Gazyva again?

[skinkade]

Hi All,

Has anyone had Gazyva for second line treatment? I had Gazyva in late 2016, was only in remission for a few months and then the lymphoma started coming back again in my parotid gland. I've been in W&W since but my blood numbers have been going down in the past few months. Platelets have gone from 180 to 107 since March, wbc are down to 3.5. Doc is suggesting to do Gazyva again, with no combination therapy. I have marginal zone lymphoma, has anyone experienced similar, and anyone done Gazyva twice? Any suggestions for next steps. Other than the above I feel pretty good.

[Indolent]

A question on my part, was this Gazyva monotherapy?

[skinkade in reply to Indolent]

Yes, monotherapy. Did not have anything else in combination.

[Cllcanada Top Poster CURE Hero]

Is Imbruvica (ibrutinib) or Zydelig (idelalisib) available to you?

~chris

[skinkade in reply to Cllcanada]

Yes, I believe they are available, did you do that too?

[Cllcanada Top Poster CURE Hero in reply to skinkade]

Yes, I have done both... 😃

If Gazyva wasn't great the first time, I doubt repeating it would be much different, but it might be...

Usually CLL progresses a bit with each treatment, so you might look at other treatments which will control it better and longer, but both of these are pills for life...

~chris

[skinkade in reply to Cllcanada]

Okay, thanks I didn't realize that Ibrutinub was forever. I had the same general question, why should I expect a different result if Gazyva provided such a short remission for me. And since I have Marginal zone lymphoma, I'm not sure how that differs from CLL. What has been your side effects with those two drugs?

[Cllcanada Top Poster CURE Hero in reply to skinkade]

Ah.. SMZL is different than CLL, and neither of those drugs are FDA approved, but you could probably get them... off label use.

I was reading about SMZL just this morning and there are no standard treatment protocols... so its try and see if it works kind of thing.

There are a number of side effects on those drugs, each is different, but for many patients the side effects only last from a few days to a month or two...

[skinkade in reply to Cllcanada]

Yes, MZL is pretty rare and doesn't have a lot of specific data, so it gets lumped in with other lymphomas and cll. It appears there are some trials out there that address MZL, so asking my doc to check it out. Thanks for all the research you do!

[Cllcanada Top Poster CURE Hero in reply to skinkade]

Here is the paper I was reading from a few hours ago... its very technical however... is yours splenic or nodal.. MZL?

ncbi.nlm.nih.gov/pmc/articl...

[skinkade in reply to Cllcanada]

Splenic. Wow, that's quite the article. Not sure if it's very reassuring for me or not.

[Cllcanada Top Poster CURE Hero in reply to skinkade]

Sorry, didn't mean to upset you, but it would appear that multiple lines of Rituxan, or Gazyva the newer version, is the common therapy. Perhaps your doctor can suggest other options...

~chris

[skinkade in reply to Cllcanada]

No problem Chris, I truly appreciate the info. Just talked to my doc and he is suggesting Gazyva with Bendomustine as an option for me. What do you know about this combo?

[Cllcanada Top Poster CURE Hero in reply to skinkade]

Oh.. you will be a member of the Bee Gees... 🎵😄

Lots of data on CLL but not SMZL.. there is a bendamustine/rituxan [BR] study, but hard to compare...

I think there are some CLLers who have had this on this forum...

~chris

[skinkade in reply to Cllcanada]

Haaa. BeeGee's, not sure if it's my favorite group to be in! I'll try to search or post to see how folks did with this combo.

[Doremefasol in reply to skinkade]

Chris ( Cllcanada) is a bottomless source of info. He will find the info for you if he is not familiar with a subject. He is the most selfless person I have ever encountered and always here to help.

[Doremefasol in reply to skinkade]

Ibrutinib is approved for MZL. If this is the only second time you have to be treated they should do Ibrutinib and Rituxan. Find a clinical study for those 2 meds.

[skinkade in reply to Doremefasol]

Unfortunately I transformed last fall so I just finished rchop this week.

Hopefully remission report next month.