← Return to Chronic GVHD ~ Let’s talk about it!

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Hi, I am a year and a few months from my SCT for AML. Started with acute upper gut while in the hospital, was hard to eat and take on calories, but I avoided the feeding tube. I was put on a short course of Prednisone and Beclomethasone oil and relying on Zofran, which helped me eat a bit more and not lose anymore weight.

At 6 months still struggling with low appetite and a wall of fatigue, shortness of breath, dizzy and feeling like I was dropping out. I was finally diagnosed with heart concerns after I pressed for an EKG resulting abnormal. The cardiologist thinks it was the Gilteritinib, the oncologist thinks it was the transplant. Still feeling poorly I went to Long Term Follow Up and they gave me mouth washes for mild mouth GVHD and kept up with the oil for my gut. My skin and eyes were dry and bothering me and my vision was getting worse so I did drops.

I continued to struggle with fatigue and was losing ground on exercise ability, range of motion, with more pain. Interesting how much pain and discomfort you learn to tolerate, and for how long, while you work with oncology providers to get symptoms properly addressed. Sorting out what is causing what from everything you have been through and all the medications is frustrating. Always making sure the blood tests and liver function stayed doable, and there was no signs of disease. Just kept walking and exercising everyday and trying not to worry too much about relapsing, while avoiding COVID. Happy I could spend masked social distanced time with my family and some friends after being isolated for so long. It was difficult to not be able to hug my grown kids when they came to cheer me up until we had been vaccinated. It was hard not to collapse from a sea of emotion with the first tearful real hugs.

It became obvious I was suffering with chronic GVHD at the end of June after having tapered off the Cyclosporin and started Sirolimus taper. I was prescribed 20 of Prednisone and stayed on Sirolimus. I had improvements in my energy level and breathing and range of motion. Working everyday to regain strength and function. Not liking the side effects, like high cholesterol, poor sleep, muscle and bone wasting, swollen face eyes and ankles etc.

After my annual in August my Bone Marrow Aspirate PCR showed .017 NPM1 mutations. I started to taper Prednisone, just down to 15 now. Hopefully I can taper fast enough and keep GVHD in check so my new immune system can eat up the small amount of mutations. That’s the plan. Fingers crossed.

Trying to increase my walking and trying to ride my bicycle around the neighborhood again, just have to walk my bike up the hills. Sure miss Geology, Gardening and Pottery. No mud dirt or plants for me yet while on immune suppression. My goal is to hike, even just a mile or so at Mt. Rainier again before fall sneaks in, it’s been years while fighting to get better. Could be a bit ambitious...especially with Delta raging.

It’s sunny here today, happy Labor Day!

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Replies to "Hi, I am a year and a few months from my SCT for AML. Started with..."

Hi @anieke. Happy Labor Day!
Climbing even a portion of Mt Rainier would be a huge motivational tool!! Gorgeous area of the Pacific Northwest! It’s encouraging that some of your energy is returning but you sure have been through the wringer with the transplant aftermath. It can definitely be an energy sapper but wow, being able to bike around your neighborhood and walking, considering where you were a few months ago, is pretty impressive. Baby steps!

You have my sincerest empathy with having to take a sabbatical from geology, gardening and pottery! It’s really been a challenge for me, especially not gardening! But 3 SCT acquaintances have become seriously ill, 2 having perished because of fungal infections from gardening!! One died from fungal meningitis, another from a fungal lung infection similar to blastomycosis. The 3rd man is recovering but regrets not listening to his transplant team…and his wife! It’s all so tragic and could have been avoided.

It’s so critical and really difficult to get those meds balanced isn’t it? My transplant doctor equated the anti rejection meds like dials on a control panel always having to tweak the dials to get things just right. So now you’re trying to taper off the prednisone enough that your new system can take over and do the job intended by having the transplant but not so much that it causes more GvHD. I have my fingers crossed for you and sending positive vibes for an aggressive attack against those mutated cells!!
Time to call out the Attack Minions! So, did you name your new cells?