Vent about Permanent Neuropathy
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Hey everyone! Please accept this invite for a google hangout to discuss our Quality of Life after cancer therapy.... "If you would be interested, we are planning a google hangout to talk about the many life changing effects from our cancer treatments. It is this evening from 9-10 PM Eastern. If you, or anyone else is interested in joining in, we still have a few spots open. Please send me an email at cindy.graeff@gmail.com.... I'd love to have you join!"
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Linda - Background - just over a year out from Taxol and Carboplatin with resulatant PN in 1/2 of my fingertips, feet (toes, ball), left ankle weakness and mild bladder incontinence, the latter two, only in retrospect, that I can now attribute to nerve damage. Neuropathy is gone (or it seems so), except for in feet. Finished chemo August 1 and I saw improvement until about January to April? of this year.
In January, walking on asphalt almost everyday. Feet would burn after one hour. We had a dry winter, so started walking in the forest on dirt roads in April when snow gone. What I perceived as an improvement in my neuropathy at that time, was actually walking on a softer surface. I found that out when I took a walk back on the asphalt one summer day. Felt like I regressed. Now, the longer I walk on the dirt surface, the neuropathy gets progressively worse. If I go over 2 hours, the burning returns. Also the angle of the surface - uphill feels best as I put less pressure on the ball of the feet, where the neuropathy resides. Flat and downhill does not feel so good, so luckily we go uphill, then downhill and suffer only the last part of the hike.
So "flares," no, unless one counts increasing symtoms with certain types of activities. For instance, I recently took a painting class and found out that just standing on cement floors was a killer! Standing for long periods of time at home, painting (now matter how hard the floor surface, though softer better) is a killer. Wasn't doing that before, so it probably would have always caused the neuropathy to flare up, just discovering it now, though.
FYI - for anyone that gets XM/Sirrius Radio. "Doctor's Radio" has been having some great shows that touch on Chemo-induced neuropathy. They're not always easy to discern from the Title of the show, but I think atleast one of them was in the "Oncology" section (On Demand) and one particular show was about clinical stuides using the Puffer Fish toxin for neuropathy treatment - maybe within a Pharma topic?
Today, I heard mention of taking L-Carnitine and Vitamin E as preventative - during chemo. I happen to have done the former, but not the latter, and not necessarily on the advice of my MO. The one item the Neurologist stressed was that he would work with the Oncologist to determine whether the neuropathy symptoms were bad enough to stop chemo - mid treatment. Maybe this would be one step higher than just having the MO ask the patient how they felt about it (like what happened to me), but actually classifying the PN symptoms so the patient might get a better feeling where they were on the scale of just bad to extremely bad and then discern whether they could actually recover from the PN over time.
I didn't get to hear the whole program, but he mentioned a time in recovering as "Coasting," almost as thought it were a stage, when things didn't get better, implying they might start improving again after stalling out (or "coasting"). I hope so, as I've been Coasting for about 6-8 months now and am almost 13 months from finishing Carboplatin (after Taxol). When I get a chance to listen to the remainder of the program, maybe I can find the answer to that question.
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Actually, the coasting phenomenon is a time between the end of treatment, when things seem to stabilize or get better, then things go downhill. When a neuron is injured, it can go through a "dying-back" process, and symptoms occur later, weeks after the injury. This is what happened to me also - finished chemo in Nov/Dec, started having increasing symptoms in Jan/Feb, got really really bad for over a year. I saw a neurologist after the fact, she was very good with diabetic neuropathy but not really on CIPN. Also saw a toxicologist who was extremely helpful in getting a topical cream compounded for me - it had been studied by Deborah Barton, a nurse who is working on CIPN - they got some good results. I got some relief, but not total, but it got me through about a year of healing before it became more trouble than it was worth. I also tried every class of medication to alleviate the symptoms, non of which worked, and all gave me bad SEs.
I think having a neurologist evaluation before and during chemo would be a great step in helping to identify patients who really need a dosage adjustment or discontinuation. I was the "good" patient who just did not complain, and the stupid questions the MO asked about "trouble doing buttons" just didn't even seem relevant. It was more about could I type, hold cold food, chop vegetables, etc without pain. I told her after the first dose I was having problems with tingling in fingers, but she did NOT reduce dose, and I think that was the first of several mistakes. After the 2nd dose, I had pain of 10 out of 10 on the pain scale, my DH actually called the MO to tell her because I didn't - did not want to cause problems, realized there was nothing she could do now as the damage had been done. She still went ahead with 3rd dose, but lowered it and delayed it. The worst part of all this is that the chemo did not work, I had first recurrence 6 months out, and first PET scan was inconclusive (incrased uptake might be residual cancer, might be results of surgery....).
