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

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. 🙏🙏🙏

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.

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?

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.

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.

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.

Thanks Lori. You message made me and my husband laugh. So far so good and we are keeping our sense of humor when possible. lol - I watched the Frozen movie while chewing on ice for 2.5 hours to prevent the mouth sores from melphalan. 🤣

Deb, never fear the Transplant team is there. Starting to feel tired, cozy yourself and sleep. Nauseated at all, then call your team. I just saw the NP i say from Day 30 to over 100 days. Pauline said i look great and she is so happy my symptoms have not changed during this whole journey. Mostly healthy eating :-), exercise and water.
As Lori always said, having a young man's cells is a blessing. I feel like she does, which is energized and ready to handle life a day at a time.
Each day is new. Meant to unfold as the day does. Handling those potential side effects can then be acted on pronto. I would ask my NP occasionally if I am a needy patient. They would say, "not even close".
As a fun thing, modesty is just tossed to the wind on this journey. You share the shower with your portable IV friend, and personal things like bowel movements and urine are reviewed and necessary for review.
July 19, I went home to my home. That story is for another time, but GRATITUDE is what i feel. Sending the universe a message for your day, a day at a time to be better than the day before.

Hi @j0318. You’ve been on my mind…has there been any news on the search for a bone marrow donor?

I meant to add that your BMT team will do their upmost to keep you feeling comfortable and treat your nausea. Do not hesitate to let them know if you need anything. You are not a bother to them. Most of us, especially women seem to feel the need to remain stoic. One of the best pieces of advice I was given by my chemo nurse who told me, “There are no trophies or awards for suffering.” LOL. So ask for help if you need it, take the meds when suggested and listen to your body. When it says sleep, you sleep! ☺️