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

Well, here we go with loging in its been a month and now I have to get a new password. Have to do this every 30 days. Sandy

[Sheila]

I have been on Herceptin for 2 1/2 years every 3 weeks. I never had any chemo before the Herceptin. I notice I get like "charlie horses" in my feet and fingers more frequently...sometimes this can be due to a low potassium level, so I try to eat bananas and drink more orange juice to replace it. I also notice I bleed quite easily from even the smallest nick, cut or scratch, and bruise very easily too....that with the runny nose, watery eyes, cracks in my fingers and occasional aching after a treatment...but at least I'm here to be able to complain about all this, I don't think I would be without the Herceptin. My Dr told me 5-7 years minimum, depending on how things go....I trully will be a million dollar baby at the price of it!!!!!

[Lolly]

Marily, some on this board have reported that after a break from Herceptin, they've been retested and been able to resume treatment as their heart recovered. I remember one woman reported that she was in a clinical trial with Herceptin, and in order to continue on the trial consulted a cardiologist and was put on beta blockers to help with her heart function, which enabled her to continue in the trial.
You might consider seeing a cardiologist, or at least asking to have your heart retested in a month or so to see if it's recovered and if your onc will allow you to resume Herceptin.

I've been on Herceptin since Jan. 2001, so going into my 6th year now. I've only had problems with muscle cramps when we've had to add Navelbine, which I started again in October. In January started having pretty bad muscle cramping in fingers, hands, feet and especially diaphram so my onc had me start taking 400mg magnesium twice daily in addition to my 1500 mg calcium supplement, taken in 500mg doses 3 x's daily. I was amazed, this has stopped the cramping cold. If I forget a dose of magnesium, the cramps start up again.
I don't know what the connection is between Herceptin and magnesium, but for me the combo of chemo/Herceptin seems to create a real deficiency of calcium/magnesium. I eat a banana or two daily.

Sheila, I also have very "thin skin" now, go around with bandages on the ends of my fingers as I'm always getting little cracks that hurt like mad!

<3 Lolly

Hi Marily,

I have been on Herceptin since Oct. 2001 and have also experienced lots of cramping in the legs and feet, and sometimes in the hands. I experienced hand and finger cramping alot more back when I was on the Taxotere with my Herceptin. I used to wake up in the night with cramps in my legs and feet so severe, that I could hardly get them to go away even when I jumped up and tried to walk them out. I finally purchased some potassium tablets and when I feel a cramp first coming on, if I put one under my tongue it will make it subside fairly quickly. I noticed that when I exercise pretty hard, that on those nights, I will usually get the cramps. If I remember to stay well hydrated, that seems to help too. I also noticed that when I drink my OJ and eat bananas regularly, it is not as much of a problem. My main problem seems to be keeping my red blood counts up. I am always a little on the low side and I am not sure if this is due to the Herceptin, or just all the Chemo I have had over the years.

I also have some of the other symptoms that the other ladies have mentioned, like running nose and very fragile skin, that cuts and bleeds easily. But like Sheila said, I am just glad to be here to even be able to complain about it!

Kim in CA

[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

[bobbiw]

This Herceptin thing, my onc has said that I will be on it for a year only. It appears that most of you are taking it long term. I know that each case is different etc but am wondering if this is something I should be asking my onc about? By the way I too have leg and feet cramps and have had only 2 doses of herceptin this far.
Bobbi

[julierene]

Marily, maybe 1 more 250mg Magnesium tablet a day?

Bobbi, many of us are Stage 4. I believe early stage only take a year of Herceptin. So, when you get to this point, it's continual.

Hi I'm Tricia and I live in Ireland.I'm happy to say all the treatments I have been given so far have been the same as my friends in the US.
I am posting a reply for the first time as I also have developed severe leg and back pain recently.Even have it in my fingers sometimes.I am stage 2 and had 12 weekly Herceptin/Taxol and have been having it 3 weekly since early Feb.I was relieved to see so many people have these pains and aches as well as my onc just tells me it's probably from the Taxol and will take time to go.
Not much help there!
Tricia

[Joe]

Marila,

My wife Christine, founder of this website has been on Herceptin since late 1999 and has suffered no long term effects. Her latest and would you believe first
MUGA scan showed an EF of 65%.

Ginger Empey has been on Herceptin for over 10 1/2 years and also has shown no long term effects.

Another member Phylicia has been on Herceptin since October 1998 and has no side effects as well.

All of their stories appear elsewhere on this website.

Warmest Regards
Joe

[Marily]

Hi Joe, I am so glad your wife, Ginger and Felecia have all done so well on Herceptin for so long.. Being stage IV makes it a long run for us... My oncologist Gave me Adriamycin first but did not put it together with Herceptin, She followed all the rules so far.. Were any of the women on Adriamycin? I know they have tried to say that is the cause here for alot of things.. but? I can go back on whenever I want if I get frightened of being off... I was terribly, when I had to be off for my heart to heal... so my Cardiologist really worked with me..to get me back on my Herceptin. But now I am really unsure what to do.. and I feel so much better being off it.. maybe I just need a spring break lol
hugs Marily

[Joe]

Marily,

Many of the women here take coenzyme COQ10 in order to build up their heart muscles.

Christine was initially treated with AC in July 1999 when she suffered a recurrence. She went steadily downhill and when she was due for her final AC, she refused treatment and demanded Herceptin instead.

I know Ginger failed all available chemos in 1995 and entered the phase III trial of Herceptin.

Here are all of their stories and other successes of our group:

http://www.her2support.org/stories.html


Regards
Joe

[Lisa]

Count me in on the leg cramps. I have them in the morning and/or evening when I'm stretching in bed. My calves tighten up, sometimes really bad. But during the day, no problems. I've been on Herceptin continually now for about 2 and 1/2 years.

And please pardon my lack of mental ability, but what is "CHF?"

Love and light,

Lisa

[Marily]

HI Lisa CHF means congestive heart failure.. but now they are just calling it Heart Failure..
thank you so much for answering.. I am really getting a lot of information from this site and it is making me definite in my going to Los Angeles. I am going to call for apt tomorrow and am already searching for a good price for airline and hotel..
Hugs Marily
PS...has your Dr suggested anything for the cramping?