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

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!!

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.

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!

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 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. ☺️

Thanks Lori - so helpful 💕

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! ☺️

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

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.

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. 🤣