Yesterday was another huge milestone on our BMT road, Day 100 - when we stared back in Nov.2017 this day seemed like a life time away.
I’m so pleased to share with you that Mark has continued to progress very well and blood counts are normal and steady. The results of his bone marrow biopsy at Day 60 were overwhelming as there was 0% of CLL present - we are cautiously optimistic as we know the road is still long.
Mark is also really enjoying not having to take any treatment/meds for the cancer and has really noticed a bit of the “chemo brain” or “fog” being lifted. He is slowly starting to go out a little more which is helping him to feel less isolated.
Again I thank you for your time, love, encouragement and your tremendous support.
The reason we decided to post was to hopefully offer hope for those who sometimes feel there are no other options left for them. The decision for us to go for BMT was a 7 year process. In reading about our experience we hope we could alleviate some fears in helping others who will be faced with the same decision.
Our Hematologist presented it at the very start because Mark was young at 45. And we were very set against it - however it became our last option and the decision was made for us, his 2nd relapse was very aggressive and he was already showing signs of failing on venetoclax after a few short months.
It has been very tough on both sides - when I post it is from a CarePartner’s point of view which we understand is a very different experience then the patients. And having the right support is so important and this HealthUnlocked community is certainly part of my circle of support - CarePartner’s are special people.
Thank you,
NMMP
Written by
NMMP
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Great news. On to Marks first rebirthday! The experience of caregivers is very different from that of patients. I think their role is harder - sometimes because they are trying to process all of the medical information while also figuring out the emotional and physical needs of the patient. Looking forward to more positive updates!
Wonderful news. Thank you so much for sharing! My doctor has said that BMT will likely be the treatment path for me due to high-risk markers, so hearing from those who have gone through the process is very important to me.
I hope that the news you receive in the future will all be that the CLL is gone for good, and that the treatment "fog" dissipates to a bright and happy long life together for you both.
Thanks for posting this as I have discussed this with my consultant I'm on ibrutinib 1st treatment and it is his hope that this will be my best option as I'm only 50 but that if all else fails then BMT would still be an option for me so this is very encouraging
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Just got word from the doctor in my FISH test result
Just got MRD negative 🎉
Don't give up just enjoy each day!
Just got my FISH results
