Please help me navigate the BMT process!

Posted by slingaf @slingaf, Mar 28 3:19pm

Hi, Everyone:

I’m waiting for a BMT (probably in May) and will relocate to Jacksonville for the procedure.

Can you share any tips on what to pack, mainly for the hospital?

Did you lose your hair during conditioning or after the transplant?

What did you wish you had known during this whole process?

Any must haves?

Thank you. Just trying to get my head around all this!

Best to all of you.

Samara

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

clock456 | @clock456 | Apr 7 12:51pm

In reply to @j0318 "Hi @slingaf - @markymarkfl and @loribmt have already provided so many helpful suggestions for practical tips..." + (show)

@j0318

Hi @slingaf - @markymarkfl and @loribmt have already provided so many helpful suggestions for practical tips so you should have plenty of great information. I can only add by offering my experience as a patient who spent 80+ days in the Mayo Florida hospital for blood cancer treatments (lymphoma DLBCL). I also went thru the preparation for the BMT but was not able to complete it due to inadequate bone marrow recovery (transplant was using my own cells). All of my blood cancer treatments were on 3 North which is where I assume your BMT will be as my 3 week hospitalization for the BMT was also scheduled there.

The Mayo Florida BMT team also provided a comprehensive list of items not allowed in the hospital room during the recovery after transplant due to contamination concerns while your immune system is recovering. This team provided a notebook with a comprehensive review of the BMT process, specific items to bring and other items not allowed in the hospital room during the recovery weeks in the hospital. They also provided an outline of the daily routine in the hospital during recovery which was helpful in understanding the process.
All of this information was so helpful in preparing for an extended hospital stay. This information is also reviewed by the BMT nurse coordinator so you should get all the information you need and an opportunity to ask questions.

As for the Mayo Florida hospital experience, I would like to say that everyone on the hematology floor, from the attending physicians, nurses, technicians, and even the daily cleaning staff, were kind, compassionate, and supportive to ensure that I had everything I needed to successfully complete my treatments and feel comfortable. These are the same staff that you should have for your BMT so you will be in excellent hands. These amazing caregivers will be a great asset in your treatment and recovery.

Rest assured that you will have excellent support and guidance from @loribmt and the other amazing members who have been through the BMT process. They can all offer support as patients who have had their own success with this amazing treatment. @loribmt is an incredible mentor to have during this treatment so you are already headed for success by reaching out here.

Wishing you all the best with your treatment and recovery!

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The 3 North Team ROCKS! They made the whole experience easier and less scary.

Colleen Young, Connect Director | @colleenyoung | Apr 13 1:25pm

@slingaf, Samara, how are you doing as you prepare for BMT? Have you made the move to Jacksonville already?

deb913 | @deb913 | Apr 17 5:13pm

Hi Samara,
I wanted to give you some ideas for what to bring to hospital. I had an allogenic transplant and was admitted for 30 days so they encouraged us to bring things to make the stay more comfortable. Here are some things I remember liking
- Hats for sleeping because your head gets cold - all cotton no frills - I liked these - https://www.amazon.com/dp/B0BMQD7XVZ?ref=ppx_yo2ov_dt_b_fed_asin_title&th=1&psc=1
- Cute hats for every day - I got 2 of these : https://www.amazon.com/dp/B0CCY56R1B?ref=ppx_yo2ov_dt_b_fed_asin_title
- You’ll have a central line in your upper chest so Button down shirt or v next tshirts or pajama tops make access easier
- Sneakers - comfy walking sneaker
- Comfy slip on shoes - to use for short walks and like slippers
- Socks with grip - because hospital socks fit badly
- Inexpensive digital photo frame : Frameo https://www.amazon.com/dp/B083SH697H?ref=ppx_yo2ov_dt_b_fed_asin_title&th=1
- 2 laundry bags - one to hang in bathroom and give to caretaker for wash and another to use when first is gone. https://www.amazon.com/dp/B0BRC7G8Z1?ref=ppx_yo2ov_dt_b_fed_asin_title&th=1
- Gripper socks - because hospital requires them and theirs don’t fit well - fyi I got a medium and am a size 9 shoe: https://www.amazon.com/dp/B0BRC7G8Z1?ref=ppx_yo2ov_dt_b_fed_asin_title&th=1
- Comfy bra - You do not need a bra but I have large breasts so it’s uncomfortable for me to go without. I used these - very comfy : https://www.amazon.com/dp/B07KL1PGTN?ref=ppx_pop_dt_b_product_details&th=1&psc=1
- Powerstrip so multiple things can be plugged in (we kept it in bedside table so my election d were always in easy reach.
- Long charging boards
- Hobby item or books etc
- Any electronics you like
- Comfy Blanket - very comforting
- Pillow from home
- Shaver - to shave hair off. Hair loss happens about 7-10 days after last chemo.

Good luck. It can feel very scary but I’m 5 months out and everything has gone very well.

