Vent about Permanent Neuropathy
Comments
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Really frustrating that we have to take these pills for such a long time before we can even see if they will give relief. Arghhhhhh!
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Chickadee - I guess I assumed that maybe some Stage IV chemos don't have the neuropathy SE. e.g. Adriamycin/Cytoxan did not. Did you ever have Taxol or Carboplatin? Just wondering if you had, did they also cause CIPN for you?
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Not those. Ive been on Ixempra also known as Ixabepilone. Neuropathy is an SE.
We reduced dose, no improvement. I think I'm doing Halaven next. Of course nerve damage is possible.0 -
Ladies - boy I was not aware until reading this thread that I am one of so many. I am 7 years out from my Taxol chemo but have been disabled by it now for 5 of them .At first I took the Neurontin then it was the Lyrica. Took them like candies w/ no effect what so ever. I was hospitalized Feb 2008 with ankle drop and foot paralysis. Maybe MS they said but likely caused by Taxol. I have worn leg assist devices since then. The only thing that helped was taking Vit B and Alpha Lipoiec Acid capsules 600mg two per day. After more than 2 years on it I felt some relief but way from total. I went to a neuroligist 3 months ago d/t right hand weakness and new very bad neuropthy pain. I am an avid sewer and cannot do pit now. Well after an MRI and CTs I was sent for a biopsy under my collar bone. Sure enough it is return of my ER post BC. So now I am 2 weeks into 5 of radiation (this I am told will help the pain) Well not much so far. My shoulder and arm may be a little less but my fingers and hand have worse than ever neuropathy. You would think after all this time some new drug would have been discovered. So I will carry on w/the T3 and Ibuprofen. I am waiting for the finish of Rads before restarting the Alpha Lipoeic Acid. (buy online from I- Herb. Has anyone tried anything else that helps. I had a pepper cream (nothing) and Lidocaine patch (too messy and to hard to put on hand. Frustration level is was overboard at this point.
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The best shoes that I have found for neuropathy are easy spirit travel lites with added gel insoles. They have enabled me to walk all day without pain, a significant improvement.
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Grammy, Im so sorry for your reccurrence. I'm taking a B complex and have been thinking of adding alpha lipoeic acid. Worth a try. Surely hope the damage isn't permanent.
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Hi Chickadee, I found Cymbalta an excellent medication for me but I used it for anxiety the 2 years prior to my BC diagnosis. I had to stop Cymbalta when I started tamoxifen. BS says Cymbalta interferes with tamoxifen's effect.
I'm trying to reduce my use of gabapentin from 900 to 600mg. The reason is because it makes me too loopy. I have more pain and more hot flashes but I'm trying to stick it out.
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Onc is considering increasing the Lyrica dosage. I'm not so sure. Right now I'm on 50mg three times a day.
I want to know if something is going to help me at all. S far the only real relief I can sense is when I take Oxycodone.0 -
Chikadee- I forgot to metion that I started on Amitriptyline 25 mg at bedtime shortly after I started getting the neuropathy ( after 1st dose of Taxol) several years ago. It does help me sleep but does nothing much for the pain. It has also worked as an effective antidepressant for the most part ( and cheap). I may ask to try the Neurontin again but more likely a TENS implantable nerve stimulator unit ( it is placed in your back I think and needs a surgical procedure to implant)
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Ladies, I just discovered this thread yesterday and it is one that hit close to home. I have permanent PN. It is unrelated to BC tx though Chemo (FEC) has undoubtedly made it worse. Ive had it well over 10years. As I read through some [posts here the same typical symptoms came up again and again. When I initially tried to research PN, there was very little known about it, even in the US and most certainly in my country. It was only by great timing my GP was given a book about it from an overseas colleague which he lent me.
