Vent about Permanent Neuropathy

Bosum~ I am 8 months out from chemo. It has gotten worse since I started teaching again.

elimar- The neuro appointment focused on the brain fog - memory and processing speed, etc. They didn't have time to assess the CIPN because I was so wiped out.

My roommate has diabetes and has terrible neuropathy...He refuses to take the Gabapentin because it creates serious brain fog.

All these drugs and treatment have really hurt my cognition. A university research pharmacist told my partner that it's not the life-saving drug that did this to us; it's the "delivery" drugs. Delivery drugs are her specialty area..

I am pretty discouraged and tired. Hang in there with me, ladies!

elimar~ Results and reccomendations in 3 weeks. It takes them a while to write a report, consult and create a DX, etc.

Continue to give your onc team hell, just for me. I was so frustrated by my original team that I ended up getting my treatment via my 2nd opinion - 4.5 hours away! There were many long, difficult trips throughout the past 13 months.

Elimar - you're absolutely correct. I keep my brain working managing my doc teams too. If I didn't, who else would care? I'm going to take the month of March off from docs completely. No appointments & no communication with docs. That will be some kind of treat!!

HI everyone,

I don't have neuropathy (as of now) but I start Taxotere tomorrow....did any of you do anything during treatment to try to prevent neuropathy? I"m so afraid to have long term damage....did you ice your hands/feet? suck on ice chips, do the dark nail polish, vitamins or something I should start etc etc

I finished my AC 3 weeks ago...and only had tingling in my feet for one day, then it went away....Any advice for someone just starting out on taxotere?

I hope those of you suffering with this get some relief and improvement soon!! praying for you!

Thanks!

BG46TN, No firsthand exp. with Taxotere. Maybe check out the "Cold Cap" thread? After doing your homework, do not be afraid to assert YOUR will onto the docs regarding your treatment. I mean, who's body are we talking about anyway, and who's paying whom? I had a mom that did Taxotere for 9 mos. She was not a communicator--read: complainer-- like me, and one day after reading some threads on here, I asked if she had any CIPN. She said, "yeah, I have numb feet." I think the thing to watch is the CUMULATIVE dosage you will be receiving.

Yes, did you all realize that the toxic thresholds of our chemo drugs are actually known for most, maybe all, of our chemo drugs, not that your doc will volunteer the info. This is something you have to Google out for yourself. Although individuals will have a range or spectrum of varying responses, the info. of when a percentage of patients, let's say 50%, will experience major SEs can be found. Gotta look for it. But finding out after the fact doesn't help much.

BosumBlues, I don't know that Magnesium helps CIPN directly. Can I share my theory? (I imagine you said I can) Magnesium will help to relax muscles. Perhaps you just got a better, more restorative night's sleep? In my experience (with both FM and CIPN,) if I am well rested, my nerves do a bit better the next day. Easy enough to test if you correlate the quality of your rest for a month or so with the levels of badness from your CIPN. See if it matches up. Let me know if I am onto something, or just having another idiotic idea.

Blownaway, That is a pretty bad experience. Too bad the doc was so against icing. Was he/she afraid you might get mets to your finger? That' just so unlikely. I'd say stupidly impossible, but never say never. You are not the only one who looks back and would have done thing a bit differently.

[[[My Story: I know where my CIPN came from. It is from a drug called Oxaliplatin. It's not a BC drug, because I had CRC. That was my second cancer, which in some ways I was more prepared for, although still it was mind-blowing to have a second ordeal to face. Anyway, I found the stats on that drug and there was a threshold when 50% of people reported nerve damage in hands and feet. I was expected to have 12 rounds of it (along with 5-FU, which is a drug sometimes also used for BC as well.) I started to have nerve involvement after about 3 rounds, and they cut my dosage a bit. At 5 rounds, I could feel it affecting the nerves going up my legs and, worse, I began to have vision disturbances, which was a deal breaker for me. I asked to skip the Ox for round 6. Stupidly, I resumed Oxaliplatin for round 7, and could feel the leg nerves again. As I mentioned earlier, because of my pre-existing FM, I was paranoid about getting CIPN, so I called it quits on Ox after that, finished 3 more rounds of the 5-FU, at which point I felt poisoned to the max and told them I was done. {Edited to add: Many of my CBC/CMP numbers were going out of the normal range a this point, to validate that toxicity.} I am sure I would have severe CIPN if I had not truncated my chemo plan. Although 5-FU is not known for CIPN, I feel that it prevented my damaged nerves from healing while I was on that a further 6 weeks.

The weird thing is that the symptoms I just mentioned were the acute nerve damage. After I stopped the Ox, my nerves settled down and after I had my last round of chemo (#10) I did not have any CIPN to speak of for about a month. Then, it was like it came back and it was the chronic CIPN that I now have and that has never gone away. I kick myself now for taking that one last round of Oxaliplatin. I kick myself, but my foot doesn't even realize it...hahaha. A little CIPN dark humor.]]]

I'll just finish by saying...can you tell my hands are not affected by CIPN by the length of this post?

