CLL Support Association
10,301 members15,972 posts

Road to a BMT... oops just got there

Hello Health Unlocked community,

Since this forum and community offered me a great amount of support and kindness during our last crisis I thought I would come back to it.

Last time you heard from me/us was when my husband Mark began failing on Ibrutinib in Feb. 2017 and he was going to start Venetoclax and we went through quite the ordeal as his CLL wanted no part of it and it took us at least 3 weeks to finally get a response.

Our Hematologist started to suspect around May/June that V was just not doing what we needed it to do and we began to plan for bone marrow transplant (BMT) but first we needed to get Mark as"healthy" as possible to do so.

Previously when we were dealing with all the challenges at the beginning of the year Mark had read a few clinical trials/articles on the combination of V and Rituximab and how the efficacy of V was greatly enhanced with the introduction of R. Little did we know that Cancer Care Ontario would not cover the R as Mark received it during 1st line treatment when he received FCR and we would have to pay for it???

Well, that started a whole new challenge, that I will leave for another time. We knew we would proceed with 4 rounds of V and R to get Mark to the best place for BMT.

So, here we are now on the road to BMT, we started the process on Nov. 9th with the insertion of a Hickman line and begin pre-conditioning to day 0 which is was to be on Nov. 15th. Unfortunately, we were delayed 1 day we didn't get enough bone marrow from the donor, so day 0 was today Nov. 16th. Mark managed the pre-conditioning really well and blood counts have remained steady.

We are going into this "adventure" (really starting to dislike that word) with a positive and healthy attitude. Mark is overall healthy with the exception of CLL. Our unrelated donor was a 10/10 match and the new wing at PMH looks and feels top notch.

The transfusion was this afternoon and it took 23 minutes in total - he is managing well and now it will be one day at a time as we walk towards all the milestones we need to reach before we know this will be a success.

Thank you for listening.

NMMP

21 Replies
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He sounds extremely brave. Thank you both for sharing. I’m praying for him.

Jeff

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Good luck to both of you!

kim

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Wishing you and your husband well - you are both incredibly inspiring 🙏

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All the best to you and your husband, positive thoughts!

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Thanks so much for your inspiring update. sending love and good health!

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warm thoughts and prayers for a good outcome

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Thanks for the update. I'm sending my best wishes for a good result and speedy recovery.

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Thoughts and prayers for you both.

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Hi NMMP,

Sending huge best wishes for a successful outcome. The collective support and best wishes of the whole community is behind you.

Please keep us updated on Mark’s progress.

Newdawn

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Hugs and hopes for a full and uneventful recovery.

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Thanks for sharing the latest news, NMMP. Hoping and praying for the very best outcome for Mark, with no more complications.

There will be lots of us here rooting for you both,

Best wishes,

Paula

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Best wishes to him for a great response and to you as well!

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Thank You.Good luck!

Olga

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Good luck to both of you 🙏

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So wanting the brighter future that success will bring you.

Huge good fortune wishes, as well as sympathetic hugs for you who watch, stand by, and wait.

Bubnjay1

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Happy rebirthday to your husband. The next few days can be the hardest as the new cells battle to establish themselves. My cousin had a transplant over two years ago (his for AML) and is doing very well. A couple of CLL friends who I stay in contact with are also moving on years after their transplants. I hope you will be reporting the milestones as your husband passes them, and then the rebirthdays - hard way to get two birthdays a year, but tell him to milk it for all he can!

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Hugs to you both!

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Thank you so much for sharing. Your bravery is an inspiration to me as we face the very beginnings of this journey with my husband’s recent diagnosis of CLL. Best wishes for you and your husband .

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Best wishes for both of you! I pray for the best outcome.

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Good luck! Keep us updated x

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Hi NMMP, just read your post and would like to pass on my wishes. I am also from Ontario and my prayers go out to both of you and your family. Good luck and best wishes.

Chris

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