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Old 08-22-2012, 01:00 AM   #1
KsGal
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Join Date: Dec 2011
Posts: 585
I couldn't make this up if I tried

So I had a doctors appointment this morning. When I went in, he asked me about any symptoms I had been having, I told him about the pain I had been having in my muscles and joints that is so bad it keeps me from sleeping, etc. I also mentioned that I belonged to a website of all HER2 patients, and on the site they suggested to me that it might be the preservative in the Herceptin, and I would like to try it without the preservative in it.
He then proceeded to tell me there was no preservative in the Herceptin. When I insisted, he called over to the chemotherapy area to try to verify it. When he got the person on the phone, he told them some "people have been telling her some crap on the internet". After a few minutes on the phone, he got off and told me that the preservative was premixed in the Herceptin, and it was alcohol and wouldn't hurt me any more than taking a shot of whiskey. He said that could not possibly be what was causing me to hurt, and said I had chemotherapy induced fibromyalgia, and I needed to do YOGA.
Sooooo...feeling rather frustrated, I, of course, came home and did some research, and find that the benzyl alcohol is, indeed, in the bag shipped with the Herceptin that is mixed at the time it is given to a patient, and if the patient has a sensitivity to benzyl alcohol the herceptin may be mixed with sterile water.
Also, I asked if I might have a brain scan. After what happened with NEDenise, I wanted to take her advice and get it done sooner rather than later. He told me I could have one when/if I displayed neurologic symptoms.
Although this man is very well known and supposedly brilliant and the president of the cancer center, yadda yadda, I know after this I need to switch doctors. Im truly offended that my suggestions were not taken seriously. My question is, do I need the doctor to tell the person who mixes my Herceptin to mix it without the benzyl alcohol, or can I just request it myself when I go for my next round of Herceptin? I won't see a doctor again before my next round.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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