Please Help: continue Herceptin or stop completely

I know of two studies that are ongoing that are looking at herceptin for 6 months vs. 12 months (Persephone and Phare). 

http://www2.warwick.ac.uk/fac/med/research/ctu/trials/cancer/persephone/ 

http://clinicaltrials.gov/ct2/show/NCT00381901?term=Trastuzumab&rank=155 

My EF went from 57 to 30 after only three Herceptin doses.  Cardiologist believes the low EF was due to AC (chemo) that I had this past summer, probably not the Herceptin.  I will have another Echo the end of January to see if the EF damage has reversed itself. Meanwhile am on two heart meds.  To my knowledge the plan is to resume the Herceptin once EF gets back to normal and they will closely monitor me. 

They still don't know how much Herceptin is enough. 6 months might be OK but they just don't know yet.

I have had 4 tx (with TC) so far. I had a MUGA before I started but they haven't done another yet. I think they may do one after chemo is over (2tx left).

Usually the heart issues with Herceptin resolve themselves once you stop but if you continue to have problems they shouldn't keep you on it from what I've been reading.

You are ER+/PR+ so I assume you will be getting hormone surpression therapy too. That also is a huge factor in reducing your recurrance risk.

Let us know what they say at the Mayo Clinic… Good luck

I have been on Herceptin for a year now, and my EF went from 65% to 70%, simply because I walk hills 4 times a week and give my heart a good work out.  I also know of a woman who was on Herceptin for 16 years, before eventually going off it.  It is the Adriamycin which damages our hearts more than anything. Having metastatic cancer, I know I will be on Herceptin forever, unless they learn that it is not necessary.   Hope this helps.

If you check out the Herceptin site you will notice:

Infusion Reactions and Lung Problems

* Some patients have had serious infusion reactions and lung problems; infusion reactions leading to death have been reported.

* Symptoms usually happen during or within 24 hours of taking Herceptin.

* Your infusion should be temporarily stopped if you experience shortness of breath or very low blood pressure.

* Your doctor should monitor you until these symptoms completely go away.

* Your doctor may have you completely stop Herceptin treatment if you have:
o A severe allergic reaction
o Swelling
o Lung problems
o Swelling of the lungs
o Severe shortness of breath

 Patient Counseling Information

* You should contact your doctor immediately for any of the following:
o New onset or worsening shortness of breath
o Cough
o Swelling of the ankles/legs
o Swelling of the face
o Palpitations
o Weight gain of more than 5 pounds in 24 hours
o Dizziness or loss of consciousness

 Source:  http://alturl.com/chsy4 

LLL-6500 thanks for the update. It sounds like the Mayo people make lots of sense. I also agree in moderation. I think the key for all of us is to keep our weight healthy as well as eat right. The more we eat things that aren't packed the better. If you don't buy organic fruits and vegetables at a minimum you must wash them well to get the pesticides off them. Limiting red meat will also limit the crap they feed the animals from getting in your system.

And we all know one of the most important things we can do is exercise every day. None of this is a guarantee but it does put the odds in our favor… and also prevents us from getting other diseases/conditions other than just cancer.