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

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. ☺️

Hi Lori and Kat - I am day -3 and your stories help me so much. I was so anxious before my admission and now that I’m here I’m feeling much better - kind of calm. Of course it’s easy-ish to feel calm and optimistic when I still feel well. But I’m trying to take it one day at a time and continue bring my current hopeful optimism along on my journey when things get tough. I can’t tell you how much your stories and encouragement help. Thank you! 🥰

Hi Kat! I always enjoy seeing your updates, especially when you include the Day +. Crazy how fast the months have flown by since you and I started talking about the possiblity of a bone marrow transplant! Now you’re at day +206. Now ‘lookit you go’! 👀 Your recovery has been so remarkable!! (Oops, not in the medical term. We like being labeled unremarkable 😅)

Had to smile with your comment about weight loss and now maintaining your desired weight. My hand shot up! Me too! Me too! Before my diagnosis with AML, I had struggled to lose those multiplying, pesky menopause pounds. I was an exercise freak all my life and at 65 was still walking 10 miles a day and lifting weights but nothing worked. Then of course, with what I thought was MY concerted effort to lose, I lost 10 pounds with little effort. Silly me, had no idea the ticking time bomb of leukemia was lurking in the background!
Months of chemo and the subsequent BMT changed that profile, quite literally. I gained back enough pounds to make my doctors happy and now it seems easy to keep at this weight. So I’m a happy gurl too. Like you, I had a young male donor. My guy was 20 at the time so we’ve now aged 5+ years together. I quite literally feel like I’m in my 20s. And at 70, I still put on at least 8 miles daily and still lift weights, bike, run up the stairs…living life like they left the gate open. 😅

For newbies like @deb913 who has just started conditioning for her BMT and to @j0318 who is patiently (or impatiently 😉) waiting for a donor, the positive information we can give them along their journeys gives them peace and encouragement. It helps instill confidence in their decision to move forward and also offers hope.

Congrats on the next round of vaccinations. Slowly you’re turning into an adult again. ☺️ I love your moments of Joy!

I am popping back in to say my 3- week checkup was great!! My red, white, neutrophils, platelets, creatinine and all was in the range. All were good!!!! I was to come off prevymis, but i just got a refill and they are pricey. I will finish those this month. Oh my. I got three more vaccines!!!! Hepatitis B, Meningococcal B vaccine (Meningococcal disease can cause meningitis infection of the lining of the brain and spinal cord) and infections of the blood., and IPV, (Jul 9, 2024 · Inactivated polio vaccine (IPV) The only polio vaccine that has been used in the United States since 2000. It is given by shot in the leg or arm, depending on the patient's age. Oral polio vaccine (OPV) No longer licensed or available in the United States.)

What a wonderful day!!! I do not know how all others do through the MDS recovery, but i am grateful my body has accepted my26 year old donor. I asked about taking vitamins and my NP suggests i wait till 1 year out. I talked with her about a number of other topics, and she was very helpful. The NP i had my first 100 days popped in. She heard my voice and came to see how i was doing.
My 100oz plus of water every day are working!!Lori has said she feels young again and i feel like i understand. I also used my weight loss from the hospital stay to start my time at my caregivers walking every day and following weight watchers. I believe in the truth, so my caregivers house was small and 3 of us were there, so walking for an hour was quiet time for me. It was a beautiful way to start what is now a life change. I hit a goal weight that is amazing to me.
I hope we hear from more in this thread about the ups/downs and moments of joy you have in this process. I am day 205 past transplant.

deb13, Lori and all
This page has been quiet!! I need to say once again that each day you are in the hospital before your transplant will go fast. Not much to do, so the experience depends on hubby, nurse staff and TV. Fatigue.....sleep is nothing to fight, but as i snore, it was something I was nervous about. HA HA. Once my body started up its nausea gag machine that is where I knew the Melphalan got me!!!!, I think once I got that last nausea pill though, all other symptoms eased. The think about the conditioning chemo is it was nothing like the chemo drugs I had from breast cancer 2 years before. Those had lasting effects because they were repetitive weekly. For the transplant it was a series of days before transplant, the main Melphalan and Cytoxan with my research study.
Blessed to beat MDS stage at transplant. I am day 204.
Tomorrow, I go for my every 3-week appointment. This is where my blood test shows if my numbers remain level, and my water intake is up to snuff for my kidneys. My hair i not really coming back red. To me it is a browner color with some grey. I need to get outside, take off my hat and get some sun!!

Hi Lori, so nice of you to check in. I was admitted yesterday and had my first chemo yesterday (day -6). I feel good and am grateful for everyday I fell good before the side effects kick in. My transplant day is November 5th. I am actually feeling less stressed now that I’m here, but it still feels very surreal since I never had any symptoms my CEL, just abnormal bloodwork.

I can’t tell you how much it has meant to know I have you and others in the group to chat with. And I like “the merry group of chimeras” you mentioned lol. Thanks so much and I’ll keep you posted.

Good morning, @deb913 Today’s the big day; The proverbial first day of the rest of your life…your second chance at life!! I just wanted to drop in to wish you well today with your stem cell transplant. I think you’ll find, like the rest of us who have gone down this same path, that all the hype leading up to this was more exciting than the actual ‘transplantation’ itself. It only takes about 20 minutes and is pretty anticlimactic. Works the same as a blood or platelet transfusion.

It’s not a walk on the beach however, as the next couple of weeks might have you feeling a big loagy. Hang in there! While there may be a few challenging days ahead, ultimately it’s worth the effort.☺️

I’d love to have you join the rest of us in this discussion where we’ve shared our transplant adventures! Our stories have become survival guides for others who are about to embark on this life changing, life saving procedure. If you have any questions, need reassurances or some hand holding, I’m right here for you along with our merry group of Chimeras…we have your back!

Let me know how you’re doing, ok? Air hug!

Hi @loribmt !
Thank you for your kind reply! We are thrilled to hear your great news! Such a momentous graduation for you and your family! Wow, so blessed! Those fall colors up north are beautiful, thank you for sharing!

Our grandsons are wonderful. The baby is smiling and cooing, while his older brother is entertaining us with his laughter and all the new words he is learning, he is talking up a storm and won’t even be two years old until November! My husband is also enjoying them when we can go to the park and play or just sit together (with a mask on) to read a book or watch a cartoon. It makes me emotional to see them together. I realize how lucky we are each and every day and I’m so grateful.
Today he starts the second Aza Ven maintenance cycle. I’ll ask about the CBD gummy option, thanks for the tip.
Crossing my fingers and sending up prayers this cycle is uneventful for him other than some nagging nausea.
Wishing you a beautiful week ahead!

You lucky ducky with no reaction in your arms? My arms were so sore by that evening and the next morning. But I did ice and had an Advil then I was fine. No side effects from any of the vaccines. But I always get a sore are with the DpT shot and that’s what both arms felt like afterwards. Not a big deal in the grand scheme of things but I understand why babies get cranky.

Oh sweetie, I’m so sorry about the passing of your little cat. I know it was a while ago already, but it’s still a roller coaster of emotions when we lose a pet. It was nice of your sister to return her to you so she’s nearby. It took me a long time to open the bag to put my handsome golden, Riley with his former fur friends. That unconditional love is hard to lose!

Your sister is going through her own cancer journey. Ovarian cancer is not an easy one either so it might be nice for her to join a support group such as you did with the breast cancer and the BMT group. I know you really felt the benefit of being able to talk to those of us who have already had our BMTs and now you’re a huge support and lifeline for other newbies! I hope your sister continues to do will with her chemo and can stay in remission. I know you will be a super supporter for her whether she wants you to or not! 😉