Vent about Permanent Neuropathy
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Ozoner,
I was reading a little and read that we have almost 45 miles of nerves in our bodies, that's amazing! I guess we have to say we are lucky to have any working nerves, maybe?
I was also surprised to see how many things this condition can cause, way more than the prickly, hot feet that are common with Neuropathy. I read that it can indeed progress to the digestive system and on from there, but it won't necessarily progress for everyone. This CIPN is very unpredictable. I think there are a lot of oncologists out there who don't know a thing about CIPN.
A friend of mine who is a physical therapy nurse told me that her patients who stay busy and keep their minds occupied do much better than those who concentrate on their symptoms. I find as well, usually things start hurting and buzzing in the evening when I sit down to relax. I put up with it, because I have to rest sometime! I have avoided taking the drugs offered, when it first started my thoughts were, if I am taking something to avoid feeling it, how will I know if it's better? And the pain did lessen, to the degree that I thought it was all over and I had a few months of almost no symptoms. And then about a year after chemo was over it kicked back in one day and has not left me. But it's not at the pain level it was on right after chemo, so far I can deal with this; the worst part is the leg weakness.
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Has anybody try neuroquell for their neuropathy?
On amazon there is what looks to be a knock off neuropaquell as well.
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I just came back from a late night walk, I was a little off balance and my legs are quite numb now. This is not unusual, but I thought exercise was supposed to help, not make it worse.
Has anyone tried medical marijuana? ChloesmomI haven't heard of neuroquell.
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neuroquell is a vitamin herb combination with a lot of B vitamins in it. Website is healthassure123.com. The naturopath recommended it. Not sure if I want to spring for the cost, but if it might help...
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Hi. I have CIPN due to Taxol. Some things have helped, others not so much.
Orthotic shoes: Vionic support sandals are good, feet are in quit a state when I wake up, then get a little better.
Yoga socks: has some gripping and separate toe holes. Good for the trampoline.
Electric stimulation: Had 2 treatments, it may have helped but last time made me nauseous.
Forced walking: Okay, but I can only go about 30 minutes without foot puff
Theraputty: I have two strengths and do exercises in p.m. helping hands
Macrame: It was good for fine motor skills, at least you get something cute in the end.
Lyrica: OMG taking this drug was terrible. I was as high as a kite. No, no, no.
Mini trampoline: This is suggested for BC recovery and is also called "rebounding". Look it up. I think it is really helping, but I had to start slow. It also made it painfully obvious that chemopause has messed up my pelvic floor! Weak!
Does incontinence and constipation come along with the CIPN, or the general estrogen halt, or the tamoxifen?
I don't like my Oncologist any more. He is really not into fixing side effects. I would still take Taxol, I am not blaming him for the neuropathy, just need more acknowIedgement that I suffer. I am hoping that the urogynocologist can help me more.
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Hi MexicoHeather,
I have CIPN which includes constipation and incontinence. It seems that when I am able to defeat the constipation that the urinary urgency gets better too. No one mentioned these SEs, and it took me a while to figure it out, but I'm positive now the chemo is the cause (Kadcyla for me).
I'm on a trip now which will include walking, but I hired a wheelchair at the airport because my legs were weak. I take dance lessons, take short walks, Zumba Gold, and low-key birdwatching in my kayak. No where near as vigorous as before, but I'm thankful I can have fun.
I also have moments of instability, with a stagger sometimes. So weird all of this seemed to come out of the blue. I take Senna S for constipation and am armed with Poise pads when I am out. Weak legs, burning feet. But two years have passed since chemo, and I'm ever hopeful that I'll be able to keep up with my friends and not talk about my problems.
Please let us know what your new doctor says. I have had some improvement with kegel exercises.
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I was recently diagnosed with Triple Positive breast cancer and I've had peripheral neuropathy for several years. I've never had pain or numbness but have tingling/pins and needles in my feet which extends to my lower calf. It's annoying but doesn't really affect me otherwise. Now I'm facing Taxol, Herceptin and Tamoxifen or the other kind of hormonal drug. I have also had carpal tunnel for over 30 years, again without pain and only a little sporadic numbness which has actually abated over the years. My mother also had both of these conditions
I make dolls, and this part of my life is extremely important to me, even if it probably sounds stupid. It's not like I'm a concert pianist or something. I am rarely found not having some kind of needlework in my hands.
