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

I finally easily found the trial i was in to prevent Graft vs Host disease.

*****Adding Itacitinib to Cyclophosphamide and Tacrolimus for the Prevention of Graft Versus Host Disease in Patients Undergoing Hematopoietic Stem Cell Transplants****

Sometimes i want to say i only had MDS and not AML, but i know all have their own challenges. Today I wanted to say i did that for GVHD i did not stress about. Being asked to participate in the study above might be just why i have not had any GVHD at 484 days past transplant. Why for today it is not on my mind.
Once i hit 1 year, that is where active surveillance ends. Survivorship tests have all been done. Some follow ups through the year and in 1year another set of survivorship tests.

I hope we get some follow ups above. This journey is so much better when you have the support of all of us who have had BMT's.

Hi Dawn. Welcome to Connect. You’ve popped into a great conversation with those of us who have gone through the bone marrow transplantation (BMT/SCT) for various blood cancers and conditions. For many of us it is the only potential cure for our diseases.

I had my transplant 6 years ago for AML (acute myeloid leukemia) at 65. I’m in full remission, 71, considered cured, healthy and expected to have a normal life span. At the same time I had my transplant, I met another woman at Mayo who was also having hers for Myelofibrosis (MF).
We became fast friends and still text each other pretty frequently. Her MF had progressed to the point where treatments were no longer effective. She was offered the BMT and didn’t look back. She too, is now in her 70s, fully active, energetic and fully enjoying her 2nd chance at life…cured.
It’s great your brother is a perfect match! So that’s one little box you can check off. I’ll be upfront and let you know that this BMT process isn’t easy. There will be a couple of weeks, initially, where you may feel fairly fatigued, possibly nauseated and wanting to nap most of the time. But that time passes quickly. Your transplant team will do their utmost to keep you comfortable and well cared for.

The stem cells are given just like a blood transfusion via a port, taking usually less than 30 minutes. Pretty anticlimactic after all the buildup. ☺️ (There’s no actual surgery involved except for a port installation.) It can take about 2 or more weeks for the newly infused cells to engraft into the bone marrow. When that happens and they start churning out new blood cells, you should notice a slow, but steady return of energy and stamina. Recovery takes time but when you consider the alternative of treatments no longer working, it’s worth the effort.
Each transplant center may have their own protocol for how the BMT is done. Mayo-Rochester, I was an outpatient where I had the transplant in the hospital but convalesced off site, near the clinic. There are other hospitals that require a 6 week stay and then recover nearby in a hotel or transition facility. Do you know what your clinic will expect? Do you have a full time caregiver on board?

I’m facing a bone marrow transplant due to myelofibrosis. I have been taking Jakavi for high counts and splenomegaly for 8 years but now I have extremely low white count. ( neutrophils are 0.2)
I can’t stop the Jakavi and there is no treatment to increase my white count. The only option offered is a BMT.
I do not have leukemia.
My brother is an identical stem cell match!
I have had a liver transplant due to complications of myelofibrosis 10 years ago.
I have no other conditions that would complicate the procedure but of course I’m concerned. Has anyone else had a bone marrow transplant for myelofibrosis and what has your experience been. Has anyone achieved a cure with BMT?!

I have rented an Air B&B for my caregiver and me (once I’m released from Mayo). It’s about 20 min drive so pretty close by. My insurance covers $5000 in lodging so that will cover most of it. My caseworker at Mayo has gotten me several grants covering some costs that my insurance doesn’t cover. So far so good.

I had 5 days of fludarabine and one of melphalan. I did have another day of Cytoxan. It could have been added for the research study.

Thank you, Lori.
You have spelled it out again.
Alive and GVHD happening is crazy. Thank you for posting too!!!!
I must say I told my body as i was out walking that you will not have GVHD!! No skin, tummy, or any funky things. Keep walking and lifting weights, drink half my body weight in water. Eat the food that has no additives or is processed.
I will put your questions in the portal, so they can answer them tomorrow or wait till August. I had forgotten my laptop at work yesterday, so i went back to get it today, as. I need to join a meeting tonight so i needed it. I also wanted to finish this post. I had thought i needed one more BMB but it seems not!!! My blood is still not O, so I want the blood test down the road that will check it.
My sister text me about a friend she has who had breast cancer 15 years ago and now has stage 3 ovarian cancer. Not treated at a cancer research hospital. She will get carboplatin/Taxol and Herceptin. I told my sister i got those which are for targeting ovarian cancer as i had brca2 and a her2 tumor.
I also received Perjeta with the Herceptin. For a year twice a day i got Lynparza which is often used for metastatic Ovarian cancer patients. Drugs and treatments have come a long way. She finally told me after all chemo she is on Avastin. Until she finds something better. Really? Google does not make us a DR. It has a good pathway to help any cells possibly left from growing. I suggested she see if she has any side effects.

Thank you for the link to the patient support center. I like to read up and get info from you and the others with experience so i might ask my team. My NP of course. She gets me my answers.

Preconditioning can be individualized for each patient’s situation. So your doctor will take into consideration the type and stage of your cancer, how you’ve responded to other treatments, any co-morbidities, your overall health…all those things will influence the intensity and type of the preconditioning. If you can get by with a lower intensity preconditioning, that would be awesome!

In my case I had high risk AML which required 5 days of fludarabine/2days melphalan. Not high on my list of fun things to do. 😄 Another friend with a similar diagnosis as mine had fewer days of chemo but 2 sessions of full body radiation, concerned that her cancer may have crossed the blood/brain barrier. So our doctors made the call according to our needs.

I think I read yesterday that this may be a couple of years out for you?

Question on changes on the prep before the BMT - the physician I spoke with Friday said the prep is only chemo 3 - pills. Is that others recent experience as well? Everything I read including radiation as well but it sounds like not anymore. Thank you

Hi @dlrn64 Let me officially welcome you to Connect and the BMT group. We have quite a growing collection of us who have gone the stem cell transplantation to get us on the other side of a cancer journey.

Several have been patients at Mayo-Jacksonville for their BMT’s so I’d like to introduce you to @kidd51 @clock456 @caregiverx2 @avaleir, among others who can give you some inside info for that campus.

We’re all here for you if you have any questions or concerns. Are you all set for lodging? Caregiver? Donor?

I’ll be having a BMT tentatively scheduled on Aug 28th for Mast Cell Leukemia that I was diagnosed with on late January. This will be at the Jacksonville Mayo. I have watched YouTube videos and read others journeys with BMT so I have a better idea of what to expect so I can better prepare for what I can expect when I’m there. It won’t be easy, but I’m hopeful that this will be a long term answer to this cancer. I’ll post more as I actually am going through it. Thanks!