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

Posted by Lori, Volunteer Mentor @loribmt, Feb 14, 2021

The past two years have been a storied journey of facing Acute Myeloid Leukemia and a subsequent bone marrow transplant. Being in a high risk category for relapse for AML, a transplant was necessary. Simply put, it would provide a completely new immune system to fend off any remaining AML cells lurking about in my body, after my original factory installed version had become defective in recognizing them. My husband and I shared a collective sigh of relief with the news that my latest bone marrow biopsy, at 19 months post transplant, showed no AML or the mutation which caused it. My new immune system is working!
While celebrating the results with my husband and a pizza, it occurred to me how far I’ve come and how life has changed in the past two years since the onset of AML and the transplant. There have been some challenging transitions but none insurmountable. Of course, life as a genetically modified organism, with two sets of DNA and a new blood type, can have its turf wars with a few GvHD issues, adaptations to medications and such. But I’m incredibly happy to have a second chance with this generous gift of life from an anonymous donor, and through the medical expertise of my amazing BMT-team at Mayo-Rochester. Hopefully I can meet my donor someday to thank him in person. I did send him a card right after the transplant giving him my “undying” gratitude!
We’ve all been given a gift of life. I’d love to hear your story. Lori

What diagnosis brought you to a BMT?

How has it impacted your life and that of your caregiver?

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

Ginger, Volunteer Mentor | @gingerw | Jun 29, 2022

In reply to @tml "Ginger, you’ve been great!!! Thanks for all your support. I need to chill and not mourn..." + (show)

@tml You'll find that our nature is to hyper-focus on something like the transplant. It's what we do as humans, but that doesn't mean it is healthy for us! Take a deep breath, and understand that things will happen as they are supposed to. Your numbers bounced up a bit, but, you knw they will be coming back down.

You're so right, we cannot change the past. But we can make our present and our future as good for us as possible. It will happen, trust in yourself.
Ginger

tml | @tml | Jun 30, 2022

In reply to @wyom1998 "My numbers are slightly lower and platelets are low. I would love car t-cell from what..." + (show)

Me, too.

Ginger, Volunteer Mentor | @gingerw | Jul 26, 2022

@tml Checking in with you. Have you had your transplant yet? How are you doing?
Ginger

hopefuldaughter | @hopefuldaughter | Jul 27, 2022

Hi Lori,
I’m so thankful to have found your post and uplifting words. My father was recently diagnosed with Multiple Myeloma and is currently undergoing chemo (VRD treatment) for the next 3 months and planned stem cell transplant for mid November in Rochester. We’ve read every piece of literature provided by Mayo and watched the Mayo BMT video and admittedly felt overwhelmed and crushed. However, I believe it would be very helpful for my dad (-and mom) to actually hear from actual patients/survivors…someone that would be willing to share their experience. They don’t live in MN and will be traveling from states away which I believe adds to the stress of it all. Anyway, I hope to help them get set up on this forum and hopefully they will be given some peace and hope in learning they aren’t alone. Sending love and well wishes to you and ALL on this thread!

Lori, Volunteer Mentor | @loribmt | Jul 27, 2022

In reply to @hopefuldaughter "Hi Lori, I’m so thankful to have found your post and uplifting words. My father was..." + (show)

Hi @hopefuldaughter! Welcome to Mayo Clinic Connect! I’m happy you’ve found this forum too! We have a number of members who have Multiple Myeloma in varying treatments and some have undergone stem cell transplants.

https://connect.mayoclinic.org/comment/207041/ (this one is under an autoimmune discussion but the link I posted is from fellow mentor who replied to a member a few years ago. The discussion is relevant for you and a video regarding a stem cell transplant for MM patients.

