I have numbness n tingling all the time on my toes n feet. I feels like I have socks on all the time and walking on marbles - this has been going on for at least Two years or more . When I mention it to the internist and the oncologist they really have no answers for me except don’t wear heels or tight shoes or closed tie shoes n keep feet warm - I have cll and have been on imbruvica for many years now 3 per day -
Is cll or imbruvica the cause? My sugar level is ok and blood work is although not normal nothing dangerous high or low except platlets which they don’t seem concerned about either even tho around 60
I have gotten use to this situation and it doesn’t stop me from daily routines and working outside - I think I just ignore it - but it seems to be getting worst
What do you think ! Anyone else have this ?
thanks
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Dmdtennis
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You have neuropathy, which might be due to the ibrutinib. Seems that it's pretty rare given there is a case report Ibrutinib-induced polyneuropathy: A case report
I'm sorry you didn't get better support from your internist/oncologist. Your oncologist should be more supportive medically, as neuropathy is a known side effect of some chemo treatments. Your comment about your sugar level makes me wonder if you have diabetes or have been concerned about diabetes. Perhaps you are aware of the increased risk this places you in with respect to to having more cuts and scrapes that can become infected and which you may not feel until they become harder to treat. That's not a good combination when you are immune compromised. Please escalate this with your oncologist, given you feel that your neuropathy is worsening. The above case study gives you the basis to talk about reducing your dose if your CLL is well controlled or switching to a different BTKi, bearing in mind that other factors need to first be ruled out.
I'll be interested in your outcome, as I am sure are others.
I have read some previous posts from 4 years ago. These problems were being discussed then. It would be good to find a cure. It was sad to see some familiar names that arent here now.
Neil do you know if patients continue to have these side effects after taking Ibrutinib, Acalabrutinib or Zanubrutinib? I haven’t been on treatment with these since December but my ankle, leg, feet pain continue although not every day and definitely not as severe as when I was on them. I’ve spent a fortune on shoes and continue to soak in a cool pool whenever I get the chance. It’s muscle and bone pain both.
I have exactly the same. I have been in watch and wait for four years and believe it is caused by my CLL. At a blood cancer forum I attended ( virtually) last year a podiatrist said that it was neuropathy was quite common in blood cancer patients. I intend to get an appointment with her at some stage and will ask her to elaborate. I let you know what she says. I just live with it. I don’t have diabetes and lead a healthy lifestyle which includes at least an hour of aquajogging most days.
I have had the same and it is getting worse. As well as my feet it is affecting my legs. The left side is worse. My big toenails are ingrowing and brittle. One nail has a piece broken. I have seen a podiatrist and she says that they cant remove part of the nail because I am being treated.
I have been taking Ibrutinib for just over 3 years. The dose has been reduced to 140mg 6 weeks ago.
I told my gp that my legs were really bad with nerve pain and he tested me for vitamin B12 deficiency. It was low and I have just finished 5 weekly injections. I did wonder if cll or Ibrutinib could cause this.
I am seeing a rhumatologist in November and I will speak to them about this. Anne uk
Please check your B-12 levels. B-12 deficiency can cause tingling and if not treated can cause permanent nerve damage. I had this problem and was cured initially with B-12 injections and later with pills
I think it is too late for me. I have just had my B12 levels checked. They were really low and the 5 injections havent worked yet I thought things were better but my feet and legs are painful, numb and tingling. B12 is not part of bloodtests. I assumed that as I take certain meds it should have been tested. Its not about diet but the bodys ability to absorb it..
hello there, I have this too - shins and feet and no knee jerk reflexes. I liken it to wearing close fitting rubber boots! Happily for the most part numbness is it and pains (like mini electric shocks every few seconds) very rare and not long lasting . I am on watch and wait and treatment naive. First noticed this over four years ago in France. Many tests done including one with electric shocks etc (fine where I had no feeling, not so fine where I did). They found no cause so decided it was “probably the cll”. Specialists here mention it every time to ensure it’s not progressing. I think the loss of feeling is deeper than it was but has not moved. I have just become used to it. The only issue is if I close my eyes and I’m not touching anything I tend to lose my balance a bit as I’m getting no messages from my feet. I also can no longer balance on one leg! I regard it as one of the “joyous little” symptoms of having cll and I feel grateful that for me it is not worse. Anyway, after that essay - you’re not alone...
