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

Well, my doctor just posted the letter to my work today. Although i had wanted to work from home, I had no idea it would be till May of 2025. Geez. I will miss a convention i usually attend in early November and retreat i am on the board for in mid-March. This bone marrow transplant is not for the weak. My sister reminded my 2 cats will be glad i m home. Vacuuming daily and brushing them daily. I was home working a year with my breast cancer and surgeries in 2021 and 2022. My supervisor will be sad. I will miss the students who will graduate by the time i get back.

I have blood work every week right now. Finishing up my first session/set.
Thank you so much for you insight on what’s happening. I’ve read some of the other posts, made me LOL when they were talking about storm troopers and minions going in to do the job. I did have it worked up in my mind about what and how this transplant was going to go down.
So I am a lot more at ease now. Thank you so much.

Home at my caregivers the first night. I would love to hear others 1st night out of the hospital. 23 days. My picture is myself and my transporter. She packed the wheel chair with all my luggage to meet my caregiver who just arrived. I toted a large suitcase.
I woke up last night at mid/4am. Usual vital & nurse checks. Crazy. My 1st clinic visit is 4:40pm today. Twice a week for a while. The journey will continue as I build up days.

Good morning, @soonerfan, here are a few informational sites I tossed in for you to give you a head start on prepping for a transplant later this summer:

~How soon does one secure lodging for 3 month stay in Rochester
https://connect.mayoclinic.org/discussion/how-soon-does-one-secure-l9dging-for-a-3-month-stay-mayo-rochester/
~Long-term lodging options in Rochester while in cancer treatment https://connect.mayoclinic.org/discussion/long-term-lodging-options/
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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 is from Mayo for caregivers and patients.
You’ll be having an autologous transplant so disregard the allogenic information.
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#ch-tab-navigation
This is from Memorial Sloan Kettering.
https://www.mskcc.org/pdf/cancer-care/patient-education/leaving-hospital-after-your-allogeneic-transplant
Other things to consider for long term stay:

Essential items you use on a frequent basis at home Your lodging will be your home away from home but sparsely furnished. It’s nice to have some of your favorites with you.

>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. Amazon can find you too!

Most helpful to bring:
>Laptop/tablet/smartphone (+ chargers)
Your phone or device will be your connection with the Mayo patient portal and communication with your team. It allows you to review your lab results, appointments and information. It’s also your window to the world while your mobility is limited.

>Small electrical extension cord for charging your phone/tablet while in the hospital room.

> A thermometer. You’ll want to be able to check your temperature daily for sign of infection.
>All medications, spare eye-glasses if needed, personal items for grooming, etc.

>Stamps, envelopes, address book. Post it notes came in handy, along with tape, a tiny stapler, pens, scissors. etc.
>Small sewing kit
>Inexpensive collapsable (fabric) hanging organizers for closets~good for t-shirts, pants & supplies.
>A flat storage bin for under the bed work for extra supplies.
>Quarters for laundry machines (detergent, dryer sheets, color catcher sheets for small loads)


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
>looser fitting tops to accommodate the chest port or picc line in the arm.

>lysol wipes to wipe down all horizontal surfaces in living quarters, along toilet seats & flusher handle, door knobs, remotes, light switches, etc.
>if staying in a furnished room/apartment, place all dishes and flatware in the dishwasher on a sanitize setting just to make sure they’re clean.

>As the patient you should not clean your own toilet. But we found it helpful to buy a new toilet brush and cleaner at the grocery store so my husband could do a scrub between housekeeping visits.

These are just a few ideas to get your brain wired for the adventure ahead!

The Mayo bone marrow transplant teams are exceptional when it comes to information for their patients. You and your husband will have informational sessions with a dietician and other coordinators so that you’ll learn about how to stay safe, healthy and what to expect. But even after the classes you’ll end up with more questions. It’s ok! You can ask your team anything, anytime and they’ll help clarify things for you.

I’m also here to help you as well. Having gone through my own odyssey of AML and a Allogenic bone marrow transplant, I know how helpful it would have been to have a mentor; To actually know or talk with someone who went through this process and survived. That’s why I’m here, to do a little hand holding and to make sure anyone who is preparing to go through a transplant either with their cells or a donor, is ready for the mission! 😉

It’s my pleasure to be able to encourage others along this journey. One of my favorite experiences was actually published by Mayo. I had the rare opportunity to meet the family and the one of the members that I mentor. We happened to be at Mayo-Rochester at the same time. Thought maybe you’d like to read it; https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/

I know it all feels overwhelming, daunting and confusing right now. There’s so much information coming at you from many sides. But this will all come together in the end. When will you have your next blood work to check on the status of how well the chemo is working?

Thank you.

I don’t think my husband could do the group home thing either.
I was concerned about cleaning & keeping stuff clean.
I might have been hearing things about the isolation, gosh the amount of information we have been told/heard. 🤦‍♀️. Some helpful some more confusing.
I’m a month into my chemo shots. Not sure how long it will take to “clean my system” if that’s the right wording.
I thank you for your time and the great insight into all of this.

