those with or without it… but it's not a BRAF targeted drug so you shouldn't worry too much about that part.
I hope your time with Ipi goes smoothly.
All the best,
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- August 15, 2016 at 6:12 pm
The thing about being stage 3 is that we have no clue if the treatment is "working". We have no clue if we even still have melanoma cells in our body after surgery. The hope is that IF there are still cells inside, the Ipi will take care of them. The only way to know is if we never have a recurrance, and even if we do have a reccurance some years down the line, does that mean Ipi didn't work? Does it mean it worked but only for a short period of time? We don't know…. fun being stage3, huh? BRAF status doesn't come into play with Ipi, I don't know if there are any studies that have looked into whether it has worked better for those with or without it… but it's not a BRAF targeted drug so you shouldn't worry too much about that part.
I hope your time with Ipi goes smoothly.
All the best,
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- August 15, 2016 at 6:16 pm
Welcome and sorry you're dealing with this.
Yes, you're seeing the problem with testing. I was in a similar boat (although higher risk III C staging). The present standard for stage III is interferon or watch and wait with clinical trials abound.
The second question is easier – the answer is yes. BRAF negative folks skip those drugs (because they don't work for them) and go for the other stuff – immunotherapy. It does work. It's work for many here. It worked for me and I'm also BRAF neg.
Technically, as far as any oncologist knows, you should not have any cancer in your body. Nothing suggests you do (I assume you've been scanned as well). So, if you take any treatment, interferon, ipi, pembro, whatever, there's no actual way to know if it's worked – you'll just hopefully continue to be cancer free. Whether they cut it out via surgery or the remaining cells were killed via ipi is anyone's guess (right now).
That's the problem with any stage III treatment where they surgically removed "all" of the cancer. The idea is to kill the remaining cells, if any, but they don't know if they exist at all.
Good luck. Sorry it's a non-answer, but oncology isn't all exact science.
Also, sometimes watch and wait is good too. Don't feel like it's "not doing anything" – you'll be checked every 3 months and in constant contact with your doc. Plus, those drugs will remain on the table.
-Justin
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- August 15, 2016 at 6:33 pm
Jenn and Justin, Thank you for your replies. I guess I already knew the answer to if I was a responder or not. Just wanted to make sure. Yes, Stage 3 sucks. Some days I deal with this ok and other days I am very anxious and frustrated in not knowing my fate. I need to start living life instead of worrying how much time I have on this earth. Some days it consumes me.
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- August 15, 2016 at 6:33 pm
Jenn and Justin, Thank you for your replies. I guess I already knew the answer to if I was a responder or not. Just wanted to make sure. Yes, Stage 3 sucks. Some days I deal with this ok and other days I am very anxious and frustrated in not knowing my fate. I need to start living life instead of worrying how much time I have on this earth. Some days it consumes me.
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- August 15, 2016 at 6:33 pm
Jenn and Justin, Thank you for your replies. I guess I already knew the answer to if I was a responder or not. Just wanted to make sure. Yes, Stage 3 sucks. Some days I deal with this ok and other days I am very anxious and frustrated in not knowing my fate. I need to start living life instead of worrying how much time I have on this earth. Some days it consumes me.
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- August 15, 2016 at 6:16 pm
Welcome and sorry you're dealing with this.
Yes, you're seeing the problem with testing. I was in a similar boat (although higher risk III C staging). The present standard for stage III is interferon or watch and wait with clinical trials abound.
The second question is easier – the answer is yes. BRAF negative folks skip those drugs (because they don't work for them) and go for the other stuff – immunotherapy. It does work. It's work for many here. It worked for me and I'm also BRAF neg.
Technically, as far as any oncologist knows, you should not have any cancer in your body. Nothing suggests you do (I assume you've been scanned as well). So, if you take any treatment, interferon, ipi, pembro, whatever, there's no actual way to know if it's worked – you'll just hopefully continue to be cancer free. Whether they cut it out via surgery or the remaining cells were killed via ipi is anyone's guess (right now).
That's the problem with any stage III treatment where they surgically removed "all" of the cancer. The idea is to kill the remaining cells, if any, but they don't know if they exist at all.
Good luck. Sorry it's a non-answer, but oncology isn't all exact science.
Also, sometimes watch and wait is good too. Don't feel like it's "not doing anything" – you'll be checked every 3 months and in constant contact with your doc. Plus, those drugs will remain on the table.
-Justin
-
- August 15, 2016 at 6:16 pm
Welcome and sorry you're dealing with this.
Yes, you're seeing the problem with testing. I was in a similar boat (although higher risk III C staging). The present standard for stage III is interferon or watch and wait with clinical trials abound.
The second question is easier – the answer is yes. BRAF negative folks skip those drugs (because they don't work for them) and go for the other stuff – immunotherapy. It does work. It's work for many here. It worked for me and I'm also BRAF neg.
Technically, as far as any oncologist knows, you should not have any cancer in your body. Nothing suggests you do (I assume you've been scanned as well). So, if you take any treatment, interferon, ipi, pembro, whatever, there's no actual way to know if it's worked – you'll just hopefully continue to be cancer free. Whether they cut it out via surgery or the remaining cells were killed via ipi is anyone's guess (right now).
