Neuropathy and Herceptin

I had two rounds of TCH and then straight herceptin. I lost the feeling in my big toe on both feet while on chemo, which ended at the beginning of November. It is now increasing, going into my other toes, either no feeling or tingling. Has herceptin caused this reaction for anyone else? Or is it possibly chemo-related and getting worse. Any comments are welcome.

[tricia keegan]

Hi Grace, I had Taxol after a/c and developed quite a lot of neuropathy in my left hand,this eased some time after chemo but came back when I began Arimidex.
I take Glucosamine/chondroitin which does help but still get bad days and good days with it. On the bad one's my fingers just "Lock" and it's very painful even to open them.
I'll be interested to see your other replies in case someone else knows anything better that may help!

Thanks Tricia,

I did take both while on chemo but stopped and assumed the toes would get better in time, not worse. It wasn't a big deal as it was only those two toes and it didn't impair my walking, but now I'm a bit concerned.

[Mary Jo]

I never had any neuropathy while on only herceptin and only a little "tingling" in my feet while on Taxol. I was fortunate I didn't experience it the way some can.

Mary Jo

[Alice]

My experience with neuropathy started with AC. My onc was so surprised by this that they took pictures of my hands to put in my file. I didn't loose the feelings in my hands or feet altogether but the tingling and sharp pains are always a reminder. During radiation the burning pains in my legs had become so bad that I could only sleep for at best 2 hours at a time. My hands and feet pealed regularly and my finger and toe nails were always threatening to come off, so I wore band aids. I felt bad about this until I came across a person that was more severely affected than I was and then I felt lucky. I guess I wanted to share this because my onc said I had one of the worst cases she had seen, and yet It's OK. Most neuropathy resolves within the first 6 months after therapy, so it will get better. My case is one that did not. The Dr. prescribed a medication though that has helped me immensely and the neuropathy is always there for me, It is a small price to pay for the next 20 years!

[Chelee]

Grace, I did 6 rounds of TCH. I do know I did experience numbness in my finger tips & also in my toes. Especially my big toes on each foot. They both took it the worse for some reason? My finger nails & big toes turned black towards the end of trt also. But I did notice besides the numbness as time went on it actually got worse before it got better. The bottoms of my feet & toes were a little numb. I would notice it more when I was bare footed. But as time went on it started decreasing and now my finger tips and toes are back to pretty much normal. (In fact, I just finished my last herceptin...so I know it wasn't that.) Because my feet & fingers improved once I was off the taxotere and carbplatin & just on the herceptin.) Everyones body can act different, so its always hard to say. I have a feeling if you give it time and wait it out it will disappear slowly but surely like mind did. It does take a while though. Hang in there.

Chelee

[sadiesis]

My neuropathy started with taxol/herceptin combo. My onc first told me that it should disappear once I was off of taxol, but it continued (to this day). Now my onc said it will probably be here to stay. I have numbness in my toes and the bottom of my feet right below the toes. I also get the shooting pains in my toes. She prescribed something that would help with the neuropathy at night and also help me to sleep and ease the hot flashes. I haven't taken it yet because it is a mild anti-depressant (I am not depressed).
I've heard so many negative things about antidepressant use (in the news etc) that I am afraid to take them.
If neuropathy is the trade-off for living another 20 years, I can handle that!

[Jean]

Grace,

I had (still have some - it has improved with time) the same condition in my
toes and bottom of feet by the top (ball of the foot). It does decrease and
takes time 6-9 months. Discussed this with Dr. Slamon and he said it is from
the TC....I did not get this reaction until after I completed the TC treatment
of six...I wonder even though you had two treatments you also did not have
this reaction until you stopped. That is interesting I am curious if our bodies
react some way afer the treatment? In any event I was in a high degree of
discomfort (I have a high pain tolerance) I saw a nerve specialist in NY
who recommended Cymbalta which helped 90%...there are past articles
on this also helps with joint and muscle pain from AI. There was a study
on patients with diabetes (neuopathy is common among those patients)
and Cymbalta was found to give relief - it does work since the nerve
specialist I saw started me on a low dose twice a day. Within ten min.
of takin the med. my toes felt normal. These days when I wake up they
are not as numb I would have to say I have about 50% improvement.
I am hoping that by the end of summer to be back to normal.
Hope this helps.

Kind Regards,
Jean

Thanks everyone for your responses. Much appreciated. Listening to some of your stories, I feel such a baby. I have no pain in my feet; I just feel that my big toes have taken a long vacation and I miss them. My concern is that the others seem to be heading the same way, but no pain at all and so far no problems with walking, not that I do much of that these days. Again, thanks.

[michka]

Hi Grace!
I too had neuropathy after 12 weeks of Taxol+Herceptin. In toes and all fingers. It was difficult to support in the toes and feet. I finished chemo end of december. Now, 3,5 months later, I only have one finger that has no sensitivity. All the rest came back little by little and I am still on Herceptin every 3 weeks. I hope the finger will come back also. Hope it will be same for you soon!

[Jean]

I know that you have started to take sume supplements, vit. B 6 helps
very much. I take a supplement of the complex B vitamins. You may
want to do so if you are not already. Also, noticed that you said you
were not walking mujch of late. It seems to improve if you do walk
and allow your blood to circulate. Also having cayenne in your diet
will increase your blood circulaton. (May want to have some hot food
esp. if your not walking or exercising) a good excuse to have your husband
take you out to a new restaurant of exotic food! So many in New York.

Kind Regards,
Jean

[LindaC]

Hi Grace,
after 15 treatments taxol & herceptin My onc.stopped the taxol because of numbness in all my toes and part of the feet.I use a cane because sometimes i can't feel the floor under me.So I get a six week break from taxol.I will be going for another pet scan and muga scan in the meantime.

[lu ann]

I had taxol, carboplatin, herceptin, navlebine, and gemsar, without having neuropathy. I have been on doxil since December and half of my left hand is numb from my thumb increasing to my pinky.

I cut my husbands hair this morning and had a hard time holding on to his hair with my left hand. I don't know if this will go away.

Are you on taxol or taxotere? If you have many treatments left, you might want to ask your doc if you can get the tx weekly rather then every 3 weeks. The dose is smaller and less toxic.

[doh2pa]

Hi Grace,

I too suffer from post chemo neuropathy in my feet (big toes especially). It happened first in 05 and seemed to dissappate after about 7 months, just in time to start another round of chemo. I do the B6 and glucosamine religiously. I finished treatment in Jan (still on Herceptin) and the neuropathy is still annoying. So yesterday I saw an accupuncturist. I figured, what the heck! She said I would know if 2 to 3 treatments if it was helping. I have to say, that last night (when it is usually the worst), my feet were not bothering me at all...they are still a little numb, but not horrible. I go again next week, so I'll keep you posted. She also said that regular massage and warm compresses might help.

Donna