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I relate to the conversations going on with you people. I too am in the same pile in the BCIRG 006 trial on the AC-TH arm. My stats include a mastectomy last March followed by chemo followed by radiation concurrent with Tamoxifen. Radiation ended 12/29/03. Now I am dealing with the fallout from full torso lymphedema and scar tissue - only we can't do much right now because the skin is still too fragile. I stretch but it's not enough to combat the symptoms. Massage is just around the corner to rein in the fluid and break up the scar tissue. Compression includes wearing both the sleeve and cuff AND a foam padded insert that doubles as a make believe breast for now - at least it mimics the contour I tell myself. As to my her2neu status it was ugly. What am I saying - it IS +++ ugly. I am positive for both the hormones which I guess was a surprise to my med people. Stage two Grade 3 poorly differentiated fast dividing cells. Close margin vascular involvement starting to attach at the chest wall near the sternum. However all of the 15 nodes were negative another feature that surprised the surgeon. We did the sentienl node thing - NEVER again without pain meds!!! - but it didn't work so he did the underarm dissection too. It took SEVEN WEEKS before the drain could come out after the mastectomy because of the fluid production which continued for several more weeks and therfore I had to be aspirated repeatedly for comfort (yeah right). We had to make a move on the drain thing at that point so I had some time to heal from it before going into the chemo; otherwise it would have been an open wound for months... So after a monster number of tests and biopsies including to my liver under a CT scan I got into the trial.
What I can say is it is simple and noninvasive unlike other procedures and treatments taking this Herceptin. I tolerate it well. Conversely I did not like the Taxotere at all. I have numb toes and I had wicked aches with that stuff. I have serious thoughts over the heart thing and for the record my MUGA steadfastedly yields a 65% number. They tell me that is great but now that I know someone else had a 75% that makes me ponder... My Herceptin regime is every three weeks through Austust " ""04. After I get over the radiation damage" assuming I do of course I plan to have a robust life similar to my past life but different. For one thing " I am already on the ""recurrence trail" " by which I mean, because of my stats, every unusual or new event has to measured for metastasis. For instance, going to the eye dr innocently to renew my prescription spawned another visit to the guy upstairs to assure the unusual formations in the back of my eye were not more cancer in a vascular region known for this type of potential outcome. (What a mouthful - sorry...) The scar tissue/fluid swelling had to be assessed because the changes are NEW. Rather than freak about it, I am trying to roll with the punches and accept that they will be doing this to me more than I really care to participate - BUT it is for my own good. There, don't I sound rational and sane? Last month during radiation I contemplated the final solution, so, you see, the sanity thing comes and it goes....
Through all of this, I have continued to work, although, a lot of it has been while resting at home.
I am interested in learning how others in this experiment fare. I am willing to share some of my stuff, if people are interested in hearing about it.
Dee
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