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August 9, 2013 at 5:02 pm #21510
June 2012 I had primary removed from scalp along with a radical neck dissection. 4 positive lymph nodes so I am staged IIIc. I did 6 months of interferon. I have been NED since surgery. My last scan was 60 days ago, 30 days til next scheduled scan. I recently noticed a small bump on my side between my armpit and waist the size of a pea.I have a Derm appt this tuesday to investigate.
If it turns out to be a skin met..i know i am high risk for recurrance. Will that make me stage IV? If successfully removed and no further evidence of disease would I still be facing consideration of the interleukin , trials etc type of therapies? Or, is it cut it out and get on with life?
Chuck bAugust 9, 2013 at 5:05 pm #62112
They may call it regional disease and not bump you up to stage IV, but wait and see what they find out. You should look at the newer therapies and I would ask what your BRAF status is. But see what the biopsy shows first. Sometimes you just get local recurs and no further problems. Let us know how it goes.August 9, 2013 at 5:22 pm #62113 Catherine,
Thanks for your prompt response. Are skin mets caught early of real concern? Or are they a merely a symptom of the more serious systemic threat?
I am BRAF wild type.
Chuck bAugust 9, 2013 at 6:13 pm #62114
For some it is just considered regional disease and they can be removed and not be an issue. But when they are distant from the original site they can be more troublesome. But don’t jump the gun yet on this, wait to see what they find.August 21, 2013 at 7:29 pm #62115 I had a biopsy on my “skin bump” last Tuesday. I just received a call from my dermatologist informing me the bump was in fact melanoma. Of course I have called my oncologist office to inform him but have not spoken with him. My last CT scan June 5 was clean and I have no other symptoms. Any guidance on what further treatment I should expect, or investigate would be appreciated.
Chuck BAugust 21, 2013 at 7:54 pm #62116
I would discuss clinical trials with your oncologist and I would make sure he/she was very experienced with melanoma. There aren’t a lot out there but we can guide you on that. They may consider this stage IV and that would make you eligible for a lot of therapies to consider. You are BRAf wild type or negative? NRAS positive? You have not done Yervoy if I am correct, so you may be eligible for some of the PD1 trials that are very promising and very available. I would be happy to discuss on our helpline too: 866-466-6663. In addition, they may remove this bump and you would be NED again but you are at high risk for recurrence so a systemic agent should be considered. For the PD1 trials you need a tumor that is reachable for the trial. So you need an expert opinion at this stage. what part of the country do you reside?
Here is a trial now recruiting that may fit your needsAugust 21, 2013 at 8:57 pm #62117
I have not done yervoy. I am currently enrolled in the E1609 trial where I was randomized for interferon. I did 6 months ending in March this year. So i have not had yervoy.
I live in Buffalo NY and have been treated by Dr Depak Sahsrebudhe at Wilmot Cancer Cernter/University of Rochester Medical Center in Rochester NY. The E1609 was not offered in buffalo. While they do treat melanoma patients in some volume there I certainly dont view them as specialists. That being said I have always intended to sek out treatment at a center for excllence should ny condition become complicated. Looks like I am there. Recommendations?
I am BRAF wild type, not sure about the NRAS you asked about. I did see Dr John Kirkwood in Pittsburgh for a post surgery consult before the clinical trial. Should I remove myself from the trial i am currently to open myself up to other possiblities?
I appreciate your timely and valuable input,
chuck bAugust 21, 2013 at 9:51 pm #62118
Yes, I would leave the trial, they may have already let you go since you progressed. I would head to Sloan Kettering in NYC or UPENN or Hopkins in Baltimore. You are correct about where you are now. My sister is from Rochester and she goes to Boston for follow up for breast cancer. Boston is another excellent place, Mass General, Keith Flaherty. You should go where they are doing the research. And have them test your tumor for the NRAs or ask if it was already tested when they did the BRAf testing. We have scholarships to assist with travel and lodging. Again, if you’d like to discuss privately, call me on the helpline. You will get me not any outside agency!
Toll free: 866-463-6663September 10, 2013 at 4:37 pm #62119
An update on my current status. My recent MRI and PET/CT revealed no other signs of disease except for the known skin met. Yea!
I had a consult with Dr Flaherty this past Thursday. I have asked that he be my oncologist. He indicates that I do not have enough disease to qualify for the PD1/ipi clinical trial we spoke about. That being the case he recommends surgical removal of any remaining disease. He actually advocates that any time disease can be removed easily..”get it out”. I am fairly sure he will recommend a round of ippi post surgery.
My daughter , a pediatric chief resident, accompanied me for the consult. Dr Flahery was most patient and thorough with us. We left with a very clear understanding of my options.
Thank you again for your Help in every way.
Chuck BasilSeptember 10, 2013 at 9:44 pm #62120
Great news and I’m happy to hear of your soon to be NED status. Will you have the surgery there? He’s a great doc to have on board. keep in touch!
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