CLL Support Association
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relapsed CLL symptoms and Ibutrinib dosis

I have been in remission for almost two years.

Which are the symptoms I should watch, in order to know that CLL has started to progress again ?

How a CBC does look like when the disease is back?

And another question:

which is the standard treatment for relapsed CLL, for a person already treated with FR ?

In case of Doctor recommends Ibutrinib, how large are the dosis ? 140 mg per day, or three times/ 140 mg per day ? and for how long? since my insurance will partially cover for my treatment.

Thanks a lot for the answers and good luck to everybody.

Tropicsurvivor

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CLL treatment with FR, which I had, rolls the clock back, so you look at the same factors for treatment as you did before FR... generally.

Imbruvica (ibrutinib) would be a good choice second line, it is a drug for life or until it stops working, or side effects become difficult to manage. Also consider a clinic trial, there are many with second generation drugs...

CLL recommended dose is 420 mg.. and now it is 3 capsiules a day, but this will change to one single 420mg pill in May.

The cost is over $100,000 a year per patient... and the drug company and other groups offer some copay relief in the U.S.

Talk to your doctor and clinic support staff, well before you need treatment so they can research the best option for you...

~chris

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In addition to out of normal range lab values, the end of my remission was preceded by hospitalization for a serious UTI combined with an intestinal infection. I had been working outside in the heat with less than adequate fluid intake. Still wondering if I could have avoided it with sensible precautions. 😳

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Symptoms that I experienced after being in remission for a couple of years after a round of FCR were: tired, evening chills and feeling as if I had the flu, a little bit of night sweats and just not feeling well. The CBC will show elevated white count and Lymph’s (it did for me). Before Imbruvica was approved for CLL I did a round of Rituxan and then started Imbruvica, have been on it for 4 years. Side effects has been tolerable. I went back in remission after 90 days, however recently my labs are coming back out of wack and I’m getting some symptoms. I’m now seeing my oncologist monthly and getting gamma globulin infusion every 4 weeks. Wish you the very best, enjoy life and just listen to your body. God bless!

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