All my best,
Debbie

Lori, Volunteer Mentor | @loribmt | Apr 17 8:23pm

Hi @slingaf, Just checking in to see how your plans for the BMT are coming together. I know the logistics can feel overwhelming. I hope you’ve been able to make notes from some of the great suggestions from other members for how to prepare for your lengthy stay in Jacksonville.
This is a super helpful post from @deb913! https://connect.mayoclinic.org/comment/1284213/

Has there been a donor located yet?

anitasharma | @anitasharma | Apr 27 10:52am

Hello Fighters
I already shared about my husband (ALL) going for BMT this month end . His Conditioning has started and his Transplant is on April 29. I am grateful to all the people specially @loribmt for her Guidance and Suggestions. Keep praying for my husband . Thanks everyone and stay blessed always .

Lori, Volunteer Mentor | @loribmt | Apr 27 1:13pm

In reply to @anitasharma "Hello Fighters I already shared about my husband (ALL) going for BMT this month end ...." + (show)

Hi @anitasharma! You’d been on my mind the past couple of days and I didn’t get the chance to drop by to see how your husband (and you) are doing. This is a very encouraging update, so thank you for taking the time to write!

April 29th will be your husband’s Re-birth day in the world of bone marrow transplants. While it’s not an easy journey it is definitely one worth taking for him. For some of our blood cancers, like AML & ALL, it remains the only potential cure for our diseases at this time.

I’ll be sending prayers and positive energy for both of you, and your family. It’s really special that your son could be the donor for his dad! This is indeed a family affair.

Please don’t hesitate for a moment to ask questions here, or if you need just need a pep talk or a shoulder for support. So many of us have gone through the BMT process and can answer any questions or concerns you may be having.
Is your husband an in-patient, where most of the BMT followups will have him staying in a hosptial setting for several weeks? Or out-patient where he convalesces off-site?

anitasharma | @anitasharma | Apr 29 9:02am

Thanks everyone
@loribmt Yes, He is inpatient for atleast a month for the Transplant and after the discharge he needs to stay nearby Hospital as outpatient.
My Sons Stem Cell Collection has been done yesterday quite well. Today is the big day for my Husband as his BMT .
Just One question Yesterday his TBI Radiation done twice and at night he found some kind of swelling nearby Both of the Ears side. Don’t know it’s due to TBI side effects or something else . Otherwise everything going quite smooth.
Stay blessed you all lovely people .
Take care

katgob | @katgob | Apr 29 10:17pm

The days just before transplant and after has many in watch for the patients' reactions and symptoms. Nurses you grow to know in your time there listen and let the doctor know if you are not doing well. Blood taken every day a few times, vitals taken often let you know you are being taken care of. Day 0. I think having a spouse or family there is such a wonderful help. My brother visited me and did my laundry a 1/2 dozen times while i was there,
It is a day at a time. In a couple weeks as your list of numbers for your blood counts go up, you realize it is happening.
anitasharma- I hope your husband is hanging steading and asking for what he needs.

Lori, Volunteer Mentor | @loribmt | Apr 30 8:55am

In reply to @anitasharma "Thanks everyone @loribmt Yes, He is inpatient for atleast a month for the Transplant and after..." + (show)

Good morning, @anitasharma. Today is Day + 1 in the world of BMT. The actual transplantation of stem cells is pretty anticlimactic, isn’t it? All the anticipation, worry, logistics of making it a possibility come down to a mere 20 minutes or so of time as the cells are infused.

Now, it’s recovery time. The next 2 weeks are usually the worst, if I can be honest. The side effects from the TBI, preconditioning chemo, meds and the newly implanted cells themselves, can be traumatic to the body.
Your husband’s BMT team will be vigilant in helping to keep him comfortable and well monitored for infection or reactions. The worst culprits are fatigue and nausea. But there may be some other side effects such as digestive tract issues, mouth sores, hair loss, etc., as the blood numbers continue to drop. However, many of those reverse quickly when the neutrophil count starts climbing after engraftment. (Approx 10-17 days or more after transplant)

Right now, those newly infused cells are tumbling along through your husband’s circulating blood looking for this special pore where they can enter the bone marrow. It’s really quite fascinating! Once engrafted, the new stem cells set up housekeeping inside the marrow and begin churning out new, healthy blood cells. If all goes as planned, the new immune system will again have the ability to recognize the cancerous cells which managed to bi-pass his old immune system. The goal being a durable remission. ☺️

How is he feeling today? Did the swelling near his ears go away?

Lori, Volunteer Mentor | @loribmt | May 5 9:19am

In reply to @anitasharma "Thanks everyone @loribmt Yes, He is inpatient for atleast a month for the Transplant and after..." + (show)

Hi @anitasharma, I wanted to check in with you today to see how your husband is doing. If my calculations are accurate he is now at Day +6 post transplant? He may be starting to feel some of the side effects of the preconditioning chemo.

I wrote to you a few days ago, but knowing what a busy time this is, you may have not seen that reply. Here’s a link for you. It helps explain a few of the issues your husband may be seeing the next couple of weeks. https://connect.mayoclinic.org/comment/1293307/

Thinking of you and your husband and hoping all is going smoothly. Sending a hug and positive energy your way. ☺️

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