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.

Lori, Volunteer Mentor | @loribmt | Jul 26 9:08am

In reply to @dawnmarieyoung "I’m facing a bone marrow transplant due to myelofibrosis. I have been taking Jakavi for high..." + (show)

Hi Dawn. Welcome to Connect. You’ve popped into a great conversation with those of us who have gone through the bone marrow transplantation (BMT/SCT) for various blood cancers and conditions. For many of us it is the only potential cure for our diseases.

I had my transplant 6 years ago for AML (acute myeloid leukemia) at 65. I’m in full remission, 71, considered cured, healthy and expected to have a normal life span. At the same time I had my transplant, I met another woman at Mayo who was also having hers for Myelofibrosis (MF).
We became fast friends and still text each other pretty frequently. Her MF had progressed to the point where treatments were no longer effective. She was offered the BMT and didn’t look back. She too, is now in her 70s, fully active, energetic and fully enjoying her 2nd chance at life…cured.
It’s great your brother is a perfect match! So that’s one little box you can check off. I’ll be upfront and let you know that this BMT process isn’t easy. There will be a couple of weeks, initially, where you may feel fairly fatigued, possibly nauseated and wanting to nap most of the time. But that time passes quickly. Your transplant team will do their utmost to keep you comfortable and well cared for.

The stem cells are given just like a blood transfusion via a port, taking usually less than 30 minutes. Pretty anticlimactic after all the buildup. ☺️ (There’s no actual surgery involved except for a port installation.) It can take about 2 or more weeks for the newly infused cells to engraft into the bone marrow. When that happens and they start churning out new blood cells, you should notice a slow, but steady return of energy and stamina. Recovery takes time but when you consider the alternative of treatments no longer working, it’s worth the effort.
Each transplant center may have their own protocol for how the BMT is done. Mayo-Rochester, I was an outpatient where I had the transplant in the hospital but convalesced off site, near the clinic. There are other hospitals that require a 6 week stay and then recover nearby in a hotel or transition facility. Do you know what your clinic will expect? Do you have a full time caregiver on board?

dawnmarieyoung | @dawnmarieyoung | Jul 25 1:18pm

I’m facing a bone marrow transplant due to myelofibrosis. I have been taking Jakavi for high counts and splenomegaly for 8 years but now I have extremely low white count. ( neutrophils are 0.2)
I can’t stop the Jakavi and there is no treatment to increase my white count. The only option offered is a BMT.
I do not have leukemia.
My brother is an identical stem cell match!
I have had a liver transplant due to complications of myelofibrosis 10 years ago.
I have no other conditions that would complicate the procedure but of course I’m concerned. Has anyone else had a bone marrow transplant for myelofibrosis and what has your experience been. Has anyone achieved a cure with BMT?!

dlrn64 | @dlrn64 | Jul 21 8:53am

In reply to @loribmt "Hi @dlrn64 Let me officially welcome you to Connect and the BMT group. We have quite..." + (show)

I have rented an Air B&B for my caregiver and me (once I’m released from Mayo). It’s about 20 min drive so pretty close by. My insurance covers $5000 in lodging so that will cover most of it. My caseworker at Mayo has gotten me several grants covering some costs that my insurance doesn’t cover. So far so good.

katgob | @katgob | Jul 20 11:59pm

In reply to @loribmt "Preconditioning can be individualized for each patient’s situation. So your doctor will take into consideration the..." + (show)

I had 5 days of fludarabine and one of melphalan. I did have another day of Cytoxan. It could have been added for the research study.

katgob | @katgob | Jul 20 9:19pm

Thank you, Lori.
You have spelled it out again.
Alive and GVHD happening is crazy. Thank you for posting too!!!!
I must say I told my body as i was out walking that you will not have GVHD!! No skin, tummy, or any funky things. Keep walking and lifting weights, drink half my body weight in water. Eat the food that has no additives or is processed.
I will put your questions in the portal, so they can answer them tomorrow or wait till August. I had forgotten my laptop at work yesterday, so i went back to get it today, as. I need to join a meeting tonight so i needed it. I also wanted to finish this post. I had thought i needed one more BMB but it seems not!!! My blood is still not O, so I want the blood test down the road that will check it.
My sister text me about a friend she has who had breast cancer 15 years ago and now has stage 3 ovarian cancer. Not treated at a cancer research hospital. She will get carboplatin/Taxol and Herceptin. I told my sister i got those which are for targeting ovarian cancer as i had brca2 and a her2 tumor.
I also received Perjeta with the Herceptin. For a year twice a day i got Lynparza which is often used for metastatic Ovarian cancer patients. Drugs and treatments have come a long way. She finally told me after all chemo she is on Avastin. Until she finds something better. Really? Google does not make us a DR. It has a good pathway to help any cells possibly left from growing. I suggested she see if she has any side effects.

