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

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

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.

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.

Welcome to Connect @dwolden. Your husband is in the best hands with the BMT team at Mayo! While it’s not an easy process for either of you, this bone marrow transplant will give your husband a second chance with life!

As you can see there are several of us in this group so please don’t hesitate to ask any questions, large or small!
My husband and I live a little more than 4 hours from Rochester from our home in Wisconsin. The prospect of moving to Rochester for 4 months was a little daunting at first but it became our home away from home. I’m coming up on my 5th rebirthday the end of June and we are still so very connected to Mayo. I was told ‘we’re married for life’ by my team…and they meant it!

If you haven’t seen this list already here is a really comprehensive guide to transplant. Your husband will be having an allogenic transplant so skip past the ‘auto’ section.
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#ch-tab-navigation
Does he have a donor already and a target date for transplant?

Welcome to Connect @dwolden. Your husband is in the best hands with the BMT team at Mayo! While it’s not an easy process for either of you, this bone marrow transplant will give your husband a second chance with life!

As you can see there are several of us in this group so please don’t hesitate to ask any questions, large or small!
My husband and I live a little more than 4 hours from Rochester from our home in Wisconsin. The prospect of moving to Rochester for 4 months was a little daunting at first but it became our home away from home. I’m coming up on my 5th rebirthday the end of June and we are still so very connected to Mayo. I was told ‘we’re married for life’ by my team…and they meant it!

If you haven’t seen this list already here is a really comprehensive guide to transplant. Your husband will be having an allogenic transplant so skip past the ‘auto’ section.
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#ch-tab-navigation
Does he have a donor already and a target date for transplant?

And no firm target date. The transplant specialist we met with at Mayo wanted him to complete two more cycles of chemo here in Duluth and then have another bone marrow biopsy. She wanted to see a deep remission so that’s what we are hoping for. I’m not sure what happens if he doesn’t get that.

Good morning, @dwolden A fellow Wisconsinite! Bet you’re freezing your tootsies off this morning! It’s nippy out there!
Tell your husband I’m wishing him all the best with his next two rounds of chemo. I know from my experience it’s probably not on his list of fun things to do, but it’s important for his new life ahead. The cleaner we go into transplant the better. Tell him to hang in there…it’s worth the effort!

Again, don’t hesitate if you have any questions! I know this can be daunting to think about relocating for several months but my husband and I look back on the experience with fond memories…challenging times, but fond memories. ☺️

What chemo is your husband taking? Is he an inpatient for the infusions?

Thank you for asking. He is getting vidaza , five days in then three weeks off. He started in Dec. His platelets have dropped to nearly zero (today they were at 3). They are transfusing platelets every time they check blood now.
He is an outpatient. We did spend three days in hospital in Dec a week after first treatment with neutropenic fever.
We are beginning to look for housing in Rochester. That is hard with no firm dates.

It’s not unusual to have those big drops in blood counts when in treatment. Particularly scary with those low platelet numbers…no knife juggling for a while! He’s pretty vulnerable to infections too at this point. You’ve already discovered that with his neutropenic fever. I went through that too. Sometimes that just happens with no obvious underlying cause. So extra precautions are needed to avoid exposure to viral, bacterial or fungal infections. I know it’s really disruptive but it’s keeping him safe and on track for a transplant.

The great thing about Rochester is that so much in that city is centered around the Clinic. There’s a lot of housing opportunities and most can be had within a couple week’s notice. So don’t fret about not knowing the dates yet. Generally you have a good month from the time a donor is found to when you have a firm date for transplant. This will all come together. 😉

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.