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

Yes he’s been off tacro since the 21 of November.

Thank you both for thee updates!! As i took my walk today i thought that without my surgically changed breasts and my super short hair, I would never know i have been through cancer treatments in abundance since August of 2021. Having a supportive spouse was not in my wheelhouse, but i did have an abundance of kind friends and family who were there for me through all of it. I learned I could walk through anything if I checked myself from the moment my eyes opened in the morning as to my sight, ability to breath and have use of all my body parts.
Some days were just do nothing.
Home. The old saying that is no place like home, rings 100% true returning after a prolonged leave from a transplant.
My hopes for my AML friends her are your medical team staying front and center in treating till you reach stable. NO GVDD God!!!! I know my 1st cancer possibly led to my MDS. My perfect hospital and Dr. gave me an option to stop AML from happening.
This year needs some extra gratitude, thanks and celebration.

Good morning, Dorothy and David! Day 106 and a huge sigh of relief…you’re finally back home! Wasn’t that just the most amazing feeling, pulling up to your house after four and a half months? I’m so thrilled for both of you to be home in time for the holidays in the Northwoods!

It will be interesting returning to the local cancer center today. For me it felt familar but foreign the first couple of visits. So used to the protocol at Mayo and things were just enough different locally to feel strange! David will be a hero of sorts, regaling the tales of his adventure with the staff. 😉
Is David fully off the tacro now?

Good morning! Happy Birthday to your husband! I’ll be 71 in January…shhhh. How did that happen??!! 😅 But what a gift we’ve been given, to have that 2nd chance. Both your husband and I would not be around to commiserate about turning 71! Now it’s a bragging right! LOL.

He’s also very lucky to have such a lovely and dedicated caregiver. You’re a trooper right along with him! I wish you both a joyous holiday season and an ‘uneventful’, healthy New Year. ☺️

Day 106 post allogenic transplant for my beloved husband. It’s been quite a ride. His transplant was at Mayo Rochester. We lived in a nice little apartment in Rochester for four and a half months for the process. We were released last week and came home to our precious house in the Northwoods of Wisconsin, 200 miles from Rochester and our first trip home since pretransplant testing started back in July.
David needs five more cycles of “maintenance chemo” to try to ensure his high risk MDS does not recur. His blood counts are all still low because of that.
But we are both so happy, overwhelmed with joy to be back at home. Every day is a gift and a wonder.
He will begin today to get follow up care at our local cancer center with additional trips back to Mayo for tests and clinic visits as needed.
So it’s still a lot, but as yet we have not seen any GVHD symptoms. Watching for that, managing the interface between the medical entities and grimly seeing the bills left after insurance coverage come in, but we are together, closer than ever and so grateful for this opportunity to live and love.

Lori, I’m goi g to pop in here. You haven’t heard from us for a while. Believe it or not my husband will be 2 yrs from transplant on Feb 15. Yes a lot of ups and downs but well worth it. Blessed second chances. Just last Dec we weren’t even sure if he would make it to his 70 birthday. This weekend he will be 71. Amen. He has a few complications from the chemo but nothing too extreme. I truthfully believe if he didn’t have Parkinson’s he would be running marathons. Still doing his climb exercises but his scoliosis is getting more severe as well. But he is a fighter. All worth it everyone waiting to do a transplant. Do it.😘

Hi, Lori: I am coming up on 5 years since my AML diagnosis and BMT next July. Other than some issues with high liver enzymes due to GVHD, I am doing great! I’m physically active, golfing and playing pickleball, living a normal life! I appreciate every day, my friends, and family. It definitely gives you a new perspective and appreciation for good health. I’m forever grateful for the wonderful doctors and nurses who helped me through my AML journey!

Hi Kat! We go through spits and spurts in some of the discussions, don’t we! But it’s like with old friends…we pick up where we left off. I often think of our groups in Connect as a Kaffeeklatsch where we break during the day to spend time with ‘family and friends’… I have fond memories of my mom, aunties and gramma or mom and her neighbors sitting around the kitchen table spilling their guts along with the coffee! I think most of the world’s problems were solved around that old table! Fast forward, now it’s me chatting with strangers who have become friends, through my computer screen ☺️

Time to check in with everyone! Thanks for starting it off today, @katgob! You’ve had a heckuva year from where you and I first began our discussion on your possible BMT. Now that’s in the rear view mirror and you’re speeding through an epic recovery!! 💖
Let’s “Rock the Casbah” and bring in some of the newbies, along with some veteran Allo-transplant members this morning to see how everyone is doing! @dwolden @katgob @mary612 @graycoose @susancurrit @wakop @jrwilli1 @tkidd51 @bevprescott @alohasteve @caregiverx2 @clock456 @avaleir @alive @edb1123 @kt2013 @jenmkr63 @maryb13350
If I’ve forgotten some names please forgive me but jump into the conversation along with the veterans of our BMT group!

We all have so much for which to be thankful…not only for the 2nd chance at life that we’ve been given. But for what it allows us to achieve! It’s a constant source of inspiration for me to not take a moment for granted. That doesn’t mean I don’t waste time or that there aren’t days without some negative thoughts lurking around the corner. But I try to savor the small things in life, look for hidden joy, practice mindfulness and positive affirmations. Most days I feel like Super Woman gifted with a power! Ha ha, I wish it was her body… le sigh… Alas, my super power is being perpetually perky! That’s a power to be used with extreme caution. It can be used for good or evil!! 😅

How has your life changed since your BMT? Any super powers, changes in how you live your life? Any notes of encouragement for those just starting out in this journey?

It sure is quiet out there. I only remember my day past transplant when i check my notes on my phone. April 9th. My hair is finally covering my head. A bit red still but more brownish. I need more to know. Having lost all my hair in late 2021 has not made this time easier in terms of how fast it grows. I do want to say a friend had said once as my hair hit my shoulders in 2023 if i wanted to go get my hair cut to trim my split ends. Split ends I said? All my hair is brand new!!!!
I went to the dermatologist last Wednesday and he burned off three spots and said come back in a year. Unless something looks odd. This and a colonoscopy result of see you in ten years is a blessing after cancer and a bone marrow transplant.
Walking no less than 12,000 steps a day..................a 2nd Birthday from the bone marrow transplant got me to commit.

Hi everyone. Today is Day 91 post allogenic transplant for my dear husband. We have had plenty of experiences so glad to be at this point and doing ok.
He had the transplant because of being diagnosed with MDS (one year ago tomorrow). Because of his “high risk” disease and cells of “concern” at the 60 day bone marrow biopsy, his doctor has ordered six cycles of “maintenance chemo.” The first cycle really took out his new blood counts and he was feeling quite ill (also had a recurrence of c diff). Does anyone else have experience with post allo maintenance chemo?