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.