Jerking or twitching legs?

Gerri · 10-15-2006, 04:22 PM

Hi everyone,

I am new to the boards and have already had many of my questions regarding side effects answered (losing my eyelashes again is a real bummer but at least I now know why).

I was diagnosed November 2005 with Stage II (T2, N0, M0), hormone receptor positive, HER-2/neu+++ bc. I had a lumpectomy in December and started chemo in January (dose dense); 4 cycles of AC then 4 cycles Taxol with Herceptin added at the second cycle given weekly until the end of chemo, followed by 30 radiation treatments. I am receiving Herceptin every three weeks for the total of one year. I am premenopausal and have been taking Tamoxifen since chemo ended.

I have been experiencing jerking or twitching in my legs for the past few weeks - it looks like I am hiccupping when it happens. Sometimes it happens often (every few seconds or minutes) and sometimes I can go for hours without any movement. I asked my onco but she had not heard of this with Herceptin. I told her about this web site and she suggested I put my question out on this message board. I see her again this Friday and would like to have an idea if this is something others are experiencing or if we need to explore other possibilites. When I saw her two weeks ago she said she would refer me to a neurologist if this continues.

So, anyone out there jerking and twitching like me? More than anything, it is downright annoying!

Thanks for any help you can offer. Stay strong.

Gerri

Sandy H · 10-15-2006, 04:35 PM

Sounds like you may have restless leg syndrome, my husband has that and he takes medication for it. Some nights his legs are all over the bed, in the air, falling down the side of the bed its awful. Other nights they just twitch, and wiggle around. I have seen patients in oncology react to benadryl with their legs jumping up and down. They tell me it last for a couple of days with them. I hope you find some help for this. hugs, Sandy

jeff · 10-15-2006, 04:36 PM

Hey Gerri,

Sorry you are facing this annoying problem. I've had similar and saw a neurologist who agreed with my self-diagnosis (love that! and he said he has it himself) that it seems to be benign fasciculation syndrome. There's a great website/support place about it called aboutbfs.com. It's nothing to worry about, but it can be really distracting--sometimes I can see rippling in my calves from it...

All the best,
Jeff

mkrny · 10-15-2006, 05:54 PM

I'll offer two perspectives on this.

Based on your history I would be surprised if you had any spinal invovlement at this point but I would recommend you aire on the side of caution. I don't want to scare you but I'd push for an MRI of head and spine to rule out mets to these areas. The more likely answer is what others have answered but don't get complacent.

Another thing to try is, if you exercise your legs a bit, so they get a little tired, do you still get the twitching? This reminds me of something my dentist told me a long time ago regarding my grinding of my teeth when I slept. He told me to chew gum during the day to make my jaw muscles a little more tired. It worked.

Gerri · 10-15-2006, 06:56 PM

Hey Jeff,

I checked out the BFS website and the symptoms fit me to a tee! I'll take this info to my onco on Friday and see what she has to say.

Thanks much!

Gerri

Vanessa · 10-15-2006, 07:06 PM

Hi Gerri,

I have rls and my symptoms only begin to bother me at night. My general physician gives my requip and it works like a charm. I also take extra Vitamin B and sometimes if I let myself get low on iron, it gets worse. I am also going to check out the website.

sherri · 10-15-2006, 08:36 PM

I had this symptom during my one year of herceptin. My last Herceptin was in May and since June it never happened again.

Lani · 10-16-2006, 05:41 AM

could you add this to the post regarding side=effects of herceptin, real or perceived, as someday I would like to submit it to a professor of pharmacology, Dr. Slamon, Genentech, or whoever may turn out to be interested and receptive. It would also be much appreciated if you could add it to Rhonda's post on what symptoms disappeared after one's year of Herceptin ended. I am sure those still in their year will be happy to hear your report! Thanks, Lani