New ? I have been on Herceptin 5 years weekly with a miss only when I got CHF

[Marily]

My question... is there someone out there on Herceptin a long time with NED.. and are you having side effects... I had CHF went from ejection fx of 75 down to 23.. so watch that closely you CAN have problems after years on Herceptin... now for past year have been having increasing muscle cramps that have become more and more severe all over body ... last dose Herceptin 4 weeks ago put me out 1 1/2 weeks with cramping and spasms in hand arms legs upper and lower back and sides.. ? I am looking at it this way... if it can get my heart muscle why can it not get my other muscles? Does anyone relate? I am on doses quinine 260mg bid, Soma 350 bid, tums tabs 2 daily, Calcium Citracal 2 daily with 1/2 calcium from arbonne, A ,
Super B, E, C , Magnesium 250 bid, KCL 20 mg 1/2 tab daily blood work taken througout episode was ok? Have gone off Herceptin but not off other meds.Afraid to be off .... Afraid to be on......Please help thanks Marily

[Julie2]

I am also getting leg cramps, I was wondering what is the cause. I am on Herceptin.

Julie

[Barbara]

Hi:

I get cramps in my legs, thighs, hands, feet and even in my abdomen. My gyn doctor noticed how severe they were and told me to try tonic water until I could get a RX from my oncologist for quinine. She did not want to write a RX for quinine as she was not prescribing the Herceptin.

Barb

[Marily]

Hello Barb and Julie... I started out with just leg cramps about two years ago... things progressed on from there.
I have been calling around asking if any of the researchers at Genentec or from UCLA, the big research hospitals in Texas have looked at long term use, and so far have not found anyone.
I was told after a year... it is not cost effective to keep a drug study going.
I am making plans to have an apt. if not with Dr Slaman than one of his associates and discuss what seems to be happening to me now.
My Oncologist was sending out an e mail to about 90 some other Dr's to see if they have any Herceptin patients with these muscle effects showing up. I am also trying to gather some information about other long term users by posting here and in other places or any way I can, to get enough information to excite an interest in studying this.
The jist of their answers has been "well they have most all died, so the long term hasn't been studied".
I have a need to know about long term effects and a need to know how long I need Herceptin? For how long will I keep cancer free... No one really has looked into this and we are living longer, and we need answers... So please if you know of anyone else on Herceptin who has these symptoms, lets ask them what they are experiencing? What has helped?
Let's see if we can get information to encourage a researcher to care.... thanks Marily

[lisahammo]

Hi there

I, too, have been getting leg cramps since December. I have been on weekly Herceptin for 20 months now. I take Magnesium for it. I will speak to my onc. about it when I next see her. She has not mentioned anything about cramping from Herceptin.

Love Lisa

Christine founder of this site has been on Herceptin nearly 6 years, I believe, to my knowedge has had no side effects. Now, my oncology nurse was telling me Friday that there is some talk that they will be cutting down from giving a year of Herceptin to early diagnoses because of CHF. They just recently had two people who nearly died form it. She said they are seeing more problems with it now. My oncologist told me he is very concern for me because I have been off and on it for nearly 4 years. The last two years with no break. He is now doing mugas on me every 3 months. One time my infraction rate went down to 53 and he was very concern but then it went back up to 65 the last time so he said, "wow, I am glad". I think it may depend on the person and also how many chemo drugs we have had. I know that adramaycin is very bad as far as Herceptin is concern. I wonder if it makes a difference how close we get Herceptin after having the adramaycin? If it is less then a year then is it too close and then that means trouble. I only know one person in my area that had to stop it but she was older and had heart problems before. She nearly died from it. I don't like being on it but so far no problems and if the drugs don't get us the disease will so what are our options looks like death sooner or later. Sorry if I sound negative but its reality. At least one good thing is death for me means a better place then here. One person did remind me though that no matter where this disease takes me that it still will not be as bad as when Jesus died on the cross of our sins. That sure has made it easier for me to think about. Enough didn't mean to start preaching. hugs, Sandy

[Carol H]

I have been on Herceptin 2 and a half years and my MUGA scans seem to fine - around 63 at the moment - and yes I also get alot of muscle aches and pains and in Scotland there isn't as much available treatment as in the USA but I receive intravenously a Biophosphate treatment called Pimmidranate every 3 weeks which does help but about 10 days afterwards all the pains come back particulary in my ankles and knees but am glad the Herceptin is keeping me alaive - although my GP has arranged an XRay of my ankles as the wear and tear on them is quite severe and not sure if Herceptin caused this or the cancer spread to my bones or brought on early stages of Arthritis - I am only 37 but feel I have the body of much older person.

Not sure if this helps but you women in America seem to be far more aware of all your treatments and have much better information on your disease and a better life expectancy than us Scottish women.

[Marily]

Hello my Scottish Friend,
Thank you for commenting on Herceptin side effects. I am keeping a log to take to California with me.. I have a friend who had alot of discomfort in her ankles, she also was on a lot of chemo during the past years, so ? who knows where the pain came from. Do you have numbness along with the pain? Has your Dr done an MRI scan to check Your bones? Sometimes it is very hard to determine where the pain comes from... When I get achey I sit in hot water either in the bathtub or hot tub.. that seems to decrease the pain..
wish I could help more ... My friend used pain meds to keep her going.. and actually I cover up my aches with a pain pill also.. called Ketoprofin a non steroidal anti-inflamatory.. lol.. I wish we had spell check on here ... I take that or I feel like and old woman... it helps alot... but I have to have my liver functions checked every three months to watch for dammage so far I have been fine on it for over 6 years.. I also keep moving but with a much less strenuous exercise regime.. chi gong, tae chi, walking.. I found if I sit I get stiffer so I go easily.. Can't jump around like I used to do.. and I really don't want to anyhow ... take care, Marily