Can anyone share their bone marrow transplant caregiver experience?

Hello @cupofsunshine…that name just brings a smile to my face. I agree with @becsbuddy, you gave yourself a really great name for the forum.

You’ve had quite a journey with ET for the past 25 years. Unfortunately now it’s progressed to a more serious type of a chronic leukemia called Myelofibrosis which affects the blood-forming tissue in the bone marrow. Your condition has morphed into an aggressive form which will also require an aggressive treatment plan to keep you healthy.

One of the only potential cures for this condition is a bone marrow transplant which will replace your diseased bone marrow using healthy blood stem cells from a donor. It is infused just like a blood transfusion and in my case took 20 minutes. Pretty anticlimactic considering all drama leading up to it.

I can tell you from experience that a Allogenic bone marrow transplant is a 2nd chance for a healthy life. I had acute myeloid leukemia with 3 mutations which made it very difficult to treat and any remission would be fleeting. So my only choice for longevity was a bone marrow transplant…I jumped in with both feet and never looked back!

I’ll admit it’s not walk on the beach. There are some rough days the first month but probably nothing worse than you’ve already gone through. There’s a slow but steady recovery period and it doesn’t come without risks. In my experience, the reward of being healthy again was well worth the potential risks and initial discomfort from the chemo and the transplant.

Mayo Rochester is my home away from home and my transplant team has become my second family. My doctors are some of the best in the world (I think they ARE the best) and the teams are second to none. I understand the difficulty of logistics when you don’t live near the clinic. I live about 5 hours from Rochester. But the care I received there and continue to receive 4 years later, make it worth the travel to get the very best care.

I can assure you, the staff does care about “out of towners” but to get the best care, you may need to make personal sacrifices. To help make the transition back home easier, your Mayo team will work with your local hematologist oncologist office for some followups and lab draws to save trips.

I can assure you, you’re not being singled out with all the testing. All transplant patients go through rigorous testing before we go into the transplant. The doctors need to make sure we’re physically and psychologically capable of being able to handle the rigorous chemo, medications, and reactions that can happen during and after the transplant.

I know when you read all the info about potential risks it’s daunting. Everyone is different and we don’t all experience the same side effects so it’s best to avoid all the bone marrow literature and just take it day by day.
Your transplant doctor will review any potential donors from the Be The Match foundation. It’s a global registry for stem cells so that will increase your chances of finding a viable donor. The closer the match is to your HLA markers will help to reduce any negative reactions from the new cells. Your doctor will chose accordingly.

Your team will be monitoring you closely and daily. They are prepared for any contingency. My doctor told me to let them do the worrying and I did.
I’m 4 years post transplant and feel as though nothing ever happened. My donor was a 20 year old male from the US at the time and I was 65. I joke about it, but I really do feel as though I’m 20 inside. My energy level feels limitless and I’m coming up on 70. I have an only a very slight case of GVHD with my tongue but it’s managed. I would not be alive today without this gracious gift from an anonymous donor and I expect to have a normal life span at this point.
Obviously this has to be personal choice for you. But I’d encourage you to consider going through the transplant…it will give you hope for the future.
What questions do you have for me?

Hello Lori! Thank you very very much for responding and for all the nice comments (regarding my screen name too!). Sorry it took so long for me to respond. I was trying to prepare my questions for you during the week with my therapist (hahaha). I suppose, to, over the years that i may have had a very nieve approach to my disease. But now its time for me to buck up and see this head on with all the help, support and education I can get. When it morphed last spring, it really scared me. Some friends suggest i start on cannabis, and thanfully (like as God is my witness), they started making a very very special kind just for me (Rick Simpson Oil sativa gummies). That carried me thru until I could manage to get worked back into my VA doctors and then switch to Mayo. I found an extremely helpful article on using cannabis with this family of blood cancers, so i will share that at some point. Thats not really the topic of my response to you, But i have to say that this was such an aggressive "morph"....that I called my family back home and didn't expect to get through that week. It was a huge coincidence that i even had some sativa laying around left over from my mothers extreme stage4 breat cancer. And then the other time i thought I would pass was after the mayo put me on Pacritinib. And I know this stuff should be addressed in a totally different conversation. (thread)
I'm back on my feet, to everyones complete surprise! I took my diet down to the extreme (absolutely no caffeine, very very little sugar, no cannabis--thats for various reasons.,. lately there is proof to suggest cannabis inhibits (modulates) the immunesuppressor medication i will be on for the bone marrow transplant). But, on any given day, no one can really tell i have cancer this summer!!! I'm hard at it landscaping my yard and trying to get things done around the house that may be extremely hard to accomplish post-transplant.
Which leads me into question#1. I've live with animals all my life. horses, goats, cats, dogs, chickens. And while this PMT has taken away my ability to farm right now (I do have severe strenth, bone, bleeding limitations, so i still have to be extremely cautious)...I'm trying to prepare my house. I watched a guy go thru his entire BMT on YouTube. And when he was home, he had his cat in his lap. How long might it be before i can start handling my cats and dogs again? I'm almost to the point where Im going to deep clean the house and start shutting off rooms (even buy new sheets, blankets, etc.) for my return....Is this extreme?

