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JSEIB

Neuropathy due to cancer treatments

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Due to all my cancer treatments for metastatic kidney cancer, luckily, most of my tumors are now gone.  I still have to stay on my targeted therapy cancer treatment (Votrient) for now. 

My question is, now that I am left dealing with painful neuropathy in my feet from all the cancer treatments, are there any patients out there dealing with this kind of pain?  If so, have you found any medication, supplement(s), or therapy that help to calm down the foot pain?  Currently I take Gabapentin, but it's not helping at all.      

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I am so very sorry to hear about the pain your are having because of neuropathy. I am hoping there is something that will help you soon.

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JSEIB,

Welcome.

Unfortunately, I also suffer chronic foot pains.  In my case, the cause is the drug Taxol and I had 18 infusions of the stuff. Doctors call my symptom a peripheral neuropathy but most lung cancer survivors call it “Taxol Toes”.  My foot pain is chronic at about a level 4 out of 10.  My toes burn, the joints in my toes hurt, and the edge of my heal hurts.  I’ve tried Gabapentin and Lyrica and these didn’t help at all. The anesthesiologists (pain management physician) I consult with told me injected nerve blocks will work, but the medication doesn’t last too long and the body gets accustomed to the medication. Moreover, there is a mandatory minimum period between injections.  I was told that the block works but after feeling no pain, resumption of pain as the medication wears off is very hard to deal with. So I’ve avoided pain blocks.  Here is what I do to deal with my pain.

Protect the Toes

  • Buy 1/2 to 1 size larger shoe than your normal foot size and buy a wide size. I use Samual Hubbard shoes.  They are expensive but worth it.
  • Wear thick woolen socks. Wool is the best cushioning material there is. If you can’t tolerate 100% wool, then buy a wool blend but ensure the wool content is higher than 50%.
  • Buy leather moccasins generously lined with wool. Buy them without a sole and wear them to bed to keep the covers from pressing down on your toes. These are bed shoes only and buy them oversized like your shoes.

Treat the Pain

  • My pain resolution strategy is to tolerate the pain through the day and address it at night so I can sleep.
  • Get a script for Lidocaine Ointment USR, 5% and apply it liberally to your toes and other painful areas of your feet. This will only last about 30 minutes but sometimes that is enough to allow me to sleep.
  • Buy flexible freeze packs with gel ace bandage these to your feet. I use this technique when my chronic pain level increases. It is uncomfortable for the first 10 minutes but then the cold produces a numbing effect that eliminates my pain. Fifteen to 20 minutes of icing produces numbness for about 30 minutes, again just enough for me to sleep, sometimes.
  • Only get in bed when tired. Try and keep a regular sleep schedule. Minimize stress and anxiety because these spike my chronic pain. My doc prescribed Xanax and I take 0.5mg at bedtime if I’ve had a stressful day. But, one can grow dependent on Xanax so only use as needed.
  • Sometimes I have bouts of muscle cramps that spike my chest chronic pain from 3 thoracic surgeries. When this occurs, my Taxol Toes feel much worse. Then I need narcotic medication. I have a script for Tramadol that I use about three times a month. I’m very reluctant to use it because of a fear of dependence and the undesirable side effect of constipation.
  • No non prescription medication address my pain because it’s cause is damaged nerves. Even narcotic medication does not reduce the pain; it just makes it easier to tolerate.

Standing and Walking

  • Despite orthotic-like shoes, standing and walking long distance spikes my chronic foot pain.  So, try and avoid these activities but sometimes distance walking is necessary (like when on a touring vacation). I find I can walk about a mile without spiking my pain and if I rest, I can walk further.  Try and find your own limits.

One thing that was hard for me was finding the patience to learn pain tolerance. If I give in to trying treatment during the day, I won’t be able to enjoy daytime activities. So, I’ve learned tolerance.  

I hope these ideas help you.

Stay the course.

Tom

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How long ago was your chemo?  If It was fairly recent, the neuropathy may retreat some.  I have neuropathy from chemo-- docetaxel aka Taxoterre --that I had 8 years ago for a prior unrelated non-lung cancer. My neuropathy pain was much worse rght after the chemo and got better over the years, mainly in the first couple of years. At first it was up to my ankles but now I just have Taxol toes.  I don't generally have pain, but my toes always feel odd, like kind of asleep. I don't have diffculty sleeping. I  do have to be careful of my shoes to be sure they're really roomy at the toes. Also I have to be careful of stockings/socks, because even a tight sock can cause pain after a while. I  wear compression hose due to another side effect of treatment and  have to get the toeless ones. I walk a lot and same as Tom, walking can cause pain and I have to stop and rest my feet. 

