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Waiting for Donor confirmation, for BMT
Hello. Diagnosed CMML-1 July 2025, Myelofobrosis 3+/3 in January. It was determined in January that I need an Allo BMT as soon as possible. This occurred after almost 3 years of symptoms.
I am being treated with Vonjo, which has proven very effcctive. My Oncologist/BMT Team stated my blood tests have shown dramatic improvement, also improving my ability to better withstand the BMT . I feel so much better, except for a few surges in symptoms. I am very grateful for the Mayo BMT Team and this medication.
Since my MF diagnosis, I have had a surprising lack of fear about having a BMT. On reflection , the relef of finally getting a correct diagnosis, with a solution plays a large part in this acceptance. I now have hope, with the awareness of what is ahead for me. I spent a great deal of time educating myself on Myelofibrosis and BMT's.
I am fortunate and thakful to have two donors identified and contacted. While Im aware the Donor process is extensive, as time passes I am becoming impatient for my end of this process to begin. I cannot seem to get it off my mind.
Yesterday, my Oncologist stated the Donor process often requires significant time and is atleast another month or more away! Its been 5 weeks since Donor discovery.
I am oddly on edge at times, every phone call, waiting to hear....hoping every day to hear something.
Has anyone else had difficulty "waiting" for BMT to begin?
I am fine with all the "realities" of what's to come but waiting for it to begin is my challenge. Goodness, its distracting.
I have not gone through any pre-transplant testing as yet but have had social work and psychiatry appointments.
I keep reminding myself that I am in a better place than many and to keep perspective on the waiting aspect. Prayer is my hopeful outlet and I use it often each day.
Any tips to try would be greatly appreciated.
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Hi Carol! First, congratulations with having such a positive response with the Vonjo! That alone is a huge relief! That helps you sail into the BMT process in great shape!
I felt that same sense of calmness and lack of fear heading into my BMT as you’re feeling now. My BMT team at Mayo (and I’m sure these are some of the same players you have) were incredibly reassuring and I was so ready to get this over with! But waiting for the donor process is tedious and does take a level of distraction. My husband’s concern was way deeper than mine. His key issue was concern for my relapsing between the time of the last chemo for AML and the transplant. Me? I wasn’t worried. If my BMT wasn’t worried, I wasn’t worried. But I was eager to get it over with.
I had 2 potential donors as well. I remember it not taking long to find the donors but securing the date with the chosen donor took a little while. For the donor, they may or may not need to take time away from their jobs or obligations. They will be undergoing several days of (daily injections) of a medication to help promote the growth/release of stem cells so there is an adequate amount for your transplant. They may have to travel for those injections and also for harvest day. It can take a day in the facility for drawing the stem cells. The collected cells are then flown directly to Mayo (If this is from Europe, this is dependent on flights) where they’ll be processed in the lab to removed unwanted proteins and then delivered to you via a transfusion that is anywhere from 15 to 20 minutes. Pretty anticlimactic considering the hype leading up to it! LOL
Right now, you could be using this time to plan for your extended stay near the clinic. You’ll be required to be within 30 miles of the clinic for around 100 days. You can be gathering/organizing items to make your ‘home away from home’ comfortable and seamless. My husband made sure to bring his laptop and office supplies like stamps, envelopes, stickies, etc., anything he used on a daily basis as part of his normal routine
For me, I gathered comfy clothing, yoga pants, loose t-shirts (you’ll have a port so access at the neck area makes that easy), underwear, hoodie, slippers, socks, personal hygiene items. Extra pair of glasses, a few art supplies to keep myself busy. Phones, tablets, chargers for them, extension cord was handy for time in the clinic. I bought some collapsible fabric storage hanger that I could hang in a closet for tshirts, pants, supplies. Also a skinny one for shoes and other things I wanted to stash. Since we’d be gone 4 months, I also had a large, flat plastic tote that fit under the bed to keep extra essential supplies for myself. That came in handy.
The logistics may seem complicated but everything falls into place.
Have you found longterm lodging yet?
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3 Reactions@carolgk Congratulations on being able to get a bone marrow transplant. Anytime we have a big procedure coming up, no matter our health concerns, it can definitely be energy-sapping. Not to mention the mental and emotional aspects of it all.
I wish you well. I am not eligible for a stem cell transplant, but try to be present in the cheering section for all those who can!
Ginger
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2 Reactions@loribmt Thank you , Lori for these reminders. I like your suggestions, they are great tips and much appreciated.
I am essentially finished with packing. We have gone as far as we can go at this time regarding lodging, until we have the "date". A list of preferred locations, as well as back ups for myself and husband/caregiver. The lodging list Mayo provides makes the lodging aspect easier to search.
I read through the many wonderful suggestions/recommendations from past and current BMT patient posts on Connect and have procured what I do not already have on hand. Once I have the Nurses Education apppointment, suspect there may be an item or to to add.
I am ready, was told my "date" could be as early as this coming week (back in late February).
We have spoken with Social Work and they will apply for our preferred lodging as soon as we have a date, so TBD.
We have a rather large number of lodging options with availability in the area surrounding the Mayo Jacksonville Campus. We had been given all of the information lodging options in February. Only waiting on the date!
After pouring through every bit of information from the Mayo recommended sites, I believe we are as ready as I can be.
@gingerw Thank you so much, Ginger. It is a lot to take in, and to deal with. My mental game is not as strong as I thought it was. Know I am not unique. I appreciate your cheer!!!
Please take care and stay as bright as you are!