Home Forums Melanoma Diagnosis: Stage IV Muscal Melanoma Help

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  • #22079
    BNP68
    Participant

    Just found out my uncle was diagnosed with muscal melanoma. I’m not as familiar with muscal melanoma as I am with your everyday run of the mill melanoma. Few questions I have if anyone can comment on:

    Is there anywhere and anyone in particular that specializes in or is know as “the place” for muscal melanoma? I’ve heard Dr. Hodi at Farber is pretty experienced with muscal melanoma. My Uncle is currently located in Virginia so probably limited to the east coast.

    For most melanoma current thinking doesn’t put a high value on chemo and radiation (other than in combination with immunotherapy) but is that not so with muscal melanoma?

    I heard that muscal melanoma isn’t as responsive to Ipi as other melanoma (something like only 7%). Does anyone know if this is true. Has muscal melanoma been responsive to anti-PD1?

    Thanks for any advice or information anyone can provide.

    Brian

    #64916
    RJoeyB
    Participant

    Brian,

    I’m assuming you mean “mucosal” melanoma? Not being critical, just pointing it out so if you search for it you’ll be more likely to find some helpful imformation. I know what it is but don’t have any experience with it first- or second-hand. MRF has a brief page in their patient eduction section at:

    http://www.melanoma.org/understand-melanoma/what-is-melanoma/mucosal-melanoma” class=”bbcode_url”>http://www.melanoma.org/understand-melanoma/what-is-melanoma/mucosal-melanoma

    I haven’t seen anything specific about the use of checkpoint inhibitors (ipi or anti-PD-1) with mucosal melanoma, but I’m sure they’re out there. Interesting from the MRF page is the note about the high prevalence of the KIT mutation and low prevalence of the BRAF mutation, which obviously drives treatment decisions. From what I’ve read elsewhere, the prognosis for mucosal can be worse, but it’s not necessarily because of the response rates to treatment options, but because it’s often caught later and progressed by the time of diagnosis because it’s in more “hidden” areas.

    The KIT mutation offers some other treatment options, including imatinib (Gleevec).

    For “traditional” treatments like chemotherapy and radiation, I believe the general thinking is the same, chemotherapies like dacarbazine just aren’t very effective at all. I’d caution that the thinking about radiation in melanoma treatment is changing. Melanoma was long considered “radioresistive”, but newer approaches (and my own experience) have shown that it can play a positive role where appropriate and melanoma does respond to a different dosing schedule than you see with many other cancers. Melanoma responds to fewer doses at much higher “fractions” per dose than is normally given for other tumor types, using techniques like SBRT. So it can play a role like surgery plays its role. For metastic melanoma that is already “in the system”, neither surgery or radiation is going to be a cure, but it can achieve complete control over a local tumor (or tumors) that may be causing issues.

    I hope others out there have more information about mucosal melanoma for you, including specialists who may have more experience with it. You of course are doing the right thing in seeking it out. Perhaps Catherine has some good contacts for you. Also, I notice on the “glossary” section of this site, there isn’t an entry for “mucosal melanoma”. Catherine, could one be added, similar as to what is there for “acral lentiginous melanoma”?

    Best wishes, let us know what you learn!

    Joe

    #64917
    Catherine Poole
    Keymaster

    Although the previous post is beneficial, I’ll add my two cents. Mucosal melanoma arises in the mucous membranes of the body: nose, vulvar, anal, etc areas. It isn’t necessarily more aggressive than cutaneous (arising in the skin) but can be diagnosed at a later stage since it isn’t readily visible. It behaves much like cutaneous once it spreads or becomes metastatic. So treatment with the immunotherapies is probably optimal (i.e. PD1 and IPI) It is almost never BRAF positive so those therapies wouldn’t be useful. It can be Ckit positive and with limited success then treated with Gleevac or a similar drug.

    He definitely should be seen at a center of melanoma excellence. Closest geographically would be UVA Charlottesville, Craig Slinguff, next Johns Hopkins in Baltimore, then Sloan Kettering. Because it is rare, there isn’t a lot of research available.