Your dad will be in the very best care at Mayo Rochester. The city is very easy to navigate and so is the Clinic. Lodging is nearby, most places you won’t need a car as hotels near the clinic are connected with skywalks and tunnels. Those that aren’t have shuttle services. Rochester is my home away from home…and a place of hope.
I’m happy to answer as many questions as you or your parents have. There will be other members popping in to help out too.
I’ll be happy to post links for lodging ideas and any other information you need. Right now this is enough to get you started.
Do you know if your father will have a transplant using his own cells or cells from a donor?

hopefuldaughter | @hopefuldaughter | Jul 27, 2022

In reply to @loribmt "Hi @hopefuldaughter! Welcome to Mayo Clinic Connect! I’m happy you’ve found this forum too! We have..." + (show)

@loribmt Thanks SO much for your prompt reply. My father will be receiving an autologous transplant. We’re told he will need to stay in Rochester for 5-6wks for transplant and recovery. I’ve recently reached out to Serenity House for a possible rental home for the duration of their stay. They seem like a really nice option. I have concerns regarding my mother’s ability to be his caregiver 24/7 as they will be out of state and without family. I’m planning to fly out and help for a week(-hopefully 2wks) but I also have my immediate family that I’m responsible for. I’m certain that we aren’t the only family to navigate all of this and would be most grateful to learn from others.

Lori, Volunteer Mentor | @loribmt | Jul 28, 2022

In reply to @capthondo "Im undergoing my sixth and final CHOEP treatment for PTCL this week to be followed with..." + (show)

Good morning, @capthondo, I realized July is just about over and you were heading to Rochester for your stem cell transplant. I hope all is well! Let me know how you’re doing. Where are you in this journey?

capthondo | @capthondo | Jul 28, 2022

In reply to @loribmt "Good morning, @capthondo, I realized July is just about over and you were heading to Rochester..." + (show)

Hi Lori!!
Funny you ask. Passed all my preliminary tests last week and finished my stem cell collection yesterday! Chemo conditioning begins next Tuesday. So far all is going well.
Thanks for asking. 🙏

Lori, Volunteer Mentor | @loribmt | Jul 28, 2022

In reply to @hopefuldaughter "@loribmt Thanks SO much for your prompt reply. My father will be receiving an autologous transplant...." + (show)

☺️ I can totally empathize with the anxiety you and your family are experiencing. The entire situation, from the diagnosis to treatment can feel so overwhelming. Being away from home for 5-6 weeks while undergoing treatment seems daunting but it’s important to have that level of consistent care and to be near the clinic. And once they’re situated with lodging, it does start feeling like home.

Serenity house is a good source for finding lodging. Also the Concierge desk at Mayo Rochester is very helpful as well if your other leads don’t pan out. Here’s a link to the Concierge service.
Five Ways to Contact Mayo Concierge Services

Phone: 507-538-8438
Live Chat: https://www.mayoclinic.org/patient-visitor-guide
Email: concierge@mayo.edu
Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services
~~~~
Keeping in mind while you search for lodging for your parents that your dad will require daily trips to the clinic. The SCT process is mostly outpatient, except for a few days in the hospital on the transplant floor (Methodist Hospital, not St Mary’s). So that means a lot of back and forth trips to the clinic and parking can be a challenge. So finding a place to stay where they’re near the clinic, either attached via tunnels/skywalks or a rental/transplant house, etc., that will have a shuttle service is very handy.

Another member who recently had her auto-SCT at Mayo-Rochester is @countrygirlusa. Her story is a little different than your dads. She didn’t have MM but another challenging disease which required the SCT. This is the story she shared of her experience. https://connect.mayoclinic.org/comment/716285/

You mentioned coming to help your parents out during your dad’s transplant. From experience those first 2 weeks post transplant are probably the most challenging as your dad will be very tired and possibly nauseated. He’ll need frequent trips to the clinic and may even require a wheel chair if he’s feeling weak. (Wheelchairs are readily available all over the clinic) So those 2 weeks might be when mom will need your help the most. And possibly when they set up housekeeping? We can talk more about that later after you’ve found lodging to see what they’ll need. ☺️

Take a breath! This is all doable. There can be some less than pleasant days but they pass quickly and this journey is worth the effort! Will your parents be driving or flying to Rochester?

Lori, Volunteer Mentor | @loribmt | Jul 28, 2022

In reply to @capthondo "Hi Lori!! Funny you ask. Passed all my preliminary tests last week and finished my stem..." + (show)

Fantastic! Congrats on passing with flying colors. That week of testing is a blast, huh? My husband and I called that being “mayo-naised”…like a medical blender of tests, procedures and classes!
It’s great everything is going smoothly so far! That’s a big step getting the cells all stashed away for next week! A relief that’s over and they’re secured. ☺️

Keep me (us) posted! We have a new member who’s heading to Rochester later in the fall on the same journey so sharing is really helpful.
Did you find lodging near the clinic?

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