CLL Remission

[Kmegood]

I have been in remission for just over 5 years since finishing treatment in 2014 of FCR. Lately my lymphocytes and WBC are going up double in about 2-3 months so my Hemotologist had me do blood work for possible relapse . So now I wonder what the results will show . These test like molecular take long time to have results . My Lymphocytes are at 12.6 and my WBC are at 18.7. My doctor said They don’t do chemo now for relapse patients . There are pills which I have been reading about on HealthUnlocked . There are so many posts positive and negative that’s it’s very confusing . By beginning of July I will know whether I need to start new treatment.

[GMa27]

I just finished 9 months ago FCR after 3 cycles. Doing good. I hope to get at least 5 years. I was 13 q mutated and just under 65. What were ur markers/age?

Hopefully you won't need treatment for awhile. Will give you time to get second opinion. 💕

[Kmegood in reply to GMa27]

I don’t know my markers . It’s been just over 5 years since I finished FCR. I am 70 now

[GMa27 in reply to Kmegood]

When u first got dx they should have done tests to determine you could have FCR. Usually it's 13 q mutated under 65.

[CLLCalifornia-USA]

I received nearly 6 years of remission after FR, then BR which I couldn’t tolerate and now Ibrutinib. January 2017 I started Ibrutinib and am doing great. I take 3 pills at 7:00 pm and lots of fluids throughout the day. No one would ever guess I have CLL/SLL. Stay positive, there are so many treatments available to us. Kindness always. Sally

[Kmegood in reply to CLLCalifornia-USA]

Thank you so much for the confidence . Best of luck and health to you .

[GMa27 in reply to CLLCalifornia-USA]

So rare that FR and BR is recommended for same markers. Can u share what ur markers are?

Awesome u feel so well. So did I and still do after FCR.

[CLLCalifornia-USA in reply to GMa27]

Unmutated, Trisomy 12 is all I can remember right now. I’m not at home where I can look it up. Visiting my daughter and son in law in Southern California. Sally

[GMa27 in reply to CLLCalifornia-USA]

Those markers are not usually given F or C.

Enjoy ur trip!!