Home Forums Melanoma Diagnosis: Stage IV Indolent melanoma – re Frank’s ? on How long stage 4

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  • #21322
    Celeste Morris
    Participant

    Yes, I think it is extremely interesting that some people go a very long time from known (or suspected, though sometimes in retrospect) melanoma lesions to significant complications and/or death from melanoma….while others are rapidly ravaged by the disease despite all manner of treatments. I am 10 years living with my diagnosis come August, having used no treatment other than surgical removal for the first 7 years. Through various boards I have discovered a handful of folks who went 13 – even almost 40 years between first diagnosis and stage IV. I think a study examining the immune systems of folks like that would be very enlightening in the search for treatments. I posted my thoughts and an article re: indolent melanoma and what researchers are thinking about it on my blog on April 1, 2012. For what it’s worth! Hang in there all. c

    #60982
    Catherine Poole
    Keymaster

    I couldn’t agree more! Everyone’s immune system is different and therefore has to explain the difference in disease progression. Also, the mutations associated with the different tumors.

    #60983
    dallyup4
    Participant

    I agree as well, I hate this disease but am fascinated with what works for some and not others.

    I am one of those that had 35 yrs between my 1st melanoma and stage IV, will be 3 yrs in Aug. since dx stage IV and have been NED for 9 mos.

    I would gladly let them study my immune system or what ever they wanted to study if it could lead to a cure or even better treatments!

    Susan

    dallyup4

    #60984
    buffcody
    Participant

    I’m currently part of a clinical study at the University of Michigan that includes complete genetic sequencing of me and tumor. I’ll post additional details sometime soon. The tumor removed from my buttock on May 1 is being analyzed and results should be forthcoming by the end of next month. I had been thinking that it would yield little of value. Though I have an unknown primary and don’t know but doubt I would learn much more than that I am not C-Kit and that, even if NRAS positive, so what with the present state of the art, Dr. Chris Lao is very, very enthusiastic about the results that have been forthcoming so far and how much they are learning as the months go by that was not known before. I don’t have details but I gather we are moving towards knowledge than can be quite valuable in personalized therapy. So I’m getting enthusiastic and even hopeful that it may help answer questions such as we are raising around this topic of extended immune response, which will, of course, direct more individualized therapeutic interventions.

    #60985
    cohanja
    Participant

    Is this regarding how long from Stage I diagnosis to Stage IV? What % of Stage I’s do progress to Stage IV versus never progressing?

    #60986
    Catherine Poole
    Keymaster

    Frank has an unknown primary. In the majority of cases where the melanoma comes back after many years, it did not start out as low risk or the pathology report was incorrect. It is biologically unfeasible to do so.

    #60987
    buffcody
    Participant

    I thought since this had become a separate forum, I would repeat the post that began it from the other Forum. All very, very speculative, of course.

    Seeing Susan’s post about the 35 year gap between her Stage I melanoma and Stage IV leads me to post a speculation I have had for sometime that no doctor would ever be able to affirm (or deny?). When I was 15, 56 years before the appearance of my Stage IV melanoma in my lung, unknown primary, first coming, I had been operated on with a radical lymphendectomy for suspected cancer. All axillary lymph nodes on my right side were removed because the surgeons were sure I had cancer, probably Hodgkin’s lymphoma. As one might imagine the state of the art of biopsy was very primitive. I think the only way to deal with Hodgkin’s in 1956 in the very, very early days of any systemic treatment would have been resection anyway. Amazingly, no cancer was found on analysis. But did they even think of melanoma? Would they have? None on my skin. Fast forward to 1993. My nephew (on the melanoma prone side of the family) presents the same axillary symptoms I do. No clear primary but this is diagnosed as melanoma Stage 2 or 3. Two years later despite interferon he is gone. Can melanoma hang around in the body if one has a strong immune system response to it suggested by the fact that I might have been dealing with it for 56 years? A question obviously I will never get answered this side of heaven. But that’s my hunch. And a year into treatment, I’m more than holding my own, with a good reaction to ipi and a fairly successful game of whack-a-met.