Fast forward to now. I am indeed dismayed that there is still NO CURE for this most debilitating of conditions. It is the most insidious and horrible thing I've ever had the misfortune to encounter. It has almost totally dictated to how my life is run. It is worse than LE, and it is worse than BC. Ive found it to be a total deal breaker in many situations. You can't stand on your feet for more than a couple of hours. It's worse in the summer. Much worse. Youre allergic to huge supermarkets with endless walking. Forget mountain climbing or long hikes. Forget doing good workouts that buff your feet up. Expect agony for the inopportune times where you have to go out because it's out of your control and youre forced to stand on your feet in the heat.
When you tell people about burning aching feet, they go Oh yes mine get hot too... and I go NO this is not hot this is BURNING! I said BURNING AS IN ON FIRE! Burning as in you get ice on them to stop the burning. People will never get it about this condition unless theyve been there.
I went off Amitriptyline because of side FX and held my own until CHemo. I was told there was nothing in FEC that gave you neuropathy but mine was worse none the less. Im on lowest dose Gabapentin which slightly helps take the edge off.
Im so sorry for those of you who are dealing with this monstrous thing.
Rant over.0 -
Musical, cytoxan can indeed cause peripheral neuropathy, although it is usually considered less common than with the taxanes. The thing is, MANY MANY drugs cause this, and once you have it, it can be exacerbated if you get another drug that has the same potential. People with diabetic neuropathy or other pre-existing neuropathy are probably at higher risk for this. The antibiotic class of fluoroquinolones has recently had stronger warnings put on the label for physicians (not that they pay all that much attention). So go ahead and rant, join the rest of us spewing forth unhappiness at this turn of events.
I had CIPN since first dose of taxotere/cytoxan, but MO ignored it and went ahead with full dose. Still bothersome, much worse over last few months, I have been wondering if any of my new meds could cause it to flare up. I plan to ask my medical toxicologist about it - she has been better than any neurologist in navigating this issue.
As to CIPN or LE - well, the LE came 3 years after CIPN, and it is the straw that has nearly broken this camel's back. I am so ready to just discontinue all meds - they all seem to make me sicker and they sure as hell didn't cure the cancer.0 -
I got some help on shoes from my Stage IV friends. I was headed for a store that specializes in foot problems and a recommended Dansko shoe. However the Dansko shoes didn't give me the improvement that a shoe called Alegria did. The style is Paloma and it looks like a Mary Jane if you are old enough to remember those. The pressure comes down on the heel area and you foot doesn't push forward on those painful balls and toes. They are wide as well and I felt stable without fear of rolling my ankle.
So some relief. Certainly still no fun to walk but this does improve on regular shoes. To me very expensive at $109. I've never spent more than $60 bucks on any footwear but hard times call for hard measures so it was worth hitting the credit card. There are some sales online for $69 so once I see how these break in I will probably get another pair.
Another post on the stage IV thread mentioned a Medicare approved pain relief approach called P Stim. You can google it. It's some sort of electrical stimulation device attached behind your ear. It has to be replaced every 4 days and that's likely a deal breaker annoyance unless someone right in my neighborhood offered it. The post said she felt she got about 50% relief from her pain and neuropathy.0 -
Linda, Gentle hugs. YEP LE sure is a deal breaker too. If PN is worse than LE then not by much. UGH. Pick your poison, if you had a choice that is ... and so yeah I hear u on the final straw. Really this all just goes to show how much ignorance there is in general about BC and all its hanger ons. Worse, it often comes from people who should know better, the MEd team. People in general think "so, youve done your treatment had your boobs cut off, now lets see you get on with your life just like normal". Well it aint normal as we knew it before.
Remember talking to my GP about the PN some time back and why it is worse since chemo. GP said the type of Chemo I had was not known to cause neuropathy. Thanks for the heads up on this. Have you got some links to info on this as Id be appreciative so I could show my GP, who is always willing to learn and discuss things unlike some arrogant so and so's you come across.
Ah yes shoes! Just posted somewhere yesterday about Tiva's...I have to scratch my head and think where.
Chickadee Tivas (from US) in NZ are $200! but I consider them worth it and Im like you ... I dont like to pay exorbitant costs for any shoe but since PN I just DONT ARGUE these days. When it comes to our feet if anything helps then it's worth knowing about. Im going to look up those brands youve mentioned and see if they are here in NZ.
