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July 12, 2013 at 9:20 pm #61625Shirley ZParticipant
I know what you mean Clint. I spent many sleepless nights when I was debating
about my treatment 7yrs ago. Its horrible!
Whatever decision you make we support you.
One thing cancer does do is make you realize what is really important in life. I
no longer sweat the small stuff..
Shirley ZJuly 13, 2013 at 4:48 pm #61626Catherine PooleKeymaster
Clint, If you are CKit, was your melanoma mucosal? Then gleevac might be a therapy to consider. There are plenty of choices of new therapies out there, in clinical trials too. So much progress, do some research and we can help you. So the PD1 has a higher response rate and works great combined with Yervoy. So do the Yervoy first and if you progress you can do the PD! trial for Yervoy failure. Both are good drugs to consider with little side effects. You can do the Yervoy closer to home outpatient.July 13, 2013 at 5:39 pm #61627 Thanks, Catherine. Good suggestions and I’m feeling more positive today. I meet with Dr. Daud at UCSF on Tuesday morning to go over all this
Then I’m taking a 3 day solo sojourn to the Carson River in the Sierras to contemplate my barely visable navel. Hopefully I can come to some decisions……or at least catch some trout! Ha! This is a brest site. Thanks. ClintJuly 14, 2013 at 1:01 pm #61628LinnyParticipant
This is a trial that Johns Hopkins is participating in for folks with c-Kit mutations. You might want to ask Dr. Daud if any of his patients are participating in it and if he thinks you might be a good candidate for it:Quote:
J1045: The TEAM Trial (Tasigna Efficacy in Advanced Melanoma): A Randomized, Phase III, Open Label, Multi-center, Two-arm Study to Compare the Efficacy of Tasigna ® Versus Dacarbazine (DTIC) in the Treatment of Patients With Metastatic and/or Inoperable Melanoma Harboring a c-Kit Mutation. This is a phase III multicenter study for patients with locally advanced or metastatic mucosal melanoma (arising in the mucous membranes, such as the nostrils, mouth, or rectum), acral melanoma (arising in the palms, soles or under the nails), or solar melanoma (arising in skin with long-term sun damage) that cannot be removed by surgery. The purpose of this study is to compare the efficacy (progression free survival) of nilotinib (Tasigna) versus dacarbazine (DTIC) in patients with c-Kit mutated melanoma. ‘C-Kit mutated’ means that a cancer has been genetically tested and a mutation in the c-Kit gene is present. Patients will be randomly assigned to receive either nilotinib or dacarbazine therapy. Dacarbazine is the only FDA-approved chemotherapy drug for metastatic stage IV melanoma. Nilotinib is an oral medication that blocks some of the molecules needed for tumor growth and is currently used to treat some types of leukemia. Recent phase II trials suggest that drugs like nilotinib may be effective in patients with melanoma harboring a c-Kit mutation. To join this study, a patient must have stage III unresectable or stage IV metastatic disease with one or more radiologically measurable lesions of at least 1 cm diameter. The patient’s tumor must have one of several specific c-Kit mutations. Patients with c-Kit amplifications only and no mutation are excluded. Tumors may not have any NRAS or BRAF mutations. Patients may not have brain involvement and may not have had any prior treatment with tyrosine kinase inhibitors (such as imatinib) or dacarbazine.
It never hurts to ask.July 16, 2013 at 4:26 pm #61629
Sitting in the cafeteria at UCSF. The powers that be want to (are) pull me off the electroporation trial and start me on Yervoy….with the anticipation that it won’t work. They would then stop me after two treatment and get on to the Pd -1. I’m concerned about the 15% chance of severe side effects with thr Yervoy. Also, while open label, I may end up getting chemo instead of the Pd -1. Oh Bother. Time to go fishing. Be well. ClintJuly 28, 2013 at 4:40 am #61630 My PET/CT were clear of new attacks. But Dr. Daud was very concerned about the rapid multiple tumor growth on the leg. So, yesterday I started the Yervoy. In the afternoon met with Dr. Yom snd staff about palitive radiation. Anybody with experience with this? Got accepted to the “Epic Experience” cancer camp in Colorado. So any radiation will have to wait. Thank you Epic!. ClintJuly 28, 2013 at 5:16 pm #61631LinnyParticipant Hi Clint,
Not everyone has a bad reaction to Yervoy. Let’s hope you’re one of those people.
If I understand your post correctly, your doctors want to try Yervoy plus radiation on you? They’re probably basing that on something called an “abscopal effect”. Apparently there’s some sort of synergy between Yervoy and radiation that causes tumors to go away. Here’s one article on that from the New England Journal of Medicine:
http://www.nejm.org/doi/full/10.1056/NEJMc1203984http://www.nejm.org/doi/full/10.1056/NEJMc1203984 ” class=”bbcode_url”>July 29, 2013 at 2:16 am #61632 Thanks, Linny. I think it was to keep my calf out of the fresh produce section (cauliflower). However, any associated success is welcome. Interesting article. Be well. Clint
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