neuropathy

[willie11]

anyone with severe neuropathy in feet ?

[MsChief]

Yes - I’m on low dose Ibrutinib, feet crackles, stiff, only way to describe it In the evening with feet up feels worse -. Going to try neuropathy toeless docks - if you try. them - get large enough. Hope Aussie Neil and other experts have some helpful advice too. Best eishes, MsChief

[Sepsur]

less so now

Vitamin b1,6.12 helped me - as did magnesium sulphate

[COOMBE]

yes ! fleeting pains under the arch, nothing really works

[roszika]

I have continual neuropathic pain in my feet and I reckon it was from 2 years on Veneteclax. I complained to my GP but he just shrugs his shoulders

[Dahlia7]

I started to develop neuropathy on my last study drug MS 553 about 7 months ago and it has progressed to above my knees even though I stopping the drug months ago. It’s not good. Nothing has helped reverse it including B vitamins. Tony

[Lenny123]

Yes, may have been CLL or FCR chemo or Ibrutanib. Not clear which. slowly progressive. worst in toes, gradually ascending. feels like feet in concrete. most noticable while barefoot, scarcley so in shoes. some pain.

Scary, have reprted to podiatrist, oncologist. thinking about neurologist.

take Magnesium, vit B complex.

Can live with it, only Pray it gets no worse.

[Hidden]

Mystery pain in my feet is what led to the blood tests which revealed a WBC of 16k last year. I have asked oncologists including my CLL specialist if this can be related to CLL and I have been told that it's unrelated.

[steve5441]

Willie, yes I have developed neuropathy in my feet also. My Doc from Sloan Kettering says there is evidence of BTK drugs causing some of this. I have been on three different ones, and this last one has exacerbated the problem. I even went to a neurologist a Penn Medicine, and he said yes you have neuropathy, and there is not much we can do about it. I am hoping over time some of this will subside, as I am now of all BTKs.

[NYCBill]

willie. I got it too. All over my body..Hands, feet, back etc. occurred during a pause in treatment for related problems to treatment. It was pretty severe—pins and needles all over, hands and feet in hooks, feet feeling like walking on gravel always no matter what. Doctors at NY hospital and HSS, specialists in it, tested things. One of my B vitamins ( don’t remember which) was extremely high likely because I stupidly decided B is good for you and took it. … Both doctors told me PN pretty much sticks with you. I didn’t want to take gabapentin or, I think, cymbalta to allay pain—basically fed up with drugs. Enough is enough.

The very good news it faded after about a year except for my feet. Kind of a miracle after. Hands are ok. Feet remain hammertoes and burn. For burning Ben Gay with lidocaine is helpful. Pedifix sells toe sleeves etc that may be better than dr. Schols. I tried benfotamine and alpha lipoic acid, two vitamins recommended by hospital podiatrist and seconded by PN specialist. Not sure if it did anything but it seems harmless.

Long and short, I would say, many of us are older and cll in and of itself weakens a fading body, opening the door to ills like PN that plenty of older people get. It all seems to go with the territory. Best of luck on the feet. Bill

[Agatesup]

I have non-Hodgkin Lymphoma. Been on Imbruvica first (4 years) and now Calquence. Had numbness in feet and have doing acupuncture for 2 years. That has helped considerably.

[Paint-arty]

Yes, l suffer with peripheral neuropathy in my feet every day, also sometimes affecting my arms too.It was the result of one of the chemo drugs l was given in 2009. I was told if the condition didn't improve within 18 months then it's permanent.

The chemo drug which caused the problem was Vincristine and known to cause nerve damage of the longest nerves in the body, namely, lower legs and feet.

Well in my case the problem has remained for 14 years now. It feels like l'm walking on sharp stones with hot needles stabbing the toes periodically, accompanied by partial numbness under the ball of each foot. Initially l was prescribed a low dose Amotriptoline, but it gave me disturbed sleep with nightmares, so l stopped taking it. Gaberpentine was offered but after reading up about possible side effects l decided it's not for me. So l just take painkillers when it becomes very painful.

[Nanno77]

I was diagnosed on 2014 and have been on ibrutinib for over 2 years. I started with infusions of Obinituzimab before the IB .I have neuropathy in both feet and it has slowly worked it up to my knees. It's not painful but my feet are frequently very hot orcvery cold...strange . Every physician I have asked has told me there's not much that can be done. If anyone out there has discovered a cure please let me know.