    I hope they found this early and your uncle finds a good doctor to work with. Let us know how it is going.

    #64918
    FromTheLane
    Participant

    my wife has mucosal melanoma, was diagnosed as stage IV last november and went straight on to the checkmate ipi/nivo trial in the uk

    despite only 6 weeks of treatment (due to drug induced hepatitis) her mets had significantly reduced in size at the week 12 CT scan and she has been ‘stable disease’ ever since then

    she has not yet been unblinded

    #64919
    Anonymous
    Guest

    FromTheLane wrote:

    my wife has mucosal melanoma, was diagnosed as stage IV last november and went straight on to the checkmate ipi/nivo trial in the uk

    despite only 6 weeks of treatment (due to drug induced hepatitis) her mets had significantly reduced in size at the week 12 CT scan and she has been ‘stable disease’ ever since then

    she has not yet been unblinded

    That’s wonderful news.

    Curious, does she get two infusions per treatment session or one? Two would suggest PD1 plus IPI, unless they give everybody two “infusions”, one being a placebo for the IPI and PD1 only trial arms.

    Regardless, she’s responding very well.

    How does she feel?

    Jeff

    #64920
    BNP68
    Participant

    Thanks everyone for your replies and great information. Thanks for seeing through my terrible spelling!

    Brian

    #64921
    Cbs805
    Participant

    My husband has mucosal melanoma of the sinus which was diagnosed April, 2013. He has had 2 surgeries, chemo, multiple radiations, two rounds of Cyber knife treatments to different areas, 2 rounds of ipi and now is on PD-1 expanded access at Beverly Hills Cancer Center. He is stage 4 with tumors on his kidney, liver, lung, etc. Today he had infusion 5 of PD-1 and his first CT and MRI since starting PD-1.

    And happy news – no new tumors and significant shrinkage in many of the tumors. His side effects are itching and fatigue. He is negative for CKIT and BRAF. From talking to other patients , as far as I can tell mucosal melanoma isn’t treated any differently than other melanomas.

    #64922
    BNP68
    Participant

    Thanks Cbs. Congrats on your great news. That is fantastic!

    Brian

    #64923
    FromTheLane
    Participant

    jeffb wrote:

    FromTheLane wrote:

    my wife has mucosal melanoma, was diagnosed as stage IV last november and went straight on to the checkmate ipi/nivo trial in the uk

    despite only 6 weeks of treatment (due to drug induced hepatitis) her mets had significantly reduced in size at the week 12 CT scan and she has been ‘stable disease’ ever since then

    she has not yet been unblinded

    That’s wonderful news.

    Curious, does she get two infusions per treatment session or one? Two would suggest PD1 plus IPI, unless they give everybody two “infusions”, one being a placebo for the IPI and PD1 only trial arms.

    Regardless, she’s responding very well.

    How does she feel?

    Jeff

    placebo given where necessary to keep the trial arm blinded, Jeff

    only real side effect was the hepatitis and hypo?thyroid

    has felt fine, a bit tired at times, hated being on steroids for 3 months

    week 30 scan results today so fingers crossed

    #64924
    RJoeyB
    Participant

    Brian, just stumbled across this link in a post on Facebook, looks pretty detailed…

    Primary mucosal melanomas: a comprehensive review

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3466987/” class=”bbcode_url”>http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3466987/

    Joe

    #64925
    Catherine Poole
    Keymaster

    Joe,

    Thanks for finding this source but I was disappointed with the overview. The authors are from Serbia, and I think that may explain the less than optimistic view of mucosal melanoma prognosis. It is also dated, from 2012, whereas we didn’t have much experience with the new immunotherapies. I believe we are making great progress in treating mucosal with immunotherapy, especially PD1.

    #64926
    RJoeyB
    Participant

    Thanks Catherine, I understand your points completely. I get torn with journal papers like these, just given the dearth of information about mucosal melanoma, when I sort of stumbled on it, I remembered Brian’s inquiry post for his uncle from earlier and I thought it could at least be an additional source.

    Joe

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