Vent about Permanent Neuropathy
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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?
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Re: The icing.
Dana Farber said no to any ice or cold caps. At this time they believe that chemo drugs need warmth to flow at the cellular throughout every part of your body. They also said that more research is needed..
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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!
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I'm taking 500 mg of Mag Glycinate daily. Can't remember why. Lol.
Not having any effect on the neuropathy.
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All the best to you, Becky..
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elimar~ I am pretty sure I could not handle another cancer. Awed by your courageous attitude..
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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.
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I admit I do not know very much about icing, so I will refrain from further comments on that. Others will have better answers, I'm sure. That CRC chemo I had (Oxaliplatin) had a very specific SE...EXTREME pain on touching or drinking anything cold. It was never an option for me.
P.S. I don't get the nail polish thing at all. What's the thinking behind that?
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I think it was something to do w/blocking the light but I can't remember anymore.
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Elimar. The dark nail Polish us to block out the sunlight when on Taxotere the reaction causes nail problems eg purple discolouration. some people use gloves every time they go out.
I used dark nail Polish and nails were fine. Also use 30 suncream protection on skin during treatment. I used simple and it worked well.
Good luck
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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.
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Well....I didn't realize that about the cortisone:( I am also osteopenic and on Femara and didn't know that cortisone could make that worse. *sigh* It's always something. Sometimes I just feel so overwhelmed by all of this and BC has made m worry and think about things that I never wanted to.
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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.
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I get cortisone shots for trigger thumb(s). The problem started just before I was to begin chemo. Needless to say, I was not up for hand surgery then. At first I had the shots in the left thumb approx every 2-3 months. Now I only need them once a year. Unfortunately the right thumb started up a year later, but the progression has been the same - a longer & longer time between onset of pain & shots.
I was osteopenic but chemo tipped me over the border to osteopenia. I now take Prolia shots twice a year (I just had the 2nd one). Funny that not one of my MANY docs have mentioned cortisone making this worse. And believe me I made a lot of noise about the Prolia because I was concerned about TMJ. I will definitely ask, but for me, a "magic" shot a couple of times a year probably beats having more surgery.
Sorry, I've never thought about this in relation to CIPN. I wonder if my fingers are better after the shots? I'll have pay attention next time.
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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.
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MyJourneys - I had a gallon zip loc bag with peas for each hand. I dug my fingers into the peas & did not particularly focus on the palms. I tried to keep hand on the peas there except to get more ice chips for my mouth to ward of mouth sores. I also had a zip loc bag of peas for each foot. I put my feet in soft sided coolers and piled the peas around my toes. In retrospect, I would have iced the balls of my feet too. Since you ice 15 minutes before & 15 minutes after and during the full 60 minutes of infusion, I had double sets of peas that I changed out 1/2 way through. I moved my fingers around in the peas, but tried to keep them dug in the entire time. Be sure you go to the bathroom before you start. I always had a stocking cap, scarf, heavy coat and blanket for this treatment. Good luck
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G46TN I had 4 rounds of taxotere and my body gave out.
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ALL ABOUT THE FEET!
Just popping in here ... Two things that improved my life with CIPN.
NEURONTIN - I take 900 units/day; 600 in a.m. and 300 at bedtime. I have tried weaning myself off, but then my right leg starts cramping up. 900/day is the sweet spot for me.
GOOD SHOES - The 2nd best thing I did was go to a good shoe store, get fitted for orthotics, and bought sensible (AACK!) shoes. It severely reduced my shoe wardrobe (well, not that I can wear any of them now anyway), but it changed my life. I have to buy shoes a size larger that have removable insoles, and replace those with my orthotics. The orthotics were about $50 (New Balance with a metatarsal support for high arches). I have been luckiest with Clarks shoes for fit, comfort & compatibility. i also had great success with of all things, flip flops by Skechers, with the goga mat foot surface. Forms to your feet. Last spring I walked all over Key West in those shoes with minimal foot pain.
I always have something on my feet. My house shoes are TravelTime slides, which also have a skechers type instep that forms to your feet. I never go barefoot. If I do that for even a very short time, the bones in my feet, and my leg muscles, ache and cramp.
BTW, I am 4 years out from my last chemo. I blame the neuropathy on the Taxotere, and the chemo brain on the Adriamycin. But since I am now 5 years out from diagnosis, I figure this is as good as it's gonna get.
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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..
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Yeah, gg, that IS so weird how there can be that period after chemo of not having the symptoms before the permanent CIPN sets in. My window of thinking I had avoided CIPN was only 1-2 mos. Fooled me.
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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
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Chloesmom~ I am hoping that there is love in your life right now that brings you strength.
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Bosum,
I have not read the studies yet, but I know that sugar is a huge factor in NP and CIPN. My roommate has diabetes and intense NP.
I am trying to avoid all sugar but fruit. I am trying to limit my beloved wine. There is no doubt that the connection is there.
I am discouraged, as well. Winter is not helping. I would like to be outside XC skiing with my partner right now. I know I just need to walk and get fresh air every day.
I am still researching those lights to help elevate my mood. I am also trying to get in to see an osteopath for the first time. I believe this has promise. And finally, I am looking for a yoga therapist, someone who specializes in restorative practices.
xoxox
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Garden Gypsy (me too!) - above is the link to the Skechers flip flops. I have purchased twice, paid about $35 each time.
Deb
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Hi to all, Good shoes does make a difference. I find after I clean for three hours or so I pay for it that night with big cramps and the famous electric shocks. I limit my cleaning for others.This winter my hands are acting up. I am dropping things every other day and just touching something seem to irritate me. I am thinking maybe it's my back and not np. It's been a cold winter this year.
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Bosum - is the water therapy helping at all? Thinking of you.
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Fact: The Taxol is responsible for my neuropathy. Fact: It was worth it. I am alive!
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Actually I started a 'silver sneakers' exercise class today. The exercises are done sitting or standing beside the chair. My balance is horrible since the feet are numb & I and I was glad the chair was there for the leg lifts. We used weights, stretch cords and a squishy ball the size of a soccer ball. I feel like a wuss, but I have to start back somewhere. I love the instructor. He teaches a Yoga class at a different facility so maybe I'll try that.
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well have done aqua and it is helpful, I also started doing a class called fit forever which is like what you describe, uses a chair for help, it feels very good and helps my balance
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My PT specializes in LE. I don't have Lymphedema, but I am still in that time period where I could still get it.
If you have not done PT after all this, I highly, highly encourage you to get your onc or surgeon to write a referral (if you have insurance).
Massage...strengthening, stretching...we need it all.
My PT also has a salt water pool. Oh, yes.
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