Vent about Permanent Neuropathy

gardengypsy

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..

Blownaway

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.

gardengypsy

Thanks, Blownaway.

maryna8

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

gardengypsy

Welcome back, Mary! Yes, the neuropathy lessened during my vacation in the Caribbean

Happy gardening!

MinusTwo

Oh goody - a vacation as curative. Do you think we can get our insurance to pay for vacations? (LOL)

maryna8

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.

tangandchris

Ladies...can you look at these photos and tell me if you have experienced anything like this from PN?

MinusTwo

Tang&Chris - the swelling looks more like lymphadema. Do you have a certified LE therapist? It might be worth checking.

tangandchris

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.

gardengypsy

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.

Ozoner

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.

tangandchris

I think you are onto something Ozoner....thx for the info!

wrenn

I had stasis dermatitis that looked like that.

jackboo09

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

MinusTwo

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.

jackboo09

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

maryna8

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!

jackboo09

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

septembersong

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.

elimar86861

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?

Libber

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

gardengypsy

Libber

I can't wait to try the acupuncture!

MinusTwo

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.

VLH

How many acupuncture treatments did you have, Libber?

Lyn

Libber

hope it works for you.

Libber

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.

Libber

Pins and needles. Numbness. Dropping things. It was in my hands and my feet. Also shooting up the front of my calves.

Libber

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.

MinusTwo

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.