Non-hodgkin's Lymphoma Support Group

Non-Hodgkin lymphoma is a type of cancer arising from lymphocytes, a type of white blood cells. It is so called because of its distinction from Hodgkin's disease, a particular subtype of lymphoma. It is in fact an overarching term of many different forms of lymphoma, each with individual characteristics. Most cases start with infiltration of lymph nodes, but specific...

187 Members

367 Posts

0 Online

icrazyhorse 06/13/2013

Hello Folks

My wife who has Stage 4B fNHL just started taking Ibrutinib as a single agent as part of a Phase 2 clinical trial. I'd appreciate hearing from anyone that has experience with Ibrutinib.

lexisgirl 06/13/2013

I had to Google that one. Looks like it is still waiting FDA approval although it is in clinical trials....obviously since she is in one. Sounds like it has shown promise for other types of B Cell cancers.

I am curious, I thought RCHOP was the treatment of choice for Stage 4 NHL. What made her doctor decide to not go that route?

I hope she does well with it and it is the ticket to health.

icrazyhorse 06/17/2013

Thanks Lexisgirl. She had 6 cycles of R-CHOP in early 2012 then 6 cycles of BR in late 2012-early 2013. Unfortunately PET scans showed the fNHL was still present. Some good news, though - a June 2013 bone marrow biopsy showed NO fNHL! Hurray!

lexisgirl 06/26/2013

I just happened to run across this article today and thought I would share. It sounds pretty promising. How is your wife doing?

http://healthland.time.com/2013/06/26/no-more-chemo-doctors-say-its-not-so-far-fetched/#ixzz2XKsXf2dJ

lexisgirl 06/26/2013

I should have added....is that the same drug?

icrazyhorse 06/29/2013

Thank you Lexisgirl. As I understand it Imatinib is used to treat chronic myeloid leukemia whereas Ibrutinib (that Gretchen is taking) is in clinical trials for mantle cell lymphoma (MCL) and follicular NHL. Both are monotherapy drugs targeted to a particular type of blood cancer.

lexisgirl 06/29/2013

Thanks for clarifying they aren't the same drug. Boo! How is Gretchen doing?

icrazyhorse 09/11/2013

Last week Gretchen was removed from the Ibrutinib Phase 2 clinical trial after completing four 3-week cycles. When compared to the baseline June CT scan, the early September CT scan showed progression. She is not taking any cancer medication now pending a revisit to her oncologist in early December. Please pray for her.

lexisgirl 09/11/2013

December? Why so long with active cancer? I know fNHL is slow growing so you are probably fine but I would be uncomfortable waiting if she is having symptoms that are uncomfortable. Of course, "Watch and Wait" is a valid treatment plan if you and your doctor are okay with it. Maybe that is what she is doing?

icrazyhorse 02/14/2014

Since she showed improvement in her December 2013 CT and labs, next week my wife is being put back on the Ibrutinib phase 2 clinical trial. In her case it took about 6 months before the Ibrutinib began to work. Anyone have any Ibrutinib experience?

deleted_user 02/17/2014

I tell everyone to read "cancertutor.com" and "americanaci.org" and sites linked therein. Is this info true? I don't know, but I 'm trying to detox and strengthen immune system. Eliminate junk and processed food, more organic, Budwig Protocol, much higher vitamin doses. Eliminate artificial sweeteners.

God Bless

Lymphoma12

Join the Conversation