Hello all CLL curios. I have just had my latest 6 monthly ‘Watch and Wait’ blood tests and Flair trial assessment 3 years on from commencement of FCR chemotherapy. As I was an avid reader and regular contributor of posts on the build up and during my Chemo - drawing great strength and support - I felt I owe it to the forum to offer hope and support for all going through, or waiting for CLL treatment. My bloods are now ‘boringly’ normal (with a Lymphocyte count of 0.6) and I am still, happily, MRD - negative. In other words I am still in complete remission with no trace of the disease present. I can’t say that the chemo has not left a bit of a legacy as I do suffer with Psoriatic flare ups and/or Psoriatic/Rheumatoid arthritis in my joints. However, this may not even be chemo related and just an unhappy coincidence. Even if it is related, I am fully aware of what the alternative would have been.
I hope this post is, in some way, reassuring to those on the W&W list or looking at treatment soon. There is hope out there and new treatments are being developed all the time. That’s it from me for another 6 months and I wish you all good outcomes of any treatment you may have.
Plot added showing that IgHV mutated folk who achieve MRD negative status on FCR have an 80% chance at achieving 15+ years of progression free survival. See my reply below - Neil