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.

katgob | @katgob | Feb 10 12:54pm

dwolden,
For me, the 1 year will show in my BMB results if i am 100% his or my cells have snuck back in. Those tough German genes. One never knows.
Unless blood donations change, my new O blood will never be able to donate. A blood donor forty-three years ago to start, then a flip to platelets for 25. Then a recipient 6 total times for a mix of blood and/or platelets. I had tears in my eyes for every one of these donations and my donor cells. What an honor to get what i had freely given. I LOVE blood donors.

Lori, Volunteer Mentor | @loribmt | Feb 10 1:00pm

In reply to @dwolden "You mean 💯 donor isn’t forever?? 😞" + (show)

Dorothy, while rare, it can happen! However, your husband is getting a ‘boost’ of cells with the DLI, which should help give the a nudge to start ramping up the cell production! Don’t go looking for trouble…his team is on it! ☺️

Lori, Volunteer Mentor | @loribmt | Feb 10 1:36pm

In reply to @katgob "Slow posting. I need to check in and say on Monday i found my CMV levels..." + (show)

@katgob

Slow posting. I need to check in and say on Monday i found my CMV levels went back down. A sign my new immune system said to get out. I think so. My transplant was April 9th, 2024. My next BMB is in 2 months. I am hoping my feeling good will mean the results of the BMB are promising.
I thought about something on my walk today. In July of last year, I had finished my year of Lynparza and was excited for my follow-up visit with my oncologist's office. At the time, the fact my Medical Oncologist had moved to another hospital was only a could months past. and i was considered done with my BC treatments. My Nurse Practioner was my only holdover from my breast cancer journey. My breast surgeon first went to Cedars before my MO joined her in their new state of the art department at that hospital.
Well, my NP had told me in May she was pregnant and would be out for the allowed time. I was excited to see her at my appointment and hear about her baby's arrival and all. I had gotten a call from COH to change the appointment but i thought little about it. At the appointment I was now in a different wing in the women's center than i had been for 2 years. When the NP came in, she was not my regular or anyone i knew. As she talked with me. She told me my NP had decided to stay home with her baby. I felt sad right away. I left that appointment knowing the blood numbers in my blood test were worrisome to me. But, because neither the MO and NP knew my case or walked through any part with me, concern was not there. I was let down as i drove home and thought of my loss of my relationship with my NP. She was my champion that helped me through the 2 years. The MO led the way but worked with her NP. Alexandria would have looked at my blood numbers and recommended seeing a hematologist. I had pancytopenia in my BC treatment. I was a platelet donor for 25 years. I knew my blood numbers.
Today i thought what might have happened if i had not advocated for myself and got a referral to the hematology department. My blood readings slowly went down. My next appointment would have been 6 months in January for the new MO/NP. At what point would they have noted any blood number troubles and referred me?
I was reminded that if you have a spouse or are the caregiver for an MDS or other blood cancer patient, you are the support and love a patient will need through this journey. I had a group of friends who listened and encouraged me to keep speaking up. Let the medical team know what was going on. Having no real illnesses most of my life, I was uncomfortable being uncomfortable.
Today I am checking how i feel as i start my day as i have done nearly every day since my transplant. I hope all of you do too.

Jump to this post

Kat, I’ve had to limit my time on Connect this week. I meant to reply the other day so I’m sorry for the delay!
That’s fantastic news about the CMV! A testimony to the strength of your new immune system. Yay Team Kat!!
Reading through your story of losing your beloved NP…our medical teams when we go through something like your breast cancer or the bmt, they become our family members because we see them so often. A true connection with some of them for sure.
I’m so proud of you for following through with the drop in your numbers because it allowed you to get on top of things. We do have to be advocates for our own health!
Having the preemptive BMT was the best thing you could do for your long term health. I’m so happy you’re doing really well. Your posts are always such a positive validation for the decisions you made! As always, thank you for sharing. You make my day! 😍

millicentw | @millicentw | Feb 13 6:45pm

In reply to @colleenyoung "I'd like to invite @leukskywalker @jessica0 and @taybro4 into this discussion too. @lisal64 @loribmt @edb1123, what..." + (show)

Colleen, I would like to be part of this group discussion. I had my BMT in 2018. In remission since. Thanks

Lori, Volunteer Mentor | @loribmt | Feb 14 9:00am

In reply to @millicentw "Colleen, I would like to be part of this group discussion. I had my BMT in..." + (show)

Hi @millicentw! You are now part of this group so welcome to Connect and to the BMT club…such as it is. We have a growing number of members who have had a bone marrow/stem cell transplant for a variety of reasons. It’s a safe haven to discuss our transplant journeys, ask questions and offer support. We can be particularly helpful to newbies who are about to undergo the process.

Congratulations on your successful transplant. You’re one year ahead of me. I had mine in June 2019 and happy to say all is well! I’d love to have you share your story with us right here in this discussion where you’ve already posted!

