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.

@loribmt

I’m a little confused. Are you saying that 2 of your 3 sisters are against you having a stem cell transplant which could ultimately extend your life? I don’t mean to be snarky but why are they making life altering decisions for you? This is between you and your husband (your caregiver) with the final declaration being yours!
From my understanding, with your health diagnosis, is that you fall into a higher category of relapse. You’re already seeing that happen with the current progression of your disease. By your sister’s suggesting you shouldn’t follow through with a transplant, it’s almost like they’re willing to throw in the towel. But I see you as a fighter who wants to enjoy her retirement with her husband! And if this is a way to increase that quality of life and life expectancy then this is what you’ll do. It’s just a little detour on the journey of the rest of your life.

I’m curious though about why they feel this way. Risk? Well, life holds no guarantees even with a transplant but you know for certain that this remission you’re trying to achieve won’t last. With a transplant you’ll have a greater chance of longevity. Again, with using your own cells you don’t have the risk of graft vs host to deal with so recovery is quicker and so is your hospital stay. You’re in great physical shape and there were no Red Flags for the team at Mayo.
I think in this case knowledge is power. So please, from now on, YOU take charge of these decisions along with your husband and doctors. If you have this done at Mayo, you’ll be part of your own team. You make decisions with your doctor and team. You’ll have educational classes, and pre-transplant testing all designed to make your experience as successful as possible.
Your sisters should be thrilled you have this option in front of you, right? What do you think?

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I think they are supportive now but think they read some of the scarier accounts and thought too chancy. One said I did not understand that the Chemo for the transplant was way worse than my weekly protocolS I said I knew that but perhaps only two days and was sure I could tolerate that. Some things on the internet are older and so many are done now that am sure I will prevail. The Mayo doctor did give me the odds but I am a gambler and despite our run of bad luck with this and his car, I think they are still well in my favor.,I will be sharing your roommate’s experience…it might not be mine but then it could be! I will say that no matter what I have taken di far no nausea and a good appetite so will go with that scenario! I am determined to have one if I possibly can! I am so thankful that Mayo seems to think it can happen. Of course way more positive one day 1 before my PET came back. He does seem to think the Revlimid will come through! My sister went with me to my last/first back with her this year. Her husband died two years ago from Pancreatic cancer. He also had diabetes and Parkinson’s, the latter not diagnosed for three years! He had freezing but not the usual symptoms. I do think that when I went into remission they thought I’d escaped a wirse fate and I would have a few years. Sadly it was just the opposite! Had I gone to z Mayo then they would have found it right away since had issues only weeks later but declared as returned on 12/27! Why it took 2.5 months is still beyond me!

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@loribmt

I’m a little confused. Are you saying that 2 of your 3 sisters are against you having a stem cell transplant which could ultimately extend your life? I don’t mean to be snarky but why are they making life altering decisions for you? This is between you and your husband (your caregiver) with the final declaration being yours!
From my understanding, with your health diagnosis, is that you fall into a higher category of relapse. You’re already seeing that happen with the current progression of your disease. By your sister’s suggesting you shouldn’t follow through with a transplant, it’s almost like they’re willing to throw in the towel. But I see you as a fighter who wants to enjoy her retirement with her husband! And if this is a way to increase that quality of life and life expectancy then this is what you’ll do. It’s just a little detour on the journey of the rest of your life.

I’m curious though about why they feel this way. Risk? Well, life holds no guarantees even with a transplant but you know for certain that this remission you’re trying to achieve won’t last. With a transplant you’ll have a greater chance of longevity. Again, with using your own cells you don’t have the risk of graft vs host to deal with so recovery is quicker and so is your hospital stay. You’re in great physical shape and there were no Red Flags for the team at Mayo.
I think in this case knowledge is power. So please, from now on, YOU take charge of these decisions along with your husband and doctors. If you have this done at Mayo, you’ll be part of your own team. You make decisions with your doctor and team. You’ll have educational classes, and pre-transplant testing all designed to make your experience as successful as possible.
Your sisters should be thrilled you have this option in front of you, right? What do you think?

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It is not their decision. Only mine and I cannot wait!!! Wish it were tomorrow!!!

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Did you also wear compression socks or just relied on the Enoxaparin?

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@tml

It is not their decision. Only mine and I cannot wait!!! Wish it were tomorrow!!!

