Peripheral neuropathy

[puppy43]

Hi to the CLL community ,

on cycle 8 of my V and O treatment and now on Venetoclax for the last 4 months.

Have had the venetoclax reduced to 200mg for a few weeks to help with neutropenia,

but over the last 3 weeks I have developed neuropathy particularly in my fingers which wakes me up at night as my hands go numb and have pins and needles constantly.

Does anyone have any experience of this as a side effect of Venetoclax ?

My consultant checked my B12 ( which was fine) as this can cause pins and needles .

I am concerned as believe it is not reversible ?

Any thoughts gratefully received

best wishes to all

Puppy

[Poodle2]

I actually did have some pins and needles in my hands while on the same treatment. I'm not sure if it had anything to do with it. I'm off V now and don't have it anymore.

[puppy43 in reply to Poodle2]

Hi Poodle2,

thanks for your reply. In some ways it's comforting to know that others have the same side effects ( not that I'm happy you had the pins and needles) as my consultant has suggested Venetoclax would not cause this problem , but I am a great believer in listening to our bodies and I think that is the cause.

now you are off V and don't have it anymore gives me hope it will go when I finish in April next year .I hope you continue to do well

best wishes

puppy

[Poodle2 in reply to puppy43]

I had so many strange symptoms and they stopped when I went off V. Really strange some of them - rib bone pain - so bad I couldn't wear bras when it was at the worst...couldn't sleep on my tummy as it would hurt so badly. My periods were so heavy I couldn't leave the house on day 1 and 2...heartburn, severe cramping and diarrhoea (at one point about 3x a week), ...it can be really delibitating but I always focused on the outcome I wanted to achieve. It made it a bit easier at times to stay motivated...stay strong.

[puppy43 in reply to Poodle2]

Thanks Poodle2 I will try to stay strong and like you I have had very strange symptoms with the Venetoclax and yes very debilitating too especially the diarrhoea

and fatigue. As you say staying focused is essential to achieve our goal

best wishes

puppy

[neurodervish]

I'm not on this treatment, but wonder if it's unrelated to your treatment? I suffered from peripheral neuropathy, which kept me up nights and became increasingly painful. Lying down made it worse, so I tried to sleep sitting up. I went to a neurologist who poked my hand and wrists with needles and electrodes, pronounced “no nerve damage” and sent me away (frustrated and still in pain). I finally spoke with an emergency room nurse who said it sounded like classic cervical radiculopathy—explaining that a pinched nerve in the neck can cause numb hands (but so can carpal tunnel syndrome). I went on youtube and found many physical therapy sites w/exercises to remedy cervical radiculopathy. I found this one helpful. youtube.com/watch?v=gZUNcfc...(Not working as expected?) I couldn't believe that I'd been in pain for months, only to learn that I could fix it with just a few minutes' worth of simple exercises.

Obviously I don't know if you're having the same issue, but a few chin tuck exercises and stretches probably won't hurt (if they do, stop immediately).

Hope this helps.

[puppy43 in reply to neurodervish]

Hi

thank you so much for some excellent suggestions . I have been checked for carpal

tunnel, diabetes and B12 and all clear , but haven’t seen a neurologist which might be a good idea to rule things out , but although I try constant hand exercises I hadn’t considered nerves in the neck and as you say exercises can’t do any harm and I am willing to try anything as it drives me nuts at night .

My infusions were a breeze , but Venetoclax certainly throws up all sorts of side effects

Many thanks and best wishes for your help

[neurodervish in reply to puppy43]

I hope you get relief soon! I should clarify; these (2-minute) exercises need to be done a couple times a day. Between spending WAY too much time on a computer (with my head craned forward and causing compression to the nerves that go to the hands), and spending every spare minute gardening and weeding (with my head craned forward and causing compression to the nerves that go to the hands), I was a peripheral neuropathy case waiting to happen. Now days I constantly tell myself to pull my head back and to straighten up and fly right. 😊 Improving my posture seems to be the best medicine of all, but I still do those exercises every day.

[WittyApricot]

I’ve been on V treatment since 8/22, and had radiculopathy really bad in feet likely from enlarged lymph node pressing on nerve. When I went on V, it seemed to get worse, but lymph nodes have improved. I attribute it to V. Interesting , in the last month I’ve been going for a weekly massage with oncologist trained massage therapist and they work on hands and toes in a particular way that helps neuropathy. At first I was a bit skeptical, then after the second time my neuropathy got better and I can feel my toes now. The therapist explained to me that this is a common thing that happens with cancer treatments, something about the effects of the drugs end up affecting the toes and fingers, a very common phenomenon.

Hope this helps

[puppy43 in reply to WittyApricot]

How interesting my lymph nodes are greatly improved , but neuropathy is getting worse . Massage from a qualified person who knows about chemo drugs sounds like a great idea I will research someone in my area and give it a try .

Thank you so much for the help and advice

[NYCBill]

Pully43–I got PN along the way, in and out of Venetoclax treatment and some speed bumps. It struck both my hands and feet as well as pins and needles in my back. My B12 proved to be high. I may have done that myself inadvertently with vitamins. Not sure. … I was told I’d likely have PN moving ahead. Mercifully, my hands and upper body eased up. The foot tingling pain remains in one foot worse than the other, but it’s far better than it was. … I’ve taken nothing for it. I don’t like the idea of gabapentin, lyrica etc simply because I want to stay away from new medications. I do find for my foot pain, Ben Gay with 4% lidocaine works for temporary relief. So does decent strength CBD cream, although relief may not last as long. Finally, I’m finding a lot of comfort wrapping the painful foot in savoy cabbage leaves at night when I lie down and it’s worse. This recommendation came through a friend of a friend in Switzerland, whose doctor recommended it for inflammation. Wrap his inflamed knee overnight, the doctor said. I wrap my foot a few hours in the evening. It does work, quite cooling and pleasant but you can’t take a walk with cabbage leaves rubber banded or tied to your feet. I’m experimenting with red and regular cabbage versus savoy. If you google it, you’ll find an NIH paper, if my memory serves correctly. The abstract notes Polish folk medicine uses cabbage and science is now finding some reasons it may work. Long and short, it tickles me it seems to work and cabbage lasts quite a while, so it’s cost effective. You can even grow it to ensure organic or nonGMO cabbage if you’re particular about it. … Anyway, the takeaway is if the heavens are right, the PN may recede and there may be a new reason to love the humble cabbage. Good luck with it. Bill

[puppy43 in reply to NYCBill]

thanks for your very interesting reply it gave me a lot to think about .I do remember as a child my Mother using things like bread to draw out infection and same as you i don't want any more pills .I have used an ibuprofen gel and voltarol at night which helps at the time , but a few hours later it's worn off .

I will keep on trying and see if anything helps, but would rather treat the cause if possible

best wishes

puppy

[NYCBill in reply to puppy43]

It makes sense as you say to address the cause if you can. Good luck finding and fixing it. I do know there are several systemic medications that focus on nerve pain like gabapentin and lyrica. Best. Bill

[puppy43 in reply to NYCBill]

Thanks Bill,

appreciate your help

best wishes

puppy

[Trilpub]

Yes, neuropathy on Venetoclax. Cancer doctlr said not the cause but a neurologist thinks so. Now on 100 mg instead of 400. No better but no worse

[puppy43 in reply to Trilpub]

Exactly the same as me maybe I need to see a neurologist and get some input as have been told if it continues to get worse you may lose feeling altogether in your fingers and they become numb. Don't want that .I'm now on 200 instead of 400 and nothing has changed

Thanks for your reply

best wishes

puppy