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

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! ☺️

Thanks Lori - so helpful 💕

Hi Deb, I’m pretty sure each of us felt anxiety with the words, “This will require a bone marrow transplant.” The months and weeks leading up to the event are exhausting! So much to plan for with the logistics of pulling together lodging, making sure your home/pets are taken care of for the several months absence, etc., and of course the worry for the unknown that lies ahead.
Once we’re admitted, I think the pressure on us falls away and now we can hand it over to our BMT teams. We are in their hands!

I really feel it’s important for those of us who have gone through this process to help anyone facing the challenges. I didn’t have anyone that I know who had a BMT…no mentor! So my husband and I flew by the seat of our pants. LOL. My BMT team was fantastic and helped make sure I was well educated, medicated and cared for. But even they admit that unless someone has gone through this, walked the walk, it’s impossible to convey the range of emotions that impact us and the side effects we may face. Having someone to speak with such as the members in the forum really benefit each other, helping us all get through some of the roughest days.

And there will be some challenging days ahead…mostly the first 2-3 weeks with possible nausea and extreme fatigue. However! You will get past those days! Slowly your newly implanted cells will start producing new blood cells and you’ll be on the road to a slow, but steady recovery.

We’re right here for you, Deb. Day 3 you might begin feeling a little more tired as the chemo starts kicking in. So eat, drink water, nap…and stay positive. That calmness you feel is real. I felt the same once admitted and never lost one moment of sleep from worry during my odyssey. Feeling calm, trusting team to have your back, keeping a sense of humor and staying positive will carry you through all of this. ☺️