We are still alive and kicking my fellow CLLers! Gazyva treatment ended Dec 2. Now on Venetoclax only. Just working hard these days. Labs still excellent. Just anemia.
Keep having faith and hope! Loving almost normal lives!
LoveCures John and Steffie
I’m glad that this combo is working well for you. I did Gazyva monotherapy. My HGB fluctuated just under in range for some time afterwards. It drove me crazy, mostly because I was very anemic when diagnosed and I suppose I will always have a fear of ending up back there. It is now solidly in range. I don’t know how the Venetoclax will play into your counts, but hope that finishing Gazyva will help get your HGB back up soon.
Hi MS my friend!! How are you? We did not get the neutropenia which is a hard complication . So very lucky. Hope you are WELL. Thanks for your post!
J and S
Gazyva in 2015 and back to my boring CLL patient status.
I am so happy for you both. I haven't read your previous posts, but I believe love is what keeps so many of us strong. It gives us purpose, hope and comfort. I don't know how I would manage without the love of my wife ( who has her own chronic conditions ) and family.
It's a real tonic to hear your good news, so thank you so much for sharing it with us. Keep on loving and enjoying life.
Thank you! I am telling you the truth. I think we found the “cure”. And I believe in our case with bad mutation 11q ATM we had to hit it hard and early .
I too just finished Gazyva and on veneteclax only. Come January I have 5 months to go:)! All of my labs are now normal. I still get a low dose of IgG and have not had one cold or cough thus far. I pray this combo is our miracle drug. I can also say I never had a side effect from either one of these drugs
let’s keep in touch
Susan 60 cll 13q deletion mutated
It may be the Holy Grail of Cures. Please let us follow each other.
Excellent! My wife started Venetoclax on October 31 but Gazyva entered into the picture after completion of the ramp up. I have explained the rationale for this strategy in previous postings. She now completed the first Gazyva cycle last week.
The effects so far have been awesome, but with collateral damage via cytopenias. She is mildly neutropenic (when neuts fall below 900 she gets Granix, GCSF, so far 2 injections in 8 weeks). Further, she developed a Grade 3_4 thrombocytopenia. Her platelets came down to 16, so she was put off Venetoclax for 5 days and got a platelet transfusion. On Wednesday she will resume Venetoclax at 50% full dose (200 mg) and further planning will depend on how her blood profile evolves.
The platelet transfusion is far less involved than a blood transfusion.
Our CLL specialist and the lymphoma panel at the U Wisconsin Cancer Center think that venetoclax is the cause of the cytopenias. We were told that these problems gradually dissipate in the course of treatment, and there is a recent paper by Dr Davids which corroborates that opinion.
While the tratment is quite hospital-clinic intensive, her life is completely normal. We did not go South as usual, but go to restaurants, movies, malls, etc. Once she gets into autopilot, we plan to foreign travel while still on treatment.
They we way we look at these side effects and dose management issues is as follows: think about them as if getting a flat tire or a missed connection/cancellation during travel. These are are annoying and stressing, but once you get to destination, things look much, much better!
Have a great and healthy 2020!
Surely this would make for a great case study whether Gazyva works better befor starting veneteclax or V before G. In my case when I received the initial dose of 100mg of Gazyva the next day my blood work significantly improved almost into normal range. It was amazing to see . The remainder of the 900mg was given day two and again no reaction. To date I have all my labs with in normal range. Is your wife on any IGG replacements and what does her immune function look like? I am praying some how that once the cll is in full remission my immune system will repair. I am told wishful thinking but hey you can always dream. This combination of drugs we are are couldn’t be better. We are lucky. Best to you and yours
The reason why Gazyva was not started until completion of V ramp-up was her high tumor burden, pre treatment. There are several refereed papers as well as empirical evidence indicating severe cytokine release problems with Gazyva when pre treatment ALC exceeds 40,000 (my wife's pretreatment ALC was close to 150000 after 6 years in WW)
Sequencing of agents is an important topic, indeed. Even more important is whether a combo adds over monotherapy or not. For instance we now know that rituximab does not add over ibrutinib in front line. Likewise, a paper by Mato (observational study) suggests that Gazyva may not add over venetoclax for some types of patients.
The design of clinical trials is often weak. It looks as if statisticians come into the picture after the data is collected, as opposed to before. Also, the trials often do not allow for a clear separation of effects due to the various agents so experimentation proceeds by trial and error. Mato has argued that a good trial should have a least a monotherapy arm!!
I imagine that drug companies also have a big influence on the design of the trials. Just read all the disclosures that medical scholars present in their introductory slides!!
Good news, glad to read you guys are both doing well.
Hi my Cajun Buddy Heff, Hope this finds you well!! MDA said come back in six months. Labs almost perfect. Hip still is messed up . Eyes dry with some corneal damage on the right so another problem to deal will. Seems like shingles is resolving
I am sitting here at Seattle Cancer Care Alliance waiting for an injection of Rituximab which is similar to Gazyva. Only 2 more to go! Then Venetoclax only.
This treatment has been awesome. Nausea has been my only side effect. Blood tests are completely normal, although my ALC is actually a smidge low today.
Looking forward to getting out of my boot ( broke my ankle) and starting my normal life again. I feel so much better. I am hoping this is the miracle we have hoped for.
I am studying this very closely and although there are some residual bad things from CLL like a weird folliculitis popping up....the worst of my horrendous rashes are gone
Great news! Hope things continue to go well for you.
I am also on Venetoclax and Gazyva now. I am a week away from my cycle 3 Gazyva infusion, and my swollen lymph nodes have disappeared. Blood work is normal except lymphocytes are low. The most important side-effect has been significant (sometimes debilitating) fatigue and muscle aches. I am also down with nasty virus that is going around and it is taking me a lot longer than usual to get well.
Hi GP, How is it going? I missed you all so much!!! I am following you all now! God bless you in the New Year!!
Hi there! I am so happy to ready your posts! Uplifting! I am scheduled for my first gazyva treatment next week. 100mg , and then 900 the next day. I'm sure you know the schedule. Then its veneteclax for a year? Not sure about that. Anything you can share about the first few days would be appreciated! I also have the 11q gene
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