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Husband with AML facing a stem cell transplant

Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 1 day ago | Replies (92)
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@loribmt

This is a tough week…I remember it not fondly! 😉 I experienced severe mucositis, to the point I was on a fentynal pump for a week. Mucositis is inflammation of the mucosa, the mucous membranes that line the mouth and the entire gastrointestinal tract. So Dane may get to a point where he finds it impossible to eat or drink. His team will monitor that closely. The fentanyl pump for me really made a difference the 6 days it took for this to pass. The moment my neutrophils started making an appearance all the pain disappeared and mouth healed within hours!
Is he receiving Protonix for the heartburn?

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Replies to "This is a tough week…I remember it not fondly! 😉 I experienced severe mucositis, to the..."
mary612 | @mary612 | Jun 21 2:51pm

Hi Lori
Thank you for sharing your experience. It’s comforting to know this is “normal” but I am so sorry you had to endure it. It’s unnerving not being able to swallow properly. But the team just saw him and reassured us that yes, the stem cells will graft in about 5 days, maybe sooner, and he will feel better. For now, they have many tools to help him including increasing his pain meds, pushing IV meds and fluids. We are experimenting with a thickener for water, and protein shakes (which he is able to swallow easier than water).
The nurse even started suction just in case he wanted to use that to clear out thick mucous as necessary.

We will get through this. It may end up being a blur, but this too shall pass. It’s hour by hour now, working with the team to keep him comfortable, clean, and distracted. 😊

Thank you for the encouragement and support!

Mary

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