Zydelig (idelalisib) my wonder drug

I'm reposting my story in hopes of catching up with more folks that have been using this drug. I've been 8 years living with Follicular Lymphoma and have had two series of chemotherapies. The first gave me 5 years remission, the second worked but my body couldn't recover quick enough to take successive treatments. I landed in limbo, with no apparent treatment, hence my admittance to a trial with Zydelig. I've been living more or less normally for almost two years. If anyone out there is using this drug, I'd love to hear from you.

Dave in Canada

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  • In November 2011, at the age of 65, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 3 years she progressed after R-CHOP (6 cycles), bendamustine/rituximab (6 cycles), and Ibrutinib (12 months). She took Idelalisib/rituximab as her fourth treatment. It worked great for 14 months then a PET scan showed she progressed again. She is now in an NIH CAR-T trial and has been in complete remission for 11 months. Current CAR-T clinical trial data shows that once a follicular lymphoma patient achieves a complete remission they stay in complete remission.

  • HI Dave in Canada. I'm in Canada too. I haven't heard of your wonder drug, but I sure hope it works for you. Those of us with NHL are apt to see it return, so a wonder drug would be ...well...wonderful!! :)

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