Stem Cell Transplant Decision & Success

Hi @anita1959, how are you doing? Have you looked into the Gabriel House of Care for long-term stay for your transplant in Jacksonville, FL? https://gabrielhouseofcare.org/

Have you already found a place to stay?

No i haven't

Well, it looks like this is the spot to be for my upcoming allogenic stem cell transplant. I enter the hospital 11-06-25 for pre-conditioning (such soft words for something that will likely make my hair fallout and give me nausea, vomiting, and diarrhea lol) I am at a crossroads with my mortality. Two years after diagnosis with "low risk" MDS the disease is progressing. If I stay on palliative care and chemo I may have a few years. I chose the SCT which has a 50% chance of success. I choose to believe God is going to heal me. The donor collection is 11-10. I find it interesting that the collection is after the destruction of Marrow. I know I will be kept alive through transfusions while waiting for the transplant. I will have to spend time going through posts to find lists of things to take to the hospital, likely symptoms for the first 100 days, and life after transplant. Are there already lists or documents in one place, or another site that has the info? I am a person who prefers facts over sentiment so you can tell it like it is. For instance, how long will I need adult diapers for diarrhea, or will I. I know people like @katgob have had recent experience and can offer advice?

Hi @janetlen. This is indeed a major life crossroads for you with your decision to go ahead with the bone marrow transplant. It looks like you’ve given this decision a great deal of thought, weighing the rewards and risks. It is a highly personal decision and not one to take lightly. But if all goes as expected, it can be an amazing gift of a second chance at life.

As you mentioned, @katgob recently went through this procedure for MDS in effort to preempt the progression to AML as have quite a few other members. I also had an allogeneic transplant 6 + years ago and enjoying my 2nd life! So welcome the BMT club!

Here are a couple of my go-to guides for instructions on stem cell transplants for caregivers and patients with sections on what to pack, avoiding infections and after care.

The first link below is a great guide from Mayo for caregivers and patients. Even if you’re not a Mayo patient most of this will be a great guide for you. Take your time to explore all the tabs. Tons of great information.
You’re having an allogeneic transplant so skip the portion for the autologous procedure.
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/
This guide is from Memorial Sloan Kettering which I found to be helpful as well.
https://www.mskcc.org/pdf/cancer-care/patient-education/leaving-hospital-after-your-allogeneic-transplant
Other things to consider for long term stay:

Mail~USPS will hold mail up to 30 days. Consider having mail forwarded to your lodging. If your mail is held, sign up for free USPS service of previewing the mail. You can see what’s being delivered/held that day to see if you’re missing anything important.
>Laptop/tablet/smartphone (+ chargers)
>Small electrical extension cord for charging your phone/tablet while in the hospital room.
>All medications, spare eye-glasses if needed, personal items for grooming, etc.
>Stamps, envelopes, address book.

