Gazyva (obinutuzumab) treatment

[WinJ3]

My Doctor is recommending Gazyva (obinutuzumab) treatment for my CLL. I heard that some people had good outcomes. How long would one expect to be Cancer free after treatment before a relapse? (Example 1 year?, 2 years?, 3 years, etc.) Any information will be helpful. Thanks

[Cllcanada Top Poster CURE Hero]

Will you also have chlorambucil? It this your first treatment?

Remission vary for each patient, very difficult to say how long you will get, but there are some that have had remission anecdotally of 2-3 year's.

Here is a patient resource

gazyva.com/patient/cll/abou...

~chris

[WinJ3 in reply to Cllcanada]

Thanks!

[WinJ3]

This will be my first treatment. I will only be treated with obinutuzumab.

[Cllcanada Top Poster CURE Hero in reply to WinJ3]

Not much information, but anecdotal on Gazyva as a single agent...it was used in clinical trials with chlorambucil.

A few people here have been treated with it alone, but often second line... which is a bit different.

~chris

[WinJ3 in reply to Cllcanada]

Thanks CIIcanada

[Jm954 Administrator]

It would be unusual in the UK to be treated with Obintuzumab only but treatment decisions depend on your age, fitness levels, other illnesses, cost and your own wishes.

It's unlikely to give you a deep remission on its own. What do you want out of your treatment?

[WinJ3 in reply to Jm954]

Thanks Jm,

I will hope for the best.

[WinJ3 in reply to Jm954]

Jm,

I am hoping to have a good outcome. I hope it will help with my fatigue and clear up the sores and ulsers that might be related to CII. I hope It will make me feel better. The longer the better.

[Jm954 Administrator in reply to WinJ3]

As I said, this treatment is unlikely to give you a deep or long remission and given that you appear to want a long effect, perhaps you should ask your Dr why he's chosen this particular treatment for you.

Is s/he a CLL specialist?

[WinJ3 in reply to Jm954]

I am thinking about getting a secord opinion.

[Cllcanada Top Poster CURE Hero in reply to WinJ3]

Good move... everyone should consult a specialist Hematologist before treatment...

~chris

[Jm954 Administrator in reply to WinJ3]

Ask about FISH analysis, you need to know what ‘type’ of CLL you have before starting treatment. Some types respond better than others to different types of treatment.

Let us know.

[WinJ3 in reply to Jm954]

Thanks Jm,

I had a bone marrow biopsy eight years ago and assume it identified....way over my head....what type I have. It was very detailed... but in any event I just scheduled second opinion from a CLL specialist.

[Jm954 Administrator in reply to WinJ3]

Things can change, so it's important to have your FISH checked not long before you make a treatment plan.

I'm glad you've got a second opinion from a CLL specialist. Let us know what they say.

[WinJ3 in reply to Jm954]

Yes, I will keep everyone informed.

[WinJ3 in reply to Jm954]

Thanks for telling me about FISH. I will sure ask about it.

[TimHB]

I'm in my third week of treatment with obinutuzumab and ibrutinib. No two people respond the same but my docs are expecting up to 10 years of remission instead of 3 years from BR chemo I was about to start. For me, the infusions are easy but I get slammed with a "hangover" 24 hrs later that last up to 36 hours. That means it's working so I welcome it. You may react very differently.

[WinJ3 in reply to TimHB]

Thanks Tim,

Ten year remission would be great! I hope that's the outcome for all of us.

[Ezjacobs in reply to WinJ3]

Win, I have had 5 out of 6 monthly treatments of Gazayva neither high dose steroids. I have had no negative side effects from the Gazayva and only s night or two of no sleep from the steroids. My WBC count went from 115 down to 5 after the first treatment. The count is now below normal (less than 3) but my doctor is not concerned as my neutrophils are ok. I have autoimmune hemolytic anemia. My Hgb went from 9.3 to 11.7 at last count. I was told I might expect 2-3 years remission. I had not been symptomatic before treatment and am grateful that I continue to be asymptotic. Good luck and I will follow you with interest!

[WinJ3 in reply to Ezjacobs]

Thanks Ezjacobs!

