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Chronic GVHD ~ Let’s talk about it!

Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Nov 15, 2022 | Replies (68)
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@pamh480

HI Lori--thanks for your reply. I went through all the OTC ointments and drops and nothing worked. FWIW I was graded IV on the ocular gvhd chart. Mayo mixes my serum tears (I live in Mesa AZ).
I think the vaccine MAY have caused a flare, but who knows-?--I really hesitate on the pred, because I am scheduled for removal of a cholesteatoma on 4-6 (ear surgery). If it gets much worse I will. I see EVERYBODY next week (pre-surg, ophthalmology and hematology). I have been having some mid-back pain when I am up for extended periods (standing or sitting--especially with arms extended like cooking) and that is contributing to my fatigue I think. I do have really good days--I just have to remember that I can't spend all my energy on those days. I just tell myself, every birthday I get to see my grandkids celebrate and every milestone my adult kids pass make this all worthwhile.

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Replies to "HI Lori--thanks for your reply. I went through all the OTC ointments and drops and nothing..."
Lori, Volunteer Mentor | @loribmt | Apr 15, 2021

@pamh480 Hi Pam, Thought I’d check in with you to see how your surgery for a cholesteatoma went earlier this month. Has this impacted your hearing at all? Hopefully all is well now and you’re recovering nicely.

I was also wondering if your gvh flare settled down a bit? Oddly, I had a return of some symptoms too, about 2 weeks after my 1st vaccine appt. But it has disappeared and I was able to get the 2nd dose. Finger’s crossed there’s no repeat. At least I know now that it’s temporary and caused by inflammation. Beats getting the virus. After speaking with my neurologist, any risk from the vaccine definitely outweighs getting the virus.

Re-reading your previous message about your back pain and fatigue. Have you worked with a physical therapist? I found during all my treatment and recovery that my core muscles suffered greatly. I thought I’d been trying to exercise and been active enough to keep ‘in shape. Wrong! LOL
But after checking in with my oncologist, he set me up with a PT. Wow, learning some simple core exercises really made a huge difference in my stamina, back fatigue, standing and balance. Just a thought.

Since we chatted last, Connect has gone through some Spring remodeling and decorating, Have you had a chance to check out the new and improved site? It’s more streamlined and you can now control the amount of emails received, personalize notifications and search easier.

Sending positive wishes your way! Be kind to yourself and remember to listen to your body. Lori.

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