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I was on weekly Herceptin for one year. After my initial treatment (loading dose), which I had at same time as Taxol, I don't believe I had any symptoms from Herceptin. I did not need to take any pre-medication with it. I also asked if I could receive it over an hour, and the nurses usually did that. I was able to rest and relax during that time. I received it "early stage." I started with it almost 4.5 years ago.
While I was on it I developed 3 attacks of acute pancreatitis--each 13 days apart. However, this was after I had been on it 6 months and also occurred about 7 or 8 weeks after I started an AI (aromatase inhibitor)--Arimidex. I think, if anything, the pancreatitis may have been related to the Arimidex. However, a private radiologist thought the pancreatitis may have been related to having many enlarged retroperitoneal nodes which I had since time of diagnosis.
Also, one week week after the last of the above pancreatitis attacks, all blood levels were normal. About a week later I developed severe fatigue and weakness (including muscle weakness in legs and eyes). New blood tests showed that I was hypothyroid but my testosterone level was very high as well as AST. I was put on thyroid medication and level returned to normal with about 2 to 3 weeks.
Because of the high Testosterone level it was suggested I have a test to see where that was coming from or have ovaries surgically removed. At this same time I developed a severe burning pain in the pelvic region. (This burning pain was similar to the same burning pain I experienced at the time of my breast cancer diagnosis, a year and a half earlier, that had occurred 10 days before I noticed a change in my nipple). I consulted with an gynocological oncologist and decided upon a complete abdominal hysterectomy with Salpingo-oopherectomy. (The testosterone level had been double normal but when re-tested went up to 6 times normal, although that may have been a lab error).
I had the hysterectomy one week after my last Herceptin treatment. (Interestingly, at my pre-op appt. for the hysterectomy I had a pap smear done. The results of that pap smear showed abnormal cells. It was the first time I ever had an abnormal pap smear).
Although I was told that I was "early stage," I think I was at a more advanced level. My oncologist had allowed me to have it out-of-protocol because, as he indicated in a report, my case seemed to meet special considerations. I don't think I was out-of-protocol. I strongly believe that I was stage IV at time of dx. and the private dr's whom we consulted with for 2nd opinions hinted at the same.
What I did notice was that my alkaline phosphatase level which had been slowly increasing made its most significant jump 3 mos. after I stopped the Herceptin and was only 6 pts above normal. My oncologist then allowed "prophylactic" Zometa at half dose every 3 mos. along with Doxycycyline and Celebrex. The alkaline phosphatase level stabilized and then slowly returned to what it had been at time of dx. which was half that level.
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