› Forums › General Melanoma Community › Possibly a Yervoy Non-Responder
- This topic has 10 replies, 5 voices, and was last updated 14 years, 1 month ago by
MaryBeth and Jeff.
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- July 22, 2011 at 3:00 am
My husband's oncologist feels he is a Yervoy non-responder. He received his final Yervoy treatment last week. (He tolerated the treatments very very well). Since his third treatment he has developed many many nodules (sub q's) – on his arms, under his arms, neck, legs and chest. Some are small – pea size, some marble size. A few are even blue…appearing as if it is in his veins….demonstrating what I believe is the vascular nature of Mel. Onc does not want to wait for his 12 week post IPI scan, so he will begin Thalidomide and Temodar next week.
My husband's oncologist feels he is a Yervoy non-responder. He received his final Yervoy treatment last week. (He tolerated the treatments very very well). Since his third treatment he has developed many many nodules (sub q's) – on his arms, under his arms, neck, legs and chest. Some are small – pea size, some marble size. A few are even blue…appearing as if it is in his veins….demonstrating what I believe is the vascular nature of Mel. Onc does not want to wait for his 12 week post IPI scan, so he will begin Thalidomide and Temodar next week. http://clinicaltrials.gov/ct2/show/NCT00072163 Onc. feels IL-2 is too dangerous for him because of the brain mets – 19 total – all but one have been treated with Gamma Knife Surgery. – 2 separate surgeries. (the remaining one is to be treated next week). Subsequent MRIs did show the brain lesions have either reduced in size or no change in size. Onc feels treatment with IL-2 could cause brain Hemorrhage. It "seems" like everything went downhill after his 3rd Yervoy treatment. He now has unbearable pain in his right gluteal area which no pain med can provide relief. He did have an MRI today and if possible we agreed on radiation of the area. He has recently lost strength in his fingers finding it difficult to button, zippen and type. (This most likely is due to the brain radiation – 10 day regiment of low dose whole brain radiation after 1st Gamma Knife Surgery). We will discuss this with both his radiologist and medical onc. next week. I am just so distraugt at how so much has changed since his diagnosis on March 8, 2011. How over 4 months ago this man both felt and appeared healthy. Praying that he responds to the T & T . Praying that the nodules are a positive immune reponse as a result of the Yervoy. Praying that he can get some relief from the pain. Praying…
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- July 22, 2011 at 3:28 am
I understand how you are feeling and wish the best for you and your husband. I won't go into my husbands history except to say that he was a non-responder to IPI and we also battled brain mets. After the 3rd infusion of IPI, we noticed many new tumors and the "old" ones grew larger.
We have been fighting for two years now and it's hard sometimes. We try to laugh as much as possible, I am so lucky my husband has a weird and wicked sense of humor. We are off to MD Anderson in Houston TX next week to seek other options. He is already practicing his "texas twang".
There are many people on here that can offer wonderful support and prayer. Keep the faith!
Jan in OC
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- July 22, 2011 at 3:28 am
I understand how you are feeling and wish the best for you and your husband. I won't go into my husbands history except to say that he was a non-responder to IPI and we also battled brain mets. After the 3rd infusion of IPI, we noticed many new tumors and the "old" ones grew larger.
We have been fighting for two years now and it's hard sometimes. We try to laugh as much as possible, I am so lucky my husband has a weird and wicked sense of humor. We are off to MD Anderson in Houston TX next week to seek other options. He is already practicing his "texas twang".
There are many people on here that can offer wonderful support and prayer. Keep the faith!
Jan in OC
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- July 22, 2011 at 5:01 am
Sorry to read that your husband hasn't responded to Yervoy, and I know of other cases
where this has also happened. Unfortunately, metastatic melanoma is unpredictable in what
it does. It can appear wherever the cells decide to form tumours, but how and why this
happens is not fully understood.I feel that you are receiving good advice, regarding the thalidomide and temodar
treatment. It certainly sounds like it should work well in theory. Local radiation is a
reasonable option for shrinking any tumours and to help to relieve pain.My thoughts and prayers are with you.
Frank from Australia
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- July 22, 2011 at 5:01 am
Sorry to read that your husband hasn't responded to Yervoy, and I know of other cases
where this has also happened. Unfortunately, metastatic melanoma is unpredictable in what
it does. It can appear wherever the cells decide to form tumours, but how and why this
happens is not fully understood.I feel that you are receiving good advice, regarding the thalidomide and temodar
treatment. It certainly sounds like it should work well in theory. Local radiation is a
reasonable option for shrinking any tumours and to help to relieve pain.My thoughts and prayers are with you.
Frank from Australia
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- July 22, 2011 at 5:32 pm
Has he been tested for the V600e BRAF mutation? 50% of melanoma patients have this mutaiton. 80% of those with the mutation seem to respond to the BRAF inhibitor. There is conflicting data on BRAF inhibitors shrinking brain tumors as well as causing brain hemmoraging. I had SRS treated brain mets and started the BRAF inhibitor PLX 4032/RG 7204/Vemu in January. Have had no brain met reoccurance and 80% reduction in tumors. Durability only has a mean average of seven months but those are seven months of a high quality of life. I am about to enter my 8th cycle brain met free. That said, we must always remember that melanoma has a unique impact on each of us.
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- July 22, 2011 at 5:32 pm
Has he been tested for the V600e BRAF mutation? 50% of melanoma patients have this mutaiton. 80% of those with the mutation seem to respond to the BRAF inhibitor. There is conflicting data on BRAF inhibitors shrinking brain tumors as well as causing brain hemmoraging. I had SRS treated brain mets and started the BRAF inhibitor PLX 4032/RG 7204/Vemu in January. Have had no brain met reoccurance and 80% reduction in tumors. Durability only has a mean average of seven months but those are seven months of a high quality of life. I am about to enter my 8th cycle brain met free. That said, we must always remember that melanoma has a unique impact on each of us.
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- July 22, 2011 at 6:00 pm
Yes his original sample was sent off last week for V600e BRAF mutation testing. Congrats to you for not having brain met reoccurance and the 80% tumor reduction. Thats fanatstic. I do understand the low durability of PLX 4032.
But like you said…thats 7 months of a high quality of life.Prayers and strength to you fellow warrior.
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- July 22, 2011 at 6:00 pm
Yes his original sample was sent off last week for V600e BRAF mutation testing. Congrats to you for not having brain met reoccurance and the 80% tumor reduction. Thats fanatstic. I do understand the low durability of PLX 4032.
But like you said…thats 7 months of a high quality of life.Prayers and strength to you fellow warrior.
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