mich_clayton

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  • mich_clayton
    Participant

    This trial is now open and I will hopefully be signing on the week of February 12th at the NIH. So I’m guessing no one else is on this trial yet.

    I was a little leary as I know that pembro is normally for those who are PD-L1 positive which I am not. I questioned the team about it and was told that they are finding that it can act as a “booster” for the chemos for those patients who are not. So here’s to success!

    in reply to: INCB 54828 #96407
    mich_clayton
    Participant

    Y’all! I feel so foolish. I started this thread nearly a year ago after I attended the conference in SLC.

    I always forget about this forum. I am sorry. I’d love to give my update so others will know.

    I did end up choosing this trial and started on March 2, 2017.

    My first scans were amazing, a nearly 25% shrinkage over all. Each scan, I continued to have shrinkage, averaging about 7.5% from the previous scans. In mid-September during a check in, we decided to take a two week break because of the hand/foot syndrome. When I went back in early October we realized that I the break came during a time I would have needed a scan so we did one that day.

    Results showed a very small new spot on the liver. Strangely it was not even visible to my oncologist.  The radiologist had to point it out to him and then he realized, yeah there is something new there. When the scans were looked at by 2 different independent radiologists for the trial company, neither one of them could see it. They wanted me back on the trial. So 9 weeks later I get my next scans with new growth. Yes, the spot no one could see before grew. So, I’m off the trial.

    Now this was a great trial with shrinkage which is marvelous. My side effects included;

    High phosphate levels – which I kept under control with diet changes and Tums

    Some strange rash – no cream did anything for it but eventually went away on its own.

    Alopecia – I completely lost all hair on my body. (But eyelashes started growing in mid way through and now I’ve got killer lashes. Literally when I put mascara on, they’re as high as my eyebrows

    Hand/food syndrome – very hard to treat for me. I eventually settled on a mixture of O’keefes Working Hands and coconut oil. But had problems walking, I wore Berks and socks (lol) because the friction of shoes made my heels bleed. Lost all my toenails and had lifting of my fingernails.

    Mouthsores – Magic Moutheash was helpful in numbing sore spots.

    Joint pain (thumbs, elbows, knee and hips) – settled on a hydrocodone/naproxen combo that helped make it tolerable.

    Dry Eyes – got worse throughout treatment. Artificial tears throughout the day and a gel and thicker eye drop at night soothes this. Overall a very drying med. I ended up twice a week in for hydration which helped me feel better.

    Im currently looking at a new trial that includes Keytruda in combo with two other meds. Fingers crossed.

    in reply to: Chemo question #94098
    mich_clayton
    Participant

    Summer, I tolerated Gem/Cis for 18 months before I had a tiny bit of growth on my main tumor. It originally shrunk from 13 cm to 8cm. I had lesions on my liver as well and those calcified. I was very fortunate to not have many side effects. I took some steroids and anti nausea meds on chemo days and a couple days after. I did have thinning hair.

    in reply to: Diagnosed with IHCC at 29-years-old #93673
    mich_clayton
    Participant

    Great news, April! Keep plugging along!

    in reply to: Insurance Coverage and Clinical Trials #93984
    mich_clayton
    Participant

    I wish I knew WHY they require private insurance companies to cover but not the states Medicaid programs. I’m stuck here in Nebraska with no trial coverage and Lord knows that is mostly what cc patients need. Packing for Iowa I guess.

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