› Forums › General Melanoma Community › What next after BRAF
- This topic has 9 replies, 3 voices, and was last updated 13 years, 8 months ago by
Hereiam.
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- October 11, 2011 at 2:57 am
Any suggestions for next plan of attack after BRAF not working?
After 3 weeks on Vemurafenib my dad has developed a egg size lump in his throat and is having scans this Monday. What do we do if they take him off this drug? Hes 64 with liver spleen and prior craniotomy. Not sure if theres anything going on up there yet. Any experiences after BRAF would be great. Thanks.
Nahmi from Melbourne
Any suggestions for next plan of attack after BRAF not working?
After 3 weeks on Vemurafenib my dad has developed a egg size lump in his throat and is having scans this Monday. What do we do if they take him off this drug? Hes 64 with liver spleen and prior craniotomy. Not sure if theres anything going on up there yet. Any experiences after BRAF would be great. Thanks.
Nahmi from Melbourne
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- October 11, 2011 at 4:14 am
Nahmi, has the lump increased in size over the last few days? If so, how much? Has your dad spoken with his oncologist yet?
BRAF inhibitors, like other melanoma drugs may work well for some people. However, others may not respond as expected and therefore it is good to look at what to try next (as you have mentioned).
I think that surgery, if possible is the best option especially if the tumour burden is not high. Yervoy could be tried next, but that would depend on what the oncologist recommends. IL-2 (interleukin-2) is another treatment that is used in the US, and it is also worth considering. However, I don't know if it is available in Melbourne.
Another option called TIL treatment or adoptive cell therapy could be a possibility, but it is not available in many places outside of the US.
Clinical trials are also worth investigating, especially any that involve Anti PD-1 treatment.
Hopefully your dad's oncologist can give him some good advice on all this.
Take care
Frank from Australia
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- October 11, 2011 at 4:14 am
Nahmi, has the lump increased in size over the last few days? If so, how much? Has your dad spoken with his oncologist yet?
BRAF inhibitors, like other melanoma drugs may work well for some people. However, others may not respond as expected and therefore it is good to look at what to try next (as you have mentioned).
I think that surgery, if possible is the best option especially if the tumour burden is not high. Yervoy could be tried next, but that would depend on what the oncologist recommends. IL-2 (interleukin-2) is another treatment that is used in the US, and it is also worth considering. However, I don't know if it is available in Melbourne.
Another option called TIL treatment or adoptive cell therapy could be a possibility, but it is not available in many places outside of the US.
Clinical trials are also worth investigating, especially any that involve Anti PD-1 treatment.
Hopefully your dad's oncologist can give him some good advice on all this.
Take care
Frank from Australia
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- October 11, 2011 at 5:17 am
Hi Frank I don't think it's increased, hard to tell though. I rang Peter mac and they never put you through to the oncologist so I spoke to a nurse who said she would get a doctor to call back. The nurse rang back and said see your local GP. He did this and the poor GP had no idea. We finally got a call back from the braf trial nurse who said he needed a pet scan blood tests and ECG Monday, and he would also see the oncologist. He has to brings his BRAF tablets in as they will take him off it if its not working. What's the chances? I was so hopeful this would work but this lump doesn't feel right to me – my gut feeling is melanoma. They pop up so quickly is scarey. So I suppose we will know how the tumor burden is by Monday afternoon and what next to do. The anti pd1 trial excludes central nervous system disease. IL-2 but not sure its here in Melbourne. TIL not here either. Maybe IPI is the next step.
Thanks Franks will keep in touch.
Nahmi from Melbourne.
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- October 11, 2011 at 5:17 am
Hi Frank I don't think it's increased, hard to tell though. I rang Peter mac and they never put you through to the oncologist so I spoke to a nurse who said she would get a doctor to call back. The nurse rang back and said see your local GP. He did this and the poor GP had no idea. We finally got a call back from the braf trial nurse who said he needed a pet scan blood tests and ECG Monday, and he would also see the oncologist. He has to brings his BRAF tablets in as they will take him off it if its not working. What's the chances? I was so hopeful this would work but this lump doesn't feel right to me – my gut feeling is melanoma. They pop up so quickly is scarey. So I suppose we will know how the tumor burden is by Monday afternoon and what next to do. The anti pd1 trial excludes central nervous system disease. IL-2 but not sure its here in Melbourne. TIL not here either. Maybe IPI is the next step.
