CLL, Gazyva, and the VA

[JimboW]

I know "one size doesn't fit all", still I want to share that Gazyva treatments (5th recently) have been super effective in bringing my CLL under "control". My VA Drs and nurses are terrific, kind and caring!! Bless them all and bless all of you where ever your path leads!

[pet-lamb]

That's great him I'm happy for geometry Christmas

[cllady01 Former Volunteer]

JimboW, Thank you for that report. Those of us not yet treated are helped by reports about treatments, even knowing the same treatment might not be our cup of tea. And, even the reports that are not so good, help us in our efforts to learn what we may face.

The sharing of information gives us each the opportunity to grow and to support each other.

I just read your first post and want to thank you for your service as well as say it is good to hear you are finding the VA a kind and caring place for treatment, especially, after you had to scramble to get your legitimacy established as having served in Viet Nam.

[may04cll]

has it been determine how many rounds of gazyva before it becomes ineffective?

[JimboW in reply to may04cll]

The “standard” regimen is a series of 6 infusions spaced 28 days apart with blood chemistry draws at each session. Hope this helps you!

[may04cll in reply to JimboW]

yes thanks , I'm seeing patients having multiple treatments with rituximab over the course of years and not the new and improved 2nd generation gazyva treatments

[Thundercat2]

Hello JimboW,

I have had 4 treatments so far of Gazyva and it has also really worked well on the CLL for me. I have also been on Ibrutinib as part of a trial but the Ibrutinib has caused me much joint pain, so we are re-assessing whether I will continue on that or not. I am so glad it is working well for you. Here's to a good long remission and a very happy holiday. And thank you for your service!!

[JimboW in reply to Thundercat2]

Interesting to hear about your progress! For me it was like walking into a completely dark room, what waits? Will I stumble? Is death near at hand? Maybe it is better to just pass away? Again I am thankful to my terrific VA pros who led and showed me the way!

Science has apparently made great strides in treating CLL and we are the better for it!

Best of luck good buddy!

[Thundercat2 in reply to JimboW]

Oh yes, the dark room. I get it! I have felt exactly the same way. Thankfully there are doctors and nurses out there that help us through. We are incredibly lucky to have them. So glad to hear the VA has been there for you. And best of luck to you too! May 2020 bring good health to everyone here!

[AussieNeil Administrator in reply to Thundercat2]

As I mentioned earlier today, Ibrutinib/Imvruvica was the first generation BTK Inhibitor approved for CLL, sparking competition from a growing number of second generation drugs that are aiming to be more selective and less likely to have the resistance problems seen for some prescribed Ibrutinib. Acalabrutinib was just FDA approved for CLL. So see if your specialist is prepared to prescribe that or enroll you in a clinical trial with another BTKi.

healthunlocked.com/cllsuppo...

Neil

[WinJ3]

I am glad the VA is taking good care of you. I am hoping to add a VA doctor to my team to cover my medication needs.

Gazyva gave me about eight months remission. I am now on Imbruvica as a maintenance therapy.

Hope you’ll have a longer remission.

Win

[hillclimber66]

Hello,

I've been reading your posts and those that responded. Sounds like this treatment will have a positive outcome. good luck

I'm curious whether you ran into any difficulty with the VA during the claims process.

I certainly have, even though they have the proof necessary to approve the claim. I'm currently on Ibrutinib and have been for 3 1/2 years with the usual side effects, either from the drug or the disease.

Like to hear from you if your so inclined.

Steve

[JimboW]

Thx for your interest! I can only speak for myself so it was a real stress project to get my service in VN recognized. That was because I was involved with several missions in country under TDY assignments. Once I broke though that the VA has been overwhelmingly supportive. I am grateful to the VA and to my country for without them my wife and I would be in financial ruin. I am now in remission for who knows how long.... I hope for the best for you and may you future be bright!