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  • #22304
    Catherine Poole
    Keymaster

    I’m hoping he will post too, but I’m too overjoyed to wait. He is doing great! Recent scans terrific.

    #66052
    Jonathan
    Participant

    Hi folks,

    I thought I’d posted my most important results a month or two ago, but perhaps I only suggested what’s been happening. I’m currently feeling better than I have in many years (3 at least, probably really more) and am continuing to get a very good response from Keytruda, that I started in May of last year on Expanded Acdess), when I was really at death’s door, with major blockages in my small intestines, and chronic anemia. I couldn’t take anything, including water, by mouth for well over a month, with the dreaded nasal-gastric tube and then a gastric tube, and nurishment by IV only. I had major abdominal surgery in late June (the surgeon was reluctant to perform the surgery, as in what’s the point? but my dear oncologist pushed it, saying he was confident I was going to respond to the drug). I also had 2 small brain tumors zapped in September (their growth was likely retarded by the Keytruda as well – more on that another time – very exciting prospect there) and have been going through physical therapy etc (a total of 2 months in hospital takes a lot of recovery), but now feel much stronger and optimistic about life (even as a 74 year old). I do still have neuropathy in my legs and feet from the earlier chemo, and also an ileostomy that they’re talking about reversing, but at this point, I’m not anxious to undergo yet another major surgery just for convenience. I feel extremely good and very fortunate. We’re taking my daughter, son-in-law, and granddaughter to the beach in the Yucatan for a week beginning on the 19th in celebration (my wife has been convinced she can let me out of the country safely now). So I’m looking forward to a fine 2015.

    All this makes me a believer in the immunotherapy approach. I have been lucky that I have been under the care of one of the early believers at Yale, even if it meant some of my prior immunotherapy treatments were unsuccessful (IL-2,ultimately Ipi, and the failed version of anti-PD1 by Curetech). I’m very excited about the Ipi/PD1 combo trial and have an old friend on it who apparently is doing very well (scan results known on the 15th), and my oncologist is excited about the possibility of adding on other gatepoint inhibitors to combos in the next few years. If only they could move faster.I thought this discussion of these possibilities was very good – http://www.lifescienceleader.com/doc/combination-cancer-immunotherapy-0001

    Those of us currently with melanoma in advanced stages have our lives in the balance. It is analogous to the HIV/AIDS situation in the 1980s – with the chants of drugs in bodies, drugs in bodies.

    With best wishes,

    Jonathan

    #66053
    WITom
    Participant

    Jonathan – so happy to hear you are feeling and doing so well!! Have a wonderful vacation with your family – god bless. Tom

    #66054
    jeff77
    Participant

    Fantastic news Jonathan! Thank you for sharing and enjoy the well deserved celebration

    #66055
    msue5
    Participant

    Great update! It sure seems like there are more success stories on the forum than not these days. I know that’s not the case for everyone but I joined the forum in Jan of 2010 the day I got the copy of my pathology report. I was 2b then but high risk for recurrence and am now Stage 4. I have been stable but never NED after Yervoy 1/12 yrs ago. We are incredibly lucky to have this dreaded disease at this time. Do you still have that black cloud follow you around? I have become more anxious the more time passes thinking this can’t last forever. I remind myself often of the things I am here for that I was sure I would not see. The birth of 2 more grandchildren, my daughters wedding etc. Just wondering if I am alone on this. So glad to hear your good news.

    Mary Sue

    #66056
    rick1981
    Participant

    Very encouraging story, Jonathan & very happy for you. Enjoy Yucatan with the family and let’s hope indeed that (melanoma) cancer is following the HIV.AIDS route to become a chronic disease!

    Good to see there are more and more PD1 (mostly Keytruda for now) success stories!

    #66057
    dkmc
    Participant

    Jonathan so great to get your update. Don doing well also after colon resection June 2013 followed by reintro Ipi. NED now 18 months. We lost a lot of good people these past years which has been difficult. BUT…”success” stories too. No one gets thru this without a lot of surgery, radiation, medications…but some are and it is so hopeful. Have a wonderful trip and as a new Grandma myself, enjoy your granddaughter! Karen :D

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