it’s quite public that i had had a myriad of issues since starting with the BTKs. Most recently it was cardiac issues which I have been dealing with for two months and ended my tenure in the drugs, Now, about four weeks after, i find myself with neuropathy so bad in my two feet that i can barely walk. Bottom, top and toes are so bad you can’t touch them and barely stand on them with a modicum of swelling too. I don’t know what to do so I am coming to my blogmates for some guidance before I get to my docs on Tuesday.
Ibrutinib/Acalabrutinib and Neuropathy - CLL Support
I also developed peripheral neuropathy in my toes on one foot whilst on Ibrutinib, not sure if the 2 are connected but I can identify with the pain you describe.
I’m not diabetic (the commonest cause) and mine has improved massively but it has taken more than 3 years and I’m still on Ibrutinib. I hope yours resolves more quickly.
I also have neuropathy on ibrutanib it’s very bad like knives or electric shocks in my feet especially T night at bed time it’s horrible. Tegretol was great for neuropathy but I can’t take it with the ibrutanib. As I titrate off the tegretol it’s been truly horrible. I ran to my neurologist and he rxd me lyrica. Hope to god it helps. It’s ok to take lyrica w ibrutanib I got the ok from doc at mda today.
I’ve been taking Ibrutinib for 6 years and only recently started having trouble with my left foot/toes. The best way I can describe the problem is that whilst laying down, my left foot/toes have such an uncomfortable feeling, it is difficult for me to fall asleep. This started happening on and off a few weeks ago. Then last week while walking barefoot in the house, I stubbed my left big toe but there wasn’t any pain or anything. But, a few hours later just prior to going to bed, I noticed that I had a cut on my left big toe with a lot of dried up blood. I proceeded to clean up the cut and everything seemed fine until I went to bed and noticed the same discomfort in my left foot/toes, but it was a much more pronounced discomfort than before and had quite a bit of difficulty falling asleep. I finally did fall asleep, and the next morning, my left foot/toes felt a bit better, but still felt some discomfort. After a couple days, the uncomfortable feeling went away. Tonight, however, the discomfort returned in the middle of the night. This only seems to happen when I’m laying down (or at least that is the only time I notice it). Is this considered neuropathy?
i would say yes, foot is like a pin cushion and almost like toes are numb. I drive my wife crazy as i can’t stop constantly curling my toes while in my recliner. the crazy thing is I am not doing it, it’s like an autonomic reaction. i’ve had multiple doctor and ER visits over this and it was my own revelation which i discussed with a physician buddy of mine who got back and suggested gabapentin. My Onc prescribed that this morning, as i said previously the pain was like a sprained ankle but radiated down and out, happening in left foot a few times first but mid week last it started in my right ankle and i knew i hadn’t done anything because i haven’t done much due to the heart issues I am going through, then when it moved to my left foot it was like confirmation. i also started ALA yesterday which my doctor confirmed today as well. that’s an OTC in the vitamin aisle or on Amazon Prime. has made a major difference.in two days. check it out.
I'm so grateful you posted this as I haven't seen many posts about neuropathy. I started to feel numbness and tingling in my feet about one month into taking Ibrutinib. I could not find any documentation regarding this issue. It's now been 6 months and it seems to be getting worse - I have an appt with a neurologist in a couple of weeks. I'll ask about the Lyrica too. Let's keep everyone updated with their experiences with this annoying side effect!
Just be aware that as KevinCLLITP did, supplements should be discussed with your medical team. Also, Amazon has been struggling for years ensure the quality of third party suppliers:
With respect to alpha lipoic acid "A 2019 review indicated that there is little clinical evidence for effect of lipoic acid supplements on any disease." en.m.wikipedia.org/wiki/Lip...
Several of the sellers of a ALA on Amazon go into detailed explanations of their high standards and compliance. What I think cannot be argued with are the thousands, literally thousands of positive reviews on Amazon regarding the relief that people are getting with ALA.
We are all here to learn. Elizabeth.
i took ALA plus turmeric for a couple of years a couple of years ago, as a matter of fact it help me survive my clinical trial in 2015 and helped me heal after some pretty serious stuff happened. Wrong chemo dose almost cost us our liver. As an anti-inflammatory it is just a few days and I am showing marked progress with my PN in my feet, and swelling is down today significantly.
I bought a new bottle of ALA yesterday at CVS for 17.99 less a $4 coupon and another allocated coupon amount so it cost me $12 and change for 200 caps. I take two morning and two night, and I am taking gabapentin 300s, 1 in am and two caps at bedtime.
When my oncologist at Dana Farber endorsed ALA I started it immediately. I need to buy some fresh new Turmeric as what I bought on Amazon last was a poorly made capsule and not a refined composition. I also tried some Turmeric gummies which you might be able to chew a couple of times, but you surely can’t swallow them.
After my clinical trial ended I was in terrible terrible condition from Ofatumumab and Idealisib. I had had pneumonitis 3 times, I had colitis, a hepatic injury, developed kidney cysts/abscess. The next year I ended up losing my gall bladder due to its involvement. I was flat on my back for weeks except when I was up with chronic diarrhea which lasted for months after the drugs. It took over a year to get back to normal, and I had to titrations down from 240 mg a day of Prednisone which took forever. That’s when I started ALA and Turmeric and I lasted 39 months from end of trial with no progression.
so you're still on ibrutanib is that right? and your team said ok to the ALA? i'm already on 600 mg gabapentin and its not helping or not nearly enough. maybe it would be even worse if i didn't have the gabapentin but i shudder to think how that would be. i'm still on 400 mg tegretol at night but starting tonite i drop to only 200 mg an then week after i'll be off tegretol completely. i dont' know if he will go up any higher for me on the lyrica. i think i'm on a moderate dose to start of 100 mg bid. i think they can go up higher but to avoid extreme dizziness etc they start you off a bit lower. it just takes time for drug levels to build up in your body i think so i'll have to be patient, its hard though. i worry about taking a supplement that is not controlled you never know how much you are getting or the purity of it. i would love to try it but my team would have to say ok first.
As I mentioned above "A 2019 review indicated that there is little clinical evidence for effect of lipoic acid supplements on any disease." Further as Cllady01 pointed out in a reply to your post here healthunlocked.com/cllsuppo...
the MD Anderson trial was both prior to 2019 and what's more, "no statistically significant differences were found between the ALA and the placebo groups for FACT/GOG-Ntx scores, BPI scores, and patients' functional outcomes." So the Wikipedia summary was correct.
I hope you gain relief from the gabapentin.
The study is contemporary with my clinical trial with idealisib in 2014/15, a time in which the drug both almost killed me yet ended up saving my life. while the ALA study doesn’t represent the best outcomes, etc., I had taken it before with significant benefit and when my guy at Dana Farber endorsed taking it I was very ready to start it immediately. This is my ninth year of dealing with worsening disease and narrowing options so anything i can find to provide a little relief is welcome.