Thank you BlownAway, How many rounds of taxoteres did you have? I will have 4 (3 weeks apart) Im not planning on icing anything for tomorrow, but we'll see how I do. I did put on the dark/opaque nail polish...I figured that cant hurt LOL

As for the cold caps, I didn't do it for a couple reasons...one I heard the same as gardengypsy about the chemo not getting everywhere, 2 my sister had BC 3 years ago and one of her "chemo friends" did the cold cap and has since been diagnosed with brain cancer....is it related? who knows....but I didn't want to take that risk...I'd rather be bald for a while. and 3. it was too expensive....

But I think ice on the hands/feet might be different....a few of the women from my Nov chemo group on here are doing it and have avoided any neuropathy...

thanks everyone for responding to me!

All the best to you, Becky..

BG4 - I had taxotere and carboplatin, along with Herceptin & Perjeta. (yup - another one of those platins like Elimar's oxilaplatin). After round 4 I felt some numbness. My MO gave me a choice to cut back but since I am ER/PR negative and HER2 positive there weren't really any more hormonal options down the road at the time. We discussed it again after round 5 and I went ahead at full strength for the last round. So it's on me - but I still believe made the only decision I could at the time. Unfortunately, even w/all that I did not have a complete response so I had to have Adriamycin & Cytoxan after surgery. I was only able to handle 3 rounds instead of 4 of that combo.

As for icing, I did ice my fingers & toes during the 90 minute taxotere, and for 15 minutes before and after. I used frozen peas. They are so much more adaptive to movement than ice cubes. Everyone at my infusion center thought I was nuts. I did not loose any nails, although my big toenails were damaged. I did not do a cold cap since you have to have a partner. Also my MO was on the fence about whether it would mess us the effectiveness of the chemo. There is an interesting new study out that shows cold caps are OK. Check out "Breaking News" thread from the mods.

I did paint my nails dark navy. Oh boy was that ever hard to get off. The next session I used just dark red. I don't think it made any difference - but who knows???

Good luck. I hope you've joined a current chemo thread - like January 2017 chemo or Feb 2017 chemo. It was useful go bounce ideas & side effects off others going through the same thing.

I think it was something to do w/blocking the light but I can't remember anymore.

I posted a couple of weeks or so back about concerns of PN. I still haven't gotten the answers, but I did see an ortho about my knees that have been killing me. I have major arthritis in my right, he said bone on bone and the left isn't much better. He gave me cortisone shots in both knees and it's like a flipping miracle how much better they feel. In addition to that, my feet feel better too. This was almost 2 weeks ago and starting yesterday I've been feeling some break thru pain in my knee and then my foot started too.

So my question is, can I eliminate PN if cortisone shots helped those issues...maybe this is all an arthritis issue in my feet as well? I know ya'll aren't doctors I'm just looking for experiences and just someone to talk to about all this crap.

On the icing thing, at my first chemo the nurse gave me ice for my mouth and said I could put my fingers in it. I didn't really understand how important it was and it wasn't pleasant so I didn't continue with it. No one else suggested it at my other tx's.

In my own experience, and regarding the neuropathy associated with Fibromyalgia, I think steroids did make a difference. During chemo (which included steroids) and for over year after chemo, my FM sensations were gone. I don't think there is conclusive evidence supporting steroids for helping with FM neuropathy, but there are many anecdotal stories out there, similar to mine.

The impairment we get with CIPN is with the axonal transport of the nerves in question. I just checked whether steroids would help with that. The literature said no, but it also said no for Fibromyalgia---so I reckon that the answer is maybe.

The trouble is steroids are nasty, and even nastier in the long term, so they cannot really be a treatment for CIPN. However, if any of you do wind up taking a short course of steroids for some other condition, it would be interesting to hear of any effect it might have on your CIPN. Please do report back.

Hi everyone, I begin chemo on January 24, and want to ice my hands and feet to (hopefully) prevent neuropathy. I'd like to use bags of frozen peas for both hands and feet. Do I just need to focus on my palms and the soles of my feet, or do I need to have a bag for the tops of my hands and feet, too?

Also, I was experimenting with a bag and, whew... I wasn't able to handle the intense cold on my palms for more than a minute or two before taking my palms off the bag for a few seconds, then putting them back. Is that okay? Or do I need to keep them on the bags, regardless of the pain?

Thanks for your advice.

G46TN I had 4 rounds of taxotere and my body gave out.

GirlPowerDebbie~ Yep, both those things are working for me. I had 4 rounds of AC and 4 of Taxol. It shocked me how the CIPN set in hard when I was already 6-8 months out from chemo!

Would send me a link to those sketcher shoes?

I have also heard here on the boards that the Adidas sandals with all the bumps help..

Mine started the last week of chemo and ramped up to extreme 2 months later. It's now almost 2 years. Comes and goes. Never know when it's going to hit like lightening. Just achy the last few days and toes burning. No electric jolts this week. Almost fell down again when I side stepped and rolled over on the side of my foot where it's numb. I have to be so careful stepping backward or to the side.

My brother is stage 4 and and losing ground. 4 years ago lost another brother to mets and 2 years ago our dad. I will live with this pain if it kept the cancer away