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Old 04-19-2013, 10:40 AM   #1
KsGal
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Join Date: Dec 2011
Posts: 585
Scans and update-

Well, I had all my testing done this last week with a MUGA, a CT scan of the chest/abdomen/pelvis and an MRI of the brain. My body is still clear, and my MUGA was still good, praise God.
My brain MRI showed I have two tumors left out of the original five, and they are about half the size. I was pretty happy with these results in general, because they are definitely towards the positive rather than the negative, but my radiation oncologist made comments that were so depressing I ended up feeling like there is no hope for a few days. He would say things in conversation like...once it spreads to the brain it, unfortunately, starts you down a path you just can't change...or....brain mets patient usually within a year, if they live that long, have a major recurrence, and a comment about how poor my prognosis was. And I know all the discussions we have had about doctors not knowing how long a patient has, and everyone is different in how they respond to things, and that there are several people here who have/had brain mets that have done very well, but its still very difficult to have that positive attitude you need to have when it feels like the doctor has already given up on you. I read Joanne's post, and saw that one of her doctors was also the same way. I could really identify with how she feels.
They also said that I have demyelinazation that is worsening, and appears on the MRI to look like multiple sclerosis, but they are sure it is from the whole brain radiation, and that I will have worsening difficulties with short term memory and cognitive abilities. Ugh.
So even though my results were positive (I feel like) I have been in a depression/funk for the last few days, and I think I need to go on an antidepressant on top of everything else, unless someone can recommend a good way to treat depression naturally?
My oncologist wants to start me on Tykerb next week, along with my herceptin, which seems to be doing a good job holding my body NED. Im a little stressed and worried, because I have not really recovered from my whole brain radiation and the steroid nightmare. Im just so weak and get tired really easy...sleep a lot. Im never hungry and Im nauseated a lot..so I don't eat much. I've lost almost 20 pounds in the last two months, so I worry about a drug that causes so many GI side effects.
I really didn't mean to get on here and whine...I meant to just update everyone, and I apologize. I guess I started typing and everything just came out. At any rate, they are checking with my insurance for pre-approval today, and to see what my copay might be for Tykerb. They said my copay might be as high as 2000 a month! which is more than I make on disability, so looking into programs that might help.
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Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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