VENCLEXTA’s impact

[999990Bruno]

Hello everyone,

I wanted to ask others their experience with VenClexta and memory loss. I am in month 10 and it is overwhelming the forgetfulness that I am experiencing. Your mind asks tje question is it permanent ?

it’s a bit frightening. I have faced chemo many times as a 25 year CLL survivor. Over the years I have longed-for a way out of this cancer and VenClexta offered that hope. However today I am trying to make a hard decision. Can I survive this treatment.

I have 8 out of 11 typical known symptoms including…

Memory loss

Nausea

Vomitting

Headaches

Joint pain

Emsomnia

General lack of thinking clarity

WEIGHT LOSS -25lbs

Lost appetite.

If anyone can elaborate I would be so thankful!!!

[Jm954 Administrator]

That all sounds pretty miserable.

I see that you were on a BTKi for many years, what was the reason for changing?

Have you spoken to your doctor about your side effects?

Sorry, more questions than answers!

Jackie

[999990Bruno in reply to Jm954]

Hi Jackie,

First of all I hope you’re well, and thriving. I am still taking the Ibrutinib as well as the VenClexta. The combination will supposedly send me into permanent remission. As well the study for I. Euro in has very few patients last time I asked who took more than 4 years and the long term side affects as well are pretty bad. So the Dr. thought the opportunity to rid these drugs would be the best alternative at my stage.

Of course I have and they try to combat, but to be honest if they told you all the side affects before you started, no one would take the drug

Hope that answers your question.

[Jm954 Administrator in reply to 999990Bruno]

It sounds as though the combination could be proving a bit too much for your body to cope with. You can only discuss with your doctor how miserable all these side effects are making your life day to day and see what they suggest.

I hope you can find a solution. All the best

Jackie

[999990Bruno in reply to Jm954]

thank you! This forum is so great. Because only people who have walked this road have sound advice.

Again Thank you!

[Shepherd777]

If my wife shared these side effects with her CLL doctor he would probably cut the Venetoclax back or even stop it for a couple of weeks. If the choice is MRD and miserable or Quality of life , my wife chooses quality of life.

[Moggn]

Hi

Thats a tough collection to deal with. I hope otherwise you are well. I'm wondering when you started on V and how long your program is .

I'm about 18mths thru 24mths on V which was started after relapse (diagnosed and FRC treated in 2017) . I had nausea and couple of times vomiting but eventually moved my pill taking to with evening meals and its now rare. I've had brain "fogginess/indecision" but thats actually improved a lot over the last year or so. I had shoulder aches that are improving with targeted physio after being assessed as muscle de-conditioning due lots of missed exercise.

Don't know if I have any extra memory loss , i don't feel as tho I have .

However early last year i had nausea/vomiting and a couple of faints. Heart etc tests couldn't find a cause , however they did a brain scan and found a small shadow that the neurologist said wouldn't have caused it and not of concern otherwise. Three months later on the followup MRI it was gone.

My haematologist talked to a CLL specialist but they didn't think there was a link to V, and the neurologist had no idea why it would come and go. i hadn't changed anything.

I'm sorry I can't actually give you anything helpful. I hope you can get some relief. V has worked very well for me so very best wishes.

[meganbo]

Hi, it’s definitely rough on the body. I started last Jan or Feb 2022 and started with (4) 100 mg pills. After a bit of annoying side effects we cut it down to (3) 100 mg. The side effects eased somewhat, but I had severe pain in my right side.

After tests and sonogram we discovered it was my rib bones aka the joint pain side effect. Went off for a month in Nov and pain eased up. Started back in Dec on (2) 100 mg and my symptoms/side effects seem more tolerable. No brain fog as long as I’m not stressed and rested.

I will say that my oncologist said when they run clinical trials that’s what they decide the dosage should be, however everyone’s body is different so I don’t necessarily need the full dose for it to do it’s job. He has a breast cancer patient who is taking 1/4 of the dosage and is showing significant improvement.

That all being said is talk with your doctor about what is best for your situation. I’m on Alcalbrutinub and have been for about 5 years as Inbrutinib gave me entire body hives week 6. I still have a tiny bit of itching on my back that Zyrtec D seems to keep at bay. I’m outside the protocol, but doctors at MD Anderson think my protocol is effective. We shall see this time next year. Good luck on your journey!

[Big_Dee]

Hello 999990Bruno

Good question which I am sure many CLLers have asked themselves. I answered that question yesterday with my H/O. I told her that in spite of some of my set-backs with Venclexta I am now regrouped after dropping to 200 mg and then back up to 300 mg, then back to 400 mg, I am continuing no matter what. Blessings.

[BgChiLL]

As a 2 year member of the army of those who fight CLL, I was amazed to see that you have been in this army for 25 years. I don't have any answers to your questions but you give me hope.

[Smakwater]

I cannot say that Venclexta influenced memory loss, however, now that it is mentioned, I will use it as one of my excuses for not remembering.

What was the question?

JM

[Otterblue2]

I experienced all of the symptoms you listed while on taking Venetoclax and Acalabrutinib.The symptoms listed started when the V was added to my daily A. I believe the V dose was too strong for me, but my study doctor would not allow for a reduction or break. My symptoms receded within a week or two of completing the drugs, except I still have joint pain (much less) and ongoing fatigue, after 8 months.

I believe the fatigue is related to generally being run down by the CLL, and a drug treatment that was too aggressive, weakening my kidneys.In traditional Chinese Medicine, kidneys have a lot to do with blood, bone marrow, energy level and cognitive function.

Since you have not mentioned being in a study, you should be able to advocate for a lower dose.

[Palmetto]

Sounds like these effects are debilitating and I can understand your frustration. I have written many times about my husband's journey but he took Venclexta with obinutuzumab instead of BTK's and he never tolerated the high doses of Venclexta. He never got beyond 200 and even that caused severe neutropenia and it was stopped several times before lowering down to 100. This was pretty much his highest dose but after only 6 months of that combination he was determined by blood tests and bone marrow biopsy to be in undetected MRD and was able to stop treatment. This was October of 2021 and he continues to have excellent counts. I question the doctors who are not flexible on the dosing of Venclexta. Seems to me it would only do damage to overtreat but I am not an expert except in my own mind after extensive research as well as the huge bank of knowledge on this board. I hope you can get on a regimen that works yet doesn't cause so much distress for your. Take care.

[Otterblue2 in reply to Palmetto]

Wow, that's impressive that your husband achieved MRD with such a reduced dosage. You'd think that would be useful info for study doctors and the drug company, informing them how to dose with less harm to the patient.