I absolutely think EVERYONE who is going to have chemo that could cause neuropathy should be evaluated and followed by a neurologist!!!! That would be a good first step!0 -
Linda- are you saying you got better, then worse? I've never went backwards except for the period of time between Taxol and Carboplatin, when I took 3 weeks off between chemos. CIPN was getting slightly better during that break, than regressed after the 2nd or 3rd weekly dose of Carboplatin. I only did 5/6 Carbos because while Taxol did more damage, Carbo was taking me backwards to the zenith of Taxol.
Can you explain "coasting" again? It really did seem to me that the Doctor said that was a period of not getting better, or worse, just staying the same. If I'm a year out from chemo, can expect this CIPN to get worse?? OMG
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Kam, if you are a year out, it is unlikely you will get worse.
The coasting occurs in the months after discontinuing treatment. Basically, there is nerve damage with the chemo, so you get the initial symptoms if the damage is in certain locations of the nerve, cell or axons; if it is injured a little farther out, like in the axons, you don't feel the full effect of the damage initially, but the axonal damage results in the axon dying back toward the nerve cell body, and when it gets there, symptoms occur, which can take weeks to months.
I don't think I am explaining this very well yet .... I tried to find a basic article to share that would explain it in simpler terms, but couldn't find one right now. I will try again later when the caffeine has kicked in and my fingers quit protesting all the keyboard work!0 -
You explained it well for me. Which would explain why mine felt worse a few months down the road yet the tingling in the thighs had quit and my mouth. I still occasionally get some tingling in my back and butt thankful not often.
I tried Neurotin this summer but I stopped after two month because I couldn't stand the SE. It did help the lighting strikes but it seemed to make my feet more sensitive to anything that touched them. I also hated the doped up feeling. So until next summer I will deal with it.
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Lightening strikes, I like that. Sorry I haven't checked in for awhile. I was the same, neurontin didn't help the neuropathy but helped with the lightening strikes. I guess learn to live with it has meant for me, stopping doing a whole lot of activities that I used to love to do and having to change professions. That and not talking about it because it doesn't make it better just makes people get sick of hearing about it. You don't have a choice but living with it, but learn to live with it kind of insinuates adapting or adjusting or helping. So much more positive but doesn't fit my experience. The only improvement I've noticed in the past 4 years is at least my MO has quit pretending it will get better
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Yeah, lightening strikes. Still get them even with Neurontin (Gabapentin) and Effexor (Venlafaxine).
I'm a musician - professional oboist, pianist. I have a weekly massage to my hands, arms, neck, chest - and back by a sports masseuse who specializes in hand/arm injuries. It helps with the muscle fatigue I get from the nerve weakness of peripheral neuropathy. Keeps me playing my oboe and piano.
Accupunture also helped but it gets expensive to do more than the massage therapy for me. The massage works best for me personally.
2 1/2 years post still have pain and lightening strikes but intent and focused on getting better.
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kmmd, you have summarized my experience perfectly. Doesn't do much good talking about it continually - tiresome to me AND whoever I am talking to. MO finally sent report to FDA for me. Then I changed MO. 3 years out, still giving up activities. Yeh, "adapting". Crap.
Setting my daily intention: look for moments of grace (joy, beauty, a laugh, a moment of peace). Hoping the same for all of you.0 -
I've been in a funk lately about it. I seem to do that sometimes, but, most days I manage to look for those moment Linda. Even if it is to appreciate sitting and reading a good book for longer periods of time because it hurts to do other things. I love a good book
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Lightning strikes?? (I might..and I underline "might"....have gotten one of those once.) Pain? I just have burning, that's it, and I thought that was bad enough. Just, post-chemo, it was pretty miserable and I couldn't imagine any QOL with that level of neuropathy, but now I just can't be on my feet for as long as I wish to be (hiking, painting, shopping...). My heart goes out to you all that have this, seemingly so much worse than me.
For those that have had this for years, versus months, how long can one expect recovery? I don't think I've seen improvement in the last 7 months....is this it?
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My MO told me about someone who improved after a few years. She said nerve recovery is generally a mm a month so it depends on how much of an area is affected. Most of what I've read says where you are after 2 years is likely where you will stay, especially if improvement has plateaued.
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kmmd - 2 years gives me some hope. Thank you.
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My Dr. said 2-3 years it can imporve. Well all I can say is mine is hear to stay since I have passed the three years now.
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Kittydog, I think there is still a little hope for a LITTLE improvement over time - at least that is what I keep telling myself, especially on the bad days. It MIGHT still get better, but realistically, I just have to move on and do those things that I CAN do for now, and try not to dwell on the lost activities - I do grieve the losses and periodically have a good cry, but like all grief, time heals, and it becomes less painful to contemplate the reality of my current situation so that I am better able to face life as it is, not what I WANT it to be.