The VA, to my complete surprise, really followed thru with things when my cancer/disease became severe. They gave me outsourced pain doctor and did some dental work and even gave me Physical therapy (pool). I've been put on a new anxiety drug called mertazapine, which is helping me gain weight. I do have many many more questions for you. But, my diet and sleep are excellent , again, finally. The mayo did emphasize they want me at my "fittest" pre-transplant. But I might be having some uterus issues now (fibroid). Once the mayo put me on Pacritinib, some weird things started happening. And im not quite sure if that medication is an immuno-suppressant, but its supposed to be reducing my enlarged spleen. whats come up is cysts in my breasts (that were non-cancerous), one extremely heavy monthly bleed (like the heaviest ever in my life), which ended on day 7...and now a uterine fibroid. I'm wondering if they are going to force me to get a hysterectomy prior to my BMT??? I'm 51.

Hi @cupofsunshine. Don’t worry about where to respond. You’re good right here… We’ll keep it in the thread for this bone marrow transplant.
Adulting is hard, isn’t it? Hehe. Yes, it’s time to face this medical drama head on and get the transplant behind you. It will offer you the only potential cure for your situation. It’s not a walk on the beach and there will be some really low days ahead for that first month. Usually the first half of that first month. Once the new cells engraft…where they set up housekeeping in your marrow and the white blood count starts climbing, you’ll feel huge improvements physically and mentally. But there is a lengthy recovery time

I’m going to take your questions a they come… first the cannabis use.
That was an absolute no no from my team. You’ll meet with a team pharmacist who will review ALL of the meds you’re taking… prescription and supplements. ANY of these products can affect how the transplant medications work in our body and it’s crucial that they work predictably.

It’s wonderful that you’re feeling well and trying to be in the best shape possible as you head into transplant. It will help with recovery. But also, don’t burn yourself out ahead of time with all the prep work. Do you have anyone who can help you?

However, cleaning your environment is crucial for when you return home.
You’ll be getting educational classes at the clinic for cleanliness, food prep, wearing a mask, avoiding infection.
You’ll be susceptible bacterial, viral and fungal infections and will be taking meds that give you a temporary immune system. Your pharmacist will be having routine meetings with you about those.
No gardening or house plants, no indoor flowers for a while.
I wasn’t able to be around pets for quite some time. So I don’t know where that guy in the video had his BMT but I know my team at Mayo was pretty adamant about avoiding any potential sources of contamination for a while. “When” you can handle pets will be a good question for your team.

Nothing is too extreme for cleaning. New sheets, airing out curtains, washing blankets, tossing pillows and draperies in the dryer. My husband had our carpets cleaned and also had a UV filter installed in the furnace. But others I know bought room air hepa filters well. You want to avoid mold, mildew and fungus.
A new shower curtain is a good idea. I was told not to clean my own toilets for several months…hehe I had no problem letting my husband take over that little chore.
Using common sense is crucial. Sanitize everything with Chlorox wipes.
Food will have to be cooked to at least 160 degrees. No deli meats, nothing from a buffet, no salads initially. All of this will be covered in your classes.

As I mentioned, you’ll be getting tons of info from your team pre-transplant. But I found this online aftercare from Memorial Sloan Kettering which summed it all up nicely.
https://www.mskcc.org/pdf/cancer-care/patient-education/leaving-hospital-after-your-allogeneic-transplant

Do you have a caregiver who will accompany you for the 100 days + days in Rochester?

It’s excellent that the VA is following through with your pre-transplant care! Getting dental work and such out of the way is important.
The Pacritinib isn’t an anti-inflammatory drug. It’s a kinase inhibitor. It works by blocking the action of the abnormal protein that signals cancer cells to multiply. This helps stop or slow the spread of cancer cells.

Have you mentioned to your transplant doctor about the uterine fibroid and your heavy period. It’s on the Alert label to report any increased menstrual flow. I just have to let you know that ‘forcing’ you to do anything is not the standard of practice at Mayo. ☺️ I don’t know if having a hysterectomy is something that will be suggested or not but they won’t ‘force’ you to do anything.
Not sure which transplant doctor will be leading your team. But I’m familiar with all of the transplant team players and every one of them works with you, takes your input and together, you make decisions for your best outcome.

You mentioned that you’ve had quite a bit of the pre-testing already. So do your doctors feel that you’ll be able to tolerate the chemo for preconditioning and the meds to follow?

