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Dec 3, 2011 10:29PM suz45 wrote:
Hi, Im also BRCA1, I first found out I had breast cancer in August 2007 and didn't find out I was BRCA1 until after I had had a lumpectomy with 21 nodes removed and had almost finished my AC/T chemo & rads. I immediately had an oopherectomy and was told they would watch me carefully (hmmm) a year later I found a large lump in my other breast . It was a cluster of fast growing tumors so I went straight into another chemo Docetaxol, radiation then a bi-lateral MX.
Oct, 2010 we found I had bone mets to my right 6th posterior rib and I started on Clodronate for it.. its worked well for the bone cancer but again I found a lump at the base of my throat. It was a cluster of cancer in my nodes.
I asked about parp inhibitors but my oncologist didn't think they would work well for me (something about the trial results were not as good as first hoped on triple neg for my type of mets) so I went on another trial drug Foretinib. I was on it for 2 1/2 months and it wasn't working as my next scan showed widespread Lymphadenopadhy throughout the trunk of my body including 2 attached to the pleural lining on the right side.
I took a break and went on vacation for a week in Sept this year knowing I was starting to have issues with fluid buildup under the left lung, I was planning on starting a new chemo as soon as I got back. By the time I got back I was having breathing problems and they found that I had a litre of fluid in my right pleural. They drained it manually the first time but within 2 weeks it was back so I had to have surgery to install a pleura X drain. Nurses come in to my home to drain it via vacuum bottles, as well as clean, change & pad the waterproof dressings twice a week.
I'm currently still taking the clodranate (for the bones) and have started the oral chemo capecitabine. Its 4 pills twice a day for two weeks then one week off. I'm on my 4th cycle of it and find it extremely tolerable. I have my first CT scan on Dec 21.. I'm just guessing but I think this chemo is working. My tumor markers have come down and I'm almost sure the tumors in my neck are smaller! I used to be able to actually see the lump and now I have to feel for it :)
If for some reason I go off this chemo they have another one lined up for me, but its an IV drug (cant remember the name of it). I was actually given a choice of this or the oral one with the intention of utilizing the other once I finished with the first. I chose the oral chemo as it seemed like the side effects were easier and I wasn't into the whole IV thing all over again.
That's my ride so far. Hugs Suz
Laugh your heart out, dance in the rain, cherish the memories & ignore the pain, love and learn, forget & forgive. Remember you only have one life to Live.Dx 11/25/2010, IDC, 6cm+, Stage IV, 8/23 nodes, mets, ER-/PR-, HER2-