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.

Colleen Young, Connect Director | @colleenyoung | Nov 27 3:30pm

In reply to @mamaof6monsters "I am so happy for you for the amazing humans who have made it to transplant..." + (show)

Just checking in, @mamaof6monsters. How is your son doing? How are YOU doing?

katgob | @katgob | Nov 27 9:49am

In reply to @anitasharma "@loribmt Good morning the lady with beautiful heart❤️ My husband is doing absolutely fine . Thanks..." + (show)

@anitasharma

Such great news for this Thanksgiving Day. Lori's messages are always so helpful!
As we take each day we have been given, I hope we all give thanks and words of gratitude to our medical teams and to all on this site who know Mayo has given us a place to connect. My goodness, I am in California and anitasharma has family in India and so many others all around the US, Canada and the world.

katgob | @katgob | Nov 27 9:41am

In reply to @dwolden "@katgob you continue to inspire. My husband is now 15 months after SCT for high risk..." + (show)

@dwolden
Thank you! Happy Thanksgiving and let us all celebrate our lives and our donors. It is truly a season for gratitude, and I still find it hard to believe i have walked through 2 cancers.
I hope you and your husband enjoy each and every day in these final days of 2025. Our transplant has given us an opportunity to see what unfolds in 2026.
I also offer a prayer and gratitude to my medical team and all they have done to get me to where i am today.

dwolden | @dwolden | Nov 27 6:24am

In reply to @katgob "Slow posting. Well, I had my 6-month CT scan last month. My nurse was out on..." + (show)

@katgob

Slow posting. Well, I had my 6-month CT scan last month. My nurse was out on vacation, and the doctor did not have anyone upload the report to the portal. He has never called or reported any results like that. His staff does. My nurse answered my question in the portal when she returned the 27th. She said the results are good. What is good? Might i see the report??? It was posted the next morning. What was good was the thyroid to the lungs, no new growths and what is in my lungs is lessening. I had not been worried, and it was a reminder to not worry. What is there will hopefully stay as is. I feel good when i walk, jog and sometimes run. Frankly as i have said, some days it is hard to believe I had a transplant.
Taking Gerontology classes in 2020, I took a class on death and dying and was tasked to write my own obituary. Since then, I always read them in the LA Times. Over the weekend I read two that made me stop and think. Both accomplished men and both having had BMT's as that was the solution for their AML. Three years was the extra time they got. It made me think how each of us has different factors. I had MDS and did not follow a watch and wait to see if mine progressed to AML. The stars aligned once i found my caregiver to house me for 70 days. Having my BMT at City of Hope was a blessing. My younger sister goes to see a new Dr. at her cancer hospital in Western NY. They are starting a new division focusing on genetics and treatments. My sister sent me his name, and I looked him up. I am letting my sister know what symptoms I had and how i got to a BMT.
TP53 mutation, 5 Q deletion, chronic low white cells and platelets. Getting worse and not better. My bone marrow biopsy showed these results and the fact my blasts were less than 3% at this time. This was 2 years ago. Crazy. I said to my sister when the results came in for the BMB and the Dr. said MDS, I thought he was wrong. No way. Then i looked at the official results he showed that were confirmed by labs. It was my official blood results. Not ones he made up. Today I know if i have a yearly visit with this office, I will keep in mind my health is what i do for my body.
So, for today, I still walk, most days, 6 miles a day and drink half my body weight in oz. of water.

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@katgob you continue to inspire. My husband is now 15 months after SCT for high risk MDS. We had a bone marrow biopsy this month showing 100% remission and 100% donor chimerism. Some GVHD but very grateful this Thanksgiving. Be well!

