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 Blood Cancers & Disorders Support Group.

tomibaba | @tomibaba | Oct 15 3:13pm

I have been diagnosed with Multiple Myeloma (MM) since 2019 did Stem Cell Transplant ((SCT)
3 years after I got a relapse in June 2023.
I was recommended immediate treatment with Daratumumab, Velcade, Dexamethasone (DVD).

Daratumumab is extremely expensive as I am an African with no medical insurance. And no insurance company will take me on now.
Back to Lagos, Nigeria I am doing it for half the price which is still extremely expensive. But it’s far better than SCT.
I was informed MM is not curable but treatable.
1. Is bone marrow treatment available in the USA or anywhere in the world now as I will always prefer total cure.
2. Is Daratumumab made for the rich while the poor are allowed to die?
3. Is there any other treatment better than what I am taking now?
4. Is there medicine trials available for me to join?

kt2013 | @kt2013 | Oct 15 8:04am

In reply to @tjakusz "this is SO helpful! Thank you so much! Yes, I would love to read on tips..." + (show)

Good morning! And welcome to the Mayo Clinic. I had my transplant for AML 10 years ago. I know some things have changed and the process has been updated. I was a “guest” of Mayo for 27 glorious days in 2013 during my conditioning chemotherapy. I was running for the door after being in the hospital for almost a month. And I hit the road running after my transplant, recovering at home because Rochester is my also my hometown. Mayo is a wonderful place, filled with caring and compassionate caregivers who live the mission of “the needs of the patient come first”.
I hope your experience will reflect that statement every day. I will be keeping you in my thoughts and prayers. Sending you a snapshot of MN autumn.

Lori, Volunteer Mentor | @loribmt | Oct 13 9:21am

In reply to @leilab1 "I'm relieved to say that our son Alex is now back home with us. Blood counts..." + (show)

Hi @leilab1. Just checking in on Alex…and you! I’m expecting now that he’s home you’re seeing a marked improvement in his overall health. He’s moving past the critical stages of recovery. Hopefully his depression is easing a bit too.

Some of the depression signs early in transplant can be confused with the malaise that comes from not feeling well. As he recovers, Alex may start perking up simply by getting better nutrition, exercise and being in a normal environment.

Your son has endured a huge life altering ordeal. With that comes some mental, emotional and physical changes and he may go through a mourning period for what he’s lost. Everything has changed for him. @alive had a good suggestion about getting a referral to a therapist. My team was always asking if I wanted to see someone. I didn’t feel as though I needed it. But even now, 4 years later, I probably did myself a great disservice by not taking them up on the offer. I occasionally have moments of PTSD and reliving a few of the seamier moments of my odyssey. So your son may benefit from having a few sessions.

Is he getting outside and walking around more?

Lori, Volunteer Mentor | @loribmt | Oct 13 9:08am

In reply to @recipientofgrace "It's a type of leukodystrophy that impacts the microglia. The transplant gives fresh stem cells to..." + (show)

Good morning, Grace. I will be pouring all my positive thoughts your way for a resolution to this holdout with your insurance company. If a stem cell transplant could help reverse this condition for you I can’t understand their denial, especially since it’s been approved for other people with the same diagnosis at the same institutions. You deserve the chance to move past this!

Please keep me updated with what happens, ok? There are several of us in the forum who have had bone marrow transplants and we’re here for you. Hugs!

Please keep me updated with your progress.

tjakusz | @tjakusz | Oct 12 1:04pm

In reply to @jimbond48 "Since diagnosed 30 years ago, I’ve had 2 autos and 2 allos at Seidman Cancer Center..." + (show)

4 transplants????? Wow, you are amazing! God Bless! Hope you are all good now!

Lori, Volunteer Mentor | @loribmt | Oct 12 10:01am

In reply to @tjakusz "this is SO helpful! Thank you so much! Yes, I would love to read on tips..." + (show)

Hi @tjakusz You’re right, this is a journey like no other. It’s arduous and there will be days you feel pretty nasty. But it’s all doable! You come out on the other side of this feeling pretty invincible. Keeping a positive attitude is so helpful as well as really listening to your BMT team! They are your new family and they are deeply dedicated to you. I’ve been told repeated at Mayo that ‘we’re married for life’ and they mean it. I’m still having regular followups at the clinic and also through blood work at my home clinic. It’s very comforting to know you’re not left to founder after a few years.
Rochester is my home away from home. My husband and I still enjoy our trips back to ‘the mother ship’. While I was going through all the excitement my husband kept busy daily with long walks along the trails there, exploring the various cultural sites and really felt like this was a unique experience for both of us. He and I both got all the backing we needed from our team.