Thank you for the link to the patient support center. I like to read up and get info from you and the others with experience so i might ask my team. My NP of course. She gets me my answers.

Lori, Volunteer Mentor | @loribmt | Jul 20 9:06pm

In reply to @davi0937 "Question on changes on the prep before the BMT - the physician I spoke with Friday..." + (show)

Preconditioning can be individualized for each patient’s situation. So your doctor will take into consideration the type and stage of your cancer, how you’ve responded to other treatments, any co-morbidities, your overall health…all those things will influence the intensity and type of the preconditioning. If you can get by with a lower intensity preconditioning, that would be awesome!

In my case I had high risk AML which required 5 days of fludarabine/2days melphalan. Not high on my list of fun things to do. 😄 Another friend with a similar diagnosis as mine had fewer days of chemo but 2 sessions of full body radiation, concerned that her cancer may have crossed the blood/brain barrier. So our doctors made the call according to our needs.

I think I read yesterday that this may be a couple of years out for you?

davi0937 | @davi0937 | Jul 20 7:18pm

Question on changes on the prep before the BMT - the physician I spoke with Friday said the prep is only chemo 3 - pills. Is that others recent experience as well? Everything I read including radiation as well but it sounds like not anymore. Thank you

Lori, Volunteer Mentor | @loribmt | Jul 20 9:39am

In reply to @dlrn64 "I’ll be having a BMT tentatively scheduled on Aug 28th for Mast Cell Leukemia that I..." + (show)

Hi @dlrn64 Let me officially welcome you to Connect and the BMT group. We have quite a growing collection of us who have gone the stem cell transplantation to get us on the other side of a cancer journey.

Several have been patients at Mayo-Jacksonville for their BMT’s so I’d like to introduce you to @kidd51 @clock456 @caregiverx2 @avaleir, among others who can give you some inside info for that campus.

We’re all here for you if you have any questions or concerns. Are you all set for lodging? Caregiver? Donor?

dlrn64 | @dlrn64 | Jul 20 8:57am

I’ll be having a BMT tentatively scheduled on Aug 28th for Mast Cell Leukemia that I was diagnosed with on late January. This will be at the Jacksonville Mayo. I have watched YouTube videos and read others journeys with BMT so I have a better idea of what to expect so I can better prepare for what I can expect when I’m there. It won’t be easy, but I’m hopeful that this will be a long term answer to this cancer. I’ll post more as I actually am going through it. Thanks!

Lori, Volunteer Mentor | @loribmt | Jul 19 10:24am

In reply to @katgob "Today I speak about survivorship at 1 year past transplant. I am officially 464 days past..." + (show)

@katgob

Today I speak about survivorship at 1 year past transplant. I am officially 464 days past transplant. My sister has told me at the same hospital in oncology that her Dr. is wishy washy. Further treatment post chemo is to make money. My hematologist? He is a man of few words. I was assigned to him in Sept 2023. I did not pick him. He walked me through the original BMB and the findings. Initiated getting me on the "Be a Match" registry until my perfect match was found. Set me up through treatments through the transplant coordinator. His NP was my contact. Having my oncologists and team through breast cancer, I had no idea on "Floor 6", the COH transplant floor that my hematologist would NEVER check on me. There is a rotating Dr team on that floor that I must say was top notch. Four to five arrived each morning. The head Dr i had well over 2 weeks is one i remembered. My Dr. later said he reviewed how i was doing from his office.
So, from day 30 after transplant, I went twice a week for 100 days to less days. I just moved after 1 year to monthly. Now soon to change.
My Dr does not do tele visits. I have had 2 scheduled, but he called me for both. They were about survivorship. Yesterday i was logging in for the visit and saw he called! I called him back and he was surprised i had not heard the phone. I thought we would have a tele-visit. Oh well. He is hard to understand on the phone. Once i received the report after, I too realized what my sister had said. This scientist Dr used as few words as possible to review my final survivorship list. Check- I could hear him say to himself. I am done with this patient.
His disposition: Patient will return to survivorship clinic annually. Call clinic or seek medical attention if necessary.
I have no GVHD or other side effects.
At Bunco last night a woman was subbing whose husband died less than 2years ago from MDS moving to leukemia. She told me last night he was also a platelet/blood donor at the Red Cross. It happened so fast, and he ask her if possibly he got MDS from the blood product donations? She told him she said likely no. What she said to me is that i looked healthy. I thought it was my weight, but she said it was my whole being. Her husband never got back to that.
So, now i want to have a list to take to my next visit Aug 11th. Are these visits every 6 weeks continuing? Survivorship only moving to annual? As i told my sister, the NPS are our links. His report on the "tele-visit" or phone call followed a list. His answer to those questions were either update/or follow up. I am throwing some questions in the portal before Aug 11th. He basically said i am doing great and need to get out and enjoy life every day.
Does Mayo Clinic use a survivorship plan mapped out into the future for MDS or AML patients?