Hi there, I also have numb and tingling toes and feet. Always worse in bed at night. I’ve seen a neurologist, had nerve conduction studies, with no real answer. He ordered extensive blood tests, all of which returned negative. The Neurologists only suggestion was to take Lyrica. I’ve read about a few people with CLL experiencing the same. It’s very unpleasant and uncomfortable, so you have my sympathy. If you find a remedy, please let me know. By the way, I’m watch and Wait.
I had something like this around 2015. The tingling was running up and down my spine too. I upped my magnesium consumption and quit drinking the strong coffee that I was drinking back then. The improvement was pretty fast and remarkable.
I find this interesting as i developed peripheral neuropathy, then was diagnosed with high count mbl.
The neuropathy causes tingling and burning in my feet , and i cannot tell with my feet if the water is warm of boiling. It has also affected other bodily functions. The neurologist said its small fibre neuropathy, but ideopathic as i am not diabetic.
i am even more convinced now reading the above its a reaction of my immune system to the blood cancer cells even though they are at a low level.
I, too, have peripheral neuropathy (PI). I first noticed it about 1-1/2 years after beginning ibrutinib. I've now been on ibrutinib for over 8 years. I mostly feel it my feet although I also have tingling in my fingers. I wonder if those on other BTK inhibitors also have PI. I guess it remains an unknown whether it is caused by our medication or our disease. Like you, I just keep on keeping on. "A pill a day keeps the cancer away."
same here. Neuropathy in the soles of my feet. Feels like I’m walking on pads. I just live with it. I’ve been on full dose Ibrutinib for four years now.
My husband had the same when on chemo for solid tumor--so bad he couldn't button buttons. Oncologist from John Hopkins suggested vitamin B6 and/or neurontin (gabapentin). Not sure if it helped or stopped it from getting worse, but just remember that FWIW.
We sympathize with you all, having the same issues you've all described. My numb, tingling, burning feet are always far worse at night and, especially, laying down. *** It began years ago with my CLL, but has significantly worsened when I began taking ibrutinib in March 2020. *** I can also state with certainty that the ingestion of carbs, especially towards evening, makes my feet feel far worse. *** What I've begun doing is taking two Zenium pills (a natural sleep aid), and four capsules totalling 1000 mg calcium, 500 mg magnesium, and 400 I.U. D3. These greatly assist in both getting to sleep and getting back to sleep after night trips to the bathroom. *** Also, when my feet burn and tingle too much to bear, I stick them in cold water, regardless of what virtually all websites suggest.
All I know is that I was on an Ibrutinib trial for 15 months and had the worst leg cramps ever. That was in 2015 and they have lessened some but occasionally still get the leg and foot cramps.
I had numbness and tingling in my feet which I learned were from my shoes. I have high arches and cannot wear most shoes because they compress the nerves on top of my feet. Per podiatrist's advice, I now buy only certain shoes and skip or loosen the laces over the arch. Never bothered me until I was in my mid 40's. Maybe get input from a podiatrist to at least rule out a mechanical origin.
This makes a lot of sense, since we lose some of the fat pads on our feet as we age. In addition to our foot bones continuing to grow. So brands that once were very comfortable, may no longer be, and any insoles may need to be reassessed periodically to make sure they are still the optimal ones.
I've had the same thing for years. It started with just my pinky toes and one morning I got out of bed and both feet had total neuropathy ! Went to many doctors. Had CLL but no meds. Don't think it's CLL related. I feel like it's more compression of my spine somewhere. I do have degenerative disk disease. It IS a pain you're right. We learn to live with it. When I was taking Zanubrutinib I did find it got worse and my toes started cramping. Been off meds for a month while I'm dealing with other issues. Only thing that's changed is no cramping. I've read that sugar can cause it but I've gone sugar free and no difference. Just don't walk on hot asphalt like I did once !!! Ouchie!!!! 😳
I had something similar. Ended up testing for MS and thank goodness it came back negative. My Dr. eventually decided to switch me to Calquence from Imbruvica and it faded. I had some other side effects that also faded, so it was a good move for me.
