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

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. 🙏

Hi Mary! Dare I tell you that I just got back from a 5 mile walk on the beach, wading through the surf the Gulf? 🤭

Dane will be at the basically the same point in his recovery as I was when my husband and I were finally able to get back on our winter schedule of following the birds to Florida. ☺️ My BMT nurse coordinator was awesome with setting up necessary infusions and blood draws with the local hospital near our condo! Seriously, it will do both of you a world of good to resume some normalcy! I hope his transplant doctor gives 2 thumbs up!!

That reminds me! I started a discussion a few years ago.
Snapshots of Hope! Life on the other side of transplant! https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

It would be awesome if you and Dane posted some pics there and shared a bit of life after transplant.

From my understanding, the A/V maintenance therapy is pretty well tolerated though of course all meds can have side effects or risks. But the greater risk is coming from the potential for AML to start kicking up trouble again! AML can be a tricky devil. What I learned is that some of the mutations that cause AML can allow cells to elude chemo by, basically going dormant or hiding out in the body, only to reemerge at a later time. That’s why, higher risk patients, even though they had a BMT, will undergo maintenance chemo to sweep the body monthly to pick up any cells that may be fixing to make a stink again! According to my transplant doctor and my local hematologist, these cells can be actively lurking’ for up to 22 months. I was told that if I went 22 months with no signs of cancer cells, that statistically the chance of relapse drops appreciably. So that times out with Dane’s doctor’s estimate of about 2 years.

Isn’t is just amazing how quickly the time flies by! And yet, some of those early days, it was counting minutes at a time, not days! But at day 159, you both have come a long way since we started chatting. And things will just progressively keep on improving.
I keep saying it…but it’s so appropriate. This is a marathon, not a sprint! The trauma we go through with a bone marrow transplant affects us mentally, physically and spiritually. Our lives and the life of our caregiver has been turned upside down!
We’re given a new life…but our new life comes at the cost of our old one. So there are months of adjustments, compromises, mourning for what we lost but also reveling in the fact that we have a life going forward!

Wishing you and your lovely family a Happy Thanksgiving. This one will be extra meaningful. Huge hug!

Hi @loribmt !
Great to hear from you! Your positive energy always cheers me up as I follow your outreach threads to others like us.

Today is Day 159, and the completion of cycle 3 of the Aza/Ven monthly maintenance treatment. All his routine labs are stable and he has gained a couple pounds. He developed mouth thrush but it seems to be managed well with Nystatin mouth rinse. He is being tapered off Tacro and should be completely off by day 180.
The CBD gummies did not work for him, as they made him feel weird. The nausea worsens close to the week of maintenance therapy, so he has to take Reglan more during those weeks. He actually had been doing well without it for a couple weeks that he forgot to take it the first day of his treatment last cycle and that was a mistake. 🤦🏻‍♀️
We are learning how “experimental” the maintenance therapy phase is. Much remains a mystery about the best course of treatment following BMT for those with high risk AML. Studies are lacking for definitive treatment protocols and each cancer center has a unique approach. We are going with MD Anderson’s recommended dosage and duration of Aza/Ven and our Northwestern doctor has also weighed in and agrees. They recommend 2 years of this treatment, assuming clean biopsies along the way. That’s our next goal line and it feels far away. But hey, we are closing in on 6 months since BMT. I actually have to clarify with them if they mean he should receive these treatments until his 2 year BMT anniversary, or 2 years of maintenance treatment total. I also wonder about the cumulative effect of these drugs. But that’s anxiety I don’t need and can’t control.
We are hoping for a positive biopsy result in early December. 🙏
And…another hope we have is to get away to Florida in February. Our NW doc referred us to a doc at Moffitt Cancer Center where he could receive the outpatient treatment (5 consecutive days of IV Aza) and be able to enjoy the warmth and sunshine in a rental home we have reserved. We need the green light from his stem cell doc too, so we are making plans and holding hope.
I must thank God 40 times a day for another day. So even though we are allowing ourselves to look out into the future a little bit, it’s really today that counts. One at a time.

Hope you are feeling good and getting excited for the coming holidays.

Thanks for checking in Lori.