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Jan 7, 2013 09:10AM
Well I am sorry to read what you are going thru as I can certainly relate, we all can on one level or another. I am hoping that since your last post you have managed to get an appt with another oncologist at Princess Margaret Hospital that you intended to phone. You may want to try Odette Cancer Centre in Sunnybrook Hospital. I was just there on Dec 31st for Stereotactic Radiotherapy for a small brain tumour and found them wonderful!
I was diagnosed in Dec 2010 with Stage 4 bc with bone mets to my upper spine. I never did have a mastectomy because they told me that it was too late, since it had already spread, so it wouldn't do any good. Funny at that time, I would gladly have had them both removed thinking it would save my life! We tried a couple different chemo cocktails, I would have to look them up, but ended up on Taxol with good results for a good long time. We stopped when the side effects became too much and gave my body a break for about 6 months as we had NED at that point. So it came back in Early 2012 and had also spread to my lungs and my liver. We tried weekly Paclitaxel, but it didn't do enough. Then we tried Afinitor and Aromasin, but again it wasn't enough and we had progression of disease in my bones so involved all of my spine, my pelvis and hips, ribs and so on, as well as further progression in my liver, and as of Dec 2012 I have mets to my brain. So we have switched to Xeloda and I am happy to be reading that some of our friends on here have had some good results with it, so hope that hopefully this will be the answer for me! As we say, everyone has something that will work, you just have to keep trying them and when they stop working, you switch to something else! In the late fall, we did radiation to my upper spine and right shoulder, and just before Christmas we did radiation to my left femur, right hip and (sacrum) tailbone. Then on New Years Eve we were lucky enough to get in and have my brain tumour taken care of with pinpoint radiation in Toronto as I mentioned above! We were so thankful to have it done so quickly and now if we can just get my liver taken care of, we will be so very grateful! So I am telling you my journey in order to let you know that it is a "journey" and that you need to set your mind in a Positive state that you are ready to Fight and Win! You need to let your doctors know that they need to be onboard with you, and if they are not, then you will have to move on to one that will. I did replace my first oncologist, so it is possible even here in Ontario, as you have to be comfortable with your doctor. It is very important for you to be able to relate to your oncologist.
I also recommend recording your appointments, as it is so much information for you to absorb, you are on emotional overload, and it isn't possible for you to take it all in or even write it all down. Of course taking someone with you, goes without saying. What we have found is that we take our digital camera with us, we get the doctor's consent first of course, and we record on video without actually pointing it at anyone, so we record the conversation. This way we can listen to it when we get home and we haven't missed anything. We can refer back to it and take notes if we want to, save it or delete it, but we at least have not missed it at the time. I would also recommend you go ahead and take the pain pills your doctor has prescribed. When you take the chemo or the radiation, your pain will lessen, so in the meantime, take the pain pills so that you aren't suffering needlessly. None of us needs to be in pain. That is one thing you can try to control, and so be kind to yourself and take the pills. Your body will tell you if/when you need them. And it sounds like you are fortunate like myself, and have a wonderful supportive husband, and that also makes the world of difference! Surround yourself with love and support and positive people. Don't allow the negative people in your world! Read positive books! Plan on Happy Things to look forward to! You are going to be a Winner! Now get ready to Fight and Win! Hugs!
12/6/2010, IBC, 2cm, Stage IV, mets, ER+/PR+, HER2-