› Forums › Cutaneous Melanoma Community › am I understanding all of this correctly?
- This topic has 8 replies, 3 voices, and was last updated 6 years ago by
JW.
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- April 22, 2018 at 5:55 pm
I'm trying to think through the information I've been reading in hopes of asking intelligent questions at my husband's upcoming appointments with melanoma specialists.
Could any of you confirm or refute my understanding of a few things (or maybe just add more to think about)?
True or False: Anorectal mucosal melanoma is highly likely to recur and/or spread even if he has additional surgery to get wider margins. (By the way, we're still unclear as to whether it's realistically possible to get wider margins anyway — surgical consult in 2 weeks.)
True or False: Local radiation could be sufficient to knock out residual cancer cells if additional surgery is not done.
True or False: Immunotherapy is the best possibility for preventing recurrence regardless of what else has been done or not done.
True of False: A relatively low percentage of individuals respond to immunotherapy (but you don't know until you try).
Thanks for any input from anyone!
Background info: My husband was diagnosed with anorectal melanoma 6 weeks ago when he had a "polyp" removed from his anus that turned out to be 3 melanoma tumors. The largest was about 2 cm diameter and 11 mm deep. 4 weeks post-surgery he had a PET/CT scan which shows no distant metastis but a small amount of activity in the area of surgery — inconclusive as to whether this is post-surgery inflammation or residual cancer. One small lymph node showed up that was characterized as reactive.
He has appointments scheduled with melanoma specialists at UT Southwestern and MD Anderson within the next 2 weeks.
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- April 22, 2018 at 6:48 pm
Hey JW,
The "primer" I gave you a link to in an earlier post pretty much answers your questions…but there is a lot to take in so I will try to give you an answer here.
First of all, if I had to guess, and that is all I am doing since I am not your husband's doc nor privy to all of his data, I would presume that he has what is termed "mucosal melanoma" and he is Stage IV given the location and the findings you describe.
Any type of melanoma can recur without additional treatment…be it wider margins or even with systemic treatment. However, all types have recommended standard margins that should be attained surgically, often referred to as a "wide local excision", where possible anatomically.
In melanoma, radiation alone is NOT a sufficient treatment. However, when combined with systemic immunotherapy (and some data shows this is true for targeted therapy with BRAF inhibitors as well)…the combo of radiation WITH immunotherapy provides benefits that are greater than either treatment alone.
We have looked at many ways to predict repsonse to immunotherapy over the years…but nothing is conclusive at this time. Ipilimumab (Yervoy) yields a 15% response rate. The two anti-PD-1 products (Nivolumab/Opdivo and Pembrolizumab/Keytruda) provide about a 40% response rate. When nivo and ipi are given in combination the response rate can be 50% plus. Responses to immunotherapy have proven to be the most durable (lasting) than any prior treatments we have had.
Targeted therapy…a BRAF inhibitor combined with a MEK inhibitor…can provide a response rate greater than 80% for patients who have BRAF positive tumors. However, the duration of the response is around 9 months or so for most (though there are those who have been maintained on these drugs for years).
Hope this helps answer some of your questions. Ask more as you need. Yours, Celeste
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- April 24, 2018 at 2:22 am
I do have another question, which seems dumb, but just to make sure . . . the term "response rate" means how many people are helped by a treatment, right? So a 40% response rate means that the drug helps 40% of the people who take it? (And therefore that it doesn't help the other 60%?)
Oh — and what makes you think my husband is stage 4? I thought that was only if it has spread to distant sites.
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- April 25, 2018 at 3:43 am
You are correct. A 40% response rate is great when compared to having nothing. But…it sucks great big green hair wizard balls when you think of the 60% of folks for whom it does not.
First of all, I do not have your husband's records…nor am I privy to all of his path reports…however, I feel like what you are describing is almost certainly mucosal melanoma…with a node that is lighting up he is almost certainly Stage III and is at high risk for being Stage IV. However, as I said initially…it is only a supposition on my part…but something I wanted to try to help you prepare for in talking with your husband's doctors. Mucosal melanoma plays by different rules from cutaneous melanoma. Only 1.3% of all cases of melanoma are mucosal and 1/3 of those patients present with advanced disease.
Again, great big green hairy wizard balls. I feel like I must answer questions with the best (and worst) of what I know. While you KNOW that I know nothing beyond what you have shared of your husband's particulars. These are just points that you can arm yourself with to help your husband and know better what to ask and expect from the oncologists.
Additionally, when things are their most dismal…there is always hope. There are many treatments and combinations of treatments that have kept me and many other melanoma patients alive and yelling beyond our expected expiration date. Hang in there. Keep asking questions. No question is ever dumb. c
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- April 22, 2018 at 7:34 pm
One thing I might add to Celeste's post – testing for the C-Kit mutation. Some mucosal melanomas have the C-Kit mutation and may possibly respond to Gleevec. Just another line of research you could do.
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Tagged: cutaneous melanoma, mucosal melanoma
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