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Can anyone share their bone marrow transplant caregiver experience?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Dec 18, 2023 | Replies (51)Comment receiving replies
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?
Replies to "Hello Lori! Thank you very very much for responding and for all the nice comments (regarding..."
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?
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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.