Yes, actually, i finally reported it (once reading the fine print for the drug). But, it took me a while to figure that out. To answer you back, they haven't told me if I qualify for the transplant (exactly), but they are in the process of testing my brother. And they cannot find me a match (right now), so they said while they are still taking up time looking for my match, they will start testing my siblings. Listen to whats happened. Its quite a long story, so ill try to keep it short. This has really shaken the rug right out from my entire family. I have a very small family out in California (my mom separated herself from her entire Minnesota family years ago...we are from WSP and IGH area). My family will not even call me to talk to me. Last year, when i was in deep deep trouble (before getting to treatment), they were sortof talking to me. And then I found out from my mom (who just survived the worst even breast cancer), that my sister has a friend who had some type of Leukemia and that person will not seek treatment. Therefore, my sister decided to cut all ties with me (she is 16 months younger, just turned 50 this year). My brother (who is 48) seemed to be on the fence about everything for a while until the Mayo doctors scared him (in interviewing for donation), with that drug Filigrastim. You have to realize that , last year we were all on talking terms until this year when they decided to have a huge intervention to convince me NOT to go thru with transplant! I wanted to be fully inclusive with them, no matter what decisions they were making....and i let my sister sit in one my zoom videos with my transplant doctor (HefaziT). BTW...i absolutely love my doctors up here esp Dr. Tefferi (for all his dedicated E.T. & PMT Research). So my family has disowned me, in the deepest time of need. They will not take time out to to help me in any way, return phone calls, etc. So, thats the real reason i've found you and this forum. And I'm a single, disabled veteran, mother, of a special needs child and a 25 year old daughter who is studying overseas and will not come home to help me.

They have said that i'm a very good transplant candidate (age and health). But i think they are questioning my mental health status. And the transplant team was and is very slow to get any records i had with the VA. But i dont have many psych records. I tried telling them. The VA put me with a therapist last year, just as soon as all this started transpiring. But the two psych docs up there on the transplant team, seem to be writing up extremely wrong facts about me in their post meeting notes. ( i realized after going back to read)

To answer you back, yes i have caretakers and back-up caretakers. I had one really really important question for you. But first, I wanted to say how brave you are to have gone thru all that and survive! My question is actually about staying at the transplant house (and food). I eat 10 to 15 times a day. Are all transplants the same as far as the severity of loosing our immune systems? Or are the family of Leukemias (and mpn type) diseases/transplants the most severe? Because I'm not sure I want to stay at the tranplant house. The first reason being that there are too many people and the BMT patients seem to pay the biggest price in loosing immune systems. How am i going to eat that often ( in trying to nurse myself thru those hard days), if I should be staying in my room? If im only allowed to go to the kitchen to eat? It seems like those two things dont go together. please advise. thanks.

Hi @cupofsunshine. Well, as I learned with this whole AML/BMT process is that we don’t know how strong or brave we are until it’s our only choice. ☺️

A huge key to survival is by implicitly following the direction of your transplant team. And one of the primary goals is to avoid situations where you’ll be exposed to infections.

You’re already thinking like a transplant patient. ☺️ I’m with you about not staying at the transplant house. I know a number of people who have been very happy there. It wasn’t for me. My husband was my caregiver and we’re just not ‘joiners’. So using a communal kitchen wouldn’t have worked well for either of us. We also wanted to be in complete control of our environment. We stayed at the Marriott Residence Inn and got a 2 bedroom, two bath suite so that I had my own room and bathroom.

Losing the immune system is our biggest threat. We have to be incredibly cautious for bacteria, fungal infections and viruses. Masking, sanitizing, etc., is critical. So if you’re needing to eat several times a day, sharing a kitchen may not be your best option. You may do better with hotel room with full kitchen, air bnb, an apartment rental, etc. That way you can have your own kitchen and space! Your caregiver can have food made up and ready for you to go much when needed.
Keeping in mind, your caregiver needs to be with you for several months so make sure you have space for them.

No matter the transplant allo or auto, we lose our immune systems with the conditioning chemo. Autologous transplants with patients using their own cells has a little easier and faster recovery period. They don’t have to worry about graft vs host disease because their stem cells already match up with the body they’ll be returning to. The marrow will have been cleansed but their stem cells will return to a comfy, familiar environment.

An Allogenic sct using a donor’s cells is more arduous on several levels. Doesn’t matter what the cancer or condition was that led to the transplant, the potential side effects are the same. However, the healthier a person is when they go into transplant, recovery seems to take place a little more robustly.
I think I covered everything? The gist is, yes, ‘stranger danger’. LOL. The more privacy the better.

My husband was diagnosed with multiple myeloma in October 2022 and had an autologous transplant in February 2023. He was in the hospital 9 days in October, 5 days in December, and 8 days in February. (We were able to take advantage of the advanced care at home program and go home the day of the transplant, but had to go back to the hospital when he got a fever.) I stayed with him the whole time, because that’s where I wanted to be.

There was a folding couch at both hospitals that slept pretty well. I took a very thick blanket to use as padding and my small travel pillows. I was not a lite packer. There was a medium sized cabinet with three shelves for our use in both hospitals, and room to store bags under a counter at Mayo.

At both hospitals there was the option to buy a companion tray for meals. At Mayo Jacksonville it was $10. I also had non-perishable groceries there.

When admitted for the transplant, I was not allowed to use his bathroom. I set up a schedule for family members to stay with him while I left to shower. That was for my peace of mind. I know the hospital staff can take care of him when I’m not there, but there were times when he could barely tell me what he needed. It was helpful to him for me to call for help on his behalf.

If you don’t live in the town of the hospital, check out the hospitality houses on site. We stayed at the Gabriel House of Care in Jax during his transplant prep and were very pleased.

Message me if you’d like to connect via phone.