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February 13, 2013 at 1:21 am #21020
My significant other was diagnosed January 2011 with a spot on his left flank. After a wide local excision and removal of 17 lymph nodes (left side, 1 being positive) he was to begin a clinical trial. However, an MRI indicated 3 brain mets. He had SRS and began a Yervoy/Dacarbazine infusion. Between the 2nd and 3rd infusion, a follow-up MRI showed decay in the 3 lesions. He completed the 4 initial infusions with the only issue being diarhhea which resulted in an abscess. The next MRI showed the 3 lesions progressing and 3 new lesions, so he had WBR, Monday through Friday for 3 weeks. The abscess resulted in a fistula and another in/out surgery with the biopsy positive for melanoma. He then completed 5 radiation treatments. Since he had progression with the Yervoy/Dacarbazine cocktail, his oncologist recommended Temodar. PET/CT scans were still showing no other spots from the neck down. The MRI after the first cycle of Temodar showed no additional lesions; however, the 6 were progressing. He continued with the Temodar for a total of 4 cycles. The MRI in late November showed 1 additional lesion. We were referred to Dr. Lunsford at UPMC for Gamma Knife which took place December 6. The next PET/CT scan showed spots on the left and right side and also 1 in the abdomen, but the liver and lungs were clear. The follow-up MRI on January 21 showed 1 new lesion and we were sent back to Dr. Lunsford at UPMC. The second Gamma Knife procedure was February 6 with the MRI that day showing 8 new lesions. We met with a melanoma specialist at UPMC and he suggested a clinical trial with a vaccine plus or minus Interferron, depending on which arm you were chosen for; however, he wasn’t able to start this trial until off the steriods prescribed after the Gamma Knife. Now with the latest prognosis and not being on any type of therapy, it’s unlikely that he will have a stable MRI to begin the clinical study at the end of the month or the beginning of March. Both the local oncologist and the specialist at UPMC are suggesting Carboplatin/Carbotaxil with Abraxane plus or minus Avastin. Can anyone offer input?
I’m sorry I’ve rambled on, but I’m not sure where to turn for answers. This disease is horrible and for those with active brain mets, there are few options.February 14, 2013 at 6:02 pm #59145PatWParticipant
If your SO was diagnosed as Stage IV with brain mets 2 years ago and he is still alive and fighting, my hat is off to both of you. At least some of the treatments you have tried must have worked to at least slow down the progression of the disease. Good for you!
My question for you is, does the cocktail the doctors are now recommending cross the blood-brain barrier and kill brain mets? I know Temodar does cross the blood-brain barrier, but do these other drugs? Also, since you do not mention Zelboraf, I assume that he does not have the BRAF mutation?February 14, 2013 at 7:09 pm #59146
My mistake . . . he was diagnosed in January 2012, not 2011. I feel blessed to have had a year+ with him. He actually is defying the odds. With everything going on in his brain, he is amazingly well. He works every day. He starts off running when his feet hit the ground and continues to do so until he goes to bed at night. He does not have the BRAF mutation. I’m not sure if the cocktail recommended crosses the blood brain barrier or not. I am waiting to hear back from the oncologist. Thanks for your response. I have learned so much from this forum in the past year. This is a horrible disease; it’s a comfort to have the support and guidance from others experiencing the same.February 14, 2013 at 11:10 pm #59147Catherine PooleKeymaster The two of you have been through so much. I am assuming your significant other is BRAF negative? The drugs you mention, interferon, taxol, temodar, etc. don’t usually work that well for melanoma. Has anyone suggested a PD1 trial? Is he NRAS negative or positive?February 15, 2013 at 12:31 am #59148 Yes,he is BRAF negative. We can’t get the local oncologist to test for NRAS because its not considered “standard of care” and the melanoma specialist at UPMC was going to test for NRAS; however, since the clinical trial is off the table, I don’t think he will do so either. I would love a PD-1 trial but with active brain mets, that doesn’t seem to be a possibility unless you know of something I have been unable to find.February 16, 2013 at 3:48 am #59149zephyr66Participant marlee – first off, i’m very sorry for your SO and your situation. but, he sounds so strong! wonderful. my partner just started the braf/mek trial under dr. ribas at ucla. we were looking at both trials initially and to my understanding, brain mets excluded one from the braf/mek ( i remember this because she had a mass on brain mri but it was outside the brain area and in the sinus area) but DID NOT exclude one from the PD1 trial. i would double check and if there’s any chance you live on the west coast, contact dr. ribas.February 16, 2013 at 4:02 am #59150 Thanks for your response. I have already contacted Dr. Ribas, Dr. Weber, and Dr. Woschak to no avail. None of them have anything to offer with active brain mets. As a matter of fact, Dr. Woschak spent an hour plus in a phone conversation with our local oncologist. If the brain would be stable for a couple/few months, a PD-1 trial would be an option. We just can’t seem to get a stable MRI.February 16, 2013 at 5:50 am #59151dkmcParticipant Wow-talk about hitting the floor running! It was hard enough to begin at stage 3, but it gave us a little time to get our head rapped around the incredible news we received. You all sound strong & determined. I hope his brain mets stabilize so he can get into the anti PD-1 trial. Know that we all are hoping for the best for you both. Take Care, Karen
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