Possible neuropathy symptom due to Herceptin?

07-12-2006, 01:23 PM

I receive weekly herceptin treatments. The side effect that I am feeling is a painless sensation that first occured in my legs and then feet too. It feels like a moving sensation (like air traveling from one area to another, but on the inside, almost like a moving vibration) BUT NOT like pins and needles or numbness. Recently the sensation moved to my chest, right around my heart area and it still continues in my legs and feet. It has repeatedly occured 2 days after a treatment and lasts about 2-3 days gradually subsiding in frequency and area. It's off and on through out the day and night. Heart Echo was fine and I'm not on any other meds. I'm sorry- this is hard to describe, but it's undoubtedly due to the treatment in some way. Anyone had a similar symptom or side effect. I REALLY appreciate your thoughts and your sharing of stories. THANK YOU! Denise from Ohio

Mgarr · 07-12-2006, 07:34 PM

Oh yeah! I have that "tickly vibration" in my legs - more so in the one w/ the severe muscle cramps/aches. I have not had it in my chest area but sometimes up my back. I finished my year of Herceptin on June 21st am hoping symptoms subside. I will keep everyone posted as to the any changes after stopping Herceptin.

Good Luck

Mary

07-13-2006, 06:59 AM

Thanks so much for responding. My doctor thus far hasn't been able to help figure out what is going on with this sensation. So then I wasn't sure if I should be concerned or not. You know how it is. Thank You! I hope that yours goes away now that you are finished. I finish up in October. Thanks Again! Good Luck to you always!

newgg · 07-13-2006, 11:31 AM

Are you doing IV benedryl before your herceptin infusion?? That can do things to your legs and gave me strange dizzy, tingling around the mouth, feelings. Do a smaller oral dose now with no problems.

Have you tried tonic water for the leg cramps? Does the trick for me .

Hugs, Bonnie

Liz J. · 07-16-2006, 07:39 PM

The IV Benadryl. That is the same exact feeling I get from it. I am going to ask for a lower dose - oral version. Have been on Herceptin every three weeks since February and it seems every time I get the Benadryl I get this for about about two hours. I am sure it is not the Herceptin as it starts as soon as I start getting the IV Benadryl. Thanks for the heads up.

Sincerely,

Liz J.

R.B. · 07-17-2006, 02:35 AM

Please see posts on balancing omega three and six etc.

Trials have reported improvements in neuropathy from diabetes ans consequent on excess alcohol.

I have previous asked the question does herceptin block the fatty acid sythesis pathways for making long chain fatty acids which would include DHA and EPA.

RB

tousled1 · 07-17-2006, 04:01 AM

I have only been on Herceptin a short time but am experiencing the same effects but only in my arms/hands. I had a 3 week dose with benadryl as a premed and I had terrible side effects. Switched to every week and get no benadryl.

MJo · 07-18-2006, 08:33 AM

I have a tingly feeling in my fingers after herceptin treatment. I thought it was chemo recall -- taxol recall. Maybe it's a side effect of Herceptin alone. It only lasts a day or two for me.

Sandy H · 07-18-2006, 11:35 AM

I wonder why you are getting benadryl before Herceptin????If you were getting chemo that is different. Most only get tylenol with Herceptin. One nurse tried to give it to me and I refused it. May want to try without it and see if you feel better. Only my opinion and you do what you feel comfortable I am not a doctor therefore, not giving medical advise. hugs, Sandy

07-18-2006, 11:53 AM

I don't get ant pre drugs before getting herceptin, they just do the herceptin once every three weeks. I think it's funny, i have been getting herceptin since April and just in the last month have had these weird sensations running down my arms to my wrists, could this be from herceptin? Never realized that...

tousled1 · 07-18-2006, 07:02 PM

I only got the benadryl with my first 3 week infusion -- nurses said it was to cut down on side effects. I no longer get the benadryl with my Herceptin.

sadie · 07-18-2006, 07:37 PM

I got a double dose of Benadryl with my 1st triple-dose of Herceptin.
I napped for almost 3 hrs while at the treatment center! I asked that they cut the Benadryl in half and that suits me fine. I really don't want to cut back on the Benadryl anymore, because that's the only really decent sleep I get! lol
My understanding is that the Benadryl cuts down on any allergic reactions to the Herceptin.