Obinutuzumab (gazyva): Has anyone tried this... - CLL Support

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Obinutuzumab (gazyva)

Jemisavs5 profile image
18 Replies

Has anyone tried this treatment? Did you have any reactions? I would love to know more about it as my doctor feels this is the treatment for me in the upcoming months.

Obinutuzumab spelling corrected - Admin

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Jemisavs5
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18 Replies
maggiesgrandmom profile image
maggiesgrandmom

Don't hesitate, it really helped me!

newyork8 profile image
newyork8 in reply to maggiesgrandmom

Did you do it by itself and for six cycles?

maggiesgrandmom profile image
maggiesgrandmom in reply to newyork8

Hi, I had it in conjunction with Ibrutinib. It took me to the point of a plateau that could not be achieved by Ibrutinib alone. I had it for 6 months. Their website is good, it tells you about the risk of allergic reaction on first treatment. My only complaint was the jitteriness from the steroids they give you , lasted three days. Both of my doctors think the Gazyva put me in the mini remission I have right now. It is covered by my insurance. Might try it again when I need it.

newyork8 profile image
newyork8 in reply to maggiesgrandmom

Was it on a trial? Taken at the same time as Ibrutinib and you continue Ibrutinib? My insurance wont pay because Im under 65. Thank you!

maggiesgrandmom profile image
maggiesgrandmom in reply to newyork8

Hi It was the same time as Ibrutinib. I was 57 then and my insurance paid. Maybe you can appeal with the insurance co?

newyork8 profile image
newyork8 in reply to maggiesgrandmom

Ill try. Outside of trials I didnt know docs were doing this. Would you mind sharing at what medical center you received treatment? Thank you for your replies!

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Gazyva (obinutuzumab) is usually given in combination with an oral chemo therapy called chlorambucil, some doctors feel it isn't necessary and drop it it...

You need more information...

Here is the Gazyva website... for patients

gazyva.com/patient/cll.html

Gazyva is a CD20 monoclonal antibody the second generation type of Rituxan...

~chris

newyork8 profile image
newyork8

Curious as to your age. I'm under 65 so can't get it thru insurance. I read somewhere that people get up to 4 years of stable disease.

Wifecll profile image
Wifecll

My husband had this treatment one and a half years ago. In remission now. The treatment wasnt a walk in the park. But so worth it now. Had it with chemo. He is 49 now. Still feeling tired but life is good😀

MrMidnight profile image
MrMidnight

I had a six-month course of obinutuzumab in 2015 (along with chlorambucil). I had a rough time with it, mostly because the docs discovered I had clogged arteries at the same time and needed stents. After that, I was given a couple of infusions too quickly and my heart rate shot up to 130 during treatment. If you have heart problems, it's essential the infusions are given slowly. The FDA report says this too.

Jemisavs5 profile image
Jemisavs5

The doctor said the medication oninutuzumab will be given alone. He wants to do a bone marrow biopsy before treatment as I have never had one.

Rhetler profile image
Rhetler

I had severe infusion reactions, twice, to obinutuzumab. First time I ended in the hospital and having a mild heart attack. Seemed to complicate a pre existing coronary artery partial blockage. The second time was also problematic. Definitely will not be a third try.

Grieb profile image
Grieb

My 80 year old wife was treated with Gazyva (only) 2 years ago by Dr Sharman. She has mutated Ig and no adverse mutations. She had the full 6 month course. The first 2 doses were administered by Dr Sharman's magical IV nurses. The remaining doses were administered locally. There was no comparison in IV skill. For my wife, it was a walk in the park and her blood counts have been normal ever since.

I highly recommend going to Dr Sharmon--he knows what works and how to treat patients. It is your life and there can be no better investment!

Jemisavs5 profile image
Jemisavs5 in reply to Grieb

Where is Dr. Sharmon? What state? I am currently going to Dr. Rai. (Who is well known in the Leukemia world).

AussieNeil profile image
AussieNeilAdministrator in reply to Jemisavs5

Opposite side of the USA - in Eugene Oregon: cll-nhl.com/

Grieb profile image
Grieb

Dr.Sharman practices at the Willamette Valley Cancer Research and Treatment Center in Springfield Oregon. Springfield is a suburb of Eugene.

My wife has deep, slender, and hard-walled blood vessels that invariably collapse before a blood sample can be acquired. Not more than 1 in 20 nurses can tap a vein long enough to get a CBC sample. For this reason, I had ruled out the Gazyva option. I was convinced tha Gazyva would require surgical insertion of a shunt and my wife wanted no more surgeries!

Dr. Sharman said her blood vessels looked "juicy" to him. His IV nurses had no problem tapping a vein and continuing an IV for up to 6 hours. It was unbelievable!! My wife had a mild reaction to the first 200 mg infusion.-her ears turned red. The nurses stopped the infusion for about an hour and then resumed at a slower rate. One thing you are not likely to learn, from the literature, the IV reaction to Gazyva is almost always limited to the first, low dose, low dose rate infusion.

By prior agreement, my wife received the final 4 infusions locally in order to avoid the travel to Oregon. These last infusions required surgical insertion of a shunt. No local nurse could tap a vein for the required time. By the time of these infusions, my wife was feeling so much better she didn't mind the surgery at all.

I do not intend to say that Dr. Sharman is the only MD able to work this magic. My point is MOST MD's are frozen-in-time at the end of their formal training. DO NOT SETTLE FOR LESS THAN THE BEST!! You will be surprised at how easy it is to get treated by the best. They are the best because of their dedication and patient empathy.

CAGIULIANO profile image
CAGIULIANO

THEY TRIED TWO TIMES ABOUT 15 DAYS AGO AND HAD TO STOP.

MY HEART JUMPED TO 130 AND HAD SEVERE SHAKING IN MY WHOLE BODY.

NEW START ON JAN 3

LETS HOPE IT WORKS BETTER

MERRY CHRISTMAS

JimboW profile image
JimboW

It worked wonders for me from Full stage 4 to now normal blood chemistry. Now on a 5 yr test and see routine with me terrific oncologist and the VA to both go my gratitude. Good fortune to you!!

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