Home Forums Melanoma Diagnosis: Stage IV Final Anti PD 1 infusion and scans…

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  • #21169
    LynnLuc
    Participant

    Over 30 months have come and gone…I remain NED!! 3 plus years now :).

    I had a biopsy yesterday because I had a hot node on in my neck…it was infection from sinus/ears etc…not melanoma. Final infusion of anti pd-1 today…no more! FYI I was told if I need it after it has been approved I would probably benefit from it and could do it again!

    Side note…Moffitt has had 4 patients out of 120 got chicken pox/shingles very quickly after infusion…talked with Dr W about it today. It is actually a high concern at this point….4 at this point doesn’t seem like so many BUT…given only 120 it really is cause for pause…they are working on it with BMS/CDC/ FDA…they have no idea what is going on with the immune system…

    #59980
    Celeste Morris
    Participant

    Congratulations, Lynn!! Way to go the distance. Interesting info re varicella. We have much to learn about all the ways anti-PD1 has affected our immune systems I’m sure! Enjoy your break from infusions!!! May it last a lifetime! Celeste

    #59981
    NYKaren
    Participant

    Lynn,

    Such wonderful fabulous news. I’m so very happy for you. Very interesting about chicken pox/shingles…

    May you always be NED,

    Karen

    #59982
    Sandalwood36
    Participant

    Congrats! Great news! Bob will hopefully be starting PD1 in a week. Can you please let us know how your treatments went and what the side effects were? Thanks.

    Linda

    #59983
    dkmc
    Participant

    Wonderful news Lynn! Enjoy every moment!

    Karen

    #59984
    Shirley Z
    Participant

    Hi Lynn,

    30 months! That is wonderful news. Love hearing the success stories. Keep the good news coming.

    Shirley Z

    #59985
    LynnLuc
    Participant

    The side effects are not bad at all…I did get a red flush most of the times I did the infusion of anti pd 1. I also had mild flu like symptoms ( like chills and my knuckles ached and other joints) but it lasted less than 12 hours. It used to come about 2 or 3 days after infusion and then later it came the evening of the infusion. My major complaint is probably my lack of energy…once I get going I am fine.

    I have dry skin and a burned out thyroid which is now maintained by Synthroid. I have some Vitiligo ( white splotchy areas where my freckles seem to have vanished :). The biggest side effect has to be NED!

    Lynn

    #59986
    Anonymous
    Guest

    Lynn, this is wonderful!

    Jeff

    #59987
    lak1
    Participant

    awesome

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