You have questions, I have answers (along with a number of other members here). So, first I want you to take a slow, deep breath and then exhale…we’ll get you through this! Promise! ☺️
Stem cell transplantation at Mayo is generally considered outpatient. So you will live off-campus in a hotel, condo, apartment, etc., You’ll be expected to return to the clinic daily, sometimes a couple times daily for blood work, infusions and appointments. So it’s important to find lodging fairly close by. There are shuttle services to get patients back and forth to the clinic if you’re not nearby.

There are links I can provide for discussions about lodging and what has worked best for longterm stays. Most places are set up for longterm patients with kitchens/kitchenettes with stoves and refrigerators. That way you can have some normalcy. There are also facilities such as The Gift of Life Transplant house where you can stay in a group type setting but you’d have a private room. The kitchen is shared though.

We’re not ‘group home’ type people so my husband and I set up for the 3.5 months (Allogenic transplant) at the Marriott Residence Inn which is 2 blocks from the clinic and directly linked via the tunnel system (the subway). We seldom took the car out of the garage. Where ever you go, ask for a monthly lease rate that way you avoid paying county room tax and check with your insurance, some will give a stipend towards lodging for a transplant.

Definitely bring the car! Easier that way to bring along what you need. Plus there are grocery stores, malls, etc., where your husband can get food and supplies! Rochester is super easy to navigate!

I’m curious about the isolation for 2 weeks. Is that actually in the hospital? Because usually, as mentioned, transplant patients are outpatients. We are admitted for the last 3 days of chemo right before transplant, but dismissed the day after transplant. Like I mentioned, we return daily for follow-ups. However, if there are issues then we’re immediately admitted to the Methodist hospital Station 9-4. That’s the transplant center. I loved being outpatient. I feel it contributed to a feeling of normalcy, not like a patient all the time. It was nice to be able to walk to my own fridge for snacks, take a shower at my leisure, things like that. I walked more at my ‘hotel home’ that I would have at the hospital.

The isolation period comes about because the preconditioning chemo received a couple days before transplant knocks out the entire immune system, leaving you very vulnerable to infection. About 2 weeks after the infusion of cells, the cells engraft into the bone marrow and set up housekeeping. At that point, when neutrophils begin regenerating, you’re less vulnerable but still have to be super cautious to avoid illness and infection.
From my experience and others who have had their transplants at a Mayo Clinic the isolation means having to mask up 24/7 and avoid exposure to people, pets and plants, mold/fungus and any food borne pathogens. No hugging either. It didn’t mean being limited to your hospital room for 2 weeks.

I’ll be away from my computer for the rest of the day but I’ll post things for you tomorrow about lodging, what to pack for longterm wherever you land and also for your hospital stay. Try to relax…we’ve got your back. ☺️

Oh my gosh yes I have questions.
We are thinking ( my husband & I) he will be traveling with me and as my caregiver. I know that I’ll be isolation for 2 weeks. ( that’s what Dr Jones @ Mayo said) but where to stay for the 2 months after. What do you bring? I know parking is an issue. We are very much considering driving. So we can have at least some sense of normal. My mind is all over the place. Thank you so much for reaching out. I’ll check out that article in your post. I’m sure as the time draws near my questions will be abundant. Thank you again

Lori,

Thank you for your posts and all others. The food portion will be covered today or tomorrow. It was a good read, all posts were as I start Sunday. I will cover your posts with my caregiver.
Sharing Mayo Clinic is my pleasure. COH has a caregiver meeting. One of my RNs says COH hope moves slow on some things.
I start tacromilus tomorrow.

Good morning, @tkidd51 I’m sorry to hear you had such a difficult time the first 3 months. Was it the transplant itself or just being away from home for that length of time?
Those first three months can be difficult. There’s so much that happens during that time as we heal from the side effects of chemo, all the meds and adaptation to the foreign cells in our body. I had my share of challenges during that time too. It’s amazing what our bodies can go through and overcome, isn’t it? Now I’m 5 years out and feel as though nothing ever happened.

However, the PTSD is real. For me that was delayed several years. I sense it more now than ever before and have little flashbacks. Considering everything you went through, it’s pretty normal for anxiety to take control of your thoughts. Talking through what’s bothering you can really help, especially with someone who has gone along that same journey. That’s why this forum has been so helpful to many of us who have had bone marrow transplants…you can talk to us.

You mentioned having some gvhd issues. If you’d like to share your experience, I started a discussion on chronic gvhd a few years ago. Often these issues correct themselves and settle down over time as the new immune system begins to adapt to the proteins in our bodies. It’s actually important to have some gvhd, proof that our new immune system is fully functioning to help prevent any return of the AML.
https://connect.mayoclinic.org/discussion/chronic-gvhd-lets-talk-about-it/
Are you still taking an immunosuppressant such as tacrolimus?