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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
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?
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I was treated at MD Anderson for my Mantle Cell Lymohoma and they saved my life. I was misdiagnoses at my home in Mandeville, La. and went to see the doctor that was treating my brother. He retested me and we began a treatment plan that has kept me alive and well for years. I'll be 82 this July.
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3 ReactionsHi @golfer0744 Welcome to Connect! Getting the right diagnosis is critical for receiving the proper treatment. You’re living proof of that! Sometimes we have to be our own advocates and I’m relieved you kept seeking answers by going to your brother’s doctor.
What was your treatment plan for Mantle Cell Lymphoma? If you don’t mind sharing, what was your brother being treated for? Did he also have lymphoma?
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2 Reactions@g4c
Thank you. It is a tough time for her 38-year-old autistic son. My sister took care of him and never told us he likely has autism. She had secrets. This family one too. Three of my sisters 4 siblings spent time since Monday. My nephew needed time with his dad. Sadly, is Dad had spoken with his son about moving to Indiana. Too soon. He just lost his mom and this house has so much of his mom in every nook and cranny.
Prayers for my nephew I have said as his comfort must know come from his dad. His Dad not like his mom hardly at all.
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2 ReactionsLori,
I arrive next week for my SCT at Mayo Rochester. Can you walk me through your experience with the chemo as I am also scheduled for 5 days (medium strength according to my transplant doctor)? I realize things may have changed some, but I would like a better idea of what to expect for the chemo days. Will I need to be in the hospital for that time or do they do the chemo as outpatient? I forgot to ask my doctor that question.
Thanks,
Lorie
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1 Reaction@gagathemom
My perspective on "you've got this" is that no, but God has got this.
If you will be in Rochester for the transplant in July, I may see you there. I start my allo SCT next week with zero day being July 8th. I am actually looking forward to getting on with this as I really want to recover to spend more time with my amazing husband (we have been married just over a year; he has been with me since my doctor's call to go to the ER for testing and he even proposed just a couple months after that), my extended family, and my church family. So far my journey has been very good (quite a few small bumps, but no terrible things like yours). I will pray that the rest of your journey is easier. I hope that we meet at Mayo (we plan to stay at Gift of Life House) and I would be happy to let you vent in person any time when we are out there or online - whatever works.
Take care and know you are not alone in this journey.
Lorie
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1 ReactionHi @lorieliebrock My husband and I were just reflecting on our life 7 years ago this week! We’d relocated to Rochester June 12th 2019 and the 5 days of testing began the 14th. That’s where I coined the phrase, “Being Mayo-naised”. LOL
“Mayo-naised” [Meaning: to experience the immersion into Mayo Clinic’s compassionate and collaborative blender of care and hope”]. My 15 minutes of fame in Google.
So here’s a rundown of what will happen when you get to Rochester. You’ll set up your lodging to make it your home for the next 3 months. I read in your other reply that you have gone down the packing lists. If you don’t have everything, there are grocery stores, Hy-Vee, drug stores, and a mall nearby where your husband can easily grab food, supplies and such. After a few weeks you’ll be up for an adventure out in public and can join him. But for the first couple of weeks, your life will revolve around the clinic.
Ok, here’s my chemo and hospital experience…but to my knowledge the protocol has remained the same because statistics and validation from the health of patients show it works.
You’ll have 25+ appointments in 5 days. Should be in your portal soon! Sounds like a lot but it’s incredibly efficient and you’ll breeze through the day. Pack a little carry bag with water, snacks, ipad, etc. YOU and your caregiver. Because there’s a great deal of time for your caregiver to wait during your appointments. For many, your husband will be with you. But then some are X-rays, or pulmonary tests, etc., where you’ll be involved while your husband waits in the reception room. So plan accordingly.
You’ll have a ton of educational classes along with the tests so you and your husband will be provided notebooks and brochures, etc. You’ll have a tour of the transplant floor, affectionally referred to as Station 94.
A day or so before the chemo starts, you’ll have a little surgery for the Hickman port installation…where you turn into a cyborg. LOL. That’s how I felt! You might be a little tender for the first day or so but you’ll love that port!! So easy to get blood work AND all your chemo and meds get infused into the port so no more feeling like a pincushion all the time!
Chemo day. In my personal experience I had 5 days of chemo. Here was my schedule:
6/22 Day -6 Fludarabine 30 min infusion
6/23 Day -5 “ “ “ “ Out patient
6/24 Day -4 “ “ “ “
6/25 Day -3 Fludarabine 30 min infusion
Melphalan 1 hour infusion
6/26 Day -2. Fludarabine 30 minute infusion -In Patient
Melphalan 1 hour infusion.
6/27 Day -1 Rest Day (Fluids pushed that day)
6/28 Day -0- Transplant Day.
You begin this treatment as outpatient and admitted to the hospital if necessary.
So, outpatient the first 4 days. Then by day 5, I was admitted to the Methodist hospital Station 94. (The transplant floor)
Day 0 is transplant day. It takes about 15-30 minutes? You’ll have 2 nurses with you verifying the donor cells with your ID and they’ll be with you for an hour or so. You’ll have some meds before the transplant. The transplant itself is anticlimactic. The bag hangs like any infusion bag and drips into your port line. Easy peasy. Since my cells arrived later in evening it was about 11:30 pm when I had my transplant. I was discharged the next morning to go to my place of lodging! So much hype leading up to a 20 minute infusion! LOL
Once you’re back ‘home’ in your home away from home, you’ll become increasingly fatigued. So naps will be expected. But I found being an outpatient ideal and I felt I recovered faster being able to move around more, get my own food (that my husband had ready for me) and sleep in the peace and quiet of a home environment. You’ll report to Mayo daily, for labs, any fluids or meds you may need.
The team on 94 is incredible. You’re in amazing hands there.
One thing, you may not see your doctor much during the next month or so until you transition back to general population. Your care will be done by the transplant team. However, your doctor will be behind the scenes calling all the shots!
Ok this was way longer than intended. But it was a fun trip down memory lane for me!