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Good morning. It’s difficult to have this level of patience, isn’t it? ☺️ I know you want to snap your fingers and have this treatment and transplant in your rear view mirror. It’s good that you have focus for the future now, so let this medication start working with its goal of reaching a level of remission. To quote the witch from the Wiz of OZ…”All in good time, my pretty…”

I’m combining some of your previous comments in this reply. I don’t want to give you a false impression that an autologous transplant is a breeze. It is still a complicated procedure and will take time for you to recuperate. While my friend I met during my stay at Mayo (not a roommate) had little side effects to her chemo and transplant using her own cells, it’s not everyone’s experience. We all react differently to medications and trauma to our bodies. But after reading your sister’s comments about awful chemo is, I now understand she’s talking about her husband’s experience with pancreatic cancer, if I’m reading that correctly. His experience would be much different than yours. So it’s very difficult to compare cancer treatments for different illnesses.
I’d like to introduce you to @lisal64 who also had an auto transplant for MM. Here’s one of her recent replies which will help you see how much you two have in common!
https://connect.mayoclinic.org/comment/661858/

Regarding compression socks, when I was in the hospital on blood thinner I was also bedridden so I had to wear the automatic compression leg wraps to keep my circulation going. But for a while, I did wear some compressive socks, but not Ted stockings. And now, even though I’m not on any meds, if I’m riding long distances in a car or have to stand for long periods of time, I wear compression sleeves that go from my knee to ankle only. They’re great! Not super compressive but they are enough to keep my various veins happy.
What kind do you wear?

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@loribmt

Good morning. It’s difficult to have this level of patience, isn’t it? ☺️ I know you want to snap your fingers and have this treatment and transplant in your rear view mirror. It’s good that you have focus for the future now, so let this medication start working with its goal of reaching a level of remission. To quote the witch from the Wiz of OZ…”All in good time, my pretty…”

I’m combining some of your previous comments in this reply. I don’t want to give you a false impression that an autologous transplant is a breeze. It is still a complicated procedure and will take time for you to recuperate. While my friend I met during my stay at Mayo (not a roommate) had little side effects to her chemo and transplant using her own cells, it’s not everyone’s experience. We all react differently to medications and trauma to our bodies. But after reading your sister’s comments about awful chemo is, I now understand she’s talking about her husband’s experience with pancreatic cancer, if I’m reading that correctly. His experience would be much different than yours. So it’s very difficult to compare cancer treatments for different illnesses.
I’d like to introduce you to @lisal64 who also had an auto transplant for MM. Here’s one of her recent replies which will help you see how much you two have in common!
https://connect.mayoclinic.org/comment/661858/

Regarding compression socks, when I was in the hospital on blood thinner I was also bedridden so I had to wear the automatic compression leg wraps to keep my circulation going. But for a while, I did wear some compressive socks, but not Ted stockings. And now, even though I’m not on any meds, if I’m riding long distances in a car or have to stand for long periods of time, I wear compression sleeves that go from my knee to ankle only. They’re great! Not super compressive but they are enough to keep my various veins happy.
What kind do you wear?

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Just got some Activa 15-20 mm which think will wear from time to time. Had some from the hospital in 2017 which are more the sleeve type. Have two heavier travel ones that I bought to use in flights for travel. Guess think another way if preventing a problem. Loved your Wizard of Oz reference! I seem to have lost all my patience! It is great to read other stories! Guess her husband’s chemo does color her outlook. And true, hard to say how it will be for me. I guess now that I am looking forward I am too impatient!!! Will have to try and live in the moment! Not easy for me!

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Said I would not look but they gave me my bloodwork numbers and the highs are all higher and the lowers even lower. Not sure if caused by more drugs impacting or not having the effect hoping for…hmmm. Always more questions than answers. Did not compare until I got home so have not asked. Of course just saw a nurse today so perhaps not answerable there.

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@tml

Said I would not look but they gave me my bloodwork numbers and the highs are all higher and the lowers even lower. Not sure if caused by more drugs impacting or not having the effect hoping for…hmmm. Always more questions than answers. Did not compare until I got home so have not asked. Of course just saw a nurse today so perhaps not answerable there.

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@tml, I’m sending a virtual hug. It is so worrisome when handed a set of lab results without any explanation. In my situation, for years the GI nurse would make a comment on my labs: “they are high today” And, luckily, my doctor would look at them, shrug, and say, “Of course they’re high. You have liver disease, they’re supposed to be high.” I felt better.
I hope that you will get more than formation from the doctor. When do you see him again?

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I see her in April 7th and will also get my myeloma labs done that day although usually a few days before they post. I now live in fear of looking at them. My first round I did not care much since but since relapse with no real remission, I have become more aware!

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They never used to give me the CBC so guess I was blissfully unaware if they were off. I have nothing to compare it to but last week and this week. I guess because I asked one time to compare to an ER visit they now provide them.

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Thanks for that hug. I need it!!!

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