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

Thanks so much Katgob. Hearing from others like you who have gone through this is so helpful - it inspires me and keeps me feeling hopeful.

deb913- Excellent. As i said, that prevented the chemo from giving me mouth sours. Keep an eye out for nausea. That melphalan is an outside minion trying to make you feel unwell. Nip him in the shins. Zofran and Compazine were not a match. Keep the team posted.

Hi Lori. Thanks so much for checking in. Nothing as of yet. I have an appointment with my primary hematologist end of next week since they are still offering some alternative/additional treatments to BMT to prevent relapse if no donor is available. Not sure what is going to happen at this time. Still hopeful for a good outcome, whatever that might be. Also hoping to enjoy the holiday season this year since my cancer experience started on Thanksgiving last year.
So good to see the progress made by others as the days pass in the BMT group. My best wishes to everyone going thru this treatment.

Oh golly, @j0318, this wait for a donor is torture for you and I’m so sorry nothing has been resolved for you yet. You’re so sweet to wish others well with their BMT while you’re patiently waiting for your chance. I’m sure your doctors are equally as frustrated because they want to have you return to a healthy, normal life again too!
There’s a global pool with something like 22 million donors so hopefully there’s some good news on that front with your appointment next week. Unrelated cord blood can be sometimes be an alternative for patients with a lack of donor. I personally know two adult acquaintances who have had successful bone marrow transplants with cord blood cells.
If a donor match isn’t forthcoming, has your doctor discussed the possibility of umbilical cord blood cells?

j0318- Are you in the "Be a Match" pool? I am not sure your background, but blood and its products have interested me for years. I donated blood first, then platelets for 25 years. My blood numbers trending down after my 2 years of cancer treatments caused me concern. Others who were treating me did not notice. I got someone in scheduling who got a dr to approve me getting a visit with a hematologist.
Meeting him once, had me heading to get a BMB and a diagnosis of MDS, I am Caucasian, so my match was found in a couple months. I have talked with many in my hematology office and blood services that more nationalities need to donate. Blood is specific. I talk to my nieces and nephews about donating blood. They have mixed heritage and could be a match someday to save someone's life.
I know they have more options for treatment. Telling my God you need a donor!!!!!! I so feel for you and hope a plan is found.
Enjoy your days. Live each a day at a time and make them full of love and joyful times.

Thanks Lori for your support and encouragement - it means so much! Yes interesting you mention the cord blood transplant option. I had asked the BMT doctor about this possibility at the beginning of the donor process since I had read that GVHD can be milder and sometimes more easily controlled with cord blood transplants. Also there is not the uncertainty with finding, screening, and scheduling the donor’s time. He was not in favor of this as an option and at the time I didn’t ask for more explanation - I was still finishing my last two cycles of chemotherapy and feeling overwhelmed with all of the information.

I have since read that there can be slower engraftment and inconsistent screening to identify potential issues with cord blood, but I am honestly not sure if that is why the BMT doctor was not in favor of this. I may bring this up again with my primary hematologist at the visit next week to get a clearer understanding of why they do not favor this approach.

Thank you again for your support and encouragement. In this situation that no one would choose, connecting with you and Kat @katgob has been a wonderful gift. I will keep you posted as my journey continues. Many, many thanks. 🙏🙏🙏

Hi Kat,

Thank you so much for the encouragement and your prayers - so very appreciated. And especially the reminder to live one day at a time - such a simple phrase for what can be challenging to do 🙂. Yes I have been talking to god each day asking for patience and acceptance for whatever is supposed to happen. Trying to be open to the path I am meant to follow here, not just what I think should happen. I worked for 40 years in a profession using logic to solve problems and design solutions, so it is a challenge to realize that this is not something I can easily solve with those skills.

I did get my welcome kit from NMDP so I’m in there as a recipient. My heritage is European (Slavic, German, other European). So hopefully if there is a good match found, it will be a donor who is healthy and willing to commit. I know there can be many obstacles between finding a match and the actual donor stem cell collection.

And I really appreciate your stating that there are also other options if this donor transplant is not the treatment. I have spent many hours researching other possible treatments at reputable medical center websites (MD Anderson, Sloan Kettering, Cleveland Clinic to name a few). I am preparing to discuss all of this with my primary hematologist next week as well. My doctor had mentioned some other possible treatments as well, but these would not address the bone marrow. I am concerned about the possibility of MDS as well since my bone marrow has not recovered. As mentioned before, my doctor did talk about a BMB in the near future if counts do not improve.

Thanks to you and Lori @loribmt again for all of your support and encouragement. Whatever happens in my journey, I know that you both are a true gift in my life. Much gratitude. 🙏🙏🙏
P.S. I write my responses in Notes on my tablet and then just copy them over to MCC. Just wanted to be careful that I am not a super fast typist to post both of these responses to you and Lori so quickly lol.

I also want to send my support to @deb13 whose original post on uncertainty about the transplant and all of the great follow up questions to @loribmt and @katgob have helped me prepare for this process if I do receive this treatment. I so related to all of your detailed questions as I am a big planner too 🙂. Wishing all of the best for you @deb13 and watching your journey with much respect for your courage in moving forward with it. Some BMT approved flowers to hopefully brighten your day 🙂 - 🌻🌻🌻🌻🌻.

Apologies for the incorrect recipient message @deb13.
Trying this again…..@deb913 - I also want to send my support to @deb913 whose original post on uncertainty about the transplant and all of the great follow up questions to @loribmt and @katgob have helped me prepare for this process if I do receive this treatment. I so related to all of your detailed questions as I am a big planner too 🙂. Wishing all of the best for you and watching your journey with much respect for your courage in moving forward with it. Some BMT approved flowers to hopefully brighten your day 🙂 - 🌻🌻🌻🌻🌻.

Good morning, Deb! Well? How are you doing on the other side of transplant so far? All the little minions should be circulating your body looking for those magical pores to sneak into your bones. Once inside, they will stake their claim and start up the blood cell factories. ☺️
Going to take some time but you’ll get there! This isn’t a race, it’s a marathon so hang in there through all the excitement. There is a 2nd chance at life waiting for you at the finish line. 💖