Subungual Melanoma

This topic has 7 replies, 5 voices, and was last updated 5 years, 10 months ago by kellygirlsr.

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- June 8, 2018 at 12:50 am
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kellygirlsr
Participant
hi everyone,

I have subungual melanoma of a big toe. Surgery was performed and path report came back as 1.01 mm in depth. There is a positive margin at the periosteum. Also, 2 lymph nodes were biopsy and came back negative. Because I am in early stages of miminal invasive cancer, I've been searching for medical treatment for the positve margin to avoid amuptation of the toe. All adjuvant therapies seem to treat only adbance cancer. I'm a stage IB or II.

Any thoughts on possible immuno therapy of early stage patients like myself?

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- - June 8, 2018 at 3:23 am
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  Janner
  Participant
  Immunotherapy is not FDA approved for stage 1 or stage 2. Even if a doc were to prescribe it off-label, insurance may not pay and these therapies are very expensive. To date, surgery is still the most effective method to remove melanoma and doing a systemic treatment for positive margins is pretty radical. (I understand that amputation is radical as well). Remember, immunotherapy is only effective for 40-50% of individuals (depending upon treatment) so you are risking a lot on hoping you are a responder. Are you being seen at a major melanoma center? My suggestion would be to go to a large center – they may be the most creative in treatment options.
- - June 8, 2018 at 11:48 am
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  Threefitty
  Participant
  Sorry you are "here", but glad you are here.
  
  If you are not familiar with the story surrounding the death of the legendary Bob Marley, google it today.
  
  Wish I had something more positive to say.
  
  Best of luck.
  
  Dave S.
  - June 8, 2018 at 12:26 pm
    
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    Bubbles
    Participant
    
    Or read this: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/02/melanomaa-disease-without-discrimination.html
    
    There are many well informed and caring peeps on this board. Ask more questions as you need. Celeste
  - June 13, 2018 at 1:32 am
    
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    kellygirlsr
    Participant
    
    thank you for your message Celeste
- - June 11, 2018 at 1:35 pm
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  JuTMSY4
  Participant
  I had a subungual melanoma on my left big toe as well. There was no possible margin control without (partial) amputation. The short answer is, you can't or at least not covered by any insurance, get any form of immunotherapy. Not sure a doctor would prescribe it either as standard of care for stages I and II are surgical mostly.
  
  My follow up question is…why? Surgery at early stage melanoma is highly effective or at least a great tool in the toolkit that includes later use of immunotherapy (hopefully you won't have to find out!). Immunotherapy has made MASSIVE advances but pales in comparison to surgery at your early stage. I know it sucks to lose a toe (really, half a toe!), but it's far better than the alternatives. Left between a choice of surgery/amputation and immunotherapy, with their relative results, I would take surgery/amputation 10/10 times.
  
  I'm a relatively young person, but I will say that I run, bike and play rec sports w/o issue (and without half my left big toe!). If your concern is activity, you likely won't have a problem. If your concern is looks, that's fair, but it's far better than the alternative.
  - June 13, 2018 at 1:21 am
    
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    kellygirlsr
    Participant
    
    Thanks for sharing your treatment history. Cheers! Kelly
  - June 13, 2018 at 1:30 am
    
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    kellygirlsr
    Participant
    
    My concern with the amputation is not diminished mobility nor aesthetics. I am also a diabetic with reduced circulatory and immune systems. I fear the surgery will put me at greater risk than most patients who have had their toe removed.