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Brain Necrosis - No Add'l Treatment - Your thoughts
Hi all;
It's been a nerve wracking week for me. Last Monday, the latest MRI showed the tumor went back the original size. So the 75% reduction is now gone. Bummer! The Neurosurgeon thought it was necrosis but had me go for a head PET and MRI Spectropy (sp).
This came as a huge surprise as before I went with the Gamma Knife, the radiation oncologist said there was a 1% chance of getting necrosis and they were going to do the gamma knife in two session to minimize the risk. Especially being in the brain stem, I don't have a lot of room for extra stuff. So be it for statistics.
The neurosurgeon's nurse called me back and I got the better of the news (possibilities were re-growth or necrosis); they said it is necrosis. The PET scan was inconclusive but the MRI shows it's radiation effect.
So I am relieved a bit.
So I asked about taking something to make sure the necrosis stops and she said they don't give anything unless I get symptoms. That scares me. I'm kind of in a prevention mindset. I asked about Avastan and she said that I could get a bleed into the brain. Well that was scary to hear.
I also read about Boswella. Also, the hyperbaric chamber.
Should I get a neuro-oncologist? I have a medical oncologist that I really like a lot. She sent me to a neurologist but he just gives me a neurological exam the same that the neurosurgeon does.
I'm also thinking about going back to Memorial Sloan to the 2nd Opinion Oncologist that I saw in April.
So for now, I am not taking anything... Still in a watch and wait mode.
I would appreciate any thoughts you may have.
Kris........
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06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found
Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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