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So very true Linda. Picking up feet and moving on! So hard to do some days but for the most I don't dwell on it. I hope you have a wonderful week with no pain.
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So glad to find this thread. I'm in neuropathy hell its developed over the last several weeks. By the same token I'm not thrilled to read how difficult it is to treat.
I've just started lyrica and hope it works sooner rather than later.0 -
{{Chickadee}} - was there a particular drug you are on that is causing it - aware that neuropathy has many causes other than chemo?? CIPN was the worst for me during treatment and a few weeks following, but then started turning around. It's where we finish that is of concern.
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It ramped up on Ixempra. I'm taking a break until mid September hoping the SE goes away. Then we are going to choose a different chemo.
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I've been on Lyrica for about a week and added a B vitamin capsule. My feet are at least tolerable now though the toes are still weird feeling. Before the B vitamin it didnt seem to be easing at all. So whichever one is helping, I'm grateful.
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Hi Chickadee, I'm happy to hear you have some relief for your feet. My onc recommended and I take vitamin B6. If I don't take it, my symptoms are worse, so there is something to it.
As for problems with feet - 2 years post chemo I'm still having pain. This may seem like an odd treatment but I change my footwear often during the day and this helps the worse of the pain. I start the day with sneakers . . . anyone else tried this?
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lifelover - I had to basically throw out all of my clogs. Only flats. Need good cushioning now and since my neuropathy is in the ball of my feet, and toes, any height in the heel just put more pressure on that part of my feet. Why I like to hike uphill
Chickadee - glad to hear you are getting some relief. Have not tried B6.
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Footwear is on my list. Right now I have two pairs of flip flops with some gel cushioning. They help somewhat. Putting on sneakers is not as comfortable as I thought even with inserts. I need to find something for cooler days ahead.
At this point the balls of my feet and my toes are painful but tolerable for walking around the house and yard but not for long.0 -
I can wear crocs only so far. They are light is all I can say. The newer style has a little more support than the first ones that came out. They also have a rubber sole that was the same one used on the original nikes.
My feet also seemed to have spread even wider that they were before cancer. I recently threw away all my dress shoes because I can't get my toes in them. good luck finding something comfortable.
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For me, Finn Comfort sandals are the most comfortable and give me the best support. (They're pricey and pretty clunky looking, but they take care of my feet.) I have arthritic knees, and I need good support and extreme cushioning to cope with both problems. Even so, my mobility is pretty compromised--my balance and stamina aren't great. But I'm walking!
I also change my footwear frequently, and I start the day in my NB sneakers. I've heard the same from people who suffer from diabetic neuropathy.
I hate the loss of mobility and the fact that I just can't wear pretty, normal-looking shoes any more. But cancer sometimes seems to be about losses and learning to cope with them. I guess I never expected normal feet to be one of them!
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I dont think the Lyrica is effective enough. Wondering if the b6 has been the helper. The lightening strikes reduced significantly but the burning and numbness are still debilitating. I bought some croc sandals the other day and unfortunately for me they have a tendency to roll to the left. That caused me to fall this morning when my ankle rolled. I've felt some tingling up my left leg which alarmed me.
I read a study where 59% of patients experienced some relief on cymbalta in a phase III study. Anyone on here find cymbalta helpful.
I treat myself to a 5mg Oxycodone in the evening and for a brief respite I feel high and could care less about my feet. Of course then I have to stay ahead of constipation.
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Chickadee - you might find that "time" is the best medicine. I got much better, noticeably so, for 6 months, once I was done with the chemo that caused the neuropathy. I remember my left ankle being weak and just giving out and I never connected it with neuropathy (I do now) and I also had a tiny bit of incontinence - which I now realize was nerve related. That's gone, thank you.
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Except I'll never be off chemo ever again. Stage IV. I figure I could tolerate some of the other SE's but this one is a devil. I'm on a chemo break until late Sept then we start again but plan to change chemos because the last one, Ixempra, was so difficult.
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Chickadee,
I started on a low dose (30 mg.) of Cymbalta, but found the side effects so strong I had to stop. Between extreme night sweats and vivid bad dreams I couldn't get any rest. If I'd had some relief from the numbness in my feet I'd have tried to work through the SEs, but there was none.
But that's my experience. I've talked to other women who had good results with Cymbalta. I hope you're one of them!
Ann
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I tried cymbalta - not helpful, SEs not worth waiting to see if it would work in time.
Chickadee, am so sorry you are having this along with all the other issues. My feet don't bother me, thank goodness, but my fingers are pretty miserable some days, I have such pins & needles with typing, but just gut it out because I find so much help here on these boards, I just HAVE to type and communicate. I need to get back to using my dictation software, but it is such a pain and makes so many mistakes I have to manually correct anyway ....0
