Looking for Venclexta Support

Happy to be in this group and read all your stories. They have been supportive.

My husband was diagnosed with CLL in 2007 August. His counts were high then WBC about 150,000. He declined chemo then opting for alternative treatments. We tried that for a year. Numbers got worse to almost 300. Sorry don;t remember specific numbers. He agreed to chemo because he was so sick and we almost lost him. He responded very well to rituxan and something else. Then while watching news one day, i saw imburivica being approved. We called the oncologist and actually informed him. He was among the first people to be started on it and it was magical. Life went normal and except for labs every three months, we forgot he was living with CLL. That drug gave us life, allowed us to be family, have vacations and have an almost normal life. We have two kids below 10 and 11.

Come this year, he started getting sick. Has had multiple hospital admissions this year from pneumonia, mosquito bites that left huge skin pain sores, flu, fever of unknown origin etc.

We requested for a second look at Imbruvica. His numbers were going up again and we got to 120,000. They did tests and he had 17p deletion.

Woke up some morning last month with extreme pain to left side. Could hardly walk. He was appearing confused. I rushed him to the ER. His pott. was 7.00; critical value Spleen was severely enlarged giving him the severe pain. The oncologist had to figure something out. He decided to go venclexta. His WBC count them was about 150.000. He is now on week 4 with 200mg. He was in the hospital for 2 weeks then. He went back last weekend for fever of 103. He was released on Monday. We have been home now almost a week and praying he does not go back. He is extremely tired. He has extensive mouth sores which have been a story this year.

His number are low low with WBC 15; Lymp 14.1 and neutrophils 0.00. I am worried about the neut being at 0. He was given IG and is on levaquin for prevention of res. infection purposes.

He gets to 400 next Thursday. The numbers have been drastically climbing down. His hg and plate have been low before treatment but seem to be holding steady.

We will like to know any experiences with this drug. Thanks for listening and thanks for the support.

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So sorry to hear your experince w/ cll. Sending good vibes and healing. -bill

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Hi Bosibori

Wish I could provide some reassurance and experience for you, but you need one of our knowledgeable members to read and respond. My reply will hopefully flag your post and others will respond.

To be so severely neutropenic is hard, at least I think there is plenty of advice should you need it on following a neutropenia diet.

Wishing things improve for you guys.

Bubnjay1

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So many here report success with venetoclax that I'm so sorry to hear of your struggles as your husband works toward full 400 dose.

I can only speak to my limited experience with temporary mouth sores shortly after starting ibrutunib. My doctor added antiviral acyclovir and the mouth sores quickly disappeared. If you aren't already taking prophylactic antivirals you may want to ask your specialist.

Others here could provide more knowledgeable advice or experience with neutropenia and venetoclax. Neut's at 0 is very concerning and requires discussion with your specialist.

Hope continued venetoclax and IVIG treatment stabilizes his labs, and that he is feeling much better soon.

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Has been on acyclovir mos of the year. At this moment, they are clearing. we are happy. Thank you.

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Hi Bosibori,

Sorry to hear your husband has been having a rough time. I hope things improve soon for him.

Check my profile for a summary of my journey with CLL.

I am in a clinical trial called Clarity, which combines Ibrutinib and Venetoclax (UK name for Venclexta). I started on 14th Februay 2017 with Ibrutinib and Venetoclax was added in April, so I’ve been on Venetoclax for about eight months. To date I’ve had no adverse effects that can be attributed to Venetoclax. With two drugs it obviously hard to be 100% sure but reading the literature supplied with the drugs the minor side effects I’ve seen look like Ibrutinib effects.

Feel free to come back with specific questions, but note I don’t have medical training, all my comments are based on my first hand experience only.

best to you both, rob

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Hi Bosibori,

Sorry to hear that your husband is struggling with Venetoclax after good results with Ibrutinib.

My experience was just the opposite, I could not tolerate Ibrutinib's side effects (after 30 months of success on Idelalisib but then becoming resistant). Venetoclax had my bloods nearly normal at 100 mg - week 3, and I was MRD negative by week 29. After two successful MRD neg bone marrow tests, we stopped Venetoclax in Sept 2017, and I hope to get several years of PFS (Progression Free Survival), before I need to restart Venetoclax.

I hope you and your doctor can figure out how to manage his neutropenia (possibly an injection of Neulasta) and keeping him away from all exposure to pathogens including the netropenic diet. If he can eventually get up to the 400 mg dose and hang on for a few months, he may also reach MRD neg.

Good luck to you both!

Len

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Thank you so much. This is very helpful.

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On Venetoclax, same neutrophil count happened to me: 0.0! Got Neulasta shot which moved them up.

Rick

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