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First Name
Rae

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IA

Posts (5)

Mon, Oct 14 11:49am · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Hi everyone! No we are not yet back in Africa. The criteria for our return is for Mark, my husband, to have one year of clear PET scans after the completion of the most recent treatment. Though he was in complete remission one month after his CAR-T treatment, a lymphoma tumor popped up ON HIS LEG, of all places, about three months later. That was successfully radiated, but on the same PET scan that showed the success of eliminating THAT tumor, a NEW one appeared near his adrenal gland. He then started on pembrolizamab (Keytruda) to stimulate his "wimpy" T cells. The NEXT two scans showed that same stubborn tumor REMAINING in place. It was no larger and no new spots appeared, but, all things being equal we all wanted that thing GONE! It was determined that it too could be radiated, so that's what we are doing at the present moment. His is also continuing with the Keytruda. The knowledge that we cannot possibly return to Africa for a long time yet is sad. The outlook would be much more optimistic if we hadn't had so many birthdays before Mark was diagnosed. Then we could just persevere until we finally defeat this cancer once and for all! But the longer this goes on, the closer we are to the age when we really should retire anyway. We are trying to find a professional role we can do from the U.S., but as you see, we are still regularly engaged in medical appointments, so that narrows the range of possibilities. It helps when we reflect on the fact that these two years since his diagnosis are a "bonus". He was pretty sick by the time we arrived at Mayo and didn't look like he would be around much longer. But he's still alive and feels quite well. So, with all of the "bumps in the road" we still have much to be thankful for. Thanks for "listening". It's sort of therapeutic to spell it all out.

Mon, Oct 7 9:32am · Life after a cancer diagnosis in Cancer

Thanks for posting this!

Tue, Feb 12 12:50pm · Post CAR T cell -- rash in CAR-T Cell Therapy

i'm so glad you posted this! My husband is 9 months post-CAR-T and he has a rash that started on his forehead two or three months ago. Just as you said, it is itchy at times. He saw our primary care doc, who prescribed a topical anti-inflammatory creme, which helped. (He was told to use it no longer than 2 weeks.) But now the rash is back and has spread around the side of his head and into his scalp. I'm glad it's not a constant annoyance, but it would be nice to understand it a bit better. Not that we're complaining! Given the choice between a harmless rash and deadly lymphoma, I think we'd take the rash every time!

Oct 29, 2018 · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Hi Greta! I don't have any slam dunk recommendations on good foods post CAR-T. Mark wanted to get away from refined sugar as much as possible. I was afraid he wouldn't gain his weight back, but he did just trying to "eat healthy". I try to get plenty of veggies and fruit, not much in the way of red meat (well, okay once in a while) but quite a lot of chicken and tuna at least once per week. Oh, yes, he snacks on various nuts You'll notice that word "trying" in my third sentence. I don't have this one nailed down. We are definitely a work in progress. I hope Grayson continues to feel better!

Oct 22, 2018 · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Hi Greta! I'm Mark's wife. We've been traveling and only just saw your post. I hope your husband is doing better by now. For Mark the two-month ban on driving was almost worse than being in the hospital. : ) Now, looking back, he totally understands it and is glad he was restricted for a while. He says that even now he can tell he's not 100%. Things that used to be automatic when he drove, he has to think about them now. It's a long road but so much better than any other options! Hang in there and take care of yourself! Rae
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