That's the problem with any stage III treatment where they surgically removed "all" of the cancer. The idea is to kill the remaining cells, if any, but they don't know if they exist at all.
Good luck. Sorry it's a non-answer, but oncology isn't all exact science.
Also, sometimes watch and wait is good too. Don't feel like it's "not doing anything" – you'll be checked every 3 months and in constant contact with your doc. Plus, those drugs will remain on the table.
-Justin
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- August 16, 2016 at 1:58 am
Hi Laura,
I've followed your posts. You are the poster child for all the reasons to get a second opinion. Dr. Interferon was living in the past and your new doc not only understood your best options, but she nailed the 3mg ipi which from what I've read, offers the same benefits without as much, or any, adverse reactions. Since ipi is a four-dose regime, you will move into watch and wait thereafter with close monitoring. Good job at making the most of a bad situation. With some luck, that will be the end of it.
Gary
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- August 16, 2016 at 1:58 am
Hi Laura,
I've followed your posts. You are the poster child for all the reasons to get a second opinion. Dr. Interferon was living in the past and your new doc not only understood your best options, but she nailed the 3mg ipi which from what I've read, offers the same benefits without as much, or any, adverse reactions. Since ipi is a four-dose regime, you will move into watch and wait thereafter with close monitoring. Good job at making the most of a bad situation. With some luck, that will be the end of it.
Gary
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- August 16, 2016 at 1:58 am
Hi Laura,
I've followed your posts. You are the poster child for all the reasons to get a second opinion. Dr. Interferon was living in the past and your new doc not only understood your best options, but she nailed the 3mg ipi which from what I've read, offers the same benefits without as much, or any, adverse reactions. Since ipi is a four-dose regime, you will move into watch and wait thereafter with close monitoring. Good job at making the most of a bad situation. With some luck, that will be the end of it.
Gary
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- August 17, 2016 at 1:33 pm
Hi Laura,
I'm stage 3a myself. I'm actually meeting with my medical oncologist in a few hours to go over all of my test results, scans, etc. My chest x-ray, pet scan and mri of my brain were all clear. I too only had one lymph node removed from groin and it was positive. I go to the University of Kansas Hospital and my surgical oncologist recommends the clnd of my right groin. So does MD Anderson. Sloan Kettering stated that they would be comfortable recommending me going on therapy, like ipi and having scans every 3-4 months. They thought that is a reasonable approach. So I have actually decided to forego the clnd.
I will find out today whether or not I am BRAF positive or negative. Regarding BRAF positive therapies, I actually spoke to a guy here in Kansas City about a month ago who was diagnosed with stage 4 melanoma but with no primary site. He also did not do the clnd, went on rounds of chemo, did the scans when he needed to and has been NED for six years now. But, he was also BRAF positive. This is what he said to me and I would love to hear other people's opinions on this. He said, actually being BRAF positive is a good thing becasue there are more targeted therapies to be on versus stage 3 or 4 and BRAF negative. I'm going to ask my doctor about that today although it might be a mute point if I'm BRAF negative.
It is my intentions to start on 3mg ipi and do scans when necessary. I will ask about any possible clinical trials but I'm not overly optimistic about getting into one because I had only one positive lymph node and I did not do the clnd. We'll see.
How did the first dose of ipi go for you? Any adverse events, etc??
Stacy
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- August 17, 2016 at 1:33 pm
Hi Laura,
I'm stage 3a myself. I'm actually meeting with my medical oncologist in a few hours to go over all of my test results, scans, etc. My chest x-ray, pet scan and mri of my brain were all clear. I too only had one lymph node removed from groin and it was positive. I go to the University of Kansas Hospital and my surgical oncologist recommends the clnd of my right groin. So does MD Anderson. Sloan Kettering stated that they would be comfortable recommending me going on therapy, like ipi and having scans every 3-4 months. They thought that is a reasonable approach. So I have actually decided to forego the clnd.
I will find out today whether or not I am BRAF positive or negative. Regarding BRAF positive therapies, I actually spoke to a guy here in Kansas City about a month ago who was diagnosed with stage 4 melanoma but with no primary site. He also did not do the clnd, went on rounds of chemo, did the scans when he needed to and has been NED for six years now. But, he was also BRAF positive. This is what he said to me and I would love to hear other people's opinions on this. He said, actually being BRAF positive is a good thing becasue there are more targeted therapies to be on versus stage 3 or 4 and BRAF negative. I'm going to ask my doctor about that today although it might be a mute point if I'm BRAF negative.
It is my intentions to start on 3mg ipi and do scans when necessary. I will ask about any possible clinical trials but I'm not overly optimistic about getting into one because I had only one positive lymph node and I did not do the clnd. We'll see.
How did the first dose of ipi go for you? Any adverse events, etc??
Stacy
-
- August 17, 2016 at 7:42 pm
Lots of thoughts:
First, any person with a non-primary stage 4 diagnosis (generally speaking) would probably skip surgery. The present stage IV treatment plan is either BRAF targeted therapies or Immunotherapy (I think Keytruda/Opdivo is frontline now and combo therapy is still awaiting approval, but I could be wrong).
