Vent about Permanent Neuropathy
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Tang&Chris - the swelling looks more like lymphadema. Do you have a certified LE therapist? It might be worth checking.
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I dont....but it is so strange. Wondering if this is a circulation problem. The photo doesn't show just how different the coloring is. Thx for the feedback.
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Agree with Minus. Swelling is not included in CIPN symptoms.
My neuropathy has been worse since I have started gardening. Ouch. Ouch. Ouch. Upping my Gabapentin dose.
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Hey Tang&Chris,
Check out golfer's vasculitis. I would get this when on vacation, walking on city streets. The bright rash would appear above my socks, wasn't painful, but was red for weeks and maybe as long as a month. Scared the heck out of me. Don't know if it is any connection to yours, but it looks extremely similar. Definitely show it to your doc next time you go in.
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I think you are onto something Ozoner....thx for the info!
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Hi
I'm looking for some advice about whether Ishould proceed with my third dose of Taxotere. I was dx with mets, single chest mass in March. The plan is x6 Taxotere/Herceptin/Perjeta, however I have developed some mild symptoms of tingling, numbness and intermittent stabbing pains in my finger tips and toes.
My onco will discuss options tomorrow.
Any advice would be most grateful and I have only hours to go before I decide.
Liz
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l had to make the decision about rounds 5 & 6 due to tingling. He offered to reduce the dose but what do we really know about that difference. I opted to continue. Since I'm hormone negative & HER2 posltive there weren't too many other options. Even at that, I didn't have complete pCR and had to do 4 rounds of AC after surgery
2-1/2 years later - my fingers have mostly come back except occasional tingling. My feet however are mostly numb. Luckily I don't have any pain, so I guess I'm OK trading the numbness for NED. However I think you said you have mets? So this would be the first line treatment of many to follow? If you're looking for quality of life, that's a hard choice. Do let us know what you decide with your MO.
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Thank you MinusTwo
I have a single met to an internal mammary lymph node in my chest. It is classed as Stage 4 by some and yet loco regional ) recurrent) however you are right that this is the first line of treatment and gives me the best chance. It's all a crap shoot.
I am sorry you have issues still.
Will keep you posted x
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Hi all,
BosomBlues, Gypsy. sorry for long delay in responding, have been busy. Summer stuff, I have found when I have a long day outside working and stooping and crouching my legs are so tired, and aching. The muscles never seem to get used to the work, I would think they would be by now if not for the neuropathy. I do seem able to walk farther, which makes me happy. We are just getting started with our hot, hot weather; I can't do much exertion outside once that gets going.
Tangandchris, I can't say I know the answer to your question, vascular sounds right. In the winter when I wear socks everyday, my skin in the sock area is dry and flaking and looks different than the rest of the leg. I have vein reflux because of varicose veins in my left calf, by the end of the day my ankle is a little swollen. I should wear support hose but how can I in the heat of summer? That doesn't answer your question, but I'll vote on the side of vascular. (Or are you sure you weren't out in the sun wearing capris? haha!)
Jackboo, I finished my doses of Taxotere according to my MO's protocol, but he did shrink my last 2 doses because of neuropathic symptoms and some other side effects. Right or wrong, who knows? I noticed my tingling extremities with my very first dose. It's hard to advise you, because everyone's neuropathy seems to present a little differently. Good luck, hope it goes away!
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Hi all
Thanks for your responses. My Dr says he will monitor me this cycle very closely as I will need long term treatment and doesn't want me to seriously affected on first line. It is still a little intermittent.
He did say that the first few treatments had the greatest effect if I do drop T but I would rather do all 6.
Liz
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Hello, jackboo09,
I have no advice or recommendations to give you--I had a different diagnosis and treatment protocol, and still deal with CIPN years later. Just want to wish you the best and remind you that you always have a caring and concerned group of fellow travelers on this site.
Please be well, stay well, and I hope your treatment goes smoothly.
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Hard to say if my feet are actually better than last summer, or if I am just getting used the numbness and my brain is compensating for it.
On my good days, only my toes and balls of feet have the partially numb feeling. On my bad days, I might even get nerve involvement going up my shins. My shins never really go numb, but let's just call the feeling a reminder of how far up I felt the tingling when I was actually on the chemo, a reminder of the full extent of it. I hope it never comes to a further degeneration of those nerves in my legs. Most times I don't notice those at all.
