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Husband with AML facing a stem cell transplant

Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Sep 7 11:43pm | Replies (117)
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@loribmt

Good morning! The positive news of the BMBX was the boost I think you and Dane both needed right now! I’m so happy to hear there’s no evidence of disease! I definitely know the elation we feel when reading or hearing those words.
Another one I love is, “You’re unremarkable!” Hahaha. Truly, I suffer no insecurity when my doctor tells me I’m unremarkable. We joke about it every time because we all know, I’m anything but! 😂😂. Joking aside, I’m thrilled for your Dane’s good news!
Seeing that he’s at day +71 now, I have a feeling this month will see significant improvements on multiple levels! Just being able to even consider reducing those anti-nausea meds is a huge leap forward. It took me a while after finally being off those to get the normal ‘gut’ rhythm back in sync. Greek yogurt with a teaspoon of ground flax every day helped significantly.
Also, being able to resume some normal activities like going to your lake house for a few days is a real morale booster! I admit freely, I ugly cried when I finally got to return to my happy place at the lake after almost 5 months. Just being in the forest with all the trees, birds and the lake. I felt the power of nature infusing me with life again. I’m not a woo-woo person but for me, nature powerful and healing. This had to feel like a huge step forward for Dane!

Sounds like maybe a teeny step back with the hernia. Hopefully nothing urgent…from my limited experience with family men and a couple of my husband’s friends, their surgeries were minimally invasive and very common. So we’ll go with that, right? And really, in the grand scheme of things after enduring the SCT, your super man will live to fight another day…just not bench pressing his weight or tossing around 80 pound bags of concrete mix! 😅

By the way, I’m Day +1883 today! LOL.
Air hugs all around!! 🤗

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Replies to "Good morning! The positive news of the BMBX was the boost I think you and Dane..."
mary612 | @mary612 | Aug 23 4:15pm

Hi Lori!
Happy +1884 Day!!! Wow, that is so fantastic, inspiring, a blessing beyond measure. We are so thankful for you and your recovery that in turn, gives us all much needed hope!

Dane’s hernia was confirmed by his stem cell doc to be something he won’t be able to treat invasively until after he is off immune suppression meds anyway. So, unless he develops other worrisome symptoms in the meantime we are going to try to establish with a surgeon, and when the time is right, get it taken care of.

Yesterday’s clinic visit yielded continued stable lab values. Doc will probably start tapering the tacrolimus in a couple weeks. He even suggested that since Dane is so stable, he could skip his weekly clinic visit next week, our choice!
Well let it ride and see what the week brings, but nice to have it offered.

I’m still hoping for the CD3 Chimerism number to increase, which they say should come up after the tacro levels decrease. 🙏🤞
His last CD3 value was 77, an upward trend since transplant, at least. Our NP said yesterday that some patients Chimerism values are all 100 right after transplant and others see the CD3 lagging and slow to rise. Hope there is no clinical significance between the two.

He’d love to have the catheter pulled but we are waiting for the new hematologist to determine that after she makes the call about maintenance chemo regimen.

I suspect you are correct that his energy and overall sense of well being will really become stronger as he moves into the last third of his first 100 days.
One sign of that is he is starting to think about what he wants to do with his time, because he’s feeling good enough to be a little bored. 😊He’s still struggling a bit with the emotional trauma of this ordeal. Talking with a therapist and some meds are helping with anxiety and sadness when it creeps in.

There’s still a lot to contend with for both of us, physically and emotionally!
But the sun is a little shinier every new morning when I hear his voice stronger than the day before, and things like talk of adding ice cream to his diet because he actually has more desire to eat help me breath a little easier as we move along our new reality.

Thanks again for your incredible support!

Have a beautiful weekend.

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