Snapshots of hope: Life on the other side of transplant.

I am kind of in the same boat as your husband, but my doctors at Dana Farber always respond to my portal messages. I was diagnosed January 2024. I started Chemo locally in March and was told they have found me a perfect match. I had another Cycle of chemo in April followed by a bone marrow bx in May. Bx came back with blast elevated. I then started cycle 3 with IV Chemo and Venetoclax pills. I have an appointment early July for another Bone Marrow Bx. If blast are down or not I will remain on the IV Chemo and Ventoclax til I get to Transplant. What I thought would be happening in May looks like it won't be until September. I have a special needs daughter at home and
need to make arrangements, which I have in place just waiting for the go ahead. It's diffentely a roller coaster ride and makes it hard to plan. I just started to live my life and hope I get at least a week notice to get my belongings together. I live 2 hours away and will be in Boston for 1 to 2 months.
Hang in there it's not an easy ride. I wish you both the best of luck.

From my experience 5 years ago, I do remember there was some anxiety on the part of my local hemo/oncol when there was a span before the transplant. My doctor thought I’d be having the transplant in May, a month after my last consolidation chemo in April. But it wasn’t until late June and I did require one more consolidation round of chemo in May. This had been ordered by my transplant doctor.
This was based on blood work I had done…the cleaner we go into transplant (without cancer cells) the better the outcome.
I really do understand how anxious you are to get this underway and hope you get some answers soon. Did your transplant team give an answer to the local oncologist about requiring one more round of chemo?

Local onco keeps messaging with Mayo doc about possibly extending chemo treatments. We don’t understand if they are following a protocol or what basis for more chemotherapy w/o testing.

@dwolden Omgosh I hate to hear this Mayo is suppose to be top notch BMT Dept. I was recently dx.w/poor AML early March. I had a consult at Moffitt Tampa. My case is to be brought before a panel of Drs. to see if I am a candidate. I am a LTP patient almost 4 years. to. The waiting is the worse but it sounds like Mayo needs to get on the ball. I wish your husband the best.
Definitely get your Oncologist involved they should be able to get you some answers.

Also, @dwolden, what does your husband’s local oncologist say about the delay? They should be concerned too because the clock is running with your husband’s chemo cycle. His oncologist might want to call his Mayo transplant doctor to inquire about the status of the case.

Hi @dwolden. Not getting a response to your questions is so uncharacteristic for the BMT team at Mayo. I’m really surprised and can’t imagine why there’s this glitch.
Usually once a donor has been found the process hums right along! Not to mention there is a time frame after that last round of chemo!
And I’m so sorry to hear you’ve made arrangements and then have had to cancel several times already. That is a huge frustration and mentally challenging for both of you!

Have a notepad with:
Husband’s Mayo number
Transplant doctor assigned to case
Notes of the items you want to discuss so you don’t miss any!

Then tell the person on the phone exactly what you’ve written here in the forum this morning.
Such as: That there’s been a donor located. You were told additional appointments would be scheduled but have heard nothing. That your husband has had all the chemo and the clock is ticking!
That because of the information provided to you, you’ve reserved lodging and made plans, only to cancel repeatedly.
Be assertive but polite and tell them you expect more from Mayo. If this were me on the phone, I’d be starting with, “Is there someone in charge that I can speak to directly this morning?” I know from experience there is someone the coordinator at that desk can get for you.

Let me know what you find out! I hold my bmt in the highest regard so I’m really sad when I hear there’s a glitch like this.

My husband was diagnosed with MDS in late November 2023. We were referred to the Mayo Clinic for stem cell transplant and seen there Jan.2.
The transplant specialist agreed that he needs stem cell transplant. We were told to complete three cycles of chemotherapy here at the medical facility close to home. A donor search was conducted and we were told a good primary donor had been found.
Another clinic visit was done in April. We were told to expect to move forward with pretransplant testing in four to six weeks.
That time has passed without any additional appointments being scheduled. Our questions often go unanswered. The only team member who responds reliably is our onco social worker and she of course does not have the medical answers we need.
The uncertainty is very difficult. It has been a real roller coaster emotionally. My husband has been very patient and keeps sending information and questions on the portal to the specialist but gets little response.
We live four hours away and have made and cancelled housing arrangements several times now.
Does anyone have any advice about how to proceed?

My entire life post transplant has been dedicated to giving back, and supporting those who follow the path I had to walk. When I was given my second chance, there was no internet, no support groups, and no mentors. I vowed to do all I could to help others get through their journeys with the support that wasn't always there for me. I met many people, and supported all who needed an encouraging word, a smile, or a hug. I joined transplant support groups on Facebook when I finally connected there, and now am an admin for many many transplant related groups. I also signed up to be a mentor to those who are about to walk the same path, or are on the path and need someone who understands the process, setbacks, and trials of this miracle. I am a very gifted writer, having penned over 300 pieces of poetry, also a singer songwriter, with several organ donor related songs recorded. I am the father of 5 (2 biological 3 adopted post transplant) grandfather to 4, and married to my bride, my support, my life partner for almost 41 years. My two older children were 4 1/2 and 6 when I had my transplant at age 35. I have done much since, Scoutmaster for 10 years, playing in bands, working, promoting organ donation, being a husband, and father, and loving life!
If allowed I would be happy to share a link to one of my donor songs!!
Thank you for the kind words about my poem. I have a page on FB dedicated to my gift of poetry also!

Welcome, @bigjoek! Your beautiful, eloquent poem moved me to tears as I’m sure it will for others who have been gifted with a second chance at life. We don’t often get the opportunity for a do-over and to re-set our priorities. Every day, every moment is a gift to be treasured. Thank you so much for sharing with us.

I hope you’ll be a regular contributor to the transplant group. There are many here who have had liver transplants and your survival story of 32 years will be so inspiring to them and for others who are waiting to have a transplant. Congratulations on such a successful procedure!

This conversation is a good place to start sharing if you’d like:
Liver transplant - Let's support each other
https://connect.mayoclinic.org/discussion/liver-support-group/
I also see you posted about attending the transplant picnic. Have you attended in the past?

I had a life saving liver transplant at Mayo in Rochester! As life often does, I was gifted with a surprise...I became a very gifted poet! Sharing one of my many poems of gratitude because it so well fits your story!
Thank you for sharing your story, and giving me a chance to share a touch of mine!
Joe Kralicek
Mayo Liver Transplant #397
11/01/1992