There’s also another discussion that’s kind of fun. I started it a few years ago with a photo that wouldn’t be possible if not for having the transplant. Pop a pic in that discussion if you’re so inclined! ☺️

Snapshots of Hope: Life on the other side of transplant:
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
What illness brought you to needing a BMT?

katgob | @katgob | Feb 15 10:33am

Hi all!
I had my follow-up yesterday at our brand-new building at City of Hope Duarte. Easy to read listing of floor1-8 on the wall. I did not realize the blood/VAD was just to the left of the wall info. I got on the elevator. I thought we were on the lower level. Funny though, A COH person taking someone up to a floor said there are not blood services in this building. I said really? I have an appointment in the HOPE building today in blood/infusion services. I went back to floor one and found another worker who said to go right at the wall sign.
That department now has dozens and dozens or rooms and beds for blood services and infusions. In the past we traveled to many floors to get to a bed for our infusions. Sometimes the blood donation building right by this new building.
Not a very nice attitude of my blood draw nurse today. Not personable as many are. We were done
quick and i got outside to join a zoom meeting for a while.
Next, I was up on floor 4 for Hematology. I got in and was seen within 10 minutes. But, just before going in i got my numbers. My freaking creatinine number was 120!!! I have never been that high. I immediately thought Mepron. The Dr. is going to make me take that. My vitals for my heart rate were at 129 upon arrival in my wait room. I could feel my heart beating fast. Another nurse came in to take it again and it dropped to 118. She asked me if i had heart problems, Afib or anything. I do not know her and no i said nothing like that. I said i just had a high result on a blood number and it freaked me out. This is why my body was reacting. My NP Hannah came in soon. She said i was going to get hydration on Floor 8 once our visit was done. 120 was not high enough to switch meds. From then though we laughed and laughed. She asked me if i go hatless. She loves how i look with short hair. I told her i will but for now it is too cold. But at this point all my other numbers were good and my 1 yr BMB is April 7th. Crazy. As we wrapped up the Dr. poked his head in. There was so much noise in this room he thought something was wrong. Oh no DR i said, we were having some laughs.
Yikes! I told the NP that yes, at 64, i have never been told i am a quiet person. I have learned to speak softly, but on this day, I had found out that I DID NOT DRINK ENOUGH WATER. This cannot be blamed on anyone else.

To all, no matter the length of time you have been on this journey, check how much water you are drinking. Most people do not get regular blood tests for creatinine. For today i have them every now 3 weeks. I must not just drink for the next blood test, but to help my body through my life every day.

Colleen Young, Connect Director | @colleenyoung | Feb 23 5:08pm

In reply to @millicentw "Colleen, I would like to be part of this group discussion. I had my BMT in..." + (show)

Welcome to the group, @millicentw. I read in another discussion that you had a BMT for multiple myeloma. Congrats on being in remission for 7 years!

What tip would you offer someone who is about to have BMT for multiple myeloma? In other words, what do you wish you had known?

katgob | @katgob | Feb 28 12:12pm

Hi all,
I have been reading many posts and am grateful again for this forum. Last week I joined the City of Hope portal they just established for bone marrow patients, past and present. I will log in there a few times a week.
Here i know the community shares to learn and to get information. How else would i have watched the minions for one hour as i received the melphalan and needed frozen popsicles and ice in my mouth to prevent mouth sores. Keep my mind on something else. That is how Lori came into my floor 6 room to help me walk through a procedure. I did not end up with any mouth sores. Nothing.
My 1 -year BMB is in early April. On May 2nd, City of Hope has their annual Bone Marrow Transplant Reunion. This year i get to attend!!! March 7th another blood test to see if my CMV blood number is stable along with all the other counts.

I continue to drink my water, eat good food daily, some chocolate yes, and walk and walk. Sleep i get about 6-7 hours daily. I do feel rested. I went to my 6 month follow up for my breast cancer Doctor, and she said everything looks great. I am very tight in my left pectoral muscle though and if i want to see a PT she can schedule it. I told her i will work on it. I know that was my 1st side for surgery and i have had other stiff type effects i have worked through. I started stretches a neighbor suggested. I have checked u-tube too.
Thank you all for sharing your journey and all it entails.

Lori, Volunteer Mentor | @loribmt | Feb 28 4:11pm

In reply to @katgob "Hi all, I have been reading many posts and am grateful again for this forum. Last..." + (show)

Hey Kat!! You’ll be a great asset to the COH community with your positive experience with your transplant. It’s all about paying it forward…! Just think, last year at this time you were still trying to get things wrangled into place to be able to go forward with the transplant and now you’re in the position to be a lifeline for others. I feel like a proud momma bear. 😅 You were a rock star from the beginning.

Curious to see if you’ve ever considered a seeing a massage therapist with your stiff pec muscles. I felt the final piece in my healing post chemo for AML and the transplant was a visit to my massage therapist. I’d had a froze shoulder that miraculously disappeared along with other lingering ‘toxic feelings’ over that 2 year period post transplant. Having that massage, lymph drainage was a game changer for me. Just a thought… In fact, I saw her today after a 4 month absence. Right now I feel like a bowl of comfortable mush. 😂
We just returned from FL back to Wisconsin with a great weather window for the 3 day road trip. No issues! Now I’m scrambling to get caught up on missing Connect for several days. I also missed blood work for the past couple of months so I’d better get that appointment set up! Happy to see you’re continuing to do Fab-U-lous Dahling!! 🥰

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