Zydelig (idelalisib) my wonder drug - Non Hodgkin's Lym...

Non Hodgkin's Lymphoma Friends

1,799 members805 posts

Zydelig (idelalisib) my wonder drug

R-16728 profile image
2 Replies

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

Written by
R-16728 profile image
R-16728
To view profiles and participate in discussions please or .
Read more about...
2 Replies
wmay13241 profile image
wmay13241

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.

BelindaTupper profile image
BelindaTupper

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!! :)

Not what you're looking for?

You may also like...

Zydelig Reaction

Hi Everyone- My name is Minkido and I was diagnosed with NHL in 2008. I had Retuxan and was...
Minkido profile image

Relapsed Mantle Cell Lymphoma--I'm new here!

My name is Gail and I am 66 years old. I was diagnosed with MCL in February, 2008 when I was 58...
Gail2050 profile image

Did you feel ill before diagnosis and how long did it take I am so unwell

I haven’t been diagnosed with lymphoma but have many symptoms and am very unwell it’s so hard...
diww1 profile image

Nearly there

I'm 50 ad was diagnosed with follicular NHL stage 2 in June. I've already had 6 cycles of R-CVP and...

My experience with NHL

Hello Everyone , my name is Rose And I have NHL , and have been in remission since July 2016 . I...
R615-r1122_ profile image

Moderation team

krayburn profile image
krayburnPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.