Imbruvica and Gazyva

[HeyWhat72]

Newly diagnosed with CLL in January 2020 with del(17p) TP53 mutation. I have been on Imbruvica 3 months with really no major side effects but lab work is still high/low, wbc is still high, liver enzymes are high, platelet and hemoglobin is low. My oncologist wants me to try Gazyva for a couple of months to jumpstart the Imbruvica. Has anyone had this treatment?

[Hidden]

what lymph number did you start with and what is it now. Usually in the beginning imbruvica treatment makes it higher than it starts to come down. 3 months is not a lot of time. However if you have confidence in your doctor i see no reason to not to. is your doctor a specialist.

Have you read the imbruvica/gazyva website?

[HeyWhat72 in reply to Hidden]

Abs Lymphocyte was 68.9 when diagnosed now it is 191.0. I will read Imbruvica/Gazyva website. Thanks

[PlanetaryKim in reply to HeyWhat72]

To me, that increase in absolute lymphocytes over first 3 months of treatment sounds like the Imbruvica working, doing exactly what it's supposed to and what it's expected to do. But I'm not saying adding Gazyva is a bad idea. It may be useful. But the increase in lymphocytes at this time is a good sign, not a bad sign, in my opinion. Good luck!

[HeyWhat72 in reply to PlanetaryKim]

Thank you, appreciate the encouragement.

[LovelyLilyGirl]

I was diagnosed in 2011. I started on Gazyva infusions in March 2020. After the first infusion, my labs were basically normal. I know everyone has different results. I’ve had 5 total so far, next one May 8th, the 3 more. I had a slight allergic reaction within the first five minutes of my first infusion. But they gave me IV Benadryl and the allergic reaction immediately went away. I’ve had no side effects other than a little bit of tiredness when I would come home Infusion day. I am now taking Venetroclax pills for the past 2 1/2 weeks. My labs are normal and my oncologist is ”ecstatic” with my results.

All the best 🙏🏻

Sally

[HeyWhat72 in reply to LovelyLilyGirl]

Thank you Sally.

[mja511]

I have CLL with del(17p) TP53 mutation. It took 5 months on Imbruvica before my lab work was all in the normal range. I've been on Imbruvica for almost 5 years now.

[HeyWhat72 in reply to mja511]

Thank you, that gives me hope..

[thompsonellen]

I'll also 17p deleted, and did the trial with obinutuzumab, venetoclax, and ibrutinib. As was previously mentioned, expect to feel lousy during the first infusion, but otherwise it's fine. That trial started in June, 201 with obin. Many got to MRD-. As of Feb, CLL detectable at .007% which they say is a great outcome under my circumstances. Do keep in mind it can take years to get max results possible ibrutinib. That said, I did the trial instead of monotherapy despite the extra toxicity because my doc thought that was the best option for me given 17p. Hope this helps.

[HeyWhat72 in reply to thompsonellen]

Thank you for your response, I am just trying to stay positive that this treatment will give me more time.

[SERVrider]

My diagnosis was in January, with a confirmation by bone marrow biopsy in early February. My Haematologist has prescribed Obinutuzumab (Gazyvaro) I.V. with Chlorambucil in tablet form for 7 days in each monthly cycle. Unfortunately, with the Covid-19, she recommended we delay the start of treatment for 2 months since my maximum repression of infection would coincide with the anticipated peak of Covid-19. I am hoping that a start can be made in early May. The routine is to do the first infusion over two days, with a pre-treatment, at a very slow rate to watch for allergic reactions, then a second dose on day 8 and a third on day 15. Each successive month is just one dose of Obinutuzumab and the 7 days' of Chlorambucil. Once that gets under way, I can give a report of how well or badly it goes.

[HeyWhat72 in reply to SERVrider]

Thank you, I appreciate the info.

[Mkhait]

My wife has 17p, took about 9 months to get to normal numbers. She's more than 4 years on ibrutinib and for the last year is in complete remission.

[HeyWhat72 in reply to Mkhait]

Thank you, sounds like the treatment is working, hopefully my treatment will do the same.

[jbctx]

Based on my experience Gazyva will hammer the white count.

That said, platelets can be a problem. Mine were low to start with and ended up low even compared to where my clinic draws the line.

At that point I was on monthly Gazyva. I was also on and off of the Ibrutinib I was supposed to be taking concurrently. The variations of Ibrutinib were in an effort to ease the platelet problem.

Things bottomed out to sum extent. My Gazyva infusions are cancelled and I have been back on 280mg of Ibrutinib per day, blood counts appear to be normalizing. Hopefully I should tolerate another Gazyva infusion next month.

Again, based on my experience, it seems that either of the drugs can be stopped and started at your specialist’s discretion.

Bottom line for me is that I read somewhere about the mechanism of Ibrutinib and Gazyva complementing each other. So, I would recommend you do some research from your “personal” point of view and if it points you in that direction, take the option.

Regards,

John

[HeyWhat72 in reply to jbctx]

Thank you John, good to know that Ibrutinib can be stopped for a bit so I can get my platelet count up.

[SERVrider]

Oddly enough, it was low platelets that started my entire journey. As part of my ordinary Type 2 Diabetes testing, my GP noted a steadily falling platelet count so referred me to the Haematologist. She found rock-bottom levels of immunoglobulin (A. M and G) so referred me to the Immunologist who put me on IgG replacement therapy. Regular checking then noted enlargement of the neck lymph glands and splenomegaly so an ultrasound-guided lymph biopsy was done and, hey presto, CLL. I suppose one could ask the question, which came first, the chicken or the egg? Alternatively, was it CLL way back in the beginning that caused the falling platelet count? Also, was the 10 days in hospital with community acquired pneumonia on horse-size doses of antibiotics linked or not. I guess we'll never know for certain