Ibrutinib/Acalabrutinib and Neuropathy - CLL Support

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Ibrutinib/Acalabrutinib and Neuropathy

KevinCLLITP
KevinCLLITP

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.

49 Replies
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Jm954
Jm954Administrator

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.

Jackie

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?

KevinCLLITP
KevinCLLITP
in reply to mteaney

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.

mteaney
mteaney
in reply to KevinCLLITP

Thank you. I can't say that my left foot/toes feel like a "pin cushion" nor do I feel any pain, but I do find myself constantly curling my toes also, except I do it purposefully trying to relieve the discomfort I am feeling. ALA = alpha-lipoic acid?

KevinCLLITP
KevinCLLITP
in reply to mteaney

yes to ALA

mteaney
mteaney
in reply to KevinCLLITP

Thanks again. Do I understand correctly that the combination of gabapentin and ALA has given you the relief you need from this?

KevinCLLITP
KevinCLLITP
in reply to mteaney

i am picking up gaba tomorrow but kind of amazed at the ALA results honestly. i take 2 caps morning and night.

mteaney
mteaney
in reply to KevinCLLITP

Thanks again.

mteaney
mteaney
in reply to KevinCLLITP

I had an appointment this morning with my hematologist. I told her about the problem with my left foot. She prescribed vitamin B-12. I'm not sure what B-12 is supposed to do, but I hope it works.

I’ll have to try it but I’ll need to get it cleared with my Leukemia team first because I’m on treatment with ibrutanib I don’t think they want me taking anything like supplements without making sure that it’s OK

Understand. My oncologist seconded the taking of ALA yesterday again, so it will be interesting to see what your team says. I just took my first gabapentin. It’s 3x. A day so we will see how that goes. I am not too great with mid day drug taking, i do best when I rise and when I rest at night!!

It’s much worse on my right side than my left ... strange. I’m not Diabetic but I’m on metformin have been for years.... years ago wS prediabetic but it’s been in good control for years I believe

keep me posted on Lyrica. i’m not going to do any treatment for six months or so, but monthly IVIG for platelets. my left foot is recurrent but this time my right foot started then it spread to my left so both are involved, cardiac work up is tuesday and no way this kid will be on a treadmill.

Panz
Panz
in reply to KevinCLLITP

I wasn’t aware that IVIG helped platelets....are you sure?

Panz 🙏☘️💕

KevinCLLITP
KevinCLLITP
in reply to Panz

I’ve been getting IVIG for platelets since 2012. It does not provide lasting, durable effect but it gives me enough of a bump to stay out of the single digits when I have it every month to six weeks. It’s a very quick 70 minute infusion now.

i'll post my updates about lyrica. i think i saw a few posts on health unlocked that other had gotten it for neuropathic pain and it helped. ihope so!

I’ve had it much worse and more often on my left, this time it started on the right and moved to the left, and the right side is waning quickly but the left is worse than the right was.

I receive IVIG every 4 weeks for my extremely low Ig’s but was not aware it might help my low platelets too. My platelets are generally in the 70’s never been in the single digits.

Panz 🙏💕☘️😍

KevinCLLITP
KevinCLLITP
in reply to Panz

I’ve been as low as 3, time before last I was 9 and with IVIG I was 16 four weeks later.

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!

KevinCLLITP
KevinCLLITP
in reply to Ngtinfu

my oncologist recommended alpha lipoic acid and gave a script for gabapentin. ALA is in vitamin area near Turmeric. highly advise you try it. i started two caps morning and night and difference is miraculous. i’ve done four doses now and pain is down 75%.

There are great deals for ALA on Amazon. Elizabeth.

AussieNeil
AussieNeilAdministrator
in reply to Sierrastar

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:

wired.com/story/amazon-fake...

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...

Neil

Understand but my doctor confirmed it and also referenced the MD Anderson study

AussieNeil
AussieNeilAdministrator
in reply to KevinCLLITP

I'm sure the community would be interested in the M D Anderson study if you can find a reference. Neuropathy is very unpleasant.

Neil

if you have a link to this study i would love to see it!!!

See my reply to AussieNeil.

Good health to you, Elizabeth

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.

AussieNeil
AussieNeilAdministrator
in reply to KevinCLLITP

You've had a very rough time treatment wise and that's tough.

With respect to the ALA and turmeric, I'd say the evidence for turmeric helping was considerably better.

ncbi.nlm.nih.gov/pmc/articl... (rat studies only)

ncbi.nlm.nih.gov/pmc/articl... (closer, diabetic neuropathy)

Neil

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.

AussieNeil
AussieNeilAdministrator
in reply to Sierrastar

How To Spot A Fake Review On Amazon

au.pcmag.com/how-to/62633/h...

$16.99 for 240 , ordered one today!!

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.

Standard dose of GABA is 1 300mg x 3 or 1 300 mg am and 2 300 mg at bedtime. I can tel it is working for me already.

Ngtinfu
Ngtinfu
in reply to KevinCLLITP

Hi, it's great that you are finding relief! Are you getting these results from the ALA alone or in combination with the gabapentin?

KevinCLLITP
KevinCLLITP
in reply to Ngtinfu

Initially just the ALA, but I got the Gabapentin from pharmacy today and started that this afternoon.

Ngtinfu
Ngtinfu
in reply to KevinCLLITP

Good luck!

I have been on ibrutinib since July19

Medically it is doing its job but my side effect are disabling and many. One of which is neuropathy. I experience it in my legs and feet and can toy relate to your condition. Hopefully it will subside for you a d pass over time away from the drug.

Cheers!

I’ve had at least a half dozen serious side effects from these drugs and unfortunately its not over yet, even though I stopped the drugs four weeks ago.

Sorry about the typos. English is my first language. Lol.

I have had it with the side effects. My quality of life is at a standstill for months now.

Were you on Ibrutinib first? If so did you switch to Acalabrutinib as an alternative ?

7 months of Ibrutinib, then cardiac arrhythmia, then a month of Acalabrutinib and it got worse. BP and Heart rate all over the place. No more!!

I too am fed up. So what are your plans for an alternate treatment?

i have ITP so I will get IVIG every 4-5 weeks for platelets and we will follow my numbers and indicators for hopefully six months or so before i have to start again, probably Venetoclax. it is really dependent on whether or not the arrhythmia i have now from Ibrutinib will be permanent or not.

Here is some info on Alpha Lipoic Acid and MD Anderson. google.com/url?sa=t&rct=j&q...

AussieNeil
AussieNeilAdministrator
in reply to KevinCLLITP

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.

Neil

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.

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