› Forums › General Melanoma Community › Starting B RAF what should be our back up plan?
- This topic has 14 replies, 4 voices, and was last updated 14 years, 3 months ago by
jag.
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- August 14, 2011 at 10:47 pm
Hello Im new at this……Ive been following posts on this forum and have found it to be a wealth of information and support. My dad was diagnosed last Dec stage 3 and now has 4 x liver and 1 x spleen mets. He has just recovered from a craniotomy to remove a single met and is recovering really well. The oncologist wants us to start B RAF in 3 weeks. We feel really fortunate that he tested positive for BRAF but what back up plan should we have? Any suggestions? He is in good health otherwise and has not symptoms at the moment. Thanks.
Nahmi from Melbourne
Hello Im new at this……Ive been following posts on this forum and have found it to be a wealth of information and support. My dad was diagnosed last Dec stage 3 and now has 4 x liver and 1 x spleen mets. He has just recovered from a craniotomy to remove a single met and is recovering really well. The oncologist wants us to start B RAF in 3 weeks. We feel really fortunate that he tested positive for BRAF but what back up plan should we have? Any suggestions? He is in good health otherwise and has not symptoms at the moment. Thanks.
Nahmi from Melbourne
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- August 15, 2011 at 5:10 am
I do not know what Austrilla has to offer right now, but I do know that the trial I am on E7080 is supposed to include Europe and Austrailla in it. It is a good drug that keeps most people stalble and some cured. That is where I would begin.
Good luck
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- August 15, 2011 at 5:10 am
I do not know what Austrilla has to offer right now, but I do know that the trial I am on E7080 is supposed to include Europe and Austrailla in it. It is a good drug that keeps most people stalble and some cured. That is where I would begin.
Good luck
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- August 15, 2011 at 6:35 am
Nahmi, welcome to our forum. I am also from Melbourne. I feel that these are some of
most promising options at the moment:
Yervoy (ipilimumab)
BRAF and MEK inhibitors (such as E7080)
Although these should be available locally, be aware that not all oncologists are up to
date regarding these new (and newer) drugs.Interleukin (IL-2) is also a valuable drug, but I am not sure if it is available here
outside of clinical trials.Adoptive cell therapy (also called TIL treatment) is probably the best treatment
approach that we have, but I don't think it is available in many place outside the US.Here is a link that details all the trials for metastatic melanoma in Australia:
http://www.clinicaltrials.gov/ct2/results?term=metastatic+melanoma&recr=&rslt=&type=&cond=&intr=&outc=&lead=&spons=&id=&state1=&cntry1=PA%3AAU&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=Hope this helps.
Frank from Australia
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- August 15, 2011 at 8:27 am
Hi Frank thanks for that information I have read your posts and can see that you have learnt alot about this disease sadly. I'm sorry you have lost a loved one to melanoma. Can you tell me Frank what the difference is between Braf and E7080? Is it the same drugs? My dad is 64yrs old and had a primary on his trunk 6.4mm nodular. after 6 months of surgery local reoccurence and also a brain met. Then 6 weeks later liver and spleen mets. Has anyone else had a similar experience and how have they faired? It just seems so aggressive I am so worried…he want to see just grandchildren graduate in 3yrs. What a stressful rollcoaster this is.
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- August 15, 2011 at 12:30 pm
Thanks for your kind words. "Braf" and E7080 are different drugs. However, they are
similar in that they target kinase mutations in melanoma.A common example of a Braf inhibitor is PLX4032 (now called Vemurafenib). It
specifically inhibits mutations in the BRAF gene that is common in melanoma.E7080 is a multi-kinase inhibitor. It is an inhibitor of both VEGFR2 and VEGFR3 kinase,
according to Wikipedia.There are people here who are struggling with mets in similar locations to your father.
Unfortunately, mets in the liver and brain are not good. Melanoma can be very
unpredictable in what it does and some people can survive for a long time. However, it
is wise to be aware of the fact that it is possible for patients to become seriously ill
quicker than expected. It depends on a number of things such as genetics, how the
patient responds to treatment and on the tumour burden.As you have mentioned, dealing with melanoma is certainly stressful so don't hesitate to
post your concerns here.Best wishes
Frank from Australia
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- August 15, 2011 at 12:30 pm
Thanks for your kind words. "Braf" and E7080 are different drugs. However, they are
similar in that they target kinase mutations in melanoma.A common example of a Braf inhibitor is PLX4032 (now called Vemurafenib). It
specifically inhibits mutations in the BRAF gene that is common in melanoma.E7080 is a multi-kinase inhibitor. It is an inhibitor of both VEGFR2 and VEGFR3 kinase,
according to Wikipedia.There are people here who are struggling with mets in similar locations to your father.
Unfortunately, mets in the liver and brain are not good. Melanoma can be very
unpredictable in what it does and some people can survive for a long time. However, it
is wise to be aware of the fact that it is possible for patients to become seriously ill
quicker than expected. It depends on a number of things such as genetics, how the
patient responds to treatment and on the tumour burden.As you have mentioned, dealing with melanoma is certainly stressful so don't hesitate to
post your concerns here.Best wishes
Frank from Australia
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- August 15, 2011 at 8:27 am
Hi Frank thanks for that information I have read your posts and can see that you have learnt alot about this disease sadly. I'm sorry you have lost a loved one to melanoma. Can you tell me Frank what the difference is between Braf and E7080? Is it the same drugs? My dad is 64yrs old and had a primary on his trunk 6.4mm nodular. after 6 months of surgery local reoccurence and also a brain met. Then 6 weeks later liver and spleen mets. Has anyone else had a similar experience and how have they faired? It just seems so aggressive I am so worried…he want to see just grandchildren graduate in 3yrs. What a stressful rollcoaster this is.
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- August 15, 2011 at 6:35 am
Nahmi, welcome to our forum. I am also from Melbourne. I feel that these are some of
most promising options at the moment:
Yervoy (ipilimumab)
BRAF and MEK inhibitors (such as E7080)
Although these should be available locally, be aware that not all oncologists are up to
date regarding these new (and newer) drugs.Interleukin (IL-2) is also a valuable drug, but I am not sure if it is available here
outside of clinical trials.Adoptive cell therapy (also called TIL treatment) is probably the best treatment
approach that we have, but I don't think it is available in many place outside the US.Here is a link that details all the trials for metastatic melanoma in Australia:
http://www.clinicaltrials.gov/ct2/results?term=metastatic+melanoma&recr=&rslt=&type=&cond=&intr=&outc=&lead=&spons=&id=&state1=&cntry1=PA%3AAU&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=Hope this helps.
Frank from Australia
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