Jump to this post

Hi Kat, @alive nailed the assessment of your doctor…the great, the powerful Oz, but always behind the curtain. Feels a bit deflating to sense that there was no personal interest in your case other than a checklist he had to complete. However, ‘he did his job’ providing you with a successful BMT, which is the ultimate goal, I guess. But when you’re going through something as taxing as the transplant you’d sure like to feel that there’s some personal connection with your team. Thankfully you really had some great NPs through your journey with COH.

Questions you might want to add to your list: Will I be seeing a doctor for my annual follow-up appointments? How long will I continue my annual followup appts?
If I have questions over the years, may I still contact my BMT team?
Personally, I value all of my interactions with NPs and PAs but when I come for a follow-up, I really want to see my doctor.

Just to touch on a couple of items. You mentioned not seeing your transplant doctor during the ‘event’.
When I had my transplant at Mayo, initially pre-transplant, I had several appointments with my doctor and various members of his team. But he did tell me that for the actual transplant process I would not see him for about 6 weeks. I’d be under the care of the transplant team in the hospital. My face must have shown a sense of disappointment because he quickly reassured me that he would be monitoring me daily, guiding the team from behind the scenes. If there were any changes in meds, labs or conditions, he’d see them and would be directing my care. Everything was run past him. He did drop by my room the night of my transplant for a quick visit, which was huge for moral support.

True to what he said, about 6 weeks later I was transferred back to his direct care and would see him or a NP daily, then 2x weekly, until my release 100+ days later. Each clinic/hospital will have their own protocol to follow. From my experience at Mayo and from other Mayo-BMT patients I’ve spoken with, there’s quite a lot of direct interaction between clinicians and their patients. Some NP/PA involvement but most of us have seen our doctors frequently.

The Survivorship guide: I don’t remember seeing anything formal? Each followup appt is the same. I meet with a nurse coordinator (NC) and then my doctor. There is a list of questions the NC goes over with me to check for health issues (emotional, mental or physical) gvhd, and if I need any prescriptions, etc. After that, then I see my doctor for a visit. He lets me know if there are pending items I need to followup with such as vaccinations, that type of thing. All those notes are recorded for me to review later. The rest is just catching up with personal stuff. At this point, I’m cured of AML, the BMT is successful and I’m expected to have a normal life span. I no longer will be having chimerism tests. But I will still have annual visits until I physically can’t get to Mayo. 😁

A really useful site that I should reference more often is the National Marrow Donor Program. I actually started a discussion about them a few years ago and should do more followup with that discussion. It’s such a huge support center for BMT patients! But for now here is a link to their survivorship support center:
https://www.nmdp.org/patients/transplant-support/patient-support-center/living-now/survivorship-care-plans-for-transplant-recipients
It can take a while to shift from patient to survivor to thriver and overcomer. It’s a process! Quite frankly if I wasn’t on Connect every day mentoring members with blood cancers or the BMT adventures, I probably wouldn’t think about what I’ve gone through much at all anymore. For some it’s more difficult than others if there is a daily reminder such as gvhd. Newer protocol are helping to avoid the worst of those side effects now. You’ve seen that in your own journey.

In the end the comment your doctor made about “Getting out and enjoying life” is the ultimate guide to survival post transplant.

View More View Less

Please sign in or register to post a reply.