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I wanted to share with you a conversation I had yesterday with Dr. Salazar at U of W in Seattle. I was calling to find out about a vaccine I might qualify for. I am IBC with skin mets. She told me I was not stage 4 (no organ or bone involvement) that I am still a stage 111b which is specific only to IBC. The vaccine that I was interested in is given with Herceptin only but one needs to be stage 4. She also asked me why I was on Herceptin for skin mets because there is no data that show Herceptin will work for patients that are not stage 4. She also said it is very, very toxic and why use it when it maybe, needed at stage 4. No data shows Herceptin keeps mets from going to bone or organs. She said people are thinking its a miracle drug, and it is, only for stage 4. I was a little frustrated with my oncologist because he kept telling me he has seen some servere damage to the heart from Herceptin and it made him very nervous to use it long term. Now, I feel better about him feeling this way. He is trying to protect my quality of life at this point. Just when I think I must know it all by now something new comes along. Don't know if anyone on the board will learn anything here but it was suggested by a member here to post it. Hugs, Sandy
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