I'm thinking about refusing treatment. I'm wondering if anyone here has dealt with a situation like this and how they handled it. I'm 65 and otherwise in good health.
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Hi, Lita19901
I will be 65 in September, right there with you. I am having some mental issues about being Medicare age! Apparently you survived all that, it gives me hope!
That is a tough situation you are in. I have wondered what I would do if I had to face another cancer and have more neuropathy-causing drugs. I don't know, because I don't think I would know until I'm there in that situation. I do know that if you are E+P+H+, there are drugs that target all of that. I am Triple Negative, so I had Adriamycin, Cytoxan, and Taxotere in chemo infusions. There is no targeting pill to follow up with for my type. You, however, do have drugs available that can target the tumor-receptors that you have. And yes, if you get Taxol, it may cause more neuropathy. I am sorry you find yourself here in this predicament, but we are here for you. Please keep in touch and let us know what is happening with you.
And your doll-making is a wonderful talent, don't discount it! I'm sure it makes you happy. You should post a pic of one of your dolls. It's easy, click the little landscape pic thingy at the top of your post.
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Hi, Bosom
Sorry about the burning starting, but you never know, it may be gone tomorrow. This darn thing is so unpredictable. It's scary because I wonder if it will just get worse, but then sometimes it seems better. I am sorry about the fatigue and weakness too, I know exactly what you mean. I am still doing acupuncture every 3 or 4 weeks, and I think it helps. I don't think exercise helps, but it may help our muscles hang in there. The doc who did my EEG said the nerves in my legs just aren't sending signals properly to the muscles, so that tells me we really have not much control, when the muscles think they are tired, that's it. I did go to Europe in May with my sis-in-law, and I learned I could push myself beyond what I thought. It was the best thing for my mental state to know I could do it.
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MayryMary,Thanks so much for responding to my post - I really appreciate it!
The problem with being triple positive with existing neuropathy is that all the medications cause neuropathy. I was holding onto the hope that I could at least get chemo but now that door is closing.
I did attach a picture of one of my dolls - she's about 10 inches tall and this outfit is a work in progress. I think the length of the top need to be longer and the also the ruffle. Sorry the picture is so big but I wasn't able to resize it - enjoy
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I had body wide sensory neuropathy when diagnosed with breast cancer. As such, I didn't receive taxanes. Although my neuropathy did flare attimes during chemo, I don't think that chemo made it significantly worse. Feel free to PM me if you like.
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lita, your doll is charming
I have had nueropathy for long time, way before my diagnosis in 08
Now that, i have reoccured, trying to deal with taxol but my onc is helpful and my hospital also works with patients
I also ran into an old pal who recently got his phd in physical therapy with a specialty in cancer survivors and he has offered to work with me regarding excercises, his thesis included nueropathy
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Lita,
Your doll is just adorable, do you sell them or make them for your own pleasure and collecting? I can see how you can get very absorbed in getting the details just right.
The chemo drugs that can cause the neuropathy side effects that we TNs are given are the taxanes primarily, Taxol, Taxotere etc. Also I have heard of some women getting the cisplatin drug, that also can cause it. There are more, but the most common ones for us are the above. When you say "you hoped to get chemo but that door is closing", does that mean you have decided against it?
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Hi, Proud to Spin,
Sorry about your neuropathy and your BC recurrence, if I read your post right.
You mentioned your pal, a PHD, who wants to work with you on exercises, he did a thesis on neuropathy. It would be great if you could share some of what you learn, I am always looking for things I can do to up my strength and endurance, I lost so much of that during treatment and side effects. Do you have the leg weakness caused by CIPN as many of us do?
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mary, i will be very happy to share any tips r exercises with folks on these boards. Timmy is a great guy and was a big help to me the past. Then he got busy with his studies. I was surprised that anyone would be working on such a specialty but now his studies seem complete. I will let you know when we get together
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What a tough decision, Lita. I don't have all your details, but this site might be helpful in reaching your decision:
Statistics are just that and someone has been to be the "rare exception," but I would also ask my oncologist for some very specific information on the risks and potential rewards of the proposed treatment options.
