Herciptin Overload?
 

I was diagnosed in Aug. 2007 Invasive Ductal Carcinoma, Poorly Differenated, HER2 Positive, Node Positive. Had 4 rounds TAC, weekly Herceptin. Bilaterial Mastetomy, Dec. 2007. Surgeon found residual minute foci in breast tissue, Lymph nodes showed no evidence of malignancy. Jan. 2007 Started Taxol, Radiation, continued weekly herception. Onc. said I needed to take herceptin until Jan. 2008. Had side effects from herceptin late in the summer, Started feeling so tired couldn't take care of my self, Lower back pain, chest pain. (Mugga scans OK) Then my face started to break out. Onc said I had herceptin over load. Need to take a break. Break lasted 6 to 7 weeks. Started back on herceptin, Made it for 7 weeks, side effects returning. Onc said Herceptin is so TOXIC, and asked me if I knew that in Great Britian Herceptin only helped 2 out of 100 women. He ordered PET scan, will see him tomorrow. My friend who was with me last week asked him if there was something else I could take, He just shook his head and said no. I'm pretty sure he will take me off herceptin. Anyone got any advice? Not really sure what to do. Been on this site for a while now, and I know there are many of you taking other things.

WHAT !!!!!!!!

Herceptin is not a toxic drug as it kills nothing. The response rate is also closer to 30 - 40 %.

Where do you live?

Regards
Joe

Joe, I live in Kentucky. Getting ready to leave to see onc. Got some questions in hand. I've made an appointment with another onc in a couple weeks. I seen him a while back. We don't have a regular doc right now. Cheryl

What city are you nearest to?

Can you see another onc? I would recommend finding another one right away... that is a very odd response from him.

I was originally on Herceptin for 20 months and am on it again with nothing like you describe, and no cardio-toxicity either. Are you on Herceptin by itself, or in combo with anything else?

I have been on Herceptin non-stop since 12/31/98. Maybe your dose is off.

A few thoughts
 

I wrote something that seems to have disappeared into cyberspace, so here are my thoughts in a nutshell:

* Your oncologist doesn't seem to be that knowledgeable. Yes, some of your problems could be herceptin (tiredness, broken out skin), but some of them could be all the taxanes you have had, since you did an unusually large number of cycles and taxanes are associated with achiness. Herceptin mainly causes problems because patients have had so many really toxic treatments beforehand, especially things like adriamycin.

* His figures on the UK are way off. There is no way the British National Health Service would fund an expensive drug if it only benefitted 2% of people. Herceptin with chemo has halved recurrence in a number of trials, whileherceptin after chemo seems to reduce it by around about a third. In the UK, it is not used with node-negative, ER-positive patients because the overall benefits for that group are smaller. However, since you were first diagnosed as node positive, your benefit would be much higher.

* Did you have your herceptin after chemo or with chemo and, if so, with which chemos? There have been some successful small trials in which herceptin was given only with the taxane part of the chemo, suggesting that that is where the main benefit comes in. So, if you are having problems tolerating the full year, you should consider that you may have had most of the benefit already if you had herceptin based chemo.

Figured out what that 2% might be
 

The percentage of people who got herceptin only after chemo and thereby avoided a recurrence in the HERA trial's one year followup was 8 percentage points (something like a halving of risk from a sixteen percent chance of recurrence down to 8 percent). Since only about a quarter of UK patients are Her2-positive, based on these results herceptin used after chemo would reduce the recurrence rate of all breast cancer patients in the UK by two percentage points. This is the only 2% I can think of, but it really isn't relevant to your situation.