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Snapshots of hope: Life on the other side of transplant.
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Jun 21 11:30am | Replies (100)Comment receiving replies
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?
Replies to "My husband was diagnosed with MDS in late November 2023. We were referred to the Mayo..."
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.
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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.