If you have ongoing pain that interferes with your quality of life, you might ask for a palliative care referral. I recommend Katie B's  recent posts under Supportive Care, if you haven't read them already.

Bridget O

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Tom,

Thank you for all your ideas on how to deal with this frustrating side-effect of cancer treatments.  Yesterday my oncology nurse started the process in motion to get my insurance company to pay for Lyrica, which I have never tried.  So far all I have tried was the Gabapentin, which seemed to help just slightly maybe in the beginning.     

Also, yesterday I spoke with my neurologist and he said along with the Lyrica to also add a daily combination of Acety-L-Carnitine and Alpha Lipoic Acid tablets along with Omega 3 fish oil.  He said to give it a good month and see if my nerve pain calms down.  He said, especially the Acety-L-Carnitine has shown to have beneficial effects in many patients with neuropathy.

Have you ever tried any of these three supplements suggested by my neurologist?

Oddly, my nerve pain is mainly on the bottoms of my feet.  I just feel like I am walking with rocks in both shoes.  The lumpy areas move around every day and some days it's the toe pain that's harder to deal with.  My feet are most comfortable when they either have nothing touching them or they are in my athletic shoes with orthotic support.  So far, I can't say I have any trouble with falling asleep or staying asleep during the night due to their pain.

One frustrating part of this is  I am unable to find a soft, comfortable pair of house shoes or slippers...even sandals to just wear around the house. 

Thank you again for all your thoughts on this!

Yes, I will try to stay the course...even though somedays really get me down.

John

 

    

  

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BridgetO,

Thank you for your suggestions.  I have never been on chemo.  I was diagnosed with metastatic renal cell carcinoma in Sept last year.  They removed my right kidney, but the cancer had already spread to my lungs, adrenals, and brain.  I opted for immunotherapy  (4 dual doses) then in March they had to stop the immunotherapy due to complications, and they put me on a targeted therapy drug called Votrient ('it targets only renal cell carcinoma).  I am happy to report that all my lung tumors are gone, and I had so many they were "too numerous" to mention separately on any of my earlier CT's.   Just seven weeks on Votrient has me almost cancer free! 

So, now I am back to work and trying to figure out how to deal with the nerve pain in my feet.  Can you read my reply to Tom and see if you've ever heard of any patients using the three supplements my neurologist suggested yesterday?  Also, I am hopeful maybe the Lyrica will help me.  

 

Thank You!

John      

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To answer your question, I now recall that I took acetyl-l carnitine during and after my chemo. Don't know it it helped with the neuropathy or not- maybe it would have been worse!  I've been on fish oil with omega 3 for years.  I never thought of it as a remedy for neuropathy, but again, maybe it helped my taxol toes recede.   I don''t think any of these supplements can hurt, and if your neuro recommend them they're probably worth a try.

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John,

I take only 2 supplements: a multivitamin and 1,000mg of Magnesium daily. The latter is to offset very low magnesium levels in my blood, another side effect of too much chemo. 

I don’t have any experience with the supplements you mentioned. 

Stay the course. 

Tom

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My Doc prescribed Diclofenac sodium topical gel. I’m on my third time of doing chemo and my neuropathy is really nasty. I have been on gabapentin for quite awhile and though it does help it’s not enough.

The gel really helped.

Maybe you can check with your treatment team and ask them about this.

It really makes a difference for me. 

Ron

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Okay, I just wrote this down, Ron.... thanks for the tip!  I am definitely going to get my doctor to let me at least try it.   THANKS!

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I've had neuropathy pain in my feet from damage from diabetes for 20 yrs and I've been taking Endep for it and it's worked well ...so I'm not sure if it's the same as from chemo caused neuropathy but it's worked well for nerve pain from my spinal stenosis causing sciatica too.  

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Thank you so much for this suggestion.  I've never heard of this medication, but I am headed to my doctor tomorrow and I plan to ask him about it.  I think he will let me try it.  Hopefully, it will help!

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Good luck with this but be prepared to take it for a couple of weeks to start working well and I take it at night because it helps me to sleep 

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