Stem Cell Transplant & Recovery

jeffhampton,

There are many topics on this site about a stem cell transplant. One of the mentors will share a number of links and I will too after i say go to Blood Cancers & Disorders in the search bar and see all the topics that show. I am 9 months past transplant, but my story is not the same as others. I had MDS. I was in a research study to prevent GVHD. So far, I have not had any GVHD. We have a tremendous amount of real-life experience. There is a lot to read if you have the time.

https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

https://connect.mayoclinic.org/discussion/would-like-a-stem-cell-transplant-support-thread/

Hi Jeff. Having a bone marrow transplant is certainly a life changing event…quite literally! It allows those of us with an uncertain prognosis to have a 2nd chance at life. As you can imagine, that doesn’t come without some risks. But it also comes with an incredible potential reward of a healthy future that wouldn’t exist without the transplant. For me, my BMT gifted me and my family/friends with 5+ years of our lives still together! Without the transplant, I’d be someone remembered at holidays with the empty chair at the table.

There are always risk/reward scenarios. I agree, this is a biggie. But you have AML, a form of leukemia which can create challenges for curing, or even remaining in remission as you’ve already discovered. The BMT is your opportunity to have a life going forward. Period. It is the only potential cure at this time to treat AML and has a very positive rate for success with newer protocols for helping to reduce the events of GVHD.

GVHD is a possibility with any BMT or SCT when we’re using donor cells. The key HLA proteins are matched up as best as possible between donor and recipient. Usually aiming for a 10 out of 10 or 12 out of 12 match. Even then, there can be some issues with the new immune system, ie implanted cells, not recognizing the strange proteins in the body it’s set up housekeeping.

So the new immune system will do what it’s intended by trying to take out the offending invaders, which can be a problem because the host body in which it’s now living. The newly implanted cells can be overly aggressive in the beginning, rushing to any site of inflammation. To combat that in the early months of transplant, you’ll be given anti-rejection (anti-inflammatory) meds to hold back the overzealous immune system response. In time, both parties…stem cells and body, learn to play well together. That’s the goal.

I was told by my BMT team that there most likely will be some gvhd. They didn’t know what part of my body would be impacted or when it would happen, but my doctor/team would handle it. And they did!

We need that graft vs tumor response to wipe out any remaining cancer cells.

Some mutations in AML trick our immune system to no longer recognize the defective cells as cancerous. This allows for some of the cancer cells to go dormant or hide out during chemotherapy only to reemerge some months later. The hope is that with a new immune system, if there are any cancerous cells resurfacing after months of hibernation, the newly implanted stem cells from the donor will now be able to recognize these cells as cancerous and snuff them out. It looks a lot like Pac-Man..chomp chomp, consuming the cancer cell.

@katgob gave you excellent advice and I also wrote a lengthy response in this post of yours from the other day. https://connect.mayoclinic.org/discussion/stem-cell-transplant-decision-success/

Take time to read through the replies. I think you’ll find a lot of useful information. Especially in the link Kat and I provided for an existing discussion I started several years ago. https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

It’s a cohesive discussion where many of our transplant members come together to share. This would be a great place for you to join in the discussion so we can keep the link going with current BMT experiences.

Are you set for lodging & caregiver? Will you be an inpatient for the transplant?

Thank you, @katgob

Thank you, @loribmt

Fortunately I live within 35-40 minutes of Barnes Hospital here in the St. Louis area. I am very lucky in that regard. I am also fortunate to have my wife, one of my sisters, and two of my 4 daughters local and willing to help whenever necessary and needed.

One of my daughters is my donor. She is a half-match, whatever that means. It was originally going to be my brother who was a full match but a health issue prevented him from donating.

I really appreciate you and others taking the time to respond. I have read through some of the experiences of other members from the links you shared last week. Honestly this is the first time in my life that I have feared anything. I have ran 50k races and, hopefully will run some ultramarathons again, competed in many other athletic endeavors and have never felt fear or intimidation. But this transplant is a huge cliff and it has hit my fear of heights, so to speak.

Thank you again for the guidance.

Jeff, I’ve mentored many people through their transplants in the past 5 years, in Connect and locally. I also follow a number of organizations who are great sources of information, hope and inspiration for BMT/SCT patients and caregivers. So I’m aware of the stories others share of their successes.
Many of us are able to pretty much resume our normal lives after a year or so of recovery time, though it can be impacted by pre-existing co-morbidities. Granted, we’ll never be 100%. Our immune system, though new and functioning, will never be as robust as our factory installed model. But generally we can be healthy, active and resume much of our previous life activities. I know several people, a year or two after transplant, have participated in 100 Mile Bike trips, run full marathons and 1 guy jumped right back into his triathlon training. He did have to take a year off after realizing that you can’t rush recovery.
I was 65 at the time of my transplant. 3 weeks prior to being diagnosed with AML, I had still been walking 10 miles daily. I’m now 10 days away from my 71st birthday and still walking about 8 miles daily. I could do more, but a couple hours of my time is now spent on Connect. ☺️

The healthier we go into transplant the easier our recovery seems to be. I walked 4 miles daily around the bed tower in my hospital, while undergoing cancer treatments for AML. I was an inpatient for a week, every 28 days. Walked as much as I could with the transplant too. Though, honestly the first couple months are devoted to resting and gaining stamina.

