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

Wow, y’all are so inspiring. I was Diagnosed with Sytemic Amyloidosis AL. It is not a cancer they say. But a rare blood disorder 1 in 9000 people. Lucky me🥴! I also have Hypertrophic obstructive cardiomyopathy. Both cause obstruction. the amyloid seems to like my heart the best. I get dizzy upon standing. Get tired fast. Have been known to pass out when least expected.
I was on Camzyos for 5 months before they suspected something else was wrong. ( the camzyos and this amyloid, I believe created a war inside my body)
I went to Mayo Clinic in Minnesota @ the end of FEB. where they confirmed my diagnosis. I came home and got with an oncologist here close to home where I started chemo on April 12
I get to for weekly shots for 3-6 months depending on how my Light chain numbers look and how I react to the chemo shots( in my belly)
They are cleaning me up for a Stem Cell Transplant. Which I thought would be @ OU medical center but was said to me they want me where I have a hemotolgist/oncologist already familiar with my case( Minnesota) anyways I was told they would harvest my (baby blood and do a couple days of chemo the put my baby blood back in for growth, I would be in isolation for 2weeks. Then had to stay close (20 minutes away) for 2 months.
Thank you for sharing your stories.
It’s nice to know that other people share the same stuff ( even though it’s different) hope that makes sense.
Thank you listening.

I’m about 2 1/2 hours from Jacksonville so I had to relocate after my transplant in September. I stayed in an apartment complex about 10 minutes from Mayo. Those 3 months were the worst for me.
I struggle daily with anxiety and some PTSD since the transplant, but I’m working through it with a therapist.

Good morning, Katg. Whoo whoo! Seeing your blood numbers rising…you’ve engrafted!! That’s excellent news and right on target.

I’m going to share a little about foods though. With my classes on infection avoidance there was a session on foods to stay away from for the first few weeks. Food such as lettuce and spinach (any fresh salads) were off the table because they can harbor bacteria that could be catastrophic in a new transplant patient. Fresh fruits were to be avoided unless they are thoroughly washed and soaked in vinegar water. Even bananas had to be washed before peeling or cutting. Nothing allowed from a deli, no prepackaged sandwich meats unless they were flash fried/heated to at least 160 degrees. The dietician even made a point of saying to the class, “For you, there is NO 5 second rule! If something hits the floor it’s gone…the floor is lava.” 😅

Your caregiver situation is stressful. I sure hope that gets straightened out for everyone’s sake because having a place to land for recovery is very important. It’s not that you’ll need any constant care but you will require trips back to the clinic for blood work and possible infusions. Plus you’ll be weak/fatigued and not up for a great deal of physical exertion for a while. You’re doing remarkably well for day 21 so I expect you’ll continue improve steadily. Don’t be surprised if you have a string of great days but then overdo the activity and you feel like crud the next day or so after that. That used to bother me until I realized it was pretty normal for post transplant. Slow and steady wins this race…or marathon. 😅

Ohhh, Kat, I give you a virtual hug for passing along information about Mayo Connect to your nurse!! We all need a lifeline sometimes and this is a wonderful forum for support, encouragement and hope. So thank you for spreading the word. It means a great deal to me that I’ve been able to use my experiences to help others and now you’re in that position too. Our stories are now someone else’s survival guide. ☺️

Hi @soonerfan, Mayo Rochester is my home away from home! So I’m very happy to hear that’s where you’ll be having your stem cell transplant. You’ll be in amazing hands there!
It sounds as though you’ll be using your own cells which makes the journey a bit easier on you. The recovery time is much faster than if having to use a donor’s cells.

We’ve had several members who have had what’s referred to as an autogenic stem cell transplant…using their own cells. You’ve already got the gist of what will happen when you’re finally ready to start the process. You’ll be receiving some injections at the clinic to ramp up your blood production. When the numbers are appropriate you’ll have your cells harvested. That’s very much like donating blood except stem cells will be culled out of the blood as it recycles back to your body. Those cells will then be frozen until you’re ready for transplantation.
Next you’ll have the preconditioning chemo which will basically clean your bone marrow of residual disease. When that’s over, you’ll be infused with your saved blood cells. It’s the same as a blood transfusion and takes about 20 minutes. Pretty anti-climactic considering the hoopla leading up to the event. 😉.
The cells circulate through your blood stream and then like magic, the stem cells know exactly where to go into the bone marrow to set up housekeeping again! It takes some time to recover but so worth the effort in the end!

I mentioned earlier about other members having autologous transplant. This was written by @jstpeachey last summer as she went through the procedure in Mayo-Phoenix. You might like to read through this discussion too.
https://connect.mayoclinic.org/discussion/my-autologous-stem-cell-transplant-journey-mayo-phoenix/
Since you’re still in treatment back home you’ve got time to prepare. I know this can all sound daunting with so much planning and things to consider. Do you have any specific questions you’d like to ask?

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?

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.

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

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. ☺️

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.

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?