Peripheral Neuropathy - 18 months post treatment?

moonchild64

I am continuing to experience 'after' effects of chemo/tx (last TCH 10/08/Radiation 12/08/Herceptin 6/09) and am seeking guidance from others who may have experienced this as well.

I have debilitating foot pain, especially in the morning.  I also find that I am dropping things more, feel off balance at times and even more of a clutz than I was pre- treatment   Has anyone experienced delayed neuropathy after treatment?

I was recently laid off from my job and really started noticing more pain after that - wondering if stress is a contributing factor and caused the flare up?

Any guidance would be welcomed and appreciated!

Michelle

mnmom

 I do not know about this but will bump this up so maybe someone else can help out.

crazy4carrots

Moonchild -- I'm 22 months out from my last tx and I still have some tingling in my fingertips and my feet -- not all the time, but usually in the evening.  I've been taking 500mg of L-glutamine for almost as long, and at one time, when I ran out, I noticed the neuropathy was worse.  So, I don't think what's happening to you is unusual.  Did you have one of the taxanes?  I had taxotere -- UGH!

Wishing you well,    Linda

moonchild64

Hi Linda - thank you for your response to my post.  I also had Taxotere and UGH is right....  I never thought I'd be this far out of treatment and still have SEs....  I see my onc this week for my 3 month follow-up so hopefully she can provide suggestions for relief.  I have read about the L-glutamine ... it's a worth a shot.. 

Thanks again, Linda... also wishing you well and well-ness 

Michelle

ktym

Count me as one still having neuropathy with taxotere.  Things I can't do with my hands, very clumsy. Takes me twice as long to type as it used to and I need to do a lot of that at work.   Feet hurt, I alternate heeting pad or cooling blanket depending on how they feel at night.  Limits how long I can be up an on them during the day.  Balance sucks, and they think its contributing to the residual muscle weakness.  Trying to get around on snow and ice this past winter was a nghtmare. I'm close to the 18 months out they said we'd have to see how much came back by to know how much of this I may be stuck with permanently. 

And the thing that just fries me was when I started complaining about these symptoms early on in treatment my Onc's NP looked at me and said "that's impossible, no one gets neuropathy from taxotere and certainly not at your very low dose."  I'd love to give her these feet and hands for just one day.  

hrf

I also still have neuropathy in my feet from the taxotere. It's not terrible but it's there. My hands are better. But my hair has not grown back well. It's very very thin, my scalp shows through and it's not like real hair but more like thin wiry things that can't be styled.

jenbal

Count me in on this--I sailed through 6 cycles of TCH without any neuropathy, only to have it kick in about 4-5 months post-treatment. Foot pain in the morning is very bad, tingling in hands and foot cramps at night, sharp pains in finger joints during the day, the works. Definitely L-Glutamine helps, as does B6 and B12, NOT drinking ANY alchohol, and exercise help too. I'm doing Jazzercise (lo-impact), but I've heard Tai Chi and Yoga can be very helpful too. Anyone have any experience with acupuncture for neuropathy?

Anonymous

I had dose dense AC/T.  My neuropathy started when I was on Taxol.  After I had mastectomy and rads I took Xeloda for six months.  So, I don't know if Xeloda contributed to it's "ongoingness."  I don't think so, though.  Oh, and I finished Taxol in '05 and Xeloda '06.  Mine isn't bad..no pain...just weird feeling in toes and finger tips....annoying.  I have no hope that it will go away.

ktym

jenbal, I think acupuncture helps a little with the pain from neuropathy, neurontin didn't really help at all. 

scoutmm56

Unfortunately I still have the neuropathy  and it has worsened and it has been four years.  It flares up and worsens at times.  It has moved to both feet and hands and sometimes keeps me awake at night.  I mentioned it to the oncologist's nurse and I commented that nobody told me the side effects of ACT  could last this long and be permanent and actually worsen and she said "if we did then nobody would do it".  My thought is-well if you had fully informed me that this was a permanent side effect-then I wouldn't have done it--it was my choice--that they never gave me a chance to make. 

gale1525

Amazing what they choose not to tell you, like you won't be able to lift your arms or your may get lymphedema or a big % of rad breast with implants might get capsular contracture. I could go on but my daughter need the computer.

moonchild64

Ladies - thank you so much for your replies to my post.  I always know I can come back here and share what's going on.. not feel alone...  we are here for one another and that is reassuring and comforting.

((( Hugs ))) to all...

Frankie_

Hi

It hasn't been past 18 months for me, so I probably shouldn't chime in as it has only been 2.5 months out since my last Taxol. Just last night I had a crying melt down on my husband because my neuropahy is getting WORSE (noticed this past 2 weeks-since stating my radation. Infact one foot has a "buzzing" sensation that goes "off and on". IT is such a constant annoyance and sometimes I feel like it's affecting my QOL.I know it's to early and maybe it may dissipate over time. As my mother always reminds me...I am ALIVE.

Frankie

travelersquest

Mine lasted about two years, I took ac then taxol.  I hope it improves for you soon!

darlao

i just started taxotere, carbo, perjeta and herceptin yesterday. I'm reading horrible stories about the taxotere. I was thinking about asking to switch to taxol due to the hair issues. Last night after first does, my forearms went intermittently numb..I called the doc and he was unconcerned. Ugh! What they don't tell you! I am still having debilitating pain from my sentinel lymph node removal. Er/PR -, her2+, 4/6 nodes positive. Any suggestions

dtad

Hi everyone. This makes me so mad! Doctors have to tell us about serious sometimes permanent SE of treatments! It just not ethical. We all have to make informed decisions. Maybe we would have gone ahead with it or maybe we wouldn't have but it is our choice! I didn't have chemo but I do have an autoimmune peripheral neuropathy that affects my whole body. So I get it! Neuropathy pain is no joke and really can affect your QOL negatively. Good luck to all dealing with it. Let me know if I can be of any help since Im going on 16 years with it....