My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

There is a great podcast on exercise before/during treatment and after cancer diagnosis. https://podcasts.apple.com/us/podcast/foundmyfitness/id818198322

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.

Always happy to see your updates, @katgob! All good news for you again…and that’s the way we like it, right? I share the same feelings you have with knowing I feel great and don’t expect anything amiss. But still relieved when I see that the results confirm my good health. I’m 6 months between labs now and on an annual BMT follow-up. That’s the longest I’ve gone without a doctor visit over the past ‘almost’ 7 years! But, also like you, there is NO room for negative thoughts while we keep up our daily walking, exercising and water intake!! We were given this 2nd chance at life and we’re not going to waste a day. ☺️

I’m sorry to read your sister might be following a similar path with a blood cancer. But if she does, she has a wonderful guiding star in you to help her along this new path. You’ve already helped countless others with the sharing of your story of being diagnosed with medium risk MDS and having a preemptive bone marrow transplant. It was absolutely the right decision for you. Of course, each person’s situation is different and it becomes a very personal decision to go ahead with this. Again, thank you for sharing your journey through this medical adventure. 💙

I am so happy for you for the amazing humans who have made it to transplant and survived to share with us ! My 31 year old son was just diagnosed 10/3/25 with AML we eventually got worse news that he has AMoL and has a mutation KMT2A rearrangements . He was first diagnosed and treated at Unity Point IA Methodist hospital in Des Moines IA treated there then sent to mayo . This is scary it seems like every step forward it’s one or two steps back! He’s at mayo in remission getting HIDAC chemo and targeted drugs for his mutation until we can find him a stem bone marrow donor. Congratulations like to read the positive outcomes so i can concentrate on him and not worry every second of every day

@mamaof6monsters, Welcome to Mayo Clinic Connect. My heart goes out to you because I know what a helluva ride this is for your son and all of you! But he’s in the best possible hands right there Mayo-Rochester. I know so many of the doctors and staff there and they’re all outstanding. Of course, I’m a bit biased having been given my own 2nd chance of life there, but it is truly a place for hope.

Out of the many bits of wisdom I took away from my experience, one stuck in my mind when my doctor said to the effect, “Let me do the worrying for you so you don’t have to focus on anything other than healing. That’s what I’m here for.” I know I gave my doctor some sleepless nights but his level of knowledge and assuredness allowed me to sleep without worry. I hope you’re able to have that level peace with your son. ☺️
There’s another member from Des Moines at Mayo right now going through a similar journey with her husband. @justjoan11. Her husband has AML with several mutations. Might be nice for you two to ‘connect’ on some level.

Please let me know if there’s anything I can do for you. Do you have any questions about the upcoming BMT?
And I have to ask…your @name. Momma of 6 monsters…what’s that story?? 😂

Hey @loribmt I have a question to ask for more suggestion and help regarding my husbands health .
its been 6 months now after BMT Transplant for disease Acute Lymphoblastic Leukemia .By God Grace he is doing fine ,this week he was having a fever cough and Cold and Doctors done a swab test along with Chest X-Ray. The result comes with Covid Positive .What are the precautionary things can be taken at home Also to avoid any food or anything else ??? We are more cautious for sanitization and masking , other than that what should be avoided or to keep in mind . Also Does it takes 10 days or more to recover from Covid and the symptoms . Doctors are going to start more antibiotics now onwards. Good thing is he does not have Pneumonia this time . anyways looking for more response ....
Thanks to all for reading and responding .
Keep healthy and happy always .....

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?

@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 🙌

@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 ! 💞