Started Clinical trial-obinutuzumab+ venetoclax - CLL Support

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Started Clinical trial-obinutuzumab+ venetoclax

Elam profile image
Elam
9 Replies

Started 3 days ago. Included bendamustine due to lymph size. Day before treatment WBC at 173. After 2 treatments of bene. + obib. WBC at 17. Uric acid up over normal but kidney functions OK. Not much sleep 1st 2 nights but feeling better now. Thoughts and experience with those in this trial appreciated.

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Elam profile image
Elam
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9 Replies
LovecuresCLL profile image
LovecuresCLL

On O plus V, only six weeks into combination and going extremely well.

PlanetaryKim profile image
PlanetaryKim

Good luck to you, Elam. Great to see that drop in WBC!

AllanJardin profile image
AllanJardin

Good luck to you.

Smakwater profile image
Smakwater

Elam,

Is your trial O + V + B, or O + V?

Can you provide an NCT number for the trial?

JM

Elam profile image
Elam in reply toSmakwater

The number is M16-788, Phase 3b. It is obin + bene for about 2 months for debulking, then obin with a ramp up to vene for 5 months, then just vene for 7 months.

Smakwater profile image
Smakwater

It is very similar to the trial I am in, however, we are debulked with either bendamustine or obinutuizumab rather than both. I was given obinutuzumab.

I am 59 years old with no co-morbidities and considered fit. My prognostics are unmutated IGHV, CD20, CD38. I am at 8 months into the trial and currently at 4 month into 400 mg venetoclax alone.

The initial debulking produced some mild adversities, however, my CBC numbers returned to normal at about 6 weeks, and my fatigue disappeared.

I noticed only mild adverse conditions with the venetoclax ramp up, primarily diarrhea and nausea. I experienced a creatinine level risk caused from lack of hydration due to increased exercise with no increase in water intake.

Since the time I achieved full dose venetoclax until now, I would say that my overall health has improved greatly, however, I have intermittent aggravations with dry cough and productive sinuses.

I also have some joint pain and muscle cramps which I cannot accurately attribute to the drugs.

I developed neutropenia at 4 months on venetoclax, and I was given a G-CSF (Zarxio) which increased my ANC from .97 to 6.7. The G-CSF injection was administered 4 1/2 months ago, and my ANC is now down around 1.0.

I am scheduled for a bone marrow biopsy next week to determine progress.

I would offer that it is very important to drink between 60 and 80 ounces of water during a moderate activity 24 hour period, and increase the intake appropriately with increase in activity or environmental changes.

All the best to you with your treatment.

JM

thompsonellen profile image
thompsonellen

Did O + V + I trial. Started 3 years ago. Last official follow up is this Wednesday. All is well. First hour of obin infusion not fun, and hospitalized for first 2 V doses because I was very bulky, but otherwise uneventful. You'll do great.

acanfill profile image
acanfill

Elam,

I was scheduled for obinutuzumab & bendamustine in January, but 2nd opinion from md Anderson in November changed that. Still haven't been treated, Dr

Wierda said blood test in 6 mos. return next year for appt.

Hope you are doing well...

Drew

Elam profile image
Elam

An update on my progress. First 2 treatments hit me pretty hard, but 3rd better. WBC down to 2.8 after 3rd. Uric acid elevated but now back to normal. Nutr# at 2.2, need to watch. Biggest issue has been digestion issues (constipation), but that is better. Sleeping night after treatments an issue I think due to steroids. All in all, not too bad and doctor pleased with numbers. Hoping I won't require the bendamustine in the 2nd cycle. As I read the trial description, I think that is possible.

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