Treated for CLL , one year ago

[tropicsurvivor]

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.

[Justasheet1]

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

[CLLCalifornia-USA]

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)

[PlanetaryKim in reply to CLLCalifornia-USA]

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

[CLLCalifornia-USA in reply to PlanetaryKim]

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)

[PlanetaryKim in reply to CLLCalifornia-USA]

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

[Cllcanada Top Poster CURE Hero in reply to PlanetaryKim]

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..

[PlanetaryKim in reply to Cllcanada]

thanks for the info, chris.

[tropicsurvivor in reply to CLLCalifornia-USA]

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

[CLLCalifornia-USA]

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)

[PlanetaryKim in reply to CLLCalifornia-USA]

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!

[MsLockYourPosts Passed Volunteer]

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.

[slyford]

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.