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

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?

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.

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.

@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.

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.

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?

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.

Thank you very much for this reply. It does sound very similar to our situation, only no one is telling us when we can expect more tests or if more chemo will be scheduled. Talked to transplant clinic admin yesterday he said he would have my husband's doctor call us since "these portal messages don't seem to be working for communication." Waiting for that call.
Our best wishes for you too.

@dwolden, I want to follow up to make sure you got the call that you were waiting for from your doctor's husband and that things have been resolved. Have you been contacted in the meantime?

Well after speaking to a clinic admin we got a call from an RN who told us doctor is on vacation. She suggested we schedule a video appointment with the doctor to get our questions answered which we will of course be billed for. We agreed to do that since it seems to be the only way we will learn what the care plan is. Scheduling called immediately and the first such appointment is two weeks out. My husband and I are both very disappointed and worried.