I am on W&W (diagnosed this past November). I have pain that started about 2 years prior to diagnosis. It originally started in my left foot and is now in both feet, both legs. It is a sharp pain that more often than not feels like it is a burning pain as well. It progressed to both feet and legs slowly over the course of about 3 years. I am now occasionally feeling pain in my spine. I’ve mentioned it to my Hem/Onc, but he says leukemia doesn’t typically cause this kind of pain. He has told me to mention it to my GP next month and see what he says. I’ve not had any treatment yet, so it isn’t treatment related. My B12 level was very low, and I was told to take B12 and Mag. The supplements helped for about 2 months, and even though I continue to take them, they no longer help with the pain. I really feel like it is somehow tied to my blood cancer, especially after reading through this post. Sometimes I have all the confidence in the world with the doctors who treat our form of cancer, and other times I feel frustrated because it is easy to dismiss what they feel isn’t “common”. 😔
I had swollen knee, ankle, toes and plantar fasciitis during my treatment with Venatoclax and ibrutinib and I chose to stop treatment when I achieved MRDu after about 5 months of this combo. Those side effects gradually subsided since stopping treatment except neuropathy under my right foot till now.
I managed my neuropathy with Amitriptyline 10mg & melatonin 750mcg (slow release) initially. Please take a look at the article below:
So far, the R-Lipoic acid and B complex are working well as I don’t feel the discomfort under my feet most of the time, BUT I ended up with insomnia! Such is life 🤷♀️
Would appreciate any input on any other options or which of the above is a better choice…. 🙏🏻
My peripheral neuropathy started several years ago in my toes - before my CLL diagnosis - but has worsened considerably since starting treatment 3 years ago ( Ibrutinib & venetoclax) and now affects both feet and lower legs. Fortunately for me, my CLL consultant here in the UK did think it might be significant and referred me to a neurologist. Three visits and many tests later no cause could be found; I was told “ I see people in my clinic like you every day - it’s just age “. It doesn’t affect my ability to function day to day although it feels worse at night - recently I’ve noticed my legs feel ‘fidgety’ in the late evening - annoying when trying to relax at the end of the day! My feet are not sensitive to temperature so I take great care when running a bath. Interestingly, my CLL consultant felt these symptoms should be monitored annually but my neurologist did not and was quite dismissive.
It’s important to get it checked out in any case. Good luck.
I have the same numbness in feet, although I am taking Ibrutinib that is not the cause of it, have had MRI scan and have been diagnosed with Spinal Stenosis and awaiting surgery.
I have been on imbruvica for 3 years, at present just my toes are an issue with my left foot. I have had ALL the issues that has been discussed, ankle, knees, hip, swollen foot! I have no other health issues, I talked with my CLL and bone doctors, bone doctor did a few tests. Nothing came back, neither doctor seem have clue. My chiropractor suggested I try B-6, he said that B-6 helps nerves, so I will give that try, I will post update on how B-6 does for me.
Vitamin B-6 (pyridoxine) is important for normal brain development and for keeping the nervous system and immune system healthy.
Food sources of vitamin B-6 include poultry, fish, potatoes, chickpeas, bananas and fortified cereals. Vitamin B-6 can also be taken as a supplement, typically as an oral capsule, tablet or liquid.
People who have kidney disease or conditions that prevent the small intestine from absorbing nutrients from foods (malabsorption syndromes) are more likely to be vitamin B-6 deficient. Certain autoimmune disorders, some epilepsy medications and alcohol dependence also can lead to vitamin B-6 deficiency. This can cause a condition in which you don't have enough healthy red blood cells to carry adequate oxygen to your body's tissues (anemia), confusion, depression and a weakened immune system.
There are multiple causes of neuropathy like spine conditions, peripheral compression like in a condition called Tarsal Tunnel Syndrome, or Morton Neuroma, low B12 etc.
A good orthopedic foot specialist and Neurologist could easily sort this out.
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