You’ll also be having a number of pre transplant classes along with testing. It will seem daunting but you’ll get through this…one day at a time.

Here are a couple of links to conversations about prepping for transplants and after care.

The first was in a list I compiled for transplantation while I was at Mayo-Rochester for 4 months. Other members have added their ‘necessities’ to the lists in subsequent conversations.
https://connect.mayoclinic.org/comment/703859/
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
This is a really comprehensive aftercare guide from Memorial Sloan Kettering. I had a very similar list from Mayo but this was already online so it’s my go-to guideline.
You’ll no doubt have your own educational classes and information for life going forward.
https://www.mskcc.org/pdf/cancer-care/patient-education/leaving-hospital-after-your-allogeneic-transplant
There are other friends here in the forum who have also had allogenic stem cell transplants a few of these are: @alive, who just celebrated her 7th rebirthday, @kt2013 who had her transplant 10 years ago, I’m at 4 years and @edb1123 who is coming up on her 3rd anniversary.
Don’t hesitate to ask us questions. We’re here to offer support and to help you (your caregiver) navigate this journey. It helps to talk with others who have walked the walk.

tjakusz | @tjakusz | Oct 12 9:29am

In reply to @loribmt "Hi @tjakusz Welcome to Connect! You came to the right place for information and, for your..." + (show)

@loribmt

Hi @tjakusz Welcome to Connect! You came to the right place for information and, for your BMT. I had my BMT at Mayo-Rochester and can’t imagine a better place for treatment. I’m 4 yrs 3 mo post transplant and feeling amazing. In fact, I just got back from a followup appointment and everything is stellar.

I’m not familiar with any other places besides Mayo who do BMT as outpatient. But from hearing other stories and compare them with my own, the model Mayo has set up is excellent. Having limited time in a hospital allows for patients to recover faster in a ‘home’ environment. Your exposure to infections is less, you can get up to scrounge for food in your own refrigerator, you walk more, have privacy, etc..
You will still report to the clinic daily for blood work. Just because you’re out patient doesn’t mean you’re left on your own. You will need a caregiver with you 24/7. If there is the slightest issue you will be re-admitted to the hospital. There’s no question about how seriously they take your condition!

My husband and I set up housekeeping at the Marriott Residence in. We got a 2 bedroom, 2 bath suite so I had my own room. It’s connected via the Subway system (underground walkway) to the clinic. It was an easy walk or wheel chair ride to the clinic daily. (You can use the wheelchairs from Mayo to take back to your hotel)

I have lists of things to consider for what to bring for the 3-4 months you’ll be living away from home, precautions for staying healthy, etc.. I’ll find those posts and link you to them.

I know @edb1123 also had her transplant at Mayo Rochester so she may have things to add as well. I think we’ve both posted earlier in this discussion so if you’re interested in doing some reading a lot of the information is there.

Am I right in that you’re going to Rochester or are you at another campus?
Do you have any specific questions?

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this is SO helpful! Thank you so much! Yes, I would love to read on tips and suggestions. This is quite the journey, so any helpful tips would be most welcome! Thank you so much!

Lori, Volunteer Mentor | @loribmt | Oct 12 8:24am

In reply to @tjakusz "Hello, I am new to Mayo and transferred from City of Hope (long story). I am..." + (show)

I have lists of things to consider for what to bring for the 3-4 months you’ll be living away from home, precautions for staying healthy, etc.. I’ll find those posts and link you to them.

Am I right in that you’re going to Rochester or are you at another campus?
Do you have any specific questions?

tjakusz | @tjakusz | Oct 12 7:42am

Hello, I am new to Mayo and transferred from City of Hope (long story). I am preparing for BMT due to MDS that had progressed to AML, but AML is in remission after Azacitadine and Veneclexta. Was wondering how those who have had the whole transplant process here outpatient handled it. Everywhere else the first 30 days are inpatient. I believe Mayo is the only one to do it outpatient. I know you need to be within 15 min of hospital and come every day but still concerned how it went. Anybody have experience they can share please? Thanks so much!!

grace | @recipientofgrace | Oct 11 5:50pm

It's a type of leukodystrophy that impacts the microglia. The transplant gives fresh stem cells to take on the roll of my dying support cells in the brain. Nerve damage occurs from the microglia not functioning well and dying off. Mayo had a news story a few years back on someone who did very well after a transplant for the condition.

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