Was initially down for a potential stem cell transplant. However, did not quite reach remission with blasts down to 13% from 65%: a significant drop but not quite the desirable <5%. Consultant said my best option was Azacitidine and maybe in combo with Venetoclax. Not sure how to take this news. Part of me, glad that I can have the treatment as an outpatient and blast count is quite low. The other part disappointed that stem cell transplant appears no longer to be an option.
Be interesting to hear if anybody else has had a similar experience.
Stu
Well, what a journey! Lost remission, about 3 months ago, put on a trial and remission again. Feel I have been a bit of a jammy git. In between remissions, blast count stayed at a minimal 10-12%. A sort of lingering leukaemia, that doesn’t seem to merit an “acute” label. Not complaining x
Good to hear from you again….. being a jammy git and getting into remission is ok in my book….. let’s look for it to hold you hammy git
Well that trial didn’t work. Blasted blasts have blasted their way into my life, after another remission. Looks like they are putting me on another trial. Don’tfeel poorly or anything, just ready for another fight and a little frustrated.
Oh the blood cancer journey is full of bumps - looking for a good report soon.
Hi Stu,
My dad was diagnosed three weeks ago and is on the Venetoclax Azacitidine combination targeted therapy. He's 69 and now living with me whilst he has his treatment. Really hoping he gets his levels to a point where SCT is possible.
Your upbeat updates really helped me today! Long may you continue to be a jammy git! You deserve it
Hi Jaheen I see that your dad is possibly going down the Stem Cell Transplant (SCT) route. I have had two Allo (donor) SCTs for my NHL so do consider joining our dedicated Stem cell transplant group as it’s a good place to connect with others who have walked the unique treatment journey both as patients and carers.
Thanks Mike. I've just read your journey. Wow. What amazing humans you and your family are! Well, everyone involved. Totally inspiring and I love the mantras at the end ️
Just wanted to update you that dad has done amazingly well and has a provisional admission date of 24th October for his Stem Cell Transplant!!
He turned 70 in July and it's been quite the journey and it's not over yet ;) Will look to join the SCT group now.
Hi again Jaheen, this is great news indeed….. well done your dad.
Do come over to the Stem cell transplant group and introduce your dad and yourself and let us help you both navigate the next part of the journey ((hugs))
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