Here are two of the links to which I was referring earlier. They’re both great informational sources:

National Bone Marrow Transplant Link https://www.nbmtlink.org/?fbclid=IwY2xjawHquylleHRuA2FlbQIxMAABHWxqcOwKbY4Hi4UykaRZDGJLl56FKNtNy8cEOLeWuehiVebmELb76LuMtg_aem_dvtr5gJs4Yqd7yoacNguBw

And: National Marrow Donor Program
https://www.nmdp.org/
I think as you prepare for your transplant, getting all your ducks in a row and start the pre-testing, you’ll find you just go with the flow. You’ll learn to trust your transplant team as they become your new family for a while. This isn’t their first rodeo and they will do everything in their power to keep you comfortable and safe through the journey. You’ll learn a new vocabulary, you’ll gain an appreciation for the science and technology making this possible, you’ll gain a new fascination for blood chemistry and how miraculous our immune systems are…and, you’ll get through this…coming out on the other side, feeling rather super human. ☺️
I’m here any time for questions or concerns.

Hi Jeff,
I just had a stem cell transplant in November 2023 so I am only about 65 days post transplant. I was 60 when diagnosed with chronic eosinophilic leukemia (CEL) in 2023, a very rare leukemia ;so there were no actual statistics on CEL survival. The 5 year prognosis (their guesstimate looking at similar leukemias as mine) after transplant is about 50% so I definitely had a hard time deciding to move forward. But I'm glad I did because there is no long term treatment or cure for CEL so transplant was my only long term option. I will tell you that once I was very nervous before transplant but once admitted for transplant I felt more confident and with almost not stress - it kind of melted away once admitted (that was an unexpected but welcome feeling). Part of that is because you do feel like the transplant doctors and nurses have this down. They monitor you closely and give you medicines to prevent or treat nausea, diarrhea etc. As far as recovery after transplant, I am one of the lucky ones who actually have very few symptoms post transplant. The first 30 days were tough but my nausea was gone by about day 40, my central line out by day 50. My doctors did say this is not the norm and I had been warned of all the side effects that can last months but other than fatigue I have been lucky and am doing well. Just so you know, I have typically been the worst case scenarios in my other health issues so I was very pleasantly surprised post transplant. However, even if you do have bad side effects from transplant the doctors have many medicines and suggestions so you will feel supported. It is a scary thing but it's not like any of us really have a choice as it is the best option for a cure and longer life. I wish you all the best in your transplant journey. And I will say that I have found this site and the people on it to be very supportive and helpful. All my best to you, Debbie

I am with deb913. I am on two meds that are two prevent a various amount of illness. So far those and my GVHD research study may have given my brand-new immune system a fighting chance to take hold. Read Lori's posts for the sheer delight in how to writes about the body's acceptance of the new cells. The fits and starts as we get our transplant. The day to day recording with a chart on the wall in my room listing my meds and my blood numbers.
The only thing i was every asked to do was rinse my mouth five or 6 times per day with medicated wash. Cart my "sister" med apparatus that i learned to sleep hooked to, bath with and walk with. What I knew was, that once I got released, I was free.
Check with your nurse/doctor about ice during the melphalan or other final chemo before transplant. I was given pop cycles and a big cup of ice and told to keep my mouth frozen during the transfusion. This was proven to prevent mouth sores. Lori talked about minions as the new cells entering my body taking up their new home. IO watched minions on TV for 1 hour, till the infusion was over. Never was my mouth so cold for so long. No mouth sores occurred.
One more thing to say that happened to me but did not have too. You MUST complete a 24-hour urine test before the conditioning begins. Drink 100 ounces plus of water or more. I did not. Working and thinking the collection jug was in our work fridge and the restroom in our main office, i seldom went. I had so little water, that they could not evaluate my urine as needed. The result??? I had to have a catheter inserted in the hospital at transplant time. One new nurse and another trying. I finally said no, get the heard NP. 5 minutes later it was in. Ultimately, I needed to drink more water and i did not.
There are many tips and tricks on this site. Lori gave me a list as she does 280 plus days ago before my transplant process started. Literally all that transpired at COH in Duarte Ca was the same as done as at Mayo Clinic.