Anyone else that would like to see this off the market?? I have had over 100 bc's removed in my life and I still would NEVER use this drug again for multiple bc's (I do think it serves a purpose for other diagnoses- but not multiple bc's) This is CHEMO therapy being used for a non-life threatening situation. And being prescribed by dermotologist's -not oncologists. It was prescribed to me at Stanford Hospital Palo Alto CA- by the Chief of Dermotology- the department cohersed me into doing their clinical study & lied about the side affects being minimal. Genentech sold us up a river people! To make money. It only works while you are ON the drug (the bc's completely go away while on it-which is awesome), when you get off it, they ALL come back plus more because you shot your immune system. I now have a REAL cancer that is life threatening & believe it is due to my shot immune system from this drug. I am a very healthy athletic woman in my 40's (I run marathons) I went to graduate school & I research clinical studies in the medical field for a living- just for a background on myself. I highly discourage others from using it! I don't like getting cut up every 3-4 months, but I will take that any day of the week over this alternative drug. Having multiple bc's is a bummer- I get it. But think twice about this drug please.
If I had known that it was aggressive chemo, and that you must stay on it for it to work, or any possible side effects, I would have NEVER taken it. Was one of the first research groups. Wonderful for 2 months, then everything came back and lost my hair. Two years later, have not had all my hair come back.
Plus now have the BCs cut off.
I was diagnosed with advanced basal carcinoma in my shoulder and a spot on my back in 2012. I was started on Ervivedge which I took for the next 4 years. It appeared to have taken care of the cancer. I had side effects of total hair loss, pretty complete loss of taste and severe muscle cramping. A PET scan could not detect any cancer left and neither did CT scans.
In 2016, I went to a plastic surgeon to have the skin on my shoulder grafted as it had pretty ugly scarring in the area. When he opened up the area, he found basal carcinoma inside. So did the Erivedge work somewhat but not totally or did it not work at all?. I had multiple surgeries to remove what was left. Then I had 6 weeks of radiation.
After this I was put on Odomzo which is a newer drug than Erivedge with the same action. After 3 months on it, I could not tolerate due to severe constant muscle pains in my legs making it difficult to walk. One of the side effects is Myositis which is what I believe I had with increasing blood creatine kinase levels. It has taken 2 months for that muscle pain to decrease but is not totally gone yet. Now I am trying Erivedge again and will have my shoulder area re-biopsied this next week. If i is still there, not sure what else left to do - my doctor said maybe a clinical trial?
- Erivedge Information for Consumers
- Erivedge Information for Healthcare Professionals (includes dosage details)
- Side Effects of Erivedge (detailed)
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