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

I’m about 2 1/2 hours from Jacksonville so I had to relocate after my transplant in September. I stayed in an apartment complex about 10 minutes from Mayo. Those 3 months were the worst for me.
I struggle daily with anxiety and some PTSD since the transplant, but I’m working through it with a therapist.

Wow, y’all are so inspiring. I was Diagnosed with Sytemic Amyloidosis AL. It is not a cancer they say. But a rare blood disorder 1 in 9000 people. Lucky me🥴! I also have Hypertrophic obstructive cardiomyopathy. Both cause obstruction. the amyloid seems to like my heart the best. I get dizzy upon standing. Get tired fast. Have been known to pass out when least expected.
I was on Camzyos for 5 months before they suspected something else was wrong. ( the camzyos and this amyloid, I believe created a war inside my body)
I went to Mayo Clinic in Minnesota @ the end of FEB. where they confirmed my diagnosis. I came home and got with an oncologist here close to home where I started chemo on April 12
I get to for weekly shots for 3-6 months depending on how my Light chain numbers look and how I react to the chemo shots( in my belly)
They are cleaning me up for a Stem Cell Transplant. Which I thought would be @ OU medical center but was said to me they want me where I have a hemotolgist/oncologist already familiar with my case( Minnesota) anyways I was told they would harvest my (baby blood and do a couple days of chemo the put my baby blood back in for growth, I would be in isolation for 2weeks. Then had to stay close (20 minutes away) for 2 months.
Thank you for sharing your stories.
It’s nice to know that other people share the same stuff ( even though it’s different) hope that makes sense.
Thank you listening.

Lori,

Thank you. I trust my Caesar salad. Grilled cheese sandwich. I read my packet of no outside food for 100 days. I ate a meatball sandwich for lunch. Just once. Too much.
Did not eat a lot most of the week.
I will say on my counts. They have been steady 3 days.....no big dips.
I have had 2 blood and 1 platelet infusion. 21 days.
Sadly, my caregiver was not ready to have me there yet. In the end, she canceled her yearly Catalina retreat next weekend. She is somewhere this weekend. I will be let out Monday. She has stuff mon/tues/we'd, so she is looking for a sub. My 2nd caregiver is dogsitting. Both thought 30 days.
This has been stressful. Improving as I have means I can be let out earlier. Great if I had family caring for me. I am grateful for friends.
WBC-5.94/PLT-59/all others good.
A day at a time.
More to the story later. I have told COH nurses about Mayoconnect. Also Lori and how this site has helped me in this journey.

Katg! Good to hear from you. You’re very wise in not digging too deeply into all the aspects of the meds, chemo or side effects. You’re so right, not everything on those lists will even pertain to you so why fill your head with worry! I’m the same way. I’ll deal with things as they go along.

I’m sorry you’re having some gut issues. Actually, chemo, any chemo, tends to mess with the guts. The usual mechanism is that chemo kills off quickly replicating cells, such as cancer cells. Unfortunately, it’s not always discriminatory, so it can also kill off mucosal cells that replicated quickly such as mouth and gut. That’s why some people develop gut issues and mouth sores.

Intitially try to stick with a bland diet, avoiding anything acidic, spicy or greasy. Sometimes having a cup of yogurt daily such as Activia will help calm the gut, supply good probiotics and regulate the gut action.

Thanks for checking in and sharing your experience! You’re doing great and should start engrafting soon if you haven’t already! Sending a hug! Lori.

Welcome to Connect @tkidd51. You are indeed a newbie in the world of BMT! Congratulations on so many levels! You’re about 7 months post transplant so the most challenging part should be behind you now. I also had AML. I’m nearing my 5 year Cell-iversary and that feeling of gratitude for the second chance at life never gets old! 😉 I hope you get to meet your donor some day. Mine, even after 5 years, has chosen to remain anonymous. I’d love to thank him in person because without him, I would not be here. I owe him everything. 💙💚

Having had your transplant at Mayo-Jacksonville, you’ll be a great source of encouragement and guidance for @caregiverx2, whose husband will be receiving his SCT there sometime around August of this year. Do you live near Jacksonville or did you have to relocate for several months?

I was diagnosed with AML last March and received a BMT at Mayo-Jacksonville in September 2023. I’m doing really well with a few graph verses host issues, but I’m truly thankful to my anonymous donor.

Updating,
I am day 17 after transplant. I must say I do not dig into treatments before I have them. I read all the materials COH provides, but I do not dig in deep. I will not have all the symptoms or side effects, so the worry is less. I will not that 2 days before my transplant I got melphalan chemo. Interesting. Day 16 I heard that this chemo damages your GI track. Great, and likely the reason tomato type dishes I ate, and fruit had me vomit a lot. For a number of days. I was finally given a 72 hr chemo that combined with Zofran ever 8 hours stopped it. 2 days free. I had been given Zofran and Compazine, but Compazine makes me sleepy.
I am also participating in the Research study meant to help stop the host/graft disease. Again, not looking too deep. I never noticed i had 2 more chemo day 2 days after transplant. Really, it took me a while to get how this two chemo's were the final flush to clear my cells out of my blood. Allowing my new cells a clean place to grow. I thought after the chemo, that taking my treatment, I only noticed the days I took the pills for this research.
Really, if you need all information, ASK. I asked the varying RN's I have had the last 20 days, and each filled me in. I took each day opening my eyes and feeling how I felt. Nurses come at 7:00/7:30 for shift change. 8-8:30 rotating doctors. I could then report how I felt. More on that in another post which will include my discharge date next week.
Ask Questions. I finally remembered i never asked about what my MDS leads to. Strange I thought. Today I asked on Day 17 my RN what Leukemia I might get. The funny thing is i think she said AML, but i did not write it down. I have more to share, but later.
To all on this journey, I look forward to a number of bone marrow biopsies in the coming months and year. They are manageable and i know the future ones will let me know how my new cells are working.
One day, sometimes one hour at a time.
Katg

Im glad you found this site. It has been a god send for me. Lori is a blessing and I have frequently used this site and yes I’m not a social media person and most don’t understand. Hugs

Taking a break from all this medical drama for a few days is a really great idea. It recharges the soul and helps both you and your husband to have a little bit of normalcy in your disrupted world. Keeping in mind that your husband is still immunocompromised, so it’s important that he mask up if there’s close contact and keep hand sanitizer nearby. I know…I’m a nag. 😉

It’s encouraging that your husband’s first round of chemo was successful in having him reach MRD. The second round, consolidation, is like a cleanup to ‘sweep’ the system. His doctor may suggest subsequent chemo rounds (consolidation) every 28 days to ensure that your husband goes into the transplant as clean as possible. They’ll be watching his kidneys closely. In my case it was my liver.

Encourage your husband to drink plenty of water to keep the body flushed. He may not prefer it, but room temperature water goes down a lot easier than ice water. It’s also utilized by the body more efficiently as ice water can constrict the blood vessels.

Regarding donors, if family members don’t pan out for a donor, don’t fret. There’s an international registry that Mayo uses to secure donors. Though my daughter was a half-match, an unrelated donor matched my HLA markers 10/10.

As you can see, you’ve just gained a new family here in Connect. Don’t hesitate to reach out through the journey. It’s a familiar trail to us but you’re just taking your first steps.
Enjoy the weekend and let me know how this 2nd round goes, ok?

@alive

Thank you for your encouragement, support, and hope. I needed it.