Vent about Permanent Neuropathy
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Yes chemo can definitely make preexisting neuropathy worse! I have an autoimmune peripheral neuropathy and that was the main reason I didn't have chemo. My oncotype was 27 but my MO was against chemo. Good luck to all...
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Thank you so much dtad!
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I would suggest a consult with a neurologist.
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I got neuropathy on Kadcyla and ended my participation in the trial for HER2+ cancer after eight infusions.
Being on AIs for BR+ cancer also exacerbated the neuropathy, which is slightly improving now that I'm off of them. I've also noticed worse symptoms when I take Crestor.
Glad to vent here because you all know how hard this is. I avoid mentioning neuropathy to those well-meaning friends who don't understand
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I'm 7 years out and I still have numbness in my toes. It comes and goes for a couple of months at a time. Also - and this is permanent - I feel like I am wearing soles filled with needles most of the time. I have to really monitor myself when I'm walking as I have the tendency to rotate my feet so it wouldn't hurt that bad when I step and it gives me a weird gait. Even if the pain is really the same. If I pay attention I can walk normally though. I also experience horribly painful calf muscle cramping from time to time. The worse is if I get that on my right leg when I'm driving. I don't have foot drop issues though.
The AIs have caused rapidly advancing osteoarthritis for me, especially in the neck area so I am not really sure where every little pain and numbness comes from. The toe numbness though is not from the spine as that area is not affected by osteoarthritis.
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seachain - my PCP put me on Magnesium the first of the year for leg cramps. June will be the first blood tests since I started taking, so I'm interested tp see if the level is relevant. Since I started the mag, I've only had one bad leg cramp.
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Hello,
My name is Liz and I am newly dx as stage 4 with a loco regional recurrence of Her 2 estrogen positive BC, a 3 cm mass in my chest ( internal mammary node)
I had my first THP 17 days ago. As soon as infusion started I had some slight burning in hands and feet and ridges appeared on hands. This remained for day 1 but disappeared. Now I have mild pain, tingling and my hands and feet just feel weird. I know it's neuropathy and am now scared to death that I still have 5 treatments to go.
How crap is all this that my only option appears to live with not being able to walk, dress, etc ...
Angry and scared and would appreciate any advice. It's mild at the moment but it will surely get worse and it's happened on treatment one for me.
Wishing everyone the best on the forum. 😟
Liz
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Liz,
I am sorry to hear about your diagnosis.
Yes, you have a long haul ahead of you. The chemo is there to save your life. Most of us do ok even though we have the SEs. For many people, they go away. For others, we learn to cope with them. The SEs have really impacted me.
Take good care.
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Thanks garden gypsy. I am sitting here thinking that there is nothing I can do as Taxotere is part of the Cleopatra trial I am on and as my tumour is in a tricky place, this tx is my lifeline.
Is it worth icing? Not routinely recommended inUK I presume because of a lack of clinical evidence?
Liz x
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Hi Liz,
I have had pins and needles in my feet (sciatica) and my right hand (nerve entrapment, shoulder and elbow), also phantom sensations in the right hand (as if it was plunged in hot water, very unpleasant). For the sciatica, I did physio and exercises, used a lot of Arnica, and took Magnesium supplements. It took a whole year to heal, and I have to do 'maintenance' for the rest of my life. For the hand, I wore a wrist and hand splint for over 6 months (it was after a macrobiopsy, I am doing data entry at work, mostly figures, i.e. using the right hand, nearly all day long, which aggravated the symptoms), used Arnica, and my physio did a lot of nerve flossing which really really helped. Another trick I used was to superimpose new sensations, to try and override the phantom pains: I would take my shoe off and roll a tennis ball under the sole of my foot, or I would wrap a cold pack (like those you use for sprains) around my hand for a couple of minutes. Although the sensations were never very painful (except for the sciatica), they would sometimes prevent me from sleeping, or wake me up at night. I have read elsewhere that St John's Wort tincture (rubbed in) might help, as might acetyl l carnitine supplements. I'll have a look on the German forums when I have a bit of spare time. I am glad it went away in my case: dropping things got me in trouble at work (especially a ready made dish of curry - but why do we have carpet in the staff kitchen area too?) and dressing, cooking etc. wre really tricky: for a time, I was buying precut vegs! Best wishes.
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jackboo - Sorry to hear about your Stage IV diagnosis. Definitely tell your docs about the SEs. Maybe they can add something like Benedryl for the burning? Usually they can reduce the dose of the taxotere, but I'm not sure since you're in a trial.
I'd go ahead w/the icing. Nothing to loose - right? I used frozen peas in zip lock bags because they shift around better than ice cubes. Start 15 minutes before the Taxotere and continue for 15 minutes after - 90 minutes. I was lucky my infusion center had a freezer because I needed two sets of peas to make it through the time. Also that might help stop nail loss. I did my hands all 6 times, never lost a nail and had only mild neuropathy in my fingers. I didn't ice my feet the first treatment and my big toe nails did start to pull loose. Who knows how much worst the neuropathy would have been w/o icing. Take a warm coat if you tend to get cold anyway. And ask about adding B-6 and B-12 if you're not already taking those.