I began having neuropathy in my dominant / right hand during my 2nd Taxol treatment and it ultimately affected that hand, my toes, the soles of my feet and my shins. I had no history of neuropathy, but some hand coordination issues related to severe Fibromyalgia. As I dropped my K-cup for the third time just trying to make a blasted cup of coffee yesterday morning, I was deeply regretting the Taxol, BUT many women want to feel confident they've done everything possible to avoid a recurrence / metastasis. There is no right answer, but I hope you reach a decision that brings you peace.
Lyn
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Mexico~ I liked your analysis of everything you've tried.
I have not posted in a while. Hello, Chloesmom, Bosum, and Mary...
I have had NP for about a year, and due to the neuropathy, I was forced to retire from my career as a teacher one month ago. I am living on private disability insurance (because of the neuropathy) and my teacher retirement income.
I take 1800 mg of Gabapentin daily. I'd say it barely keeps the pain away; if I get too busy I pay for it later.
This spring, I spent an hour or two in the garden daily. The neuropathy has really limited me. I bombed out of a post-cancer exercise program.
Six weeks ago I sprained my ankle dancing. It has not healed. I've spent a lot of time with the chiropractor, but now heading to the orthopedist.
My partner and I decided that it's time for a new home, with access to more community and health care for me. On our recent house hunting excursions, I decided that I must have a bedroom on the first floor. I also decided not to choose a home that would entail taking care of animals or growing a big garden, which I have done for many years.
I feel very limited. I miss my activity level. I don't spemd as much time with my grandsons anymore. This is not fun, but I am grateful to be alive.
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Hi, MexicoHeather,
I liked your rundown of things you have tried for CIPN treatment too, can't say we don't try! I have looked at the rebounders, haven't got one yet, I have tried a lot of things too that didn't work out. All I accomplished doing most of them was to hurt myself a little more!
I also tried several different drugs, the worst I tried was Amitriptyline, no offense to anyone taking it who finds it helpful. It did block pain, but I felt like I was wrapped in cotton balls, fuzzy-brained and nauseous at the same time. I am not taking any of them right now.
I hear you about your oncologist. My doc is not interested in anything except cancer, tumors etc. As far as she is concerned, the effects of chemo are gone after 6 months. She is a good doc, but I think the very large percentage of MOs are not schooled on long-term neuropathy. I do think more attention is being given to it in research labs and so forth. Right now we just all seem to have similar experiences with individual twists, but I am proud of all of us here, we keep trying!
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Hi Lita...not really understanding why chemo is in your treatment plan with your diagnosis. Is it because you are triple positive? Did you have a high oncotype score? Mine was 27. I have an autoimmune polyneuropathy and my MO said she wouldn't even consider chemo because of it. Im 64 and its been 2 years since my diagnosis. So far so good! Good luck to all.
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hello I went thru neuropathy also lots of side effects have Fibromyalgia n other side effects But gladly take them to still be here 23yrs Later Praise God to be a Survivor. msphil idc stage2 0\3nodes Lmast reconstruction didn't work body rejected it 3Mon chemo before n after surgery was planning our 2nd wedding at diagnosis got married after chemo before radiation. God Bless Us All.
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Bosom, I was supposed to take the Amitriptyline a couple times a day, but there was no way, it just wiped me out. Yes, it is an anti-depressant/pain-blocker/something else and it did block pain. I don't have that kind of pain anymore, that lasted about 8 months after chemo ended, as if every nerve ending would flare with pain with activity. Then I had a few months of less symptoms, and then a few months of hardly any symptoms and I thought I was home-free. Then one day I couldn't walk as far at the gym as I usually could (legs gave out). That night I had burning and shooting tingles running up and down my legs as I sat in my recliner, to a crazy degree. It calmed down overnight, but I learned that the more I walk and do activity, the more my feet and lower legs will tingle and burn when I rest in evening. However, I do think acupuncture is helping with this, he was confident he could help and I think it is better. The distance walking is still problematic, it's as if the strength leaves my legs and they just don't want to go any farther. I have been trying to push myself a little farther when I do walk. And then, as you said, I feel it the next day. Now my arthritic knee is acting up again, that started in February. Tried to walk yesterday but knee was too sore from day before. I had a cortisone shot, I guess it is wearing off, time for another!
