Home Forums Melanoma Diagnosis: Stage IV This chronic disease is reawakening

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  • #22636
    gostan
    Participant

    Good Morning Friends

    I have been watching this board quietly over the past year as my Braf/Mek regime has held my melanoma in check with no progression, until recently. My last Two CT scans have shown some minor progression up & down as have my recent Brain scans. My most recent brain MRI on Tuesday shows one small growing met and two new extremely small mets that will be watched.

    I am scheduled to treat the one growing met with SRS this coming Wednesday. I have no symptoms other than late day fatigue which is most likely due to my age (66) and active schedule. I still work full time and made it back to the ski slopes on a limited basis last season. I am finally doing some controlled work outs to try to regain more strength to get some more of my mojo back for the upcoming ski season.

    After a year, The Braf/Mek regime is beginning to fail, although it is still working on my abdomen and chest leisions. When the right time comes I will likely be switched over to pd1. The point I want to make is that I know that I am extremely lucky & I can deal with my upcoming SRS treatment. But I am having difficulty getting my arms around the fact that I am going to be living and dealing with the ups & downs of this chronic disease for the remainder of my life, when I erroneously thought that I had this darn disease under control.

    #67775
    Catherine Poole
    Keymaster

    It is good to hear from you but not under these circumstances. I know some doctors have been trying out the PD1 in addition to the braf/mek. toxicity might be an issue, but you might discuss. If the BRAF/Mek is still working, perhaps another agent can come in. I know you are in good hands and I hope you are able to get back to the slopes this winter!

    #67776
    gostan
    Participant

    Yesterday was CT scan day and today was results day. With the scans showing more progression in my abdomen and lung, along with the previous recent brain activity, it is obvious that the Braf/Mek is not working. So, I am stopping the Braf/Mek as of Friday and beginning Keytruda on Tuesday. just praying that there will be no colitis side effects.

    #67777
    MathewR
    Participant

    Stan, I had moderate colitis after my third Ipi infusion. On Keytruda, I’ve had no GI issues beyond infusion-related loose bowels (after my first infusion). While it is possible to combine the drugs, I’ve not heard that this is a winning strategy (yet). Indeed, there is a case for getting off BRAF-MEK so that you might possibly return to it after a break if needed.

    #67778
    Catherine Poole
    Keymaster

    Sorry to hear about the disease progressing. But Keytruda has a good record, both for response and low toxicity for most. It has less of the IPI side affects for certain. Keep in touch and let us know how things go with the new therapy!

    #67779
    gostan
    Participant

    MathewR wrote:

    Stan, I had moderate colitis after my third Ipi infusion. On Keytruda, I’ve had no GI issues beyond infusion-related loose bowels (after my first infusion). While it is possible to combine the drugs, I’ve not heard that this is a winning strategy (yet). Indeed, there is a case for getting off BRAF-MEK so that you might possibly return to it after a break if needed.

    MatthewR, your post gives me just a bit of confidence that I may be able to tolerate the Keytruda. My colitis on the Ipi was about as bad as it gets. But I am going to give this my greatest effort to get through side effects, if any crop up.

    Catherine, I will keep in touch.

    #67780
    gostan
    Participant

    Infusion #1 is done and nothing really to report as all is well, with Infusion #2 on November 17th. My one interesting observation about going off of Braf/Mek is that after about 15 months of treatment, I did not completely realize how the drugs had affected me. All of a sudden I am no longer tired, or dealing with eyesight/stain issues and my equilibrium & strength of body and mind are now greatly enhanced. Going up & down stairs like the old Stan. It is like a fog has been lifted and I feel like a different person.

    #67781
    MathewR
    Participant

    Stan, glad to hear. I can appreciate the stress around GI issues. As for Keytruda, there can be a creeping fatigue after a few infusions, but hopefully you’ll avoid it.

    #67782
    Catherine Poole
    Keymaster

    Glad to hear the “old” Stan is back. The GI issues shouldn’t be as bad with Keytruda as they very notable with IPI. All of these therapies do have their issues but hopefully will get rid of the tricky melanoma that misbehaves.

    #67783
    cherie
    Participant

    Hi, Stan,

    I just had my 8th infusion of Keytruda. I have to admit that I am surprised that there are side effects that seem to get more pronounced as treatments continue. I told my onc yesterday that I do not feel well in the morning when I get up, and he said that he just had another patient tell him that minutes before. I also told him about muscle soreness, and he said that does happen. All of this is manageable, and I’m just stating, not complaining. Good luck.

    Cheris

    #67784
    gostan
    Participant

    Two infusions down and things are all right. Of course, I ended up having SRS on 3 small leisions on Wednesday. Other than weening off the Kepra, no complaints & other than these 3 leisions, no others were shown on my last MRI. 12 of us for Thangsgiving dinner. Just laying low this weekend after the radiation as there is no TtoB skiing yesterday in Vermont. Next weekend I plan to break out the skis. ⛷

    #67785
    Catherine Poole
    Keymaster

    Sounds like a plan! I went snow shoeing in Colorado where my son lives and it was great fun. They always have snow! Rest up and keep in touch.

    #67786
    goldfidler
    Participant

    Hi Stan,

    I thought I would send a quick note regarding the mental adjustments of the ups and downs of this journey. I think the mental aspects of Stage 4 melanoma can be almost as tough as the tremendous physical challenges. I just had this conversation recently with a fellow S4.

    I don’t like my “new normal.” I liked the old normal. On my PDL1/MEK trial, I would be perfect one day and then knocked down like the flu the next. I would shift from a morning person to a night owl overnight, and then back again. I would think that I was beating this disease just long enough to find out that my drug combo stopped working. I would feel so good that I would commit to attend an event, only to have to cancel at the last minute.

    At least for me, this is my new normal. And I have now accepted it. I miss events but I also go to some too. I am still here, searching for the silver bullet combo that cures this disease. But I have also accepted that I will gladly take 12-18 month middle ground position without cure but also without further progression. Our friends and family need to accept our new normal. And so do you.

    We do the best we can. We try. We stumble but stand back up. And we rely on our friends. We are here to support you.

    #67787
    gostan
    Participant

    Four infusions so far withthe 5th on the horizon as well as updated CT Scans & Brain MRI in mid January. So far everything is good and I feel great. 10 ski days in VT so far with a trip to Utah planned for late January. My attitude is to take full advantage of being off Braf/Mek while I can. Because I do know that things can always change. Best wishes to all for a happy & healthy 2016.

    #67788
    Catherine Poole
    Keymaster

    Wonderful news! Happy you found some snow on the east coast! We have had a strange winter with cherry trees in full bloom and now 9 degrees. Anyway, all sounds good and thanks for checking in.

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