Home Forums Melanoma Diagnosis: Stage IV No Longer NED

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  • #20683
    buffcody
    Participant

    When I last posted, I was recovering well from surgery to remove the only appearance of melanoma through a right lung lobectomy. PET scan last week showed no further cancer, but the brain MRI showed a very likely met, about 3mm., had developed in the two months since the last one. The suspicious spot that had been watched through the two previous scans has not changed. Now my oncologist recommends removing both, and I am being staffed by both neurological surgery and radiological oncology to determine the best course of removal. I presume the recommendation will be for stereotactic radiation removal followed by ipimumab. Disappointing. I liked the idea of being NED for the indefinite future. Last week I had had the chance to have a consult with Dr. Chapman at Sloan, while I am being treated at the University of Michigan. Dr. C felt that the order I was following was a proper one and also recommended that ipi would be called for if something did show up as it has. So off into the great unknown, but less unknown thanks to this Forum and site. I’ll keep in touch. Thanks for the support and prayers!

    Frank

    #56949
    Catherine Poole
    Keymaster

    I’m sorry to hear this news. I preferred you NED too! Stereotactic radiation is very effective for brain mets. Please check out our webinar on that subject, click on the webinars tab above. I would also get on the list for the PD1 trials. Slots are opening around the country and it may be more promising than IPI. There are two different ones, and two others starting up. They have minimal side effects. Keep in touch and let us know how you are doing.

    #56950
    lizliz
    Participant

    I am so sorry about your news. It sounds like you have a sound plan of attack in place to fight this next battle to hopefully get back to NED! I will be praying for you as I will be praying for all of us.

    #56951
    Anonymous
    Guest

    Frank:

    Sorry to hear this news. Stereotactic radiation on such a small met (3 mm is very small BTW, right at the limit of resolution with MRI) would seem ideal and over in one setting with no side effects. You can also start IPI anytime now and there may even be an advantage to starting it prior to radiation to leverage any benefit that may occur from the dead tumor antigens stimulating your IPI enhanced immune system.

    I’m a bit puzzled though as I would have thought, in your case, a reoccurrance would have taken place elsewhere in your system first, like your lungs. But that’s the nature of this beastly disease…it dose not follow any “rules”.

    God Bless and Keep Us Posted.

    Jeff

    #56952
    Catherine Poole
    Keymaster

    Actually Jeff, his first tumor was in his lungs. His primary was unknown. Thanks for that positive note though about the size being small, truly the stereotactic radiation is amazing!

    #56953
    dkmc
    Participant

    Frank, very, very sorry to hear your news. Don also had no primary, with discovery in lymph node in his neck. Sooo neck dissection, neck dissection, neck dissection, then lung met & subq skin met on his back…IPI & now NED. Like you really, really hopeful to stay there for awhile. I wish you good luck with the IPI treatment. Sounds like you have a good team, smart to get another opinion. I am wishing you the best & after surgery that you will remain NED! The good news is it sounds like even with no measurable tumor they will start you on IPI so this is progress in our fight against this disease. Good luck, Karen

    #56954
    buffcody
    Participant

    I saw the neurosurgeon Wednesday, and he, unlike any of the others that had looked at my three brain MRIs felt that the second “mysterious” whatever that had appeared through all three was definitely a met. So they will be zapping two and not one. Jeff, he also spoke of the common practice at U. of M. now being beginning IPI before radiostatic surgery, but I am not sure yet whether that practice will be followed in my case or not. I’ll be spending a number of hours with the radiology folks on Tuesday, I bet a lot of it measuring me up, and I should hear the finalized plan shortly after that after the team of medical oncologist, neurosurgeon, and radiation oncologist meet. I’ll keep you posted.

    Still hoping to swim one more meet a week from Sunday. My most recent cold kept me out of the meet a week ago Sunday. The tumors are located so they should not cause any untoward events, though there is some risk because of the location of one of a lose of smelling capacity if a minor error was made.

    #56955
    zephyr66
    Participant

    frank –

    you’re in my thoughts. sounds like you have a good plan, indeed. go swim! and, putting out the thought/prayer that you’ll be swimming again soon after this round of treatment. keep us posted on everything. stay buff in mind and body! :D

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