Fortunately for me I do not have to work, and I am almost 65. I do not think I have the stamina to do it anymore unless it was very sedentary, and I did work as a bartender for a while, there is no way I could do that now. Oddly enough, I dreamed about that last night! I must have been on the way-back machine ha.
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Chloe'smom, I haven't heard of the neuroquell. My GP did prescribe a couple of things for me, they were just concentrated forms of B vitamins, prescription-strength. He gave me samples but I couldn't tell any noticeable difference after a couple months. I am back to my normal B-vitamins, and extra B6 and sometimes Folinic Acid, which is from pharmacy but cheap.
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Hi Everyone,
I am new to the boards, and was reading this post. I am still active with my chemo tx, and started developing neuropathy after my 3rd infusion with AC but thought it would go away, started Taxol and mentioned the loss of feelings in my hands and feet, and MO recommended acupuncture. I've had two treatments so far and have regained feeling in both my hands and feet. Thought if someone would want to try it...
Angie.
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Angelica, I do acupuncture regularly every 3 to 4 weeks, and I do believe it has helped. . Usually the neuropathy comes with the Taxol, or Taxotere. I had not heard of it as a side effect with AC, but anything's possible, that's for sure!
Good luck to you, hope your treatment goes very smoothly!
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well i am on taxol and dealing with the numb feet, it helps to sort of wiggle my toes, stretch them sort of in the morning
4 taxol down but no firm info on how many more
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ProudtoSpin, maryna8, BosumBlues - thanks so much for the kind words about my doll! I do sell them and was just getting ready to open an Etsy shop when this all happened...
dtad - Yes, the chemo is because I'm HER2 positive.
VLH - Definitely a tough spot to be in, but aren't we all? I'm hoping my MO will have some ideas because I do not want to do anything that will make the neuropathy worse.
Thank you all for responding to my post. I find myself in a state of semi-panic most days lately and so I sew and sew and sew.
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lita, as a former sewer, sounds like a great release, i made raggedy ann and andy dolls for my neice years ago but never as fancy as yours
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also, i wiggle my toes in bed a lot! I beleve it is my toe exercises
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After toughing it out for 3 days with no pain medication, I've been forced to realize that my balance problems are neuropathy rather than related to pain medication. I wish I'd followed my initial instinct to not have chemo due to concerns about the impact on my quality of life, but I'm sure there would be regrets if I hadn't done chemo and experienced further issues. I feel very fortunate that I've thus far had no evidence of recurrence or metastasis, but is that due to the nearly 80% chance of survival without chemo or the 6% impact of the chemo? Therein lies the rub. 🤔
After five surgeries, two infections, chemo, and some lymphedema therapy, I was so looking forward to being done with treatment after radiation. Now all I see is an interminable number of physical and occupational therapy sessions ahead. I'm questioning whether I'll ever be able to return to the dog sports I love or teaching obedience classes again.
Lyn
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Thank you for the encouragement, BosomBlues. 😀
My MO initially said that if I still had neuropathy at six months, it was likely permanent. When I saw her last week (5 months post-chemo), she revised that saying she's seen the neuropathy dissipate up to a year after final chemo? I'm trying to remain optimistic.
With being more active, my herniated disc / sacroiliac joint issue was re-emerging. I was doing an exercise I learned during the spine PT and was shocked to discover I can't balance on one foot for even 2 seconds. After my MO appointment, I ate out and realized that I was very nervous about going down two easy (wide / shallow) steps without a hand rail. Those incidents forced me to recognize that there was a serious problem.
I've been forcing myself to walk more and during a long jaunt to Medical Records found that I had to stop frequently to restore my posture to normal vs. a stooped Disney crone. I'm wondering if my body is trying to adapt its center of gravity?
I'll continue with the core strength / balance spinal exercises I already know until I get through radiation. (Mapping is scheduled for the end of the month.) I know I've seen good tips here so will glance back for in-home ideas. I simply can't stomach scheduling additional medical appointments right now.
Lyn
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