Husband with AML facing a stem cell transplant

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?

Chemo pills and two needle infusions in my stomach.

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.

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

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

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
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

Mary, that’s a perfect way to phrase this neutropenic stage of a new transplant patient…It will end up being just a blur!
Not everyone has the same reactions or let’s say dramatic symptoms during their transplant process. I think some of mine had to do with my previous months of intense chemotherapy for AML which may have set the stage for my mouth sores and nausea. My rebound time between that chemo and the transplant was short.
The fatigue, however, hits everyone. That’s just a given. Anytime our blood numbers drop that low there’s just no more ‘umph’ to give. 😉. But engraftment changes everything. When those new cells set up housekeeping and ‘git ta gittin’ it’s like coming out from the dark side of the moon! So Dane is doing fantastic and his team has his back. And YOU, Ms Mary, are keeping your cool and being a fabulous caregiver to your brave husband. You’re both going to get through this and have tales to tell!

Good morning Lori,
Today is day 18! We are getting close to a discharge conversation. His counts are up nicely and the team tells us he is 4 days ahead of the average person in that way. The counts came up fast! He has lingering issues with his voice from the mucositis, and swelling in his feet and legs from the fluids. Weaning off the pain meds too.
He is mostly done with being in the hospital, his food choices, lack of a decent appetite, and wants his own bed and home environment. He’s also fatigued, and cranky. But grateful, so grateful.
We’ve endured the peaks and valleys of the SCT this past month, along with the birth of our new grandson a few days ago, and Dane’s original birthday yesterday. I’m straddling a lot at the moment between him and helping the new parents as I can.
We’ve pulled in reinforcements to support us.
It’s a lot. But again, staying grateful and taking each day as it comes. Can’t wait to get him home and onto the next phase of recovery. I expect I’ll be spending most of my creative thinking on what food combinations I can come up with to entice him. I recall you mentioning how your husband put small quantities of a variety of things in front of you so as not to overwhelm. It’s going to be a challenge, I can just feel it.

Onward!

Have a great day.
Mary

Good morning, Mary and Dane! Ah, I see your husband is an overachiever. Haha Doesn’t surprise me a bit! 😉 Home is the reward! It’s quite a motivator! LOL.
It’s wonderful news that he’s engrafted ahead of schedule and doing so well. Those first two weeks are a joy, aren’t they? Giggle. But it passes and then it’s just a slow recovery period with moments of feeling exuberant like a puppy with a burst of energy and then sleeping for 3 days! Slow and steady wins this race!

Being home will help him recoup faster. That’s what I appreciated about my experience at Mayo where I was an outpatient. I find languishing in a hosptial room, no matter how nice, to be a psychological downer. Had 8 weeks of that with my AML journey. So being able to recoup at ‘home’ (in our hotel suite) was so much more positive and normal feeling. Less like a patient.

I don’t envy you at all being the caregiver. Everything is falling onto your shoulders right now. Believe me, your husband is aware and I’m sure it bothers him greatly. I know how guilty I felt when even little things I used to be responsible for, were now too much for me. But unfortunately the transplant recovery takes all our personal focus and we become pretty ‘me’ centered for the first 2 months. Slowly, Dane will be able to pick up some normal activities.

With the new little bundle of joy arrival, I do want to caution you about visitors and exposures during the next few months when Dane will be extremely vulnerable to infections. Bacteria, viruses, molds and fungi will be the threats for the near future. Getting ill during the first 100 days or so can impact the potential for chronic GVHD issues as an aftermath.
Wish Dane a belated Happy B-day for me! And to both of you, a warm congratulations on the birth of your little grandson! June is an incredibly big month for you and your family with your anniversary, BMT odyssey, birthdays and BIRTH-days! The rest of the summer will be pretty anticlimactic! 😉 Enjoy ‘going home’…be it ever so humble, there’s no place like it. Air hugs to you both.