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

Posted by Lori, Volunteer Mentor @loribmt, Feb 14, 2021

The past two years have been a storied journey of facing Acute Myeloid Leukemia and a subsequent bone marrow transplant. Being in a high risk category for relapse for AML, a transplant was necessary. Simply put, it would provide a completely new immune system to fend off any remaining AML cells lurking about in my body, after my original factory installed version had become defective in recognizing them. My husband and I shared a collective sigh of relief with the news that my latest bone marrow biopsy, at 19 months post transplant, showed no AML or the mutation which caused it. My new immune system is working!
While celebrating the results with my husband and a pizza, it occurred to me how far I’ve come and how life has changed in the past two years since the onset of AML and the transplant. There have been some challenging transitions but none insurmountable. Of course, life as a genetically modified organism, with two sets of DNA and a new blood type, can have its turf wars with a few GvHD issues, adaptations to medications and such. But I’m incredibly happy to have a second chance with this generous gift of life from an anonymous donor, and through the medical expertise of my amazing BMT-team at Mayo-Rochester. Hopefully I can meet my donor someday to thank him in person. I did send him a card right after the transplant giving him my “undying” gratitude!
We’ve all been given a gift of life. I’d love to hear your story. Lori

What diagnosis brought you to a BMT?

How has it impacted your life and that of your caregiver?

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

majid12 | @majid12 | Jan 20 12:35pm

I'm chatting from Indonesian

majid12 | @majid12 | Jan 20 12:35pm

In reply to @colleenyoung "Hi @dwolden, I'd like to add my welcome. How are you doing with getting things organized?..." + (show)

I need a grow were I can share with the hospital were my wife is receiving her treatment, we have been looking for morrow spinal cord but we haven't seen for the past 2 years now

callie28 | @callie28 | Jan 20 7:20am

In reply to @dwolden "Thank you for your reply. May his remission last. If you don’t mind my asking, was..." + (show)

It was an auto

dwolden | @dwolden | Jan 19 10:15am

In reply to @callie28 "I am the caregiver for my husband who has MM and we live near Duluth. He..." + (show)

Thank you for your reply. May his remission last.
If you don’t mind my asking, was it an auto it allo transplant?

callie28 | @callie28 | Jan 19 9:02am

In reply to @dwolden "Thank you for this post. It is very helpful to me. My husband was diagnosed with..." + (show)

I am the caregiver for my husband who has MM and we live near Duluth. He had BMT November of 22. Some ups and downs but MM stable

dwolden | @dwolden | Jan 18 6:21am

In reply to @loribmt "It’s not unusual to have those big drops in blood counts when in treatment. Particularly scary..." + (show)

Thank you that is so helpful to know.

Lori, Volunteer Mentor | @loribmt | Jan 17 1:13pm

In reply to @dwolden "Thank you for asking. He is getting vidaza , five days in then three weeks off...." + (show)

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. 😉

dwolden | @dwolden | Jan 17 11:58am

In reply to @loribmt "Good morning, @dwolden A fellow Wisconsinite! Bet you’re freezing your tootsies off this morning! It’s nippy..." + (show)

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.

Lori, Volunteer Mentor | @loribmt | Jan 17 8:46am

In reply to @dwolden "And no firm target date. The transplant specialist we met with at Mayo wanted him to..." + (show)

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?

dwolden | @dwolden | Jan 17 6:24am

In reply to @loribmt "Welcome to Connect @dwolden. Your husband is in the best hands with the BMT team at..." + (show)

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.

View More View Less

Please sign in or register to post a reply.