Obinutuzumab anyone?: I am thinking about... - CLL Support

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Obinutuzumab anyone?

eoravillo profile image
6 Replies

I am thinking about participating in a clinical trial which will compare ibrutinib+obinutuzumab+venetoclax to ibrutinib+obinutuzumab. I have heard of ibrutinib+venetoclax but not obinutuzumab. Has anyone had any experience taking this?

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eoravillo profile image
eoravillo
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Jm954 profile image
Jm954Administrator

No experience of Obintuzumab but reports of it are good and some evidence it's better than Rituximab in CLL. Short report here: medscape.com/viewarticle/82...

Sounds like a win/win clinical trial as both arms look good.

Cammie profile image
Cammie

I was asked if I wanted to join a trial for obinutuzumab run by Professor Peter Hillman at Leeds. This was to see if infusions after FCR would give longer remission or even complete remission.

So it is well tried and tested with good results. I didn't go on the trial due o the side effects I suffered during FCR and wanted a bit of normality after treatment rather than continuing to get infusions for another few months.

Like all trial decisions it's very personal and you should discuss the possible side effects with your medics or trial supervision prior to make no any decision. However as posted previously above many trials offer a win win situation for those of us where standard treatments are unsuitable or unavailable.

Best of luck

Geoff

newyork8 profile image
newyork8

Obinutuzumab is name brand Gazyva. I am taking it. So far so good. More powerful than Rituxan.

eoravillo profile image
eoravillo

How long have you been on? Any side effects? Is your treatment front line or relapse of CLL?

mgh348 profile image
mgh348

I have read of several people on ibrutinib and Gazyva (obinituzumab) having the experience of a very rapid response in ALC reduction.

patsullivan profile image
patsullivan

Started Obintuzumab monthly infusions (6) with 3 full dose ibrutinib daily at UCSD clinical trial 12/5/2016. (After 3 years W&W my CLL proliferated into SLL massive amount of lymph tumors).

A few days after starting trial my lymph’s melted and started to disappear. I stayed at Optimum Heath Institute in San Diego for the 2 weeks beginning the trial which greatly help eliminate the toxic debris leaving my body. Minimal reaction to the meds and bone marrow biopsy went from .50 to .03 within a year. Have had fairly mild reactions of itching scalp,rash,fatigue, and headaches the past 1 1/2 years and currently off all meds doing Watch & Wait again. Was pretty frustrated trying to get more information on my various drug reactions as so many CLL patients complain .

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