Is anyone dealing with CLL, Chronic Lymphoma Leukemia?

Hi Panevills

I am being treated for CLL and decided on Obinituzamab and venetoclax. There have been very few side effects and i am more than half way through treatment. While the first few infusions of Obin didn’t go well, the team quickly saw my reactions, hard to breath they stopped the treatment and restarted it slowly, after giving steroids.
Venetoclax gave me some nausea which was taken care of with Olanzapine.For the most part i have sailed into remission and am done infusions and just taking venetoclax to finish up.
The reason I decided to go with this treatment is because it can be retaken if I go out of remission which on average is supposed to be 7 years…Abbvie care looked after the cost of my treatments which i am so greatful for.

My CLL was treated with Obinutuzumab and Venclexta starting 8/2024. Got through the 6 months of Obin, but had to stop Venclexta after 7 months due to severe pulmonary issues (from both medications). My caution is that if you have any underlying pulmonary issues, be aware that they could become life threatening. I was told by my Oncologist at NJH to never go back on Venclexta.

Thank you for the cautionary comments. My cancer of throat and mouth began with dental infections. I am not convinced I have CLL. The oncologist is pushing medication and I am resisting, as all the ones I have researched have troubling side effects. Your testimony supports my decision.
May we trust in the Lord for He knows us best. Pamela

Thank you, your comments are very helpful. My oncologist indicated CLL is no big deal and slow advancing. I am hesitating, as reports from others who have been treated all include side affects that call for more medication.
I am 83 years old and am not experiencing any other health problems - no medications up to now. I am praying over this and putting my trust in the Lord.

Hi Panevills,

I've been on Brukinsa for about 16 months without any issues. I believe that issues are more of the exception with Brukinsa. Everyone with CLL is different - the need for treatment ranges substantially from person to person. Some people go for years without needing treatment. I went on Brukinsa as soon as I was diagnosed (May 2024). I didn't have ANY major symptoms at all, but I had several factors that put me into the stage 4 category.

My insurance fully covers the cost ($15k/mo). For those that don't, I saw that the company or other organizations do offer free prescriptions (I got a pamphlet from Mayo on this when I started in).

Your comments are so very helpful. You have been on Brukinsa for over a year, basically with no side effects. How long do you need to take the medication? Do you have regular blood tests to check your blood count levels? If so, are they normal? Does CLL ever go into remission?

Diagnosed 2/3 years ago. No problems until yr 3. Light headed unsteady on my feet caused by a low reading of hemoglobin (6). In the hospital for four days, two units of blood and after release from hospital four infusions of Rituximab. Then four monthly bloodwork all looked good. Now my blood tests will be every three months.
I guess I’m in remission. But my Doctor told me one really never gets rid of CLL it can come back. My instructions to my Doctor do not sugarcoat anything about my condition I want factual information whether it is good or not so good. My Doctor has complied with my request and she is a straight shooter.

Thank you for the comment and information. I'll check on Rituximab. Interesting that you are in remission from injections. Blessings.

Hello @panevills
I take it with 8oz of water at around 7:30am and 5:30pm each day. I assume I'll be on it until it no longer works for me. It's a habit now, just like eating - not an issue for me.

I see my Mayo doc (or his PA) about every 3 months. All my bloodwork, except for my Ig*, M Proteins, Kappa FLCs, are in the normal range. I don't feel any different than before (maybe slightly less energy w/CLL) - but everyone is different.

On Brukinsa (Zanubrutinib), I don't think you would go into remission. It helps keep the Leukocytes count in check. I think that's it. Btw, there are at least 3-4 newer treatment options, with more on the horizon, that could be used if/when Brukinsa stops working for me. So, I'm optimistic that I will have more than enough options to outlast me into my 90's! Masking really is the key to a healthy life for CLL folks.

I read your response with intense interest. How long have you been on Brukinsa? Do you have names for the newer treatment options. Are they more affordable? Thanks about the masking suggestion; in the past I've always been so healthy and rarely worried, without flu or pneumonia shots. Caution is certainly appropriate now.