Needing Help and my frustration and pain

[jones7676]

Hello/Help,

I have to tell you that it has been a nasty week. I went on Monday - they said they would start me on Ixabepilone (due to pet scan as mentioned before) but my odds of it working were only 10%. Typical labs etc. performed that day. Counts a little low but not out of treatment region.

I had a MRI the next day as I had a bad headache after it and a bit of a headache when there. And it was due in two weeks and was going to be done Friday as the surgeon was going to record an interview with me about it.

So I opted to wait until Thursday to start. The PA came in and said there was scar tissue growing again where they had previously done surgery and that one brain met was now 3 mm and the other 8.9 mm.

He asked me whether I wanted to continue chemo or quit as the chemo might kill me sooner....a somewhat truthful but also painful to say the least. I left and cried all day. He did not even offer the Herceptin or Tykerb as I had previously asked about as a possibility. He was nice enough to call me the Mohammed Ali fighter of those they have treated.....but....

I was disappointed as I had brought a list of meds on Monday I knew they were doing trials on etc. Not once did they mention that I might want to check into them somewhere else or discuss any of it with me. Only this one that they said would work 10% chance.

So, I have made an appointment in Chicago at Northwestern for the 16th or sooner if they have a cancellation that is one or more days away as it is a 7+ hour drive down for me to my daughters home (a good friend that works in cancer cell research suggested I go there as they did my original surgery etc and I have seen them from time to time and all notes go to my oncologist down there.

- and if they don't have anything to offer different I'm going to try and get an appointment at M D Anderson (right?) in Houston and my brother will fly me down. Apparently he has a friend that was sent home with only 2 weeks to live with breast cancer all over her including the liver (but not the brain) and she went there and is doing well.

Any better information or knowledge that might help me would be greatly appreciated....is there somewhere better to go? etc.

I'm having a hard time being my usual positive and research self and I think I'm in dire need of help - I know this may be it, but would like to give it my best effort.

Sorry this is so long! It was hard to pick the right icon too!