My 20 years with CLL: Diagnosed with CLL in 199... - CLL Support

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My 20 years with CLL

FLSurvivor
FLSurvivor

Diagnosed with CLL in 1998 and spent the first six years in Watch & Wait. There was not many chemo options in those W&W years. In 2004 with my whites at 90,00, Fludarabi + Rituxin was completed but whites were up again in about seven months. Between 2005 and 2014 six more sessions were completed. Fortunately, I never had any serious side effects. My last chemo in 2014 was Rituxin + Treanda that gave me a partial remission so it's back to W&W. Years of chemo have left me with the a low immune system that is a hassle , low platelets (<50) that doesn't allow for a port, and the most aggravating effect is poor veins for the ongoing blood work my oncologist requires. Fortunately, I do not suffer from the typical old age ailments of an 79 year old.

13 Replies
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Cllcanada
CllcanadaTop Poster CURE Hero

Welcome... I'm another '98er!

~chris

You’re a warrior. Welcome.

Jeff

Only a 2001’er and feel like the baby of the squad 😂

It is good to hear the various stories of treatment and experience from my community friends. While many treatments it sounds like you enjoy life and are positive, long may it continue for you.

UK Sparky

Jm954
Jm954Administrator

Wow!

Personally I love to hear from folk who have had CLL for 20+ years and had lots of treatments, it gives me hope and some days I really need that.

Likewise to hear stories of long survival gives hope to us all. Its easy to go on this site and fear the worse as you tend not to hear much from those who have had CLL for a long time.

cllady01
cllady01Volunteer

Feb. of 2001, so 2 years your junior, but no treatment to this date.

Sushibruno
Sushibruno in reply to cllady01

ABSOLUTELY AMAZING!!!👍

Congratulations, you really are a survivor and give the rest of us hope.

Netty

Thank you for your story. It gives me hope and strength.

I congrats. Did you change your diet at all during that time and moving forward ?

I was diagnosed about same time with CLL. Was treated at MDAnderson with FCR and was in remission for 15-16 yrs. I have high praise for MDA. Now on my 4th mo taking Ibrutinib.

I was in second group of three groups who received FCR. Dr. Weirda was my dr. I have been monitored ever since by dr. In my area, and began Ibrutinib four months ago as came out of remission some time ago.

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