Vent about Permanent Neuropathy

Foot felt like wood this morning. Went for Zero Balancing treatment. Works on blocked energy. Felt like a massage as she worked on tight spot on foot. Walking betterment afterwar

Chloe's mom,

I had a massage yesterday, a therapeutic massage. She always finds knots in my feet, my calves, and my back and shoulders. She works on them with hands and hot stones, sometimes very painful while she is doing it. But she said my feet felt like they ran a marathon, which is far from true! Always feels better afterwards, for a while, till things tense up again.

hi thirsty,

Glad u are here, sorry you find yourself with this problem we all have to differing degrees. It is nice to talk to people who understand right?

The neuropathy I have started after my first treatment too, that included Taxotere.

Then I landed in the hospital with neutropenia and fever, so after that they split up my drugs. I finished with the Taxotere alone, and neuropathy just got worse. They shrunk my dose, I iced my feet but too late. I needed that the 1st session. So I understand how you feell, I am glad and grateful to be alive, but sad at the toll t aken on our bodiies.

I have tried some of the drugs too, like you I don't like the SEs. I'm not on any now. What kind of surgery did you have on your foot? I had a shot in knee today, hope it works out. Because of osteoarthritis.

Thanks for the book tips, good to know.

I have Raynauds and wonder if perhaps the poor circulation made the toxic chemo stay in my feet longer doing more damage. Just a thought after the fact. Bummed that this week when I saw the MO she said IF the chemo helped prevent a recurrence it was only in the single digits. SIGH. I knew ILC might not respond as well to the chemo, but then I wanted to give it my best shot. On the other hand if it helps 2% and the BC doesn't come back all this pain is worth it As I keep saying the pain is less than the bon Mets my dad and brothers suffered

Hi BosumBlues--I feel the same way. I was going through a lot of stress two years ago, but physically, I was obnoxiously active. My husband is four years older than me, and I was often taking care of him after knee replacement, rotator cuff surgery, etc. I was feeling fine when I was diagnosed, and I was grateful to have mild treatment after getting into a drug trial. So it was Kadcyla, then herceptin, radiation, 12 months on exemestane, and 5 months on letrozole. I believe the AIs were the final straw, and when I quit I felt like they had been killing me.

Now my husband is taking care of me more and more. Just finished 6 PT sessions for knee strain, and now I can barely walk because of neuropathy, foot pain, and a groin pull. Maybe I just turned old in the past two years. I started Tamoxifen and seem to be okay on it.

Thank you all for allowing me to join you in venting on this site. I'm grateful I have a couple hours of energy each morning, but, oh, I miss dancing.

I don't want to talk about this with my friends, but I probably do so more than I think. I wish you all something to be grateful for each day.

tangandchris~

The first time I realized how weak my legs were, I couldn't get out of the ocean when walking to shore. I kept falling down. It was terrifying.

I just feel totally deconditioned. Although my weakness seems to be in the quadricep area, I also feel like there is overall weakness in my legs. It's sort of like my legs don't listen to me when I tell them what to do. If I am doing something on the floor (cleaning) or on the ground (gardening) I need to hold onto something to get up.

I am trying to improve my strength amd stamina through a hospital-based exercise program where I am closely monitored and consistently challenged.

I, too, kind of felt that my pre-existing autoimmune condition (fibromyalgia) made me a more likely candidate to develop CIPN. No way to prove or disprove that theory. If anything, it made me really stay on top of my symptoms during chemo, and then quit early (but not soon enough seeing as the CIPN is still lurking now, over three years later.) Oh well, I tried...it was hard to tell when ENOUGH chemo was TOO MUCH chemo.

From these last dozen posts, it seems like we were not sufficiently informed of how we might react over time. Oh sure, sign the consent form, but did we really have any clue?

I've been living in a state of denial, with "oh, I need to sit down and I'll join you later", or "can we turn the kayaks around? I need to go back now." Somehow I've dismissed one SE after another. After I stand up a few minutes and work the kinks out, I can walk fairly well without limping. But more than one time, I've left a store and didn't buy my groceries because my legs were so week. I am excited to plant one shrub but then I have to wait until the next day to do another one. My feet start burning when I'm relaxing.

Also, WE aren't responsible for these challenges, even though every single one of you is working so hard to live the best life you can. Positive note: I'm definitely keeping up with reading for my two book clubs, but I would rather be at Zumba Gold or taking a dance lesson.

