It has been recommended by my specialist that I have a six month round of treatment with the above two drugs. One month on the tablets, one month intravenous, for a period of six months. I live in Canada. Has anyone else had experience with these drugs. If so, would you mind sharing your experience with me. Very much appreciated. Donna The photo is a painting of mind "Medicine Woman"

10 Replies

  • Yes, FR is a preferred treatment in B.C., I had it in 2012. The first infusion of rituxan was a bit wobbly, some rigors... but after that it was on the Skytrain to the hospital... did the treatment and if it was a nice day would walk back usually a few kilometres...

    It is quite an easy treatment in the scale of things and after the 6th round I felt 20 years younger...

    One hint..open the tiny fludara pills from the blister packages over a large mixing bowl... they can fly around, and looking for them under the stove is a pain...

    Wishing you all the best...


  • Chris -- Yes .. I am in BC. Thanks so much for your reply. Did the treatment put you into full or part remission? How are your numbers now? Did you gain weight? That is a huge issue for me at the moment. Questions, Questions! Thanks so much, Chris.

  • I had no weight problems, some water retention, some diarrhea for a week every round... but I was also quite physically active...

    I got a partial remission... unfortunately I became refractory to fludarabine and to some extent rituxan by round 5

    My remission was rather short...unfortunately


  • I'm so sorry to hear that, Chris. How are you feeling now, and is there more they can do for you?

  • It is important to know that I'm NOT typical... if you click on my name you can read my rather lengthy treatment profile, click below the maples image and it will expand.

    I'm fairly reduced at the moment , my hemoglobin is falling and waiting to start treatment in December with idelalisib and rituxan, which was approved in the nick of time... I'll be first in Ontario...but my doctor has clinical trial experience at Dana-Farber with Zydelig (idelalisib).

    So we will see...


  • Chris,

    I am in awe of the trip you have travelled with CLL.

    I just had the thought of the old watch commercial, "takes a licking and keeps on ticking."

    I, having had no treatment, am beginning to recognize brain fuzziness and others speak of it also. You do not seem to have that difficulty, though I know from your profile you have other difficulties (not that any of that is apparent from your brilliant contribution to this site.

    Wishing you the best with the new treatment and prayers for you AND that fabulous Dr. you have.

  • Thank you very much...

    Many things, I have learned, are attributed to CLL, in fact most oddities, but real involvements outside the usual suspects are quite rare...

    It was thought for years that CLL didn't effect the brain, but it is now believed it may in some patients, based on autopsy data.

    CLL is one of the most systemic cancer you could possibly get, and much is still unknown, so anything is possible...


  • Hi Chris, I've been using Zydelig for 18 months now to treat NHL. I'd previously received two rounds of chemo. First, gave me five years of remission, second, road-blocked because I couldn't recover quickly enough. Zydelig has given me my life back, however, it's expensive and I worry that my life time allowance with Blue Cross will run out. I was about four months free with the trial. One of my worries is stomach issues associated with Zydelig. I'd love to hear what your oncologist has to say. Some accounts suggest accompanying diarrhea may be super nasty. So far I'm good!

  • That's good to hear you are doing well! Which NHL are you being treated for?

    The many areas of adverse events are colitus, pneumotitus, CMV reactivation and liver toxicities... shingles and tumour lysis syndrome... and the ever present possibility of a second Richter's transformation.

    Since I only have a semi::colon, the bowl issues are at the top of my list of concerns... things are fluid at the best of times... however my doctors aren't too concerned... I will be wrapped in a number of layers of prophylactics... so just call me Condom Man 😄


  • Oh my! I wish you all the very best, Chris. Do keep us posted.

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