My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Thank you for this post. It is very helpful to me. My husband was diagnosed with MDS in a high risk category for developing AML. We have been referred to Mayo and are just starting the transplant process. We live near Duluth so it is about four hours to Rochester. He is receiving chemo in Duluth with vidaza to improve his blood counts before transplant. I am his caregiver. I’ve been working to stay positive and get organized. Hearing about all you have been through and your positive outcome really helped.

Hi, Lori:

My story began one year ago on Jan. 25th, a year to the day after my husband’s diagnosis of a malignant tumor in his sinus cavity. In December, 2019, I decided to retire early at age 60 because of his diagnosis, wanting to spend more time with him (although he was cancer-free by then). We planned to spend the month of February, 2020 in the Palm Springs area. However, I was experiencing shortness of breath after going up stairs and very fatigued, which was very unusual for me. I went to Urgent Care just 4 days before we were scheduled to leave for Palm Springs. After several tests, I was told I had Acute Myeloid Leukemia, and that I needed to be admitted to the hospital for “about a month”! Of course we were both shocked and felt like it was a cruel joke -one year after my husband’s diagnosis? We knew nothing about this disease, but we quickly learned that chemo would be needed to get me into remission before a bone marrow transplant could be done. We were also told that we would have to relocate to Rochester for 100 days so we would be close to the Mayo Clinic.

Unfortunately, the first induction chemo (7+3) only killed off about 50% of the disease, so I had to have another chemo regimen (MEC). That treatment got me down to about 15%, but not low enough for the transplant, so they put me on Venetoclax (Venclexta) and shots of Vidaza (Azacitidine). These two drugs got me down to less than 1%, low enough for the transplant.

My BMT was scheduled for mid-June in Rochester, so we rented a condo there for 3 months and went down on June 1st for testing. Unfortunately, the cytogenetic test results showed two abnormal chromosomes, so the BMT doctor decided to postpone the transplant and put me back on the “two V’s” to kill them off. We moved back home to the Twin Cities for a month and then moved back to Rochester for the transplant on July 22nd. It was really disappointing to postpone the transplant because we had mentally and emotionally prepared ourselves for the move and the 100-day stay, only to go home for a month and then pack up all over again!

The transplant itself was very anticlimactic - done in less than an hour, just like a blood transfusion. Afterwards, however, I had issues such as mouth sores, lack of appetite, weakness, light-headedness, diarrhea, rash, and nausea/vomiting. This lasted for about a month and then got better. Some of this was related to meds, some to GVHD. During this time, I was going into the clinic every day (and was hospitalized for 12 days due to a fever), but eventually was going twice/week.

My recovery was going so well after a couple months that the doctor let us move home about 3 weeks early. I was walking up to 2 miles a day, eating and sleeping well, and not having many side effects. However, we had to isolate ourselves from friends and family due to COVID. I was very lucky to have a retired husband as my caregiver who could pick up and move at any time, and drive me to the daily, biweekly, and bimonthly. We are lucky to live 1-1/2 hours from Rochester, so we can usually drive down and back for tests and checkups in one day.

Unfortunately, I developed pneumonia and acute respiratory failure in late November and was hospitalized for 17 days, part of the time in ICU. After being released from the hospital, I was very weak from being in bed all that time, so I had to rebuild my strength and gain back some weight. I now feel like I’m back to 100% but it has taken almost two months. Of course, I would like to do more and see more people because I’m feeling good now, but COVID is preventing that.

Needless to say, it has been a very long, stressful journey since my diagnosed a year ago, but I am thankful and lucky to have a devoted caregiver and a large support system of family and friends who have helped us throughout. My only advice for others going through this is to focus on one day at a time. There will be twists and turns, but that is out of your control, so just take things as they come.

Thanks!
edb1123

Yes we finally got the ok to come back in a month for the first time except he still has his Hickman so go weekly for that dressing change. They couldn’t think of a reason to make him continue to come weekly unless he feels something is off. 👏🏻👏🏻

Hi @jrwilli1…it’s been one heck of a year for you and your husband. Phew, huh? Within the first year after a SCT it’s not unusual to have that new immune system test your stamina and toss in a couple surprises just so you don’t get too complacent. 😅. I’m happy to hear he’s doing much better with the recovery now. I know he had some pretty rough moments in the beginning and still has some health issues he’s working through. But it sounds like he’s turned the corner for the better now!

It’s a good sign, or at least it was in my experience, that his ALP number is trending down. It’s also encouraging to learn he’s going to his exercise classes and walking daily! Little bits of normalcy returning.

Wishing you and your husband a Happy, Healthy and “unremarkable” New Year! ☺️
( Unremarkable was always the key word I wanted to hear at my followup appts).

Hi, I have posted before about my husband. We found out last summer he had an issue with his blood work and was very tired. After a bone marrow biopsy at a local hospital that physician sent his results to Mayo since they just accepted them a partnership with them. Local hospital said non Hodgkin lymphoma but this dr didn’t feel it matched his symptoms so biopsy sent to Mayo and MDS-EB 2 with 19-% blasts so off to a local bone marrow specialist. And within 2-3 days he was getting chemo all as an outpatient. He did very well through that until he didn’t. He developed a fever and was very delirious with them and was hospitalized for two weeks and was told he wouldn’t be a candidate for a transplant. Well as I have said before and Lori has heard it he was a guy who worked out every day before all this. So off to PT and she worked wonders and so in Feb 2023 we got a transplant from a most gracious unknown 30 yr old male. I’m not saying it was easy as he also had graph vs host disease and a very bad bout of cdiff that again caused delirious temps. So today as I write this we had a very nice Christmas this year unlike last year. He does have some fungus in his lungs, low sodium levels, blood clot in his groin but platelets going up and alkaline phosphorus going down. But he is walking almost every day or going to his yes Parkinson’s exercise class twice a week. We have had a lot of prayers being answered and so grateful for the second chance. Just love our extended family members at the BMT clinic and hospital. Prayers for the rest of people going through this process. 🙏

HAPPY BIRTHDAY !!!!!

Lori,
I'm so happy to hear that you are doing well! I'm afraid I have no answers yet and test results may not be available until Tuesday Jan. 2nd. 🙁 Alex's Orthopedist told him there are two possible outcomes: either it's just infection or "something else" which would require surgery.
This leads me to think it could be a synovial cyst (?) Alex isn't presenting with any other symptoms: no headaches, rash, swelling. I mentioned the possibility of GVH and was told they think that's "highly unlikely". I'm really in the dark on this one.
Anita

Hi @leilab1 There must have been a ‘connection’ between us this morning! I woke up thinking I needed to check with to see how Alex is doing because it had been really quite a while since we’ve spoken. And, boop, here you are!

I’m so happy to hear he’s been doing really well considering all the uncertainty in his earlier days of the transplant. How is his appetite and activity level? Keeping in mind…as I was reminded so many times by my team…this is a marathon, not a race! But with Alex being young, it can be really frustrating not being fully active like he was prior to transplant. It gets better!! Tell him I’m going to be 70 in a few days and feel like I’m 24…seriously! It just takes time! ☺️

This event with his hip isn’t anything I’ve experienced. Has he been doing any extra exertion, exercises, etc., that may have caused inflammation there? Do his doctors feel this is in anyway related to gvhd?

Wishing you and your a family a very happy, Healthy and uneventful New Year!! Lori