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Apr 5, 2014 04:37AM
Janlee5802, I was diagnosed with bone mets only in May 2012 and was put on Aromasin. My tumour markers were going up every month by about 50 until November 2012 when they were around the 500 mark and I was complaining of shortness of breath in ER. Diagnosis immediately was Pleural effusion and I stayed in hospital for 11 days having my lung drained, and of course they did a lot of tests as well. I was also complaining of headaches. CT scan showed mets to bones, liver and lungs as well as brain. MRI to brain, showed 3 different types of mets in the lining of the brain and in different areas of the skull, one of them was in the meninges in the right temporal area. I had never heard of LM before neither, and I was then told of poor prognosis. I went off the Aromasin and straight onto Xeloda. Tumour markers still kept going up for the first 6 weeks (blood tests every 3 weeks) and then they started to go down slowly. The next 6 to 12 months were pretty weird, as I was aware that I could not plan for anything anymore, and this might be my last Mothers Day, Birthday, Christmas as well as celebrating my family's birthdays.
There are now drugs that cross the blood brain barrier, and they have not been around for that long, so the prognosis is getting better. Being ER+ and PR+ gives us a better chance as well.
Have you checked out the Brain Mets Thread as well? How was it diagnosed? Did you have any symptoms?
I hope that you stay strong through this and I know that it is very hard for the family, but give them the positive details and do not look at the research details on the internet as they are outdated and we have newer drugs that are becoming more effective in tackling LM. Like I said, before that up until a few years ago, no drugs were around that crossed the blood brain barrier, but there are now.
"Don't give in to the disease" Dr Phil McGraw
12/13/2006, IBC, 3cm, Stage IIIB, Grade 2, 11/22 nodes, ER+/PR+, HER2-
12/28/2006 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
5/20/2007 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right
11/17/2012, IBC, Right, 3cm, Stage IV, metastasized to brain/bone/liver/lungs, Grade 2, 11/22 nodes, ER+/PR+, HER2-
11/27/2012 Xeloda (capecitabine)