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
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NMMP
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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!
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 .
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
Hello, I just read your post today, a year after you poeted, due to the fact that my husband has now reached a similar situation as yours last year and I an seeking information. My husband had only a one-year lomg ramission after his initial FCR treatment. The Cll returned last year. After a year of watching and waiting, he has begum treatment with venetoclax.
It appears that he may probably have a richter's transformation so they are considering a tripke therapy of venetoclax, ibrutinib and "rit". They are also talking about bone marrow transplantation, and I am trying to find out as much about this process as I can. How difficult is the pre-transplant procedure? what are the side effects of the transplantation, and how long do the positive effect last?
Having been there a year ago, I am hoping that you can share your experiences with me.
My apologies for the delay in responding to your email – I have been traveling for business and have not had much free time.
I’m not sure if you have had the opportunity to read my other posts as I tried to post as much as possible during that very difficult time. HealthUnlocked is an incredible organization that provides a tremendous amount of support and education for those going through this experience for both patient and Carepartner.
With respect to the experience of BMT it is a very tough road and I can only comment from a Carepartner perspective – watching my husband go through it has been one of the most difficult things I have had to experience. I’m not sure where you are located but the health team we had in Toronto at PMH was incredible – the process is like fine art, every detail is outlined and followed, they provided us with a schedule so we understand what was going to happen and what the expected results were with each step. From chemo to radiation etc. Transplant day was a big deal and we all held our breath while it was happening – everyone in the room understand the amount of hope/dreams we had in the one specific moment. During the BMT I did take a leave of absence from my work (2 months) so I could be there to support him and naturally the amount of stress and anxiety this experience was going to but on us I would have been very effective for my employer.
The side effects can really vary and it took at least 4 months just for my husband to feel “normal” and I use the word very loosely – he was so weak for a very long time after transplant and everything we did or planned had to be thought out. While in the hospital he contracted an infection which forced him into isolation and it was very difficult as he was not allowed any visitors other then myself. Even after he was released we had to be very careful about who and what we did. Our biggest fear was Mark catching an infection again and because he was so immune compromised that we understood the danger of it all and remained very isolated while he gained his strength. GVHD (graph vs. host disease) is also very concerning as it is very necessary for transplant success however depending on the severity of it again it can be very scary and overwhelming.
As for how long BMT lasts – that is a tough question as BMT can be a cure for some and as you understand everyone responds to treatment differently. As for our experience we had a wonderful year and watching Mark slowly showing signs of his old self was wonderful, it was a year of no cancer drugs which was fantastic for him. Unfortunately we are currently going through a few challenges as his CLL has shown up again and we with our health care team we are currently working on a plan to see if we can get him back into remission and cancer free like he was after his BMT.
Hope this info was informative and will help you in making a decision. If you have any other questions please do not hesitate in reaching out to me, I understand how freighting all this is and it is wonderful to have a community to speak to.
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