› Forums › General Melanoma Community › BRAF mutation
- This topic has 24 replies, 5 voices, and was last updated 7 years, 4 months ago by
Mark_DC.
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- December 16, 2016 at 2:09 pm
What is the significance of the mutation? Is it good to have, or bad? I think my tissue has been sent out at least twice to find out if I have the mutation with two different doctors, and I haven't found out the result with either one, so I'm not sure if the tissue was lost in the mail, or what. After my last pet scan, I had a couple more nodes light up. I had a needle biopsy done on the larger node which came back positive and the doctor talked about finding out the BRAF mutation which reminded of that.
Back to surgery on Wednesday, and the other 2 nodes they are going to be watch and wait. The surgeon is concerned with nerve damage because of scar tissue since this is an area I had the surgery previously.
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- December 16, 2016 at 2:31 pm
It's not really good or bad to have a BRAF mutation. Having a BRAF V600 E or K (the most common 2 types) mutation opens the door to additional treatment options. It doesn't necessarily change your odds of response to Ipi, Nivo, or Pembro, but would give your doctors some additional drugs to attack with… which are most often a combo of MEK and Taf. BRAF inhibitor drugs tend to work more rapidly than the immunotherapy infusions, and can sometimes be effective in BRAF positive patients for many years. Although, more often than not, melanoma eventually mutates its way around the BRAF drugs, and patients will then be moved onto Ipi, Nivo, or Pembro.
Finding out if you are BRAF or not, is most certainly useful info. It's also important to know where your doc stages you, as this will determine the approved treatment options.
Wishing you a speedy recovery and a smooth surgery this week. Bummer to find anything lighting up… sorry you're having to head back in for more cutting.
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- December 16, 2016 at 2:31 pm
It's not really good or bad to have a BRAF mutation. Having a BRAF V600 E or K (the most common 2 types) mutation opens the door to additional treatment options. It doesn't necessarily change your odds of response to Ipi, Nivo, or Pembro, but would give your doctors some additional drugs to attack with… which are most often a combo of MEK and Taf. BRAF inhibitor drugs tend to work more rapidly than the immunotherapy infusions, and can sometimes be effective in BRAF positive patients for many years. Although, more often than not, melanoma eventually mutates its way around the BRAF drugs, and patients will then be moved onto Ipi, Nivo, or Pembro.
Finding out if you are BRAF or not, is most certainly useful info. It's also important to know where your doc stages you, as this will determine the approved treatment options.
Wishing you a speedy recovery and a smooth surgery this week. Bummer to find anything lighting up… sorry you're having to head back in for more cutting.
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- December 16, 2016 at 2:49 pm
I jumped straight from stage 1a to stage IV, so I'm not sure where the "no man's land" of stage III is for treatment options. However… if your doc is concerned about nerve damage, and leaves the additional nodes as "watch and wait", he could potentially stage you as "stage 3 unresectable", which would open doors for more treatment options.
Here's a link with some info….. scroll about 1/2 way down the page. : ) http://www.cancer.net/cancer-types/melanoma/treatment-options
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- December 16, 2016 at 2:49 pm
I jumped straight from stage 1a to stage IV, so I'm not sure where the "no man's land" of stage III is for treatment options. However… if your doc is concerned about nerve damage, and leaves the additional nodes as "watch and wait", he could potentially stage you as "stage 3 unresectable", which would open doors for more treatment options.
Here's a link with some info….. scroll about 1/2 way down the page. : ) http://www.cancer.net/cancer-types/melanoma/treatment-options
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- December 16, 2016 at 2:49 pm
I jumped straight from stage 1a to stage IV, so I'm not sure where the "no man's land" of stage III is for treatment options. However… if your doc is concerned about nerve damage, and leaves the additional nodes as "watch and wait", he could potentially stage you as "stage 3 unresectable", which would open doors for more treatment options.
Here's a link with some info….. scroll about 1/2 way down the page. : ) http://www.cancer.net/cancer-types/melanoma/treatment-options
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- December 16, 2016 at 2:31 pm
It's not really good or bad to have a BRAF mutation. Having a BRAF V600 E or K (the most common 2 types) mutation opens the door to additional treatment options. It doesn't necessarily change your odds of response to Ipi, Nivo, or Pembro, but would give your doctors some additional drugs to attack with… which are most often a combo of MEK and Taf. BRAF inhibitor drugs tend to work more rapidly than the immunotherapy infusions, and can sometimes be effective in BRAF positive patients for many years. Although, more often than not, melanoma eventually mutates its way around the BRAF drugs, and patients will then be moved onto Ipi, Nivo, or Pembro.
Finding out if you are BRAF or not, is most certainly useful info. It's also important to know where your doc stages you, as this will determine the approved treatment options.
Wishing you a speedy recovery and a smooth surgery this week. Bummer to find anything lighting up… sorry you're having to head back in for more cutting.