Kind of feel like I have gotten as better as I can get. Just hope it does not start to worsen as I age. Have some of you long-timers noticed your CIPN spread even further after 3-4 years or more? Don't mean got a new nerve condition, or spine making the CIPN flare up, but the original CIPN spreading out along the nerve pathways?
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I am sorry that many of you have ongoing neuropathy after finishing chemo. I experienced neuropathy in my feet and hands as well. I tried accupuncture and the neuropathy completely disappeared quickly. I will also add that I have Type 1 diabetes 34 years so predisposed to neuropathy. I am convinced that a few accupuncture treatments resolved it
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Libber
I can't wait to try the acupuncture!
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Eli - I think we are about the same. I am afraid to try things that might bring any more feeling back because - right not I really don't have any pain. I don't want more feeling at the cost of pain. However I do plan to go back to the neurologist in the next 3 months.
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How many acupuncture treatments did you have, Libber?
Lyn
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hope it works for you.
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3 treatments. I am over a year out from dose dense chemo. Finished xeloda Feb2017. The neuropathy was resolved fairly soon after dose dense chemo approx 6 months after I completed that treatment. I was very concerned about Neuropathy being a permanent problem but it completely resolved and no issues now.
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Pins and needles. Numbness. Dropping things. It was in my hands and my feet. Also shooting up the front of my calves.
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I don't think it was a particular specialty for the acupuncturist I used. I told her about all of my symptoms and history and she inserted needles literally everywhere hah. It was not painful.
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Libber - thanks. Sounds like you did this fairly soon after the neuropathy started. I patiently waited the 2+ years that docs advised that it will gradually get "some" better. Feet still numb. Now it's been 3-1/2 years and I wonder if it's too late for me or the pattern is set or whatever. I do plan to see a neurologist later this summer, but I'm not willing to increase feeling just to trade numbness for pain.
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acupuncture didn't help mine
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Bosom,
I wonder what the doc does for neuropathy at this clinic you mentioned. I do go to acupuncture every 3 weeks or so, I believe it has helped a lot. I still tire more easily than before, and my legs get very tired but overall, I believe I am better. My acupuncture doc only charges $45 a visit, so it's not bad, and I consider it well worth it. I think you are right too, some days are just better than others. It always seems to help to be well rested, which I am not right now thanks to the long holiday. It also seems that if I injure any part of my legs, the neuropathy will flare in that area for a while as well. Over the last year and a half or so, my knee has developed arthritic pain, I injured my foot with a dropping incident, and my ankle was injured. All of these seem to cause more nerve pain when they are aggravated.
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Still dealing with ongoing pain in my feet. I can no longer wear sandals or anything that leaves my feet uncovered because of how cold and aching they are. Its summer time in Texas and my feet are always cold. Zinging pains too...
I have recently started a temp to perm job and am hoping it goes perm soon for insurance. I am in great need of seeing a doctor for all if this.
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tangandchris - I too am in the Texas heat. And my feet are always cold. At home I wear fuzzy slippers. When I go out, I wear socks & Traveltime slip ons. I wear socks to bed. Hope you can find relief down the road.
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thx MT....some days are harder than others. I just can't believe how much worse my issues have gotten in the last year.
Anyway everyone out there...be brave! ((Hugs))
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Back to acupuncture. I had 12 sessions at Dana-Farber within a year of treatment (I experienced numbness in my feet starting with the second treatment of taxol/herceptin). The practitioners there are highly experienced in dealing with this treatment for CIPN. I saw no improvement.
Of course, everyone's experience and body chemistry is different. It's worth trying if you're struggling and nothing else is giving you relief.
I'm nine years out and the only thing that's helped me is gabapentin (1800 mg., slow-release--three pills taken at bedtime).
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Septembersong how does the gabapentin help you? I went to the doctors today and he suggested gabapentin for my neuropathy. Does it help with numbness and muscle weakness, do you have to take it every day to be effective. I should of asked these questions. I usually say no to meds, but after reading some of the posts I think I need to be more proactive . Being able to fall asleep at night would be great
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As I understand it, gabapentin only helps with pain. It doesn't do anything for numbness or muscle weakness.
How far are you into treatment LookForward? What was your diagnosis?
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Minus Two I finished treatment for Her2+ a couple of years ago . My Pc said that the neuropathy is probably permanent now, I didn't realize the gabapentin was for pain.
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