[Luckyliss]

Hi win my dr is also looking to put me on gayzva after failed FCR and in hopes the ivig treatments that I’m having now gets my immune system back on the mend - keep me posted I’m interested to know how it works for you, all the best!

[WinJ3 in reply to Luckyliss]

Thanks Luckyliss,

I will update on how it goes...I am a little nervous about it.

[Luckyliss in reply to WinJ3]

Ditto but can’t be worse than FCR lol 😂

[richutchens in reply to Luckyliss]

Don’t be nervous. I believe you will find it to be very easy.

WBC will drop like a rock. You will be very happy.

[WinJ3 in reply to richutchens]

Thanks!

[richutchens]

I did the 6 months on Gazyva and it was wonderful. However, it still showed 9% of the disease left so I was immediately put on ibrutinib 22 months ago.

[WinJ3 in reply to richutchens]

Hi Richutchens,

Did the ibrutinib knock out the 9%?

[richutchens in reply to WinJ3]

No

[Grieb]

My wife completed the full course of Gazyva (only) over 3 years ago from by Dr. Jeff Sharman. She had none of the bad cellular mutations (17p, etc.) and mutated Immunoglobulin-g. Her blood-work has been normal ever since and she has an uncompromised immune system. Things could not have gone better!!

[WinJ3 in reply to Grieb]

That’s great!

I found my FISH...I am Positive for: Trisomy 12 and normal results for 11 (ATM), 13 and 17 (TP53)

[Grieb in reply to WinJ3]

Good Luck! If you want more information on my wife either click on my logo ( Grieb) or write.

[country76 in reply to Grieb]

Did she have it with chemo?

[Grieb in reply to country76]

No. Gazyva only.

[Downriver555 in reply to Grieb]

I too am being treated by Dr Sharaman. He has me on Gayzava and just started on a ramp up dose of Venetoclax. I am 13q deletion and mutated. I also get IgG monthly.

Question what was her deletion? How did they determine she had no more cll cells after treatment?

[tpetro]

I am in a trial with obinutuzimab and acalabrutinib ... after a infusion reaction to the first infusion, I had the pre meds prior to infusions of obinutuzimab and had no fatigue only alittle fizzy short term memory! Since I am on a combination regimen, I can’t speak to outcome but obinutuzimab was a good partner for acalabrutinib in my case. This is my first treatment.

Terry/dx2012

13q deleted / unmutated

[WinJ3]

Looks like you had a good outcome. That's encouraging.

[Cllcanada Top Poster CURE Hero in reply to WinJ3]

Gazyva (obinutuzumab) and Calquence (acalabrutinib) is a very different treatment, quite apples and oranges, compared to Gazyva (obinutuzumab) as a single agent...

~chris

[Que-sera-sera]

Hi Winj3,

Have you considered trying to get into a combination trial?

I ask because for my initial treatment I was offered to be part of an Ibrutinib-Gazyva trial, but my mindset at the time was such, that I was fearful of treatment itself, so in my mind, being able to handle one med was a big question mark, never mind two!

I don't have any stats on this specific trial but generally speaking, I think now I would be a lot more open to the idea of going for dual therapy vs. single even though apparently I'm doing fine with just one at the moment.

So, just a thought but sincere hopes you'll do very well with whatever you and your Specialist decide :-)!

[Que-sera-sera in reply to Que-sera-sera]

Oh btw, the one I'm on is Ibrutinib.

[WinJ3 in reply to Que-sera-sera]

Hi Que,

I have a very good Hematologist, but have scheduled a second opinion from a CLL Specialist that the CLL Society recommended. He heads up a research department, so I will ask him about any trials I could be in. My thinking is that once I receive a transfusion ...it can’t be redone...I am hoping this specialist will add some insight on what’s best. How did it go with your trial?

[RuthBorch]

I had Gazyva by itself 2 years ago and tolerated it very well - and still am in remission. I have all the good markers but did not respond well to rituxan by itself - so am pleased with the response

[WinJ3 in reply to RuthBorch]

RuthBorch,

That’s great! I need to check to see if I have good makers.

[Downriver555]

I am on Gazyva. I am doing my 5 th treatment tomorrow and they also started me on Venetoclax oral. I will take that for one year. I would be interested in hearing what the longevity would be.