Under 50 and had FCR?

[Mnance]

I am 44 11q and unmuted. I had 18 nodes enlarged and started treatment shortly after diagnosis. I start my last treatment soon. I would like to hear from others who might be similar to me on how long it was until the CLL returned and you needed treatment again.  

Thanks!

[Rookie]

Hi!  I just found out that I am 11q and 13q and unmutated and two enlarged lymph node in my armpits.  I was told at the beginning that I was just 13q, so that was a little shocker for me to find out that now I am also 11q. Dang it!  I will begin treatment this next week . I am 58 diagnosed in July of 2014 and on W&W until now. I will be taking Imbruvica and have no idea what the future will bring. What treatment will you be starting? 

[Mnance in reply to Rookie]

I am on FCR. I have finished 5 of 6 treatments.

[Cathrun]

My husband has the 11q deletion, was diagnosed at 47 and was immediately started on FCR in 2012. He responded very well but at his checkup in January of this year his Hgb was down to 8.2 and he had many bulky nodes causing discomfort. His remission was about 3.5 yrs. He had 2 rounds of Bendamustine and Rituxan which shrunk the nodes but did nothing to clear out the marrow. Doctor switched him to ibrutinib a month ago and we are now seeing an upward trend in his Hgb. He's feeling great, too. 

Wishing you all the best for a long remission!

[Hidden]

Progression free survival (PFS) or how long unmutated deletion 11q patients are in remission vary considerably from person to person. One of the key factors is how much residual CLL is left in the bone marrow. Minimal residual disease negative (MRD-) or less than 1 in 10,000 lymphocytes is a malignant B cell gives the the best chance at longer remissions, and very low minimal residual disease positive is better than higher amounts of residual disease. Practically speaking some of the older clinical trial results for FCR and BR. showed median PFS for unmutated deletion 11q in the 30-40 month range. But this was based on FCR/BR types of treatment. 

[Hidden in reply to Hidden]

I meant leukocytes in my reference to MRD-