    #60988
    cohanja
    Participant

    So, Stage I melanoma. . .treated. . but hung around somewhere in the body for 56 years (maybe indolent, maybe being kept in check my immune system, maybe “hibernating”), and then came back as Stage IV (either because immune system compromised or whatever)? Can any other type of cancer do that?

    #60989
    Catherine Poole
    Keymaster

    No one has the answers to these questions, if they did, we’d have a cure most likely. But whether the original lesion was stage 1 is hard to prove. I’ve seen such cases where years later it comes back and the pathology is reviewed again and found to be state 2/3 not stage 1 at all. You know Cohanja, we’ve been over this before with you scaring yourself, but you had a .3 lesion and sentinel node biopsy if I’m correct. The what ifs don’t help you cope. What happened with Frank and some other folks most likely doesn’t apply to your situation since you had your pathology redone 3 times by experts.

    But there is no exactness in medicine, it is an art to be interpreted. And manure happens. But for the majority, low risk stays that way, never to be seen again. And yes, other cancers make a comeback years later too.

    #60990
    cohanja
    Participant

    Ok. Sorry. It’s just that reading this kind of stuff/stories is scary and creates more questions than answers.

    #60991
    Anonymous
    Guest

    A new phrase “whack-a-met”. I love it. :)

    I like your spirit Frank. Keep whacking away at this crap.

    Jeff

    #60992
    Celeste Morris
    Participant

    Read the article folks….then I think what I am trying to say and what will apply to you will be more clear. This is a topic that applies to people who have had a lesion many years prior..with relatively little treatment….who progress very slowly…as opposed to folks who progress rapidly. It is not directly related to people like buffcody in that melanoma seems to run in their families…that is another area that needs research in and of itself….but even within those families….some folks are devastated rapidly…while others manage to beat the beast on their own for a certain amount of time. THOSE are the folks that I feel need to be evaluated for what their immune systems can teach researchers….not that it ran in their families (for this question)…but how their immune systems put it to sleep for whatever amount of time. As for playing the odds….melanoma doesn’t play by rules. That DOES NOT mean this is the time to freak out. This means this is the time to be smart and take care of yourself. By all “odds”…I should never be where I am…but that doesn’t really matter does it? Not a sun worshiper. Had a lesion on my back. Odds are…women have a lesion on their leg…men on their back. Oh well. Lesion was Clark level 4, (0.61). Should never have had a positive sentinel node. But, I did. Complete lymphadenectomy. 4 years later….another lesion. Clark level 3, (0.5). No positive nodes, but complete lymphadenectomy. Three years later…brain met, lung met, tonsil with melanoma, treated with surg and stereotactic radiation. Anti-PD1 (BMS) for the past 2 1/2 years…and remain NED. So far…there is no rhyme nor reason to what made me have more than the odds would predict, nor what made me live longer when compared to some others. THAT is my point. Do not get frightened…get smart. And when we can….I feel we need to encourage researchers to look to those who seem to fight off melanoma longer than others…so EVERYONE…has the chance to win.

    #60993
    cohanja
    Participant

    Yes, exactly what I’m afraid of. . .0.61 and 0.50. . .I bet everyone said “low risk” “don’t worry” etc. . . I just don’t believe it, I’ve read too many instances where things happened that “weren’t supposed to” with this

    #60994
    msue5
    Participant

    I went to a lecture last night that featured a Dr from Johns Hopkins who said Melanoma is the most immune driven cancer out of all cancers. Some Dr’s felt very strongly that immunosuppressants for my lupus played a big role in the development of my Melanoma. It was a new mole and appeared on inside thigh where it certainly got less sun exposure than other areas.

    Mary Sue

    #60995
    pastwinner
    Participant

    This is all so interesting. When my melanoma was initially diagnosed in 2010, my doctors said it probably was related to the chemo, radiation, and immunosuppressants I was given for a bone marrow transplant 10 years before. I give credit to my now 12 year old immune system (the rest of me is 62!) for slowing the melanoma down. I have progressed, but currently NED at stage 4, with no treatment except the usual surgeries and VATS for one small lung met.

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