Side effects?
 

I have been on a 3 weekly dose of herceptin for just over 4 years. This followed a lumpectomy and radiotheraphy in 1999, then a 2nd diagnosis for which I had 12 rounds of chemo and 6weeks radio again. Mostly I have tolerated the herceptin with minor side effects, the occasional flu like symptoms and that is all. However on the latest visit to my oncologist I mentioned some symptoms of shaking, facial tics, difficulty picking things up, a real weakness in my right side (the left side was where the cancer was) difficulty walking when tired, difficulty standing from a seated position, small micro writing, her immediate response was that I probably had Parkinson's disease (some girls get all the luck!) I am due to have a brain scan to rule out a brain tumor, but I wonder if there is anyone out there who has been on herceptin long term and experiencing similar symptoms. The herceptin continues to do the job it is intended to keep the cancer at bay.

Re: Side effects?
 

I have only been on Hercepting for 12 weekly doses now but have noticed since last week a tick in my right eye. I was/am going to mention it to my onc next week. I don't have the other symptoms other than extreme swelling of ankles and feet (and therefore heavyness when getting up/down) but the onc attributes that to the Taxol.

Re: Side effects?
 

I have just finished one year of Herceptin and Tykerb. I had it weekly along with Taxol the first twelve weeks, then every three weeks for the duration. The Taxol did a number on me so I couldn't tell what was causing what. After I was on just the Herceptin and Tykerb, I did have chills and a runny nose which was caused by the Herceptin. I also developed severe muscle cramps in my back and neck from the Herceptin. Sometimes the cramps would also be in my right hand. I had my last Herceptin a little over three weeks ago and the cramping is almost gone. I sincerely hope your problems do turn out to be side effects and nothing more serious.

Sandra

Re: Side effects?
 

Thanks for the responses, with regard to the cramping I too get cramping but so does my husband our doctor put me on quinine (or you could drink more gin and tonics) and my husband on magnesium sulphate both drugs have worked a treat.

Re: Side effects?
 

Hey, Glad to hear the Herceptin has worked to keep you NED. I have been taking the H for 1 1/2 years.

I have had little eye tic on on eyes somethimes, not a lot. Also leg cramps in the middle of the night a few times. I have osto-arthrist in my hips that has really progressed over the last year. They are making problems with my legs, and back. They are why I had a hard time standing up stright after seated for a long time. I have been seeing a PT twice a week for a couple months.

You are doing the right thing by having a brain MRI. Let us know

Blessings

Re: Side effects?
 

In response to Alice I note that you have had PET scans while on Chemo and herceptin is this correct? I was told that I couldn''t have a PET scan because chemo and probably herceptin could give false readings when mixed with the 'stuff' they put into you for the PET scan, and my oncologist was reluctant to take me off hercpetin for three months.

Re: Side effects?
 

Hi
I also have had little facial tics whilst on herceptin. It feels a bit like a mini muscle spasm. Like a lot I also have had stiffness in my joints and muscle pain around the rib area
Ellie

Re: Side effects?
 

Please post your questions about herceptin side-effects on the thread


"please post your two cents on side effects of herceptin, real or perceived"
under

http://her2support.org/vbulletin/showthread.php?t=23696

I started it as a resource where people can check back in location as to whether others had similar experiences as well as a resource should the drug companies every do what they are required by the FDA to do ie, dilligently examine post marketing experiences with their drugs

I saw little evidence that this was being done with any robust effort, thought this would be a way to both gather the information and perhaps shame the drug companies that they were not doing more

Re: Side effects?
 

Lani,

If you feel the drug companies might actually look at our journal of side effects, I think "side effects" should be a forum topic to give it the right visability to new members and to make it as complete as possible. I do not believe the oncology offices report side effects consistently except in the clinical trial environment.

Re: Side effects?
 

How did replies regarding Zithromax get posted on this thread?

Re: Side effects?
 

Nancy -
The spammer on zithro has been removed.
Hope the thread can resume normally now.

Re: Side effects?
 

Another side effect question?.....has anyone had severe diarhhea with their Herceptin only treatments? I'm doing every three weeks now until the end of May 2011. For about 5-6 weeks the diarhhea has worsened and is now just terrible. Onc doc gave me Lomotil since I was taking about 6-8 Immodium a day just to be able to function and it hasn't helped much. Have eliminated lots from my diet and eat very low fat. Any suggestions will really be appreciated.

Re: Side effects?
 

Joni,
I did have lapatinib along with my Herceptin, so I attributed the diarrhea to the lapatinib. I can tell you what I did that helped and hope you can use some of the info for some relief. I found that a diet very low in fiber was the best for me. I avoided fresh veggies and fresh fruits. I found a low fiber diet and it suggested eating canned fruits and only green beans and asparagus. You could also have rice, potatoes (baked seemed especially good), broiled meats. It also suggested eating white bread instead of whole wheat. Whole wheat and dairy products seemed to really set me off. In other words, avoid all that healthy diet you are used to!

Along with that, my onc and study nurse suggested I take two Immodium and one Lomotil at the first sign of cramping or any other symptom. This was the only way I could get a grip on my problem. Usually, if I was careful, after taking the combo of the drugs, I would be sympton free for about three days.

The good thing is once I finished my treatments, my tummy returned to normal within days and I was able to return to a normal diet quickly. Good luck!

Sandra

Re: Side effects?
 

Sandra - thanks for the reply. I will definitely be trying your regimen. It will be easy for me - I love rice and baked potatoes and won't mind the canned fruit. I had already gone to the white bread but will forgo my morning banana for some canned peaches. I've been scared to eat anything especially if I have something planned outside the house. And I was very glad to hear that long term use of the lomotil and/or immodium didn't have lasting effects. I'm seeing the nurse practitioner at my onc's office tomorrow morning and will clear this with her but can't see any harm in trying it. At this point I'll gladly try anything - especially something that has worked well for a fellow HER2 sister. thanks again.