Thanks Franks will keep in touch.
Nahmi from Melbourne.
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- October 11, 2011 at 5:17 am
Hi Frank I don't think it's increased, hard to tell though. I rang Peter mac and they never put you through to the oncologist so I spoke to a nurse who said she would get a doctor to call back. The nurse rang back and said see your local GP. He did this and the poor GP had no idea. We finally got a call back from the braf trial nurse who said he needed a pet scan blood tests and ECG Monday, and he would also see the oncologist. He has to brings his BRAF tablets in as they will take him off it if its not working. What's the chances? I was so hopeful this would work but this lump doesn't feel right to me – my gut feeling is melanoma. They pop up so quickly is scarey. So I suppose we will know how the tumor burden is by Monday afternoon and what next to do. The anti pd1 trial excludes central nervous system disease. IL-2 but not sure its here in Melbourne. TIL not here either. Maybe IPI is the next step.
Thanks Franks will keep in touch.
Nahmi from Melbourne.
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- October 11, 2011 at 4:14 am
Nahmi, has the lump increased in size over the last few days? If so, how much? Has your dad spoken with his oncologist yet?
BRAF inhibitors, like other melanoma drugs may work well for some people. However, others may not respond as expected and therefore it is good to look at what to try next (as you have mentioned).
I think that surgery, if possible is the best option especially if the tumour burden is not high. Yervoy could be tried next, but that would depend on what the oncologist recommends. IL-2 (interleukin-2) is another treatment that is used in the US, and it is also worth considering. However, I don't know if it is available in Melbourne.
Another option called TIL treatment or adoptive cell therapy could be a possibility, but it is not available in many places outside of the US.
Clinical trials are also worth investigating, especially any that involve Anti PD-1 treatment.
Hopefully your dad's oncologist can give him some good advice on all this.
Take care
Frank from Australia
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- October 12, 2011 at 12:00 pm
Hi Nahmi,
I am so sorry about all the crazy stuff you, your dad and family are going through. I truthfully hope, that his oncologist will advise something, that will be effective!
My brother was suffering from melanoma stage 3 (diganosed in 2010) and after several surgeries he had to undergo chemotherapy. Unfortunately, he did not respond to it at all, so his onc adviced to try out virotherapy. Well, I was very cautious about this, but we decided to give it a try. It turned out to be effective on him, and, most importantly, he was not experiencing severe side-effects (it was very important for him, because life quality has always been a priority to him). I truly dont know to what extent it can be helpful for your dad, I just know, that Latvian virotherapy center is also working with patients from Australia, so maybe you can consider this option with your doctor!
Anyhow, I wish you and your dad the very best for fast recovery!
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- October 12, 2011 at 12:00 pm
Hi Nahmi,
I am so sorry about all the crazy stuff you, your dad and family are going through. I truthfully hope, that his oncologist will advise something, that will be effective!
My brother was suffering from melanoma stage 3 (diganosed in 2010) and after several surgeries he had to undergo chemotherapy. Unfortunately, he did not respond to it at all, so his onc adviced to try out virotherapy. Well, I was very cautious about this, but we decided to give it a try. It turned out to be effective on him, and, most importantly, he was not experiencing severe side-effects (it was very important for him, because life quality has always been a priority to him). I truly dont know to what extent it can be helpful for your dad, I just know, that Latvian virotherapy center is also working with patients from Australia, so maybe you can consider this option with your doctor!
Anyhow, I wish you and your dad the very best for fast recovery!
-
- October 12, 2011 at 12:00 pm
Hi Nahmi,
I am so sorry about all the crazy stuff you, your dad and family are going through. I truthfully hope, that his oncologist will advise something, that will be effective!
My brother was suffering from melanoma stage 3 (diganosed in 2010) and after several surgeries he had to undergo chemotherapy. Unfortunately, he did not respond to it at all, so his onc adviced to try out virotherapy. Well, I was very cautious about this, but we decided to give it a try. It turned out to be effective on him, and, most importantly, he was not experiencing severe side-effects (it was very important for him, because life quality has always been a priority to him). I truly dont know to what extent it can be helpful for your dad, I just know, that Latvian virotherapy center is also working with patients from Australia, so maybe you can consider this option with your doctor!
Anyhow, I wish you and your dad the very best for fast recovery!
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