regarding Herceptin side effects

[IRENE FROM TAMPA]

I read the post where some of you are experiencing some side effects since on Herceptin.

I was on Herceptin since 1999 (weekly) and was taken off of it last July when I started on Abraxane. The last 1 year to 1 1/2 while on Herceptin I started experiencing some very bad leg and hands cramps. I have had muscle cramps before but never this severe. I reported this to my onc. at the time who had not heard anyone complain about the same side effect. I thought it might be something else going on. I had such a severe cramp one day that I feel that I had some permanent damage to my muscle/tendent (?)

Upon going off of the Herceptin my muscle cramps stopped and I did not have until now again. I started up again (on a new chemo regimen now so back on Herceptin) I am on Taxol/Carboplatin/Herceptin.. I just took my third dose of the combo with this week taking Herceptin alone. I am again starting to experience muscle cramps again which is making me very nervous.

I am very happy to be back on it but also very concerned.

Just wanted to know if anyone had similar and what you do if so.

Thanks

[Sheila]

Irene
I have been on Herceptin for 2 1/2 yrs and I have been getting what I would call like charley horses in my feet and legs....not all the time but when I do, they are bad. Maybe it is something with long term Herceptin....I don't think they really can account for all the side effects yet until women are on it long term. How are you tolerating the new combo? Hopefully well, I have had Xeloda added to the Herceptin and so far it is not bad....hope I continue to feel well on it as I am going to Florida in a month! I want to feel good to enjoy the Florida sun! I try and go every year, last year it was Key West, the year before Tampa - St Pete as I have family there....I LOVE FLORIDA!!!!!

[IRENE FROM TAMPA]

Thank you so much for responding.

I am just a bit concerned since I know how badly they affected me last time.

I was on Xeloda with Herceptin several years back and the really only side effect I had was the hand/foot thing and I really did not have a bad bad case.
Other then that I tolerated the combo rather easily.

Where in Florida are you visiting this year? I love Key West myself and I was born and raised in Tampa, so St. Pete/Clearwater area has always been my stomping grounds. We practically lived at the beach in Clearwater when we were growing up, those were the day's when you could actually get to the beach without paying parking meters and did not have to fight the traffic. It has changed alot since those day's but still very pretty. I guess I am really dating myself - :)

I hope you have a wonderful time in Florida when you visit.

[Sheila]

Irene
I am going back to Key West in June, then in July I am going to Disneyworld with my daughter and grandkids....my brother used to live in Tampa...was stationed at McDill AFB when he was in the service....I have family in St Pete also, and friends in Haines City, Ft Myers, Naples, Marco Island, Sarasota and Lakeland...I LOVE THE WHOLE AREA.... but the gulf coast is my favorite by far....I hope to be alive to retire in Florida....another snowbird gone south!!!

[Sue2001]

Irene,

I was only on Herceptin for 1 year but I had muscle cramps in my legs and back that started while on Herceptin. I never had spasms prior to that. They decreased somewhat when I stopped the Herceptin but I do still get them 3 1/2 years later. They became so annoying during the night that I now take a muscle relaxant prior to going to bed. I had wondered if my salt or potassium levels were off but everything checked out ok. My onc isn't sure that the cause of the spasms is the Herceptin but I believe it is.

Sue