Lori, Volunteer Mentor | @loribmt | Nov 26 9:26am

In reply to @anitasharma "@loribmt Good morning the lady with beautiful heart❤️ My husband is doing absolutely fine . Thanks..." + (show)

Good morning, @anitasharma. Knowing your husband is recovering nicely from Covid is just the best news, indeed! Illnesses like that can be tricky early in the recovery of a bone marrow transplant patient. It also shows his new immune system is active and strong. As my doctor shared with me, yes, the Paxlovid did its job of halting the replication of the virus but the body still has to do the remaining job of clearing it out. So, from my understanding, having your husband recover so quickly is a good indication of his overall health with the transplant. ☺️

As for his weight, I know he still probably looks like skin and bones. That’s not unusual at this time. I struggled to gain weight as well. I’d lost over 50 pounds at one point during the cancer treatment and the BMT. We joked about putting weights on my ankles so I didn’t blow away in the wind! LOL

Tips I used for gaining weight were eating extra foods throughout the day (snacking), I added extras to my food for more calories and protein, such as cheese or nut butter on whole-grain toast and more milk/dairy products. For a while my dietician told me to eat anything I wanted, even if it wasn’t the healthiest…just to pack on calories. She said they (my doctor/team) would worry about Cholestrol and such later. Gaining some weight was paramount.
So my husband, on a mission to ‘put meat on my bones’, resorted to ice cream! 😂 I’m lactose intolerant but he found Lactaid Salted Caramel Chip Ice Cream, which is lactose free and made me smoothies, dishes of ice cream, cones…whatever. That helped! Le sigh…because it is so loaded with fat, saturated fat, sugar, it’s no longer on my diet. I miss it! But it did help for some weight gain.

I’m sure with your in-laws there, his mom is doing her best to fill her son’s tummy. One of my dearest friends and her family are from India. When her mom or her mother-in-law visit, we’re rubbing our stomachs on the way out of the house! Haha never a lack of amazing foods and rich sweets! So I’m thinking Gulab Jamun or Kulfi for a few treats that would add inches around the waist. Sure did for me! ☺️

Also, if your husband is still on many of his meds, until he’s fully off, that can contribute to lack of weight gain. As long as he’s feeling good and his doctors aren’t raising an eyebrow, the weight should come eventually. Though to be honest, I am still borderline underweight but I feel fantastic so I just accept this as the new me.

Oh goodness, you and your family have had so many changes over this past year! Now your son will heading off to university. Will he be staying in Canada or returning to India to study? The most beautiful news however, is that your husband is still with you and your family is complete. Please know that you are so often in my thoughts and that I’m overjoyed that this medical adventure has had such a positive outcome. 💞

anitasharma | @anitasharma | Nov 25 10:02am

In reply to @loribmt "@anitasharma Just being nosy this morning. ☺️ How’s your husband coming along with his Covid? Is..." + (show)

@loribmt
Good morning the lady with beautiful heart❤️
My husband is doing absolutely fine . Thanks so much for asking and remembering us.
"I'm so grateful for your support," "Thank you for your time and effort," and "I can't thank you enough for your help; you've made a real difference".
He has no signs of Covid anymore in his body now , but precautionary We are keeping him on resting mode safely inside the house for few more days . His other tests are also looking good , its just that his Hemoglobin is not showing going up and also his weight seems just stuck with 68 kg. Is There anything his weight can be increased ????His appearance overall is better and I am hoping it might goes well now onwards . My In-laws are here till January mid ,they are playing a good role here in his Sons recovery. I am so grateful to God for giving his another life . My Son will be going University next year preparing for another big change in Life . Overall going smooth , Life is having ups and down but We need to go get up every time whenever its low . Life is beautiful I pray to God everyone lives a good life .
You have always been my biggest cheerleaders. Thanks for your Support @loribmt
May God shower happiness and beautiful life ahead.

Lori, Volunteer Mentor | @loribmt | Nov 25 8:26am

In reply to @anitasharma "Hey @loribmt I have a question to ask for more suggestion and help regarding my husbands..." + (show)

@anitasharma Just being nosy this morning. ☺️ How’s your husband coming along with his Covid? Is he recovering quickly?

