Chimerism Test Results Post Stem Cell Transplant

Hi @jandm1813. From my personal experience and understanding, it’s not common to have chimerism numbers fluctuate but it can happen. It doesn’t necessarily mean a relapse. In my opinion, your husband’s doctor is making the right decision to not do a knee jerk reaction and give this a little more time. It’s prudent to not make a judgment call on one data point.

The next chimerism will be helpful in determining next steps. If the CD33 shows a downward trend from 90% then his doctor may want to make some changes.
If your husband is still on an immunosuppressant his doctor may suggest a reduction in dosage to allow. This will allow the new cells to be more aggressive to set up a GVHD response.

If he’s already off the anti rejection meds his doctor might take some of the frozen donor cells and give your husband another round of cells to trigger gvhd response to further reinforce the transplant.

If he hasn’t seen these already, there are a few conversations in the forum Mark might be interested in joining related to BMT transplants. Here are some links where you both might like to contribute:

Snapshots of hope…life on the other side of transplant:
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

For now, try to not focus on the chimerism. Just get out and enjoy life to the fullest! Mark’s almost a year out. I know he’d been having some digestive issues early on. How has he been feeling?

Hi @loribmt Lori,
Thank you for this insight. Very reasonable suggestion to not make a judgment call on one data point. Mark is on .5 mg tacrolimus twice a day and he also is still on Acyclovir, Penicillin, Jakafi, Fluconazole, and Bactrim. He was on Prednisone for 9 months for gut GVHD and was finally able to wean off of it in August! He had a bout of C-Diff in early July which was debilitating; he fell at home, hospitalized locally then air transported to Mayo, and spent about 2 weeks hospitalized due to the infection and having steroid myopathy from the long-term use of Prednisone. He struggles getting enough water and his kidneys are a bit stressed; he gets IV hydration at his oncologist office occasionally. His road has definitely not been easy but he and I both are thankful every day that he has more good days than rocky days the last 6 weeks. He has been having migraines and sees a neurologist on November 21 to review recent MRI results.
Thanks again for your help! Jamie and Mark

Hi Jamie. If I may dare say, the first year after a SCT is a challenge in many respects. I joked with my doctor about how this isn’t for sissies and anyone going through this needs to keep a sense of humor, have a sense of adventure and be flexible/resilient! Right?
Mark has had his share of side effects. I’m happy to hear his gut gvhd has subsided. That will go a long way in helping him get his strength back, having a return to a normal gut biome.
There was a period where I felt rather frail. I didn’t fall but my balance was way out of whack. My doctor suggested some PT sessions and that made a huge difference for me. I learned some critical core strengthening exercises. I wonder if maybe Mark might benefit from that? If he doesn’t want to go to PT there are videos on Youtube that would be another option. Just go slowly and gently.

Water…that really is a key in keeping those meds flushed through his system. I struggled too, initially, with drinking enough water. What really helped me is to drink room temp water, no ice. It went down much easier and is more readily utilized in the body. I still have a Brita pitcher on the kitchen counter during the day. That way I keep track of how many glasses I have by the refills. I try to drink a cup at a time, at least 8 times daily. But actually have more than that. What do you feel is Marks obstacle in not getting enough water?

I was on all my meds for 2.5 years. Until we transplant patients are off the tacro, we still need that temporary immune system provided by the medications. I wasn’t able to wean completely off tacro for a long time because my new immune system was aggressive. However, the tacro, even at the small doses can be hard on the kidneys. My doctor was cautious but not overly concerned about my kidneys at the time. He’d told me that tacro can constrict the blood flow through the kidneys so we were watching the numbers. After stopping the tacrolimus, my kidney numbers have returned to normal with a good GFR. Water is important to keep things flushing though so I hope Mark can slowly increase his consumption.

One other thing that I might toss out to you. I really benefited from seeing a licensed massage therapist. It was the final step in getting my body back to feeling normal again. The toxins were finally released from my tissue. And interestingly, from that point on, my monthly blood numbers improved! Plus it just feels amazing ☺️ You and Mark could both use a chance to relax…and it might help with his migraines.

Let me know how his neurology appt goes, ok? Have a lovely Thanksgiving. Lori.

Hi Lori, We so agree that going through and recovering from an SCT is not for sissies...never has there ever been a more true sentiment. A sense of humor is a huge plus!
Mark went to PT at Mayo Scottsdale for 5 sessions before we came home to Las Vegas, then had several sessions here to get his muscles to continue to move again. It took about 5 weeks at home sleeping in a lift recliner downstairs, doing PT, walking around the block, and eating as healthy as he could to be able to start walking upstairs again. Sleeping in our bed and stretched out really accelerated his recovery! He continues to do PT at home several times a week.
He is taking in more water these days so that is great. He is still on .5 mg Tacro twice a day. We have thought about getting a massage but he is reluctant due to how quickly he bruises with even the slightest bump.
You are very appreciated, Lori, for your valuable experience! Hope you had a great Thanksgiving! Jamie and Mark

Hi Jamie and Mark, Thank you, I (we) did have a wonderful Thanksgiving. Our daughter and son-in-law flew down to spend a week with us while we’re in Florida. They came last year too and told us it would be the new annual tradition. They meant it! LOL. They even booked tickets in August so there wouldn’t be an issue getting a seat. It’s occasions like this that really drive home the enormous gift and second chance with life that I’ve been given. Makes up for all the challenges and obstacles it took to get to this point. ☺️ Hang in there, Mark, things get better!

I’m happy to hear about the improvements after the PT. Though a massage would be beneficial I can understand the reluctance at this time with the easy bruising. Give it a little more time. You can mention to your massage therapist that you need to avoid deep tissue massage. They can still do quite a bit for lymph drainage without being overzealous with the massage.

How often do you have follow-ups at Mayo?

Good morning, Jamie and Mark. Just wanted to stop by to see how Mark is doing now that he’s several months post transplant. Hope all is going well and life is resuming to normal! Any GVHD issues?