Log in
CLL Support Association
11,672 members17,853 posts

Treated for CLL , one year ago

Hi.

I am a male, 57 year old, in good physical condition, and diagnosed with CLL, 1 1/2 year ago.

I have been treated for CLL, with FR regimen for six month, one year ago,

What I can expect now? after first anniversary of my treatment.

12 Replies
oldestnewest

Tropic,

Hopefully, a remission of many years. You need to provide more info.

Actually,

Have you asked your Dr. this question? You were treated 6 months after diagnosis but describe yourself as in good physical condition. That's pretty quick. Do you have a CLL expert on your team?

Welcome.

Jeff

5 likes
Reply

Congratulations! After 6 months of FR, I enjoyed five plus years remission. I'm now on Ibrutinib and doing just great. Hope you continue your good health. Sally (USA)

11 likes
Reply

Congrats on getting 5+ years of remission from FR, Sally. That fills me with hope since I will in all likelihood be starting FR very soon. I would like to feel it's going to be worth it (although I know everyone responds differently). ~kim

3 likes
Reply

Hopefully you'll never need another treatment and maybe if you do there will be a cure by that time. FR was worth it. I had a great remission and traveled immensely during that time. Keep us updated on your progress. Best of luck. Sally (USA)

6 likes
Reply

Did you have any serious problems/side effects while on the FR, Sally? I must admit I am a bit apprehensive about starting chemo. Are both drugs administered by IV infusion? Or is fludarabine a pill? And one final question: if you had low red blood cells or platelets or neutrophils at time of starting treatment (like I do), were they able to rise at all during treatment? Or was the bone marrow suppression of the FR too great to let your numbers normalize until after treatment was over? ~kim

1 like
Reply

Fludarabine is infusion or pill (Fludara)... in the U.S. it is infusion, other places pills for 5 days.

Very small, size of a grain of brown rice.. open the blister pack in a mixing bowl...

Dosing is based on body mass, so you will likely have 7-10 pills daily...

I wouldn't speculate that FR will be your treatment frankly, until you see the CLL specialist, you may be treated in other ways for cytopenias..

3 likes
Reply

thanks for the info, chris. :)

Reply

Thanks for answer, and your insights, I wish all the best for you too !!!

Reply

Both were given intravenously. At the time of starting treatment, my red blood cells weren't low. Each month, the first three days of treatment I would do pretty well but become tired and quiet on day four and five. They had to run the Rituxin much slower on me than other patients, because I initially had a reaction. To deal with the nausea I was given Ativan. It knocked me out so that I could sleep off the nausea. Drinking as much water as you can makes a huge difference. I always had water or fluids nearby. I was only able to tolerate 5 months of FR, but that was enough for the remission. Neutrophils, platelets, WBC and my other labs were not bouncing back. The five months were worth it. After a couple of months I felt terrific. I was feeling so good, I almost forgot I have CLL. Best of luck, Sally (USA)

6 likes
Reply

Thank you very much Sally for this info. It helps gives me a picture of what may lie ahead (although everyone responds differently, of course). And once again, congrats! :)

1 like
Reply

In the US both F and R are usually infusions. In many other countries the F is pills. I think that's the one Chris warns people to open over a big bowl so you aren't crawling under furniture to chase the ones that escape.

3 likes
Reply

My husband was diagnosed over 2 years ago with CLL, had a 6 month intensive chemo course and is now just taking tables and feeling great except for getting tired easily and aching which is all part of CLL. going on this experience I would hazard a guess that you will now be in remission and can enjoy life. we are doing everything we can now whilst our health is good and looking forward to a lot more fun.

1 like
Reply

You may also like...