Second, whether surgery or some form of ipi is better is really a difficult statement. Surgery is more of a blunt instrument (heh), but its permanency is higher relative to any drug. If we knew we could confine the cancer to one area of nodes, it would be a no-brainer to surgically remove them versus using ipi. Of course, locating cancer is very inexact. I understand why people would choose one over the other.
Third, whether BRAF status is beneficial is sort of a condundrum too. Make no mistake, having a positive status gives you more options and more options is good. However, whether you would qualify for ipi (which might be off-lable presurgery) before having to try a BRAF inhibitor first is something that can make the status cumbersome.
When I was DXed, my oncologist commented that she didn't think having a positive status was ideal because it meant you had to try those drugs first before Keytruda/Opdivo. That is obviously different now. However, sometimes having additional approved options isn't ideal.Important takeaway – everything is very individualized. You should consult more than one doctor and consider the risks/benefits of each decision.
Good luck!
-
- August 17, 2016 at 7:42 pm
Lots of thoughts:
First, any person with a non-primary stage 4 diagnosis (generally speaking) would probably skip surgery. The present stage IV treatment plan is either BRAF targeted therapies or Immunotherapy (I think Keytruda/Opdivo is frontline now and combo therapy is still awaiting approval, but I could be wrong).
Second, whether surgery or some form of ipi is better is really a difficult statement. Surgery is more of a blunt instrument (heh), but its permanency is higher relative to any drug. If we knew we could confine the cancer to one area of nodes, it would be a no-brainer to surgically remove them versus using ipi. Of course, locating cancer is very inexact. I understand why people would choose one over the other.
Third, whether BRAF status is beneficial is sort of a condundrum too. Make no mistake, having a positive status gives you more options and more options is good. However, whether you would qualify for ipi (which might be off-lable presurgery) before having to try a BRAF inhibitor first is something that can make the status cumbersome.
When I was DXed, my oncologist commented that she didn't think having a positive status was ideal because it meant you had to try those drugs first before Keytruda/Opdivo. That is obviously different now. However, sometimes having additional approved options isn't ideal.Important takeaway – everything is very individualized. You should consult more than one doctor and consider the risks/benefits of each decision.
Good luck!
-
- August 17, 2016 at 7:42 pm
Lots of thoughts:
First, any person with a non-primary stage 4 diagnosis (generally speaking) would probably skip surgery. The present stage IV treatment plan is either BRAF targeted therapies or Immunotherapy (I think Keytruda/Opdivo is frontline now and combo therapy is still awaiting approval, but I could be wrong).
Second, whether surgery or some form of ipi is better is really a difficult statement. Surgery is more of a blunt instrument (heh), but its permanency is higher relative to any drug. If we knew we could confine the cancer to one area of nodes, it would be a no-brainer to surgically remove them versus using ipi. Of course, locating cancer is very inexact. I understand why people would choose one over the other.
Third, whether BRAF status is beneficial is sort of a condundrum too. Make no mistake, having a positive status gives you more options and more options is good. However, whether you would qualify for ipi (which might be off-lable presurgery) before having to try a BRAF inhibitor first is something that can make the status cumbersome.
When I was DXed, my oncologist commented that she didn't think having a positive status was ideal because it meant you had to try those drugs first before Keytruda/Opdivo. That is obviously different now. However, sometimes having additional approved options isn't ideal.Important takeaway – everything is very individualized. You should consult more than one doctor and consider the risks/benefits of each decision.
Good luck!
-
- August 17, 2016 at 1:33 pm
Hi Laura,
I'm stage 3a myself. I'm actually meeting with my medical oncologist in a few hours to go over all of my test results, scans, etc. My chest x-ray, pet scan and mri of my brain were all clear. I too only had one lymph node removed from groin and it was positive. I go to the University of Kansas Hospital and my surgical oncologist recommends the clnd of my right groin. So does MD Anderson. Sloan Kettering stated that they would be comfortable recommending me going on therapy, like ipi and having scans every 3-4 months. They thought that is a reasonable approach. So I have actually decided to forego the clnd.
I will find out today whether or not I am BRAF positive or negative. Regarding BRAF positive therapies, I actually spoke to a guy here in Kansas City about a month ago who was diagnosed with stage 4 melanoma but with no primary site. He also did not do the clnd, went on rounds of chemo, did the scans when he needed to and has been NED for six years now. But, he was also BRAF positive. This is what he said to me and I would love to hear other people's opinions on this. He said, actually being BRAF positive is a good thing becasue there are more targeted therapies to be on versus stage 3 or 4 and BRAF negative. I'm going to ask my doctor about that today although it might be a mute point if I'm BRAF negative.
It is my intentions to start on 3mg ipi and do scans when necessary. I will ask about any possible clinical trials but I'm not overly optimistic about getting into one because I had only one positive lymph node and I did not do the clnd. We'll see.
How did the first dose of ipi go for you? Any adverse events, etc??
Stacy
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