Husband with AML facing a stem cell transplant

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

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?

Hi Lori
We are at day 9, lingering at the bottom of the blood counts and the chemo and transplant side effects are making themself known in a big way. Today is the first day he doesn’t want to drink or eat anything. Water is even tough because of the throat muscles not quite working right and the mucositis is thick. He has a constant drip of meds for pain which is helpful. Excellent nursing care too!

Waiting for the doc’s daily visit as I write this. So far he has been reporting that medically, Dane is on track. We just have to weather these next few days until he turns the corner and the counts start to rise.

I picked up Carnation Instant Breakfast and Orgain protein shakes today but I am waiting for him to want to try it. He is also experiencing GERD along with the swallowing difficulties, so we have to take it slow. It’s a catch 22 because when he drinks, he tries to get as much down as possible but if there is too much in his stomach he gets heartburn. 🤦🏻‍♀️

I am recalling your advice not to despair because this is part of the journey.

Thank you for checking in.

Mary

Hi Mary, Thinking of you and Dane…how goes it??

cobb8
I was diagnosed with MDS. I had a bone marrow biopsy which showed any signs of MDS progressing. For me, it did not progress yet. I had a genetic mutation and blood issues since my other cancer treatment ended 1 year ago. I was 60 at the time. I moved for one oncologist to a hematologist. I was told by the hematologist that the only possible cure for my MDS was a bone marrow transplant. My history and genetics were my reason to do it.
I know others on this site will post their experience. Especially those with Multiple Myeloma.
For now, there will be questions to ask, but at stage 0 that means not in a hurry.
If you have not, check in Mayo Connect for the Multiple Myeloma or the Blood disorders. We understand and that is why I am part of this connect. Support and real life experiences.
Be good to yourself.

Chemo pills and two needle infusions in my stomach.

Welcome to Connect, John (@cobb8. You came to the right place for answers with your new diagnosis for multiple myeloma.
We have quite a few members in the forum who also have MM and will be more than happy to offer their support and answer any questions you might have.
This discussion would be a good place to start where you can meet members such as @gingerwhite @henriques @tlgreen12605 and others.

Multiple Myeloma
https://connect.mayoclinic.org/discussion/multiple-myeloma-1/
What type of chemo medication are you taking?

My name is John Coble. I am a 75 year old white man. I have been diagnosed with Multiple Mylona. I have been told we have caught this in the very early stage that it has no stage. I am presently being treated with “chemo”. I do not know what to ask or anything.

Hi all,
Mouth sores for me. None. So far so good. In the hospital, when I had the Melphalan chemo, the nurse came in that morning to tell me about a procedure they have been doing. When I get the chemo infusion, I am to fill my mouth for the entire hour with ice and popsicles. Keep my mouth frozen. They said this has helped patients not get mouth sores. I do know, the med team is ready to help treat those sores if you have them.
All of us with BMT have unique experiences. This is a great place to share them.

Hi Mary! It’s wonderful to hear Dane is doing well and was able to enjoy his Father’s Day rotisserie chicken! Keep those calories coming. 😅

I know Dane has had chemo in the past so he’s familiar with the drop in blood numbers and the overwhelming fatigue and malaise that comes at nadir. (Lowest point). The preconditioning chemo for the transplant wipes the pipes clean, so to speak, and this may feel worse than he’s used to for just a couple days. Actually for me, the worst was the night right before my white count was detectable. The proverbial “the darkest hour is just before dawn’…scenario. I did have mouth sores as well, which I’d been able to avoid throughout my AML chemo rounds. Wasn’t so lucky this time but my team had me covered. After that low week, things really were on the up swing. So tell Dane to hang in there. And if he needs pain meds for mouth sores…take ‘em. There are no awards or trophies for being stoic! I asked. LOL. Better living through chemistry! 💪