Limb Amputation- acral melanoma

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8/2/2010 9:30am
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Replies: 5

Is there anyone here who has either considered or who has had their limb, specifically leg in our case, amputated?

In our case, Jerry's started on his toe, had toe amputated, local recurrence, had Isolated Limb perfusion, then intransits after, then tumor in thigh, started chemo, seem to have had another tumor pop up this weekend. In addition to the melanoma problems, Jerry's foot has not healed since the limb perfusion 10 1/2 months ago, and he is dealing with osteomyelitis in the foot, very limited feeling and movement in the foot, etc. We just don't know if he will ever have normal feeling and movement ever again. So far the melanoma has been isolated to the limb, and it won't leave the limb alone.

Trying to decide what to do.

Thank you for any thoughts,

Susan

Hi Susan,

I don't have acral melanoma, but mine did start in my leg, and I had an ILP in 2007. I recurred a year later near the same spot. BTW, it took me a full year to recover from the ILP, and although I am fully mobile, I have permanent nerve damage to my leg (numbness), and I wear a compression stocking every day to control swelling.

I also did consider amputation, and consulted several mel specialists about it. Dr Agarwala explained it best. He said that although melanoma occurs locally at first, it's really a systemic disease once a recurrence has happened. It's just that it's too microscopic to detect. At the time, my tumors were all in my lower leg, but Dr A said that if I were to amputate, even up to the hip, he could guarantee that I would have a recurrence in the stump within 6 months. And he was right. Two months later, I had developed a mel met in my uterus, two mos after that, my breast, three mos later, my lung, and four mos later, my brain. I don't mean to scare you, as Jerry may be totally different, and may not develop a systemic met for years. But my point is that an amputation will only destroy his quality of life, and all for nothing. The mel is in his system, but is too small to be detected, so you have to work at beating it back and making sure it doesn't advance.

I'd stick with whatever systemic treatment works. What chemo is he on now? Has he tried ipilimimab? Has he had a genetic profile done to see if he has the BRAF mutation? There are plenty of options yet to try, not to mention new ones that will surface along the way. Best of luck to you and Jerry.

Hugs

Sharyn

Stage IV

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial
Mets to brain, lung and sub-qs. Craniotomy.

Hi Sharyn. Thank you for your reply. I know I have read that it will show up on the stump. Let me tell you this melanoma stuff is the creepiest. I know you don't mean to scare me. I wish it weren't scary, but it completely is. I feel like we are always trying to get away from a murderer, like Friday the 13th or something. I am a Christian, but I just can' t stop the worrying and the fear.

We are Braf and Ckit negative, wild type. He has been on Everolimus, Paclitaxel and Carboplatin. He had been responding well, but the last treatment was delayed due to low blood count, and it seems melanoma took the chance to strike again.

We haven't tried Ipilimumab or IL2 yet so it is nice to know we have options yet.

 

Thank you Sharyn

Sending hugs back your way,

Susan

 

Susan:

I am sorry to hear about this struggle.  I can't offer any information on amputation, but am curious if Jerry was tested for c-kit mutation.  This mutation is fairly common in acral melanoma and opens the door to treatments by any of a handful of drugs approved to block c-kit.

 

Tim

Hi Tim. Thank you for your kind words. Jerry is ckit negative. We were soooo crushed when we received that news. We had such high hopes that we were as Jerryfromfauq had told us about gleevac.

It doesn't make sense to me how they can find treatments for mutations but they don't seem to have treatments when you don't have mutations or maybe it is just finding the mutation we do have. It is hard to understand. Or maybe because we don't have mutations, Jerry might respond to IL2 or Ipilimumab. I wish there was a way to "who" has responded to "what" treatment- not just who the person is but exact detail on the melanoma and what treatment it responded to. Like who has responded to IL2 and what are the specifics on their melanoma, their blood type, etc. The bad with knowing it all is that it could limit treatment too and hope too.

Sorry to ramble and thanks again,

Susan

 

The c-kit thing was odd, but it speaks to the future of cancer treatment.  Glevec was tested in leukemia and the mechanism for action was to block c-kit.  Someone in melanoma realized that a lot of acral and mucosal melanomas have that mutation too, so it might work there.  And it does. 

I think increasingly, drugs will be developed with a  specific mechanism of action, and will be used across many tumor types so long as they involve that mechanism.

There is some early evidence of a biomarker for IL-2 response.  A small paper was published a year ago that people with VEGF levels above 130 pg/ml did not respond to IL-2.  Might be worth having his VEGF levels tested (pronouced vef - F) before deciding on IL-2.  Howard Kaufman, from Rush in Chicago, did that study.  He does a lot of IL-2.

Tim