Do let us know.
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Hi Penzance and Minustwo
Great tips and thank you for sharing your experiences. I want to ice next Thur. No idea how I will manage this as there are no facilities, that I am aware of.
I have walked and cycles today and I have mild burning. However, this is likely to get worse and I think I should do whatever I can. Strange how cold cap is wildly available here but not icing.
Will keep you posted.
Liz x
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Even tho' we might be in the minority, having the long lasting CIPN, I still think it is under-reported and downplayed within the medical community. For every one of us, there is probably another one (or two or three) out there suffering in silence.
My MO never opens the subject when I go in for visits, but I always to manage to tell him "still got some neuropathy going on." It does show up in the report of my office visits. I think he doesn't bring it up because there is nothing HE can do, since I'm not after drugs or any PT at this time.
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Right on Eilmar! I speak firmly & insist that lasting neuropathy gets in my record EVERY time even though, as you say, there is nothing he can do. I do the same for lymphadema, which is another SE that most docs tell you will never happen. Some day maybe these docs will remember & speak up about what their patients are telling them.
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Minus and Elimar~ I have been keeping a list of all my symptoms and being very specific about what I can and cannot do.
For my disability insurance, I may need to have the neuropathy documented. Do you know what kind of tests are involved?
Penzance: I need to try Arnica and flossing (gliding).
The "maintenance" (self care) takes a lot of time and focus! BC has taught me this.
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GardenGypsy - I did go to a neurologist when I was still in active treatment. She did some poking & prodding & electrical impulse stuff w/specific instruments, but we didn't go any further because the "hope" was that I would get all my feeling back w/in to years. Sorry I can't be more helpful.
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I got neuropathy. I'm taking gabapentin , it helps a little, couldn't get lyrics, Medicaid wouldn't cover it.
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Franny - sorry you have to join us. When you get a moment, please go to My Profile and add your diagnosis & treatment specs. It does help us to understand each other better.
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Bosum - got it!!
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I am taking 900 Gabapentin daily. Helping take the edge off, but I could probably take more.
I think it makes me loopy.
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Bosom,
According to my onc at DFCI, it is not hard on the liver!
I think I have been on it for a year now. Others have told me that they feel mentally challenged on the stuff. I think the chemicals and treatments affect us all very differently.
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Bosum,
My STM is so bad that I can barely function some days
. I have never heard of a neuropath!Have you been to this particular neurologist before? What do you hope they can do for you? Perhaps it won't hurt just to check in?
My neuropathy has been particularly bad this week. My PT says they they often see symptoms worsen when the seasons change because people are wearing different shoes. I have worn two new pair this week. They are sturdy, but new.
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Thanks, Minus. I think I have to do the official diagnosis and tests.. However, there is such a shortage of neurologists in our area that it will take months and months to get in..
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Gardengypsy - I applied and received SSD within 5 months. I saw a neurologist for CIPN and after poking, around, thumping, sticking with sharp objects and vibration testing, I was given the diagnosis without further testing which can be expensive. I just told the onco that if SSD required further testing they will pay for it rather than it coming out of my pocket.
Jackboo09 - I hope you have applied for SSD. People diagnosed with stage 4 are approved within 1 month.
There is a forum on the subject of SSD on BC.org that helped me through the process.
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Thanks, Blownaway.
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Hello all,
I have been away, had a nice trip, and am happy to report that I did a lot of walking. Not fast walking, but more like meandering. I had a shot in my knee before I left, and it did seem to help. I have noticed since I am back that the pain is worse, I had a lot of wind damage here and helping to clean that up really makes it worse. This is all making me wonder, is doing something pleasant better for pain than doing something unpleasant? Apparently so in my case. The neuropathy weakness was noticeable on my trip, I could not have walked as I did if I had had to walk fast all the time. But overall I was pleased that I could keep up for the most part.
I hope all are doing okay. Gypsy, my garden kneeler came in and I haven't used it outside yet, but have tried it here in the house, it feels great on the knees.
Mary
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Welcome back, Mary! Yes, the neuropathy lessened during my vacation in the Caribbean
Happy gardening!
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Oh goody - a vacation as curative. Do you think we can get our insurance to pay for vacations? (LOL)
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MinusTwo and Gypsy,
Wouldn't that be something, a nice vacay every year as therapy? I have talked to a couple of physical therapists about this mental/pain connection, they said it is a real thing, dwelling on pain and especially neuropathic pain makes it more intense, according to them. I know I told myself while gone I was going to walk as much as I could and take care of the pain later; what I would do at night is fill a freezer bag with crushed ice, wrap it in a towel, and take it to bed with me for my knee. It wouldn't get overly cold because it would thaw before that. By morning I would be ready for the next day. I would usually take an Aleve before bed too.
The leg exhaustion would hit sometimes, I would try to sit down; if that wasn't possible I would try to keep moving in some way. Standing is bad for me, worse than walking.
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Ladies...can you look at these photos and tell me if you have experienced anything like this from PN?
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