Lori, Volunteer Mentor | @loribmt | Nov 25 8:22am

In reply to @mamaof6monsters "I am so happy for you for the amazing humans who have made it to transplant..." + (show)

Hi @mamaof6monsters. I wanted to follow-up with you to see how your son is doing with his treatments for AML. You mentioned being at Mayo-Rochester so from my own experience there, I know he’s in exceptional care.

I wondered if you’d seen this reply to your original message:
https://connect.mayoclinic.org/comment/1437501/
I’m here, along with many other members who have walked along the same AML/BMT path to offer encouragement and hope. So please don’t hesitate to ask questions or share concerns.
Has there been any news of a donor match yet for your son?

Lori, Volunteer Mentor | @loribmt | Nov 14 5:23pm

In reply to @anitasharma "@loribmt Good to see your Response with more Suggestion and helping hand . Yes His Doctor..." + (show)

@anitasharma You’re always so sweet! I’m not sure if I create magic…maybe my donor cells were Unicorn cells. ☺️ But I am very grateful to be alive and honored to be able to pass along some of my experiences for support, inspiration and hope to you and your husband. He’s certainly been blessed with such an amazing family, so supportive and loving. It’s special to be part of his (your) journey.

From my experience with Paxlovid, I think he’ll start feeling better after the 3rd dose. Make sure he takes the full 5 days even if he starts improving. Sending an air hug to you ! 💞

anitasharma | @anitasharma | Nov 14 3:09pm

In reply to @loribmt "Hi @anitasharma, Ugh…Covid… Sorry to hear your husband caught the bug! I actually had it myself..." + (show)

@loribmt

Hi @anitasharma, Ugh…Covid… Sorry to hear your husband caught the bug! I actually had it myself the end of August after managing to avoid it for the last 5 years. I’m usually so cautious when I’m in a close environment with people to wear my mask. But I let my guard down for a few minutes in a public setting and that’s all it took. 😕

When I tested positive with my home kit, I called my BMT team for guidance as they had instructed.
My doctor prescribed Paxlovid immediately. It needs to be taken within the first 5 days of onset. That was a game changer. I could tell the difference within 3 doses. It stops the virus from replicating. While the worst of the symptoms were gone within 5 days after Paxlovid, it took a good 10 days or so to start having my energy return. I was incredibly fatigued during the infection. After that, I steadily improved but I still think it might have been the better part of a month before I felt normal again.

As far as food, whatever healthy foods your husband can manage to eat is fine. When my throat was sore early on, I had more soups and soft foods. After while, I ate normally. Make sure he drinks lots of room temperature water daily to keep the mucus loose and tea is soothing. Keep up with your masking and sanitizing. That’s excellent to help prevent others from getting it.

You mentioned antibiotics. They won’t help prevent or get rid of the virus. But if your husband is still on immunosuppressants the antibiotics still might be used as a prophylactic measure to prevent pneumonia. I’m relieved to see he doesn’t have that. Keep the humidity level around him higher. That can help relieve breathing and coughing. And of course, honey for coughs works well. I had my little mix of honey, turmeric, ginger which I’d either mix in tea or just take a spoon full. ☺️
One thing, since he is still early in the recovery of his BMT, even at 6 months out, note any changes in his health such as a worsening cough or high fever and report them to his BMT team. His new immune system is still immature at this point, but it can still over-react to illnesses unpredictably.
Wishing a speedy recovery for you special guy! You stay healthy too! 💞
Is your husband able to take Paxlovid?

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@loribmt
Good to see your Response with more Suggestion and helping hand . Yes His Doctor has prescribed Paxlovid today and he is just going to start taking now . I am so grateful for all of your help and Support . Overwhelmed with you lady .You create magic into others life , Don't ask me how .
Hoping for his recovery soon . will keep updating
Thanks again 🙌

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