You guys are giving me inspiration to keep going. I do better if I'm really inspired (I flew to Baltimore this month for two days to attend a reunion). But now I know I need a sky cap and I carry money to tip when anyone loads my suitcase. My joy was overflowing and I didn't mind having to sit when others were standing. It's when I'm home and have too much time to think that it's hard.

I'm Stage I, Grade 3, ER+ and HER2+, and lucky to have this diagnosis. But if I actually knew I would be stumbling around for years, it would have be so hard to accept treatment. Thank you for being here...I read your posts for encouragement every day.

B-Blues, re: "My thoughts....anyone with stage 1, ER/PR+ should never have been advised to do chemo."

Just to be clear about my own case, my chemo was not for my BC Dx (which I received no chemo for.) I'm a two time loser who got a second cancer and the more advanced stage of that one did scare me into doing as much of the chemo for it as I could handle. Did I REALLY need that chemo? Who knows. That's why I always say I got my CIPN for question mark.

M-Two, You and I had the cold, numb feet (use term loosely, when we could say blocks of wood just as easily,) but now, do you get the burning that everyone else mentions? I didn't get that for the first two years, but do get it now sometimes. For me, it feels like I had walked all day on hot sand...so the feeling is like heat of a friction burn or abrasion. It's not too bad, tho'.

I have the cold, numb blocks of wood as well. I am trying to keep moving as much as possible...

Questioning whether or not to retire.

Love the picture. Glad it didn't show the toenails, since mine never grew back correctly after Taxotere. I would have had an envy moment. Yes, I can sometimes wake up and feel that my feet are normal, but I've noticed a 'flooding heat' almost as soon as I'm aware of them.

The falling thing sounds so scary. Glad you are ok Chloesmom!

Has anyone out there tried nerve "flossing" with any success?

On another thread Serenity has rec'd this. My PT has some training and I want to learn these exercises.

Minus: I am upset about what Taxol did to my toenails as well. Good luck finding good close-toed sandals. I am wearing Tevas this summer for the support I need.

Elinar, minus, bosom, chloesmom,

The foot pic is so pretty, those feet look so relaxed, my feet can never be still when relaxing. Always twitching, itching, burning, pricking, scrunching etc!

I bought a pair of ECCO Yucatan sandals. They are pricey, but they give a very good feeling of stability, your foot does not roll around in them.

My toenails fell off after chemo, they are back but big toes tend to get ingrown nails now.

Chloesmom, glad you are not injured!

Cloesmom, We tend to feel safe in our homes, but this unbalance business can strike anywhere! Glad no injuries.

maryna8, Since the CIPN, I always had that urge to flex and scrunch my feet all the time. It was not because of pain. It was because I wanted them to feel something. It was kind of a subconscious, uncontrollable urge, but I figured, what the heck, it would get the circulation flowing at the very least. Movement is good, right?

I was a little brutal with my feet. Because I could not feel heat or cold with the toes, I used to let hot, I mean HOT, water run over them when the bathtub was filling. Normal feet would have been saying "Ow!" after about 5 seconds but mine could withstand the heat for 30 seconds or more. I was thinking, "Feet, you are staying there til you feel something." I never scalded myself or anything, and after a year, some of the nerves did come back so I could feel the heat, so my "water torture therapy" is discontinued now. I will never claim something like this helped, but in my own perverse way I was determined to make those feet feel something! And don't feel bad for my feet, ladies, because they WANTED to feel something. They were 100% in on it. On a kinder, gentler note, my feet just loved to be jammed between the cushions of my microfiber sofa. Even tho' they could not really feel it that well, there was something about that velvety pressure that was soothing. And something else out of my unorthodox scrapbook was that I made my husband lightly touch a toe and I would have to tell if I could feel it and which toe I thought it was. I was terrible at first, but I think I am at about 95% correct these days. I made my husband knead my feetlike dough, and I would often just sit and knead/massage them while I watched t.v.. I still frequently do this.

I don't pass this long like it's a tip for things anyone else should do. All I am saying is, I just did any old thing that stimulated my feet and in the long run I do feel that the stimulation was probably good for them. (BTW, let me know if you all hear of microfiber sofa therapy catching on, o.k.? Haha.)

Minus~

I need someone to show me in person, but this gives you the idea.

mary- enjoy that garden kneeler! As soon as this rain goes away, it will be following me everywhere I go!

elimar~ Interesting method!! Retraining your brain to have a certain sensation can be done with people that have lost their sense of smell or taste. Basically, they meditate on what the smell of, let's say, freshly mowed grass smells like. They do it often. They will stick their nose in it and think about it deeply whenever they see a lawn being mowed.

The same method has been used to encourage the return of the sense of taste!