20 years with CLL, just found this group

[PerfectPurple]

Hi all, I'm 79 yo with a WBC of around 100, mutated, a few slightly enlarged lymph nodes, lymphocytic colitis, and chronic fatigue. No treatment yet except regular infusions of IGG to pump up my immune system. I'm interested in any of your experiences with symptoms and treatments. Very glad to have found this group.

[PlanetaryKim]

Welcome Perfect Purple. And good for you for making it 20 years without treatment! I have been on ibrutinib 2 years. Was very sick before starting and am good now - everything normal.

kim

[PerfectPurple in reply to PlanetaryKim]

Thanks for the welcome, Kim.

[seelel]

As the lymphocytic colitis and fatigue are linked, I guess you are faced with the question: Would they resolve if the CLL were treated or would it be better to treat the colitis and leave the CLL for some more years of indolence?

It may be worth a discussion with your doctors (if you haven't already).

Best of luck.

[db601 in reply to seelel]

I second that motion.

Hi PerfectPurple!

Congratulations on 20 years out & no treatment. As an 11q *mutated * - I have not escaped symptoms or treatment.

Maybe Dr Rai or another CLL expert would suggest drugs for you to alleviate your current symptoms?

You could very well live to be 100 and enjoy a healthier 20 years! I hope so. You sound as though you got *the good kind*!

Good luck.

~ Diana

[morepork]

Just wanted to add a welcome from NZ down here in the South Pacific.

I was diagnosed in 1996 , later added a 17p- label to the mix but Watch and Wait stood me in good stead for many a long year, till Ibrutinb came along 2 1/2 years ago. I wish you well.

Stephanie

[PerfectPurple in reply to morepork]

I guess I am not watching this site closely enough because I just found your reply to me. I am interested in what triggered putting you on ibrut? Did something in your counts change? My docs are all against any treatment for me, including my CLL specialist. Thanks for any insight.

Max

[morepork in reply to PerfectPurple]

Hi Max

What a nice surprise after 3 months. Good question about the triggers - this is a bit long winded. My counts were rising very slowly over the years from 1996, lymph counts got to about 260,000 if I remember, spleen slightly enlarged over time, but no obvious enlarged nodes. I was happily employed until 2010 also, so never bothered much about the CLL after all the usual research at the time I was diagnosed. The fact that I have the TP53/17p- genetic pattern meant that FCR would not have been an appropriate treatment if I needed treating.

My IG's were falling, my platelets also but I felt OK. My haematologists were offered the chance to receive Ibrutinib supplies directly from the manufacturers back in 2015, for those with that deletion who had failed previous treatment and that's when the haematologist I deal with saw an opportunity to get me involved, should I consent. (I had not been treated so there was a work around) I COULD have gone on without treatment for who knows how long but the free Ibru offer was for a short time only and closed soon after I joined. It guarantees ongoing Ibru supply to those who were part of that group. That's the story for now. Hopefully you may never need treatment, or not for a long time. Best regards

Stephanie

[PerfectPurple in reply to morepork]

Thanks, Stephanie, for the info. My WBC is still around 100,000 and my spleen is normal size. I have no involved lymph nodes except a couple in my neck which have remained constant almost since diagnosis in 2001. My CLL expert doc is Dr. Rai (the father of the staging system most widely used.) He does not feel that I am near needing treatment so I am staying with my local onc/hem doc who also agrees. I was wondering if any of the side effects of all those lymphocytes all over my body would benefit from early treatment with something like Ibru. I have pretty serious lymphocytic colitis but know of no other organs being affected. Dr. Rai says that if they stick a needle in me anywhere, it will come out loaded with lymphocytes - but not to worry about that!

Glad you responded so well. I'm pretty sure they are going to keep coming up with new treatments so when I am ripe, there will be something available for me. I am almost 80 so some treatments are too tough on the body for someone my age. But I am aiming for 100!

Continued good health,

Maxine

[Big_Dee]

Hello PerfectPurple

Yes this a great place to visit. All CLL patients should be informed of this web site. Alas no doctor wants to suggest Dr. Google as a reference for help. I just happen to stumble on this site when searching Dr. Google. Welcome you will find a lot of help here. Blessings.

[SethB34]

This is a good, informative place. Glad to have you here. People are helpful, particularly the volunteers.

[J_88]

I think it's awesome that you have had CLL for 20 years.