Clothing:
>Slippers or shoes you can wear in the hospital
>A favorite blanket or pillow
>Depending on your length of stay, you might cross seasons. So bring clothes you can layer
>lounging clothes for comfort and looser fitting tops to accommodate the chest port

~~~~
There are several existing posts which will be helpful for you.
This one I started a few years ago. It’s very active and I’d encourage you to use that discussion to share your journey going forward. That way you’ll have more members who have had their BMTs see the discussion and add to yours! ☺️

~~My Bone Marrow Transplant (BMT/SCT) story:
Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-
To address a couple of the subjects you mentioned:
Donor cell collection: Often donor cells are collected within a day or so of transplant. There are instances where the collected cells are frozen so they can be harvested much earlier.

~The week before transplant is preconditioning. Yes, that is chemotherapy which will essentially clean your marrow and lymph system of remaining cancer cells.
However, during that time between chemo and transplant, you’re not kept alive with transfusions. You’ll be up and around, eating normally, walking, etc., but progressively getting more tired by the end of that week. Then there is Day Zero. The infusion day. The stem cell infusion takes only 20 to 30 minutes and it’s over! Pretty anticlimactic.

It is the time during the next two weeks which will have you feeling your worst as blood numbers drop off. Usually the symptoms are extreme fatigue, possible nausea and just feeling loagy, mostly wanting to sleep the day away. After the initial 2-3 weeks when the cells engraft into the marrow you’ll begin to slowly recover. Energy and stamina will improve.

You will most likely lose hair around Day 10, so you may want to get a buzz cut before that happens. I did, and loved it!! Felt pretty liberating and rocked the look! ☺️

This is already very lengthy so I’ll stop here. Where are you having your transplant? Do you have a caregiver lined up?

@janetlen
Lori was my go-to on this site as i entered the testing needed before the Preconditioning. Oh my, when they ask you to do the 24-hour urine catch, drink water galore and fill that container. Oh my. I did not and i ended up having to have a catheter inserted in the hospital for 3 days or so. One more thing hooked up. You have a number of IVS keeping to get you healthy.
Nothing surprised me on the journey. I had everything needed for my room of 30 days in the hospital. I found to make it more comfortable I ordered a foam mattress for the bed. The staff put it on for me, and it did make the bed more comfortable.
In the hospital you get nausea meds. Have you been told you will get a pic-line or port? Fatigue and tiredness the first few weeks. Lori talks about the first few weeks as the body takes in its new cells. I did not have diarrhea. I will say that in the hospital for the first few weeks they do take urine samples and measurements and fecal too. They need to make sure all your systems are in order.
Asto the hair, Melphalan was the chemo I got with another chemo on another day. My hair fellow out at 2 weeks the first time 4 years ago. This time I had the department that takes care of our hair throughout this journey, came up to cut mine to a fuzz.

@janetlen I see that others have answered a lot of your questions. I will address the adult diaper question. I never wore them during chemo, transplant and post transplant. I did have a lot of diarrhea though. Sometimes getting up and going to the bathroom multiple times was my only exercise of the day. I know that now a lot of hospitals have alarms on the beds, which is really annoying but serve their purpose. I didn’t call the nurse if I urgently needed to go, since waiting wasn’t an option when I had diarrhea.

Wishing you a successful transplant! I am going on my 10th year post SCT! I am still working full time and enjoying my early 60’s!

Thank you for responding @loribmt, @katgob , and @alive I have a much better understanding of what I am facing. Thanks Lori for the lists. I am impressed 10 and 6 yr longevity. From the research I have done, getting past 5 yrs means the likelihood of reocurrence is rare. Kat you are past the 1yr mark which is another significant milestone. You all prove the fact the younger you are, the better chances for success with the SCT. My Dr gives me a 50% chance of survival and a 50% chance of the MDS coming back. I hope to beat those odds. My odds 2 yrs ago were not much better. I don't know yet what type of port or chemo I will have. I have pre-transplant testing next Monday and Tuesday. Most of the testing was done in 2024 when anemia was affecting me. I have to do it now to make sure chemo has not changed things.

@janetlen. The next weeks will be busy for you as you get all your ducks in a row 🐥 You’ll most likely get educational literature…meaning you’ll learn an entirely new vocabulary and toss around words you’ve ever heard before. LOL. Those of us who have been through it are well versed in BMT-speak, so if you have any questions or concerns we can answer for you don’t hesitate.

Another encouraging tidbit for you that I learned from my transplant doctor. Besides the milestone marker of 5 years with no relapse, another pivotal moment is getting past the 22 month mark with no recurrence. Once you reach that point, statistically the odds of a relapse drop dramatically.

Good luck this week with the pre-testing!

@loribmt
I had my 2 month follow up. As they write in all your follow-ups, I am day 555 as of Friday. Day 556 after transplant today. I saw the Dr as the nurse is on vacation. I need to get pictures of my hair to show her in January. She was saying in August she was obsessed with my hair. The Dr moved me to every 3 months for now. All my bllod numbers are in range.
BUT, I have been having yellow pee. Yes, at work, not enough water for a number of days. My number was 115. That was my bad number and all my responsibility. As he told me in my first year after sending me for hydration 3 times at least, I am killing my kidneys. I thought how often I had yellow pee through the decades and never thought why it was happening. My kidneys and body need water. This is how a person who has never been sick might end up with a severe illness.
I am stocking up on my water. I buy many bottles and figure i will keep bottles empty at work and get to a fill station on campus as often as possible.
He only was excited to tell me i was getting my 2nd shingle shot and in June of 2026 I get my live vaccine, the MMR. Crazy. I asked him how long i will take Acyclovir and he said 6 months after the MMR vaccine.
I wanted to be a good patient. My water is it. I must do what i had done and drink up, so my next blood test will have me back in the 80's.
Check out "cancer decoded" on utube. The Dr who bought the LA Times made his fortune with medicine. I watched it to understand more about my sister. I had Lynparza pills in my breast cancer treatment with a side effect that may lead to MDS. All the stars in my body aligned and I got MDS. My sister agreed to infusions of Avastin.
Lynparza helps repair DNA in cancer cells. Avastin blocks the formation of blood vessels that feed tumors. I thank God she is talking the one she took.
We have choices in our treatment. I love the cancer decoded series; May Clinic, Md Anderson and City of Hope and more who show me treatments are hearing and being developed that will give more cancer patients long life.

@loribmt

Remind me when you found out your blood type!! I am having less blood drawn as i am stabilizing.
I had an interview with the online site i was helping on for genetics patients. Fun. The are taking the results to see what direction they will go. I suggested if they have not, go to Mayo Clinic Connect to see what a fabulous resource this site is. They are giving me a $25.00 gift card for participating.