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- December 16, 2016 at 4:42 pm
You should get your onc to consider you unresectable stage 3, which would open the door to all of the immunotherapy treatments. That's what I did, because there's really no use in doing surgery again, when the chances of cells having gotten past the lymph area at this point is pretty high. I had same situation as you, was on Ipi, did all the main doses and a couple maintenance ones. September scan showed lymph node light up, needle biopsy, positive for mel, and now I am on Ipi/Nivo combo. I am BRAF positive, and very glad since that opens the door to those targeted treatments if I ever need them.
My onc tried using my needle biopsy tissue for BRAF testing but it was not sufficient enough, which may be what is happening with yours. My onc requested my original tumor, the mole that was removed from my leg, and was able to get that tested. Glad they keep these things around since it was removed a year prior to the testing.
With surgery, you go back to NED, and you will not have any treatment options. Without surgery, you are not NED, but you have all options available. Something to think about.
All the best,
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- December 18, 2016 at 3:29 am
Hi April, i was stage iii and took ipi adjuvant, but liver reaction too bad (like you) so stopped ipi, then local recurrence (again like your case) and braf negative (like you!). Doctor said he would not excise since it would just come back again, so bumped me up to keytruda and have had fifth infusion and seem to be doing ok. Its kind of scary not excising since you can feel the tumor and feel it grow (or i hope just become inflamed) but its probably a good option. So i agree with the others and this is probably a very good option. Can excise later or try intralesional if this does not work. Good luck!!!!
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- December 18, 2016 at 3:29 am
Hi April, i was stage iii and took ipi adjuvant, but liver reaction too bad (like you) so stopped ipi, then local recurrence (again like your case) and braf negative (like you!). Doctor said he would not excise since it would just come back again, so bumped me up to keytruda and have had fifth infusion and seem to be doing ok. Its kind of scary not excising since you can feel the tumor and feel it grow (or i hope just become inflamed) but its probably a good option. So i agree with the others and this is probably a very good option. Can excise later or try intralesional if this does not work. Good luck!!!!
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- December 18, 2016 at 3:29 am
Hi April, i was stage iii and took ipi adjuvant, but liver reaction too bad (like you) so stopped ipi, then local recurrence (again like your case) and braf negative (like you!). Doctor said he would not excise since it would just come back again, so bumped me up to keytruda and have had fifth infusion and seem to be doing ok. Its kind of scary not excising since you can feel the tumor and feel it grow (or i hope just become inflamed) but its probably a good option. So i agree with the others and this is probably a very good option. Can excise later or try intralesional if this does not work. Good luck!!!!
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- December 16, 2016 at 4:42 pm
You should get your onc to consider you unresectable stage 3, which would open the door to all of the immunotherapy treatments. That's what I did, because there's really no use in doing surgery again, when the chances of cells having gotten past the lymph area at this point is pretty high. I had same situation as you, was on Ipi, did all the main doses and a couple maintenance ones. September scan showed lymph node light up, needle biopsy, positive for mel, and now I am on Ipi/Nivo combo. I am BRAF positive, and very glad since that opens the door to those targeted treatments if I ever need them.
My onc tried using my needle biopsy tissue for BRAF testing but it was not sufficient enough, which may be what is happening with yours. My onc requested my original tumor, the mole that was removed from my leg, and was able to get that tested. Glad they keep these things around since it was removed a year prior to the testing.
With surgery, you go back to NED, and you will not have any treatment options. Without surgery, you are not NED, but you have all options available. Something to think about.
All the best,
-
- December 16, 2016 at 4:42 pm
You should get your onc to consider you unresectable stage 3, which would open the door to all of the immunotherapy treatments. That's what I did, because there's really no use in doing surgery again, when the chances of cells having gotten past the lymph area at this point is pretty high. I had same situation as you, was on Ipi, did all the main doses and a couple maintenance ones. September scan showed lymph node light up, needle biopsy, positive for mel, and now I am on Ipi/Nivo combo. I am BRAF positive, and very glad since that opens the door to those targeted treatments if I ever need them.
My onc tried using my needle biopsy tissue for BRAF testing but it was not sufficient enough, which may be what is happening with yours. My onc requested my original tumor, the mole that was removed from my leg, and was able to get that tested. Glad they keep these things around since it was removed a year prior to the testing.
With surgery, you go back to NED, and you will not have any treatment options. Without surgery, you are not NED, but you have all options available. Something to think about.
All the best,
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- December 16, 2016 at 7:08 pm
I put this post together some time ago. While therapies have advanced, the info about BRAF is still valid.
Hang in there. I wish you well. Celeste
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- December 16, 2016 at 7:08 pm
I put this post together some time ago. While therapies have advanced, the info about BRAF is still valid.
Hang in there. I wish you well. Celeste
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- December 16, 2016 at 7:08 pm
I put this post together some time ago. While therapies have advanced, the info about BRAF is still valid.
Hang in there. I wish you well. Celeste
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