My PN is not just on the ball or toes but heels and arches as well. I have to have something light, plenty of cushioning, and NOT enclosed. The more air around my feet the better.0 -
Since I had to find a shoe that my legs splints would fit in I have only worn "Teva" sandals for 5 years ( yep , even in Fl winter w/socks) Now I am in the Northwest so I bought a couple pairs of Easy Spirit slip on sneaker type lightweight shoes ( a size larger than I wore usually). I cannot walk in anything heavier. It makes my foot drag. I use a cane too. What burns me up is that diabetics get free shoes for their neuropathy from Medicare but the rest of us get nothing covered. Neuropathy is neuropathy. We should start a write in campaign. Anyway that's my rant of the day. I figured out more than 4 years ago that my CIPD is permanent since the neuro's had nothing to offer except a wheelchair.
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For sure Grammy it just doesnt seem fair at all. For example, we have the same if not worse here in general, where diabetics have to pay for their needles but drug addicts get 5star hotel treatment with free needles. Seems to be those who have no choice end up paying and those that do have a choice get funded financed and mollycoddled.
Tevas are just about all I wear and have done for years. Pretty much all year around except for the dead of winter when theres a good frost. Then like you I wear socks with the Tevas. That way if my feet crap out on me I just get the socks off and it's instant relief. If I go to town and its VERY cold occasionally I'll wear sandshoes but I still take my Tevas in case my feet start burning. Ive found Tevas last and last and are really good quality.0 -
Has anyone tried water aerobics with your burning feet? There's a class starting next week at my rec Ctr and I wondered if my feet would tolerate it.
They have several classes that seem to be for different levels.0 -
I am not a swimmer but I can tell you that being in the pool is the only relief I ever get for my legs and feet. It totally takes the pressure off. My balance is not great so I never go in alone. Heated pool is best.
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I'm not sure it's heated. Wonder if cool water would add to the pain.
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Hi. My question to this thread is: Do any of you REGRET taking chemo? And WHY?
Do you think you shouldn't have been prescribed it in the 1st place (especially for Stage 1 group)...OR do you think they should've given you a different kind, or for a shorter length of time? Etc...
Thanks...
Violet0 -
I think regrets aren't very productive. We do the best we can, make the best decisions we can with the information we have and the trust we have with our medical advisors.
Cancer kills. We do what we can to endure or survive it.0 -
Chick:
I guess regret was a stupid
(idiotic/insensitive) way to put it...I'm sorry...so not what I meant.
I'm just trying to glean what to look for/be aware of if I get a recurrence (dx: Bilateral BC) and am told I NEED chemo. I'm
REALLY EXTRA CONCERNED because I ALREADY HAVE neuropathy from my BMX...on the left side.
THAT is why I'm asking...I'm afraid that ANY extra treatments &/or surgeries I may need or that are recommended will exacerbate my situation.
I'm pu0 -
Putting nipple recon. ON hold for now because of this and feel IF I was to take the Tamoxifen (which the Guidelines only ask me to consider at my stage)...it may also worsen my neuropathy
. ..:(
Many of you have talked about these things on here (things that worsen your neuropathy)...
***I guess I'd just like to know if/which things you'd do differently now knowing what you know NOW. Sounds like some patients aren't fully informed of all of the effects of chemo, doses, etc.
Thanks for listening.
P.S. - TODAY is Day 1 of me trying Gabapentin...am nervous...
Vi0 -
Tamoxifen isn't chemo. While it didnt do much for me I didn't experience any nerve damage from it.
In one respect it is really our responsibility to inform ourselves about the treatments we are about to embark on. That doesn't mean we can understand everything we read. That said there isn't a medication out there that doesn't list a string of side effects most of which we will never experience.
This one, neuropathy, is a particularly evil one and robs us of our mobility, our dignity. It sucks big time. I confess to not realizing what was happening to me. I thought it was Hand Foot Syndrome from the Xeloda and would resolve itself in time. Stupid me.
