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October 24, 2013 at 1:03 am #21639Ksb038Participant
My dad (61) was diagnosed with Stage IV Metastatic Melanoma in May. He has gone through chemo and radiation in SC, with recurring radiation treatments recently. He has felt much less pain lately in the recent areas where he has been treated with radiation so that’s been good news.
Anyway, he started taking Mekinist 1.5 weeks ago and has been reacting fine to it expect for some splotchiness and red spots on his arms. My family and I have been doing research and have noticed that Torisel and Mekinist work well together. We want to be able to help provide my dad with the best information for treatments moving forward and take that responsibility seriously of course so I just wanted to be sure it was safe to do that and see if anyone has had any reactions from it before he starts (or doesn’t). Any information is much appreciated. We’re also looking at various clinical trials to begin in the next few months.
I sincerely appreciate any information and your time. You all are in my thoughts and I will be praying for your recovery and treatments.
KellyOctober 24, 2013 at 12:09 pm #62819Catherine PooleKeymaster
Sounds like you are taking good care of your dad! I know that torisel is a renal cell cancer drug but don’t know how well it works in melanoma. Have you seen any studies on this combination? I would like to know more. I was wondering why your father went on Mekinist alone? Is he BRAF positive? Where is he getting his treatment? If you can tell us more maybe we can find more answers for you.November 6, 2013 at 6:32 pm #62820caroline88Participant Hi Catherine,
I’m also responding on behalf of my Dad and Kelly. Thanks for your quick input. We haven’t seen any studies on the Meknist/Torisel combo (just Mekinist/Taniflar) but in just the past few weeks he seems to be feeling better…less pain, better breathing, etc. The only negative – he is getting a bad reaction of blister type sores on his face and now arm that eventually bleed. Have you heard of this before? If so – is this common in this condition and is there an ointment you’d recommend?
He was diagnosed with a N-Ras Gene mutation metastasized from spindle cell melanoma and has tumors in his lungs, kidneys and lower back area. He is BRAF negative. We are also looking at clinical trials that will be effective once he is finished with his Mekinist/Torisel treatment.He is getting the treatment in Charleston, SC. We are looking at other states for clinical trials on the east coast. If you have any recommendations here it would be greatly appreciated as well.
Thank you in advance for your amazing help!November 7, 2013 at 2:25 pm #62821Catherine PooleKeymaster
I would ask the doctor about the blisters. Not sure what that would be caused by or which drug may be causing that. I would get in touch with Dr. Infante’s group at Sarah Cannon in Nashville, TN, they do nothing but research trials and have a lot for melanoma there. Look at our list under Web Resources for other centers. There are some NRAS trials, one by Novartis I know of. Also the PDL is popping up at different locations and still a few PD1 trials. All promising. I would definitely have a “Plan B” lined up!November 7, 2013 at 2:34 pm #62822caroline88Participant Thanks Catherine!
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