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

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?

Good morning, Mary Lou! I can sure share your joy of having those taste buds return! It seemed to take forever for me! They had disappeared months before the transplant with all the chemo treatments for my AML. Hard to forget how awful food felt in the mouth, and then no taste. Eating a piece of cheese felt like sucking on a stick of butter, everything else was like cardboard! I’m so happy you’re able to ‘savor the flavor’ again and have the mouth feels! Eating cardboard wasn’t fun! LOL

It sounds like your recovery is moving along nicely. If I counted correctly today is Day +68 and 2/3s of the way to your 100 days! Congrats with the great chimerism report!

What’s going on with your neck and back? Are you still in the hospital?

Doing well. I finally got my taste buds back and starting to eat a littlemore. Unfortunately Monday I was hospitalized for sever neck and mid back pain. I can't seem to catch a break.
On the bright side I became 100% my donors blood and bone marrow on September 23rd.
Thank you for checking on me. Hope your doing well.

@loribmt Lori you now have me smiling and laughing at your image of reading my post 😁. Thank you so much for celebrating this news with me in your positive and caring manner! You are an amazing person and MCC mentor. 💛 I will say again how much I appreciate Dr. Moustafa and his endless compassion and patience with me as I have stumbled my way (mentally and physically with the early balance issues lol) into being a CNS lymphoma survivor. Another fortunate part of this experience for me. So much to be thankful for. 🙏

I am still not sure I understand all of the complexities with CNS lymphoma and the challenges and variations in treatment, but he has helped to educate me a little more. I see him again in January after my next scans and will probably have something else to ask lol. The more I learn, the more I realize there is so much I still don’t know. 🙂 Thanks again Lori!

Hi Marylou! I just realized we haven’t spoken in quite some time! Now you’re several months post BMT so it’s definitely time to check up on you. How are you fairing with your new stem cells?

@j0318 I think you’d be laughing if you would have seen me reading this message! Both hands were up to my mouth in shock! LOL. My husband walked past and asked if I was ok! 😅 YES, I’m over the moon happy for you!! Your news of being in remission and no longer requiring a BMT is so encouraging and just incredible news. Life has a way of unfolding as it’s intended! It appears there was a deeper reason for the delay in finding a donor! Feels serendipitous!

Sharing your experience is so helpful and encouraging. You, along with @mepowers, have become beacons of hope for others with similar lymphomas for whom a transplant isn’t on the table! Wow, just wow….I’m so relieved and happy for you. I hope you’ll stay active in the blood cancers group because your insights and experiences will be really helpful to other members looking for hope and support.

Indeed this will be a deeply meaningful Thanksgiving for you and your family. Thank you for sharing this wonderful news!! 💖

@loribmt and @katgob I forgot to mention in all of that information (a lot I know 🙂 ) that @mepowers was told by Mayo that because she responded so well to chemo that they would hold the transplant as a potential treatment if she relapsed. They didn’t mention her kidneys but that is her impression. The point being that lymphoma transplants are not a guaranteed requirement as it has to be with the leukemia. Dr. Moustafa, my hematologist (great doctor, compassionate and great patient communication skills), explained this a little more for us during the visit because we really did not understand this. Not sure that it is completely clear here but wanted to add in case someone else is confused as we were. Thanks again to you both for all of your support, it is good to know you are there if the transplant is needed in my future. 🙏🙏🙏

Hi Lori @loribmt and Kat @katgob -

Just wanted to give you an update on my treatment plan after the appointment with my hematologist on Friday. I am posting in the BMT group because this might be helpful to other lymphoma patients being evaluated for BMT. I have learned that unlike leukemia, the BMT is not a certainty with lymphoma.

My doctor is now advising no further treatment at this time so I will not be pursuing a transplant or any other consolidation treatment for now. He feels that my remission is now far enough along and doesn’t want to further affect my bone marrow recovery with additional treatment. I am in month 7 of post-treatment remission with total remission time at 10 months from the mid-treatment scans. It is hard to believe that much time has passed….

So the delays in the BMT treatment and the extended remission time have now changed the needed treatment. I feel very thankful that this was the outcome with the delays and that the delay did not result in a relapse to date. He did review future treatment options if there is a relapse - treatment would be based on where the relapse occurs (CNS or other areas or both since I had systemic involvement, not just CNS).

I have also corresponded with @mepowers who received her diagnosis of Large B Cell CNS lymphoma and treatment plan from Mayo in 2016. After chemotherapy, she was evaluated by Mayo for stem cell transplant but not given this treatment either (she thinks due to poor kidney recovery). She hit her 5 year remission milestone in 2021 and is still in remission today with no further treatment.
Her recovery experience gives me hope that I may also maintain a lasting remission without the stem cell transplant. She is a very kind and caring person and a great resource for anyone facing CNS lymphoma. She has previously shared her experiences and support in MCC with others facing CNS lymphoma and is why I reached out to her. So glad that I did!

I may need other treatment in the future if my bone marrow doesn’t continue to improve so not sure if BMT is still lurking in the future. WBC is very low but hemoglobin and platelets have returned to just within the normal range so good news there. Hopefully my WBC will slowly improve.

So while I won’t be receiving a BMT at this time, I will continue to follow this group and send good wishes and hugs to all who are receiving this incredible treatment. You are all amazing warriors!

Wishing everyone a good Thanksgiving in whatever way you can celebrate. My husband and I will most definitely have an extra special day this year given what we were doing last Thanksgiving day 😊.
Best wishes to everyone for good healing and health. 🙏