Stupid cancer.0 -
Chick:
Yes I know Tamoxifen is a hormone treatment/therapy...have just heard it can worsen neuropathy because of joint pain issues it can cause...
NOT stupid you! I hear what you are saying--we can't know ALL of the possible SE's that might harm us ...and perhaps we will be UNAWARE when they ARE happening to us...I hear tons of BC patients say their docs said their SE's weren't from a treatment, then later discovering the doc. was wrong...
So surely don't beat yourself up for your situation...but this is exactly WHY I thought some of you ladies might be able to help others with what to be wary of...etc. Especially those of us who ALREADY have neuropathy. ..
Violet
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Violet - I was stage 1, but high oncotype score. The MO's on my case wanted to throw the kitchen sink at my BC, given it's pathology. My only regret is not having a neurologist on board to actually classify my PN symptoms as they developed, which started after the 2nd dose dense taxol. I might have skipped the 4th taxol? I might have asked to go on weekly taxol, versus dose dense bi-weekly - or I should be saying "I might have been offered that option." I had no way to judge my PN symptoms on the continuum of mild discomfort to total disability as a patient. I had no information, or idea, what taking the next chemo infusion of taxol would do - i.e. how much worse would/could it get? In retrospect, I was winging it, and really, my MO was too. I think a neurologist might have been "on my team" if I had been able to do my chemo where I had my surgeries - at an NCI center, but I lived 370 miles from that institution. If I had to do it over, I would have consulted a neurologist who had experience with CIPN. As it was, I moved from 4 doses of taxol to another chemo, carboplatin, that has neuropathy as a SE. I skipped the last treatment as my symptoms progressed beyond what I would have considered QOL. Luckily, I have recovered 75% (my scale) from the worst day, after 1 year.
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Kam,
I'm sorry for what you had to go through. ..
But thank you for sharing that info...I think it is REALLY helpful for others to know these sorts of things...
Blessings,
Violet
P.S. -I'm soooo confused as to WHAT criteria determines one would ever need chemo IF one is Stage 1a, grade 1, node neg, Her2 neg...sigh. A high onco score maybe?
Violet0 -
Uh oh
I have had neuropathy for 18 years....degeneration in spine pinching off nerves and causing them to fray and burn....have fibromyalgia...and a non cancerous tumor in my tailbone that is also causing neuropathy because it is eroding my tailbone as it grows.
Hearing that meds also cause neuropathy does not make me happy...deal with enough pain already
I currently take cymbalta, hydomorph contin, hydromorphone and elavil...the elavil helps knock down the restless leg syndrome and pain so I can sleep at night.
Two of these meds...cymbalta and elavil... are antidepressants which when taken at a higher dosage will help block the neve pain.
Just a note of caution...once you start these meds they are very difficult to stop.0 -
Yes, oncotype score, for node negative (stage 1) er+ dx, is used to determine chemo or not. Stage 1 TN or Her2+, always get chemo, is my understanding.
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Kam: Thanks.
Last Night:
I took my 1st Gabapentin at 8:45...by about 10-10:30 I was feeling really funny...woozy, blurred vision, felt like I was going to tip over...AND had the Screaming Munchies!
These are normal in the beginning right?
Violet0 -
violet - I am just back on Tamoxifen ( 1 month) d/t my return ER+ BC. So not sure if it is making things worse. Taxol( Pacitaxeto) l was the major cause. I had no neuropathy what so ever before that. 4 doses 3 weeks apart. It started after the 1st dose so yes , now I think I would maybe have chosen another way had I had all the facts. I was told it was temporary if at all. I did not have any RADs back then so wonder if that should have choes that route. Water under the bridge now as they say. I could not tolerate the other 3 hormone blocker pills ( severe joint pains) so Tamoxifen is what I have been put on- time remains to be seen if this works at all. I took Cabopentin like candy w/no effect at all. My neuro says it OK to go back on the Alpha-Lipoeic-Acid 1200 mg a day which I will start today. Wish it was cheaper.
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