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Old 10-12-2011, 07:06 AM   #1
krisvell
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Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
Re: Anybody heard from Krisvell?

Hi,
I haven't been logging in as often; still around and kicking. Have been dealing with radiation necrosis from the gamma knife. They said there was a 1% chance of getting it and don't you know I am the unlucky one. After trying a month on Decatron and symptoms getting worse (severe left side and right face nerve damage), my neuro oncologist tried AVASTIN and the last MRI showed the necrosis shrunk by 80%. Symptons haven't gotten any worse. Insurance initially denied the treatment as it's not standard of care. Glad I tried it.
So those of you with necrosis, consider AVASTIN!
Ellie: thanks for asking about me.
Love,
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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Old 10-14-2011, 04:13 PM   #2
Dianedack
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Join Date: Oct 2010
Location: Perth Australia
Posts: 45
Re: Anybody heard from Krisvell?

Krisvell I am suffering gamma knife necrosis affecting my right side I was interested in Avastin but hear there is risks of brain bleed so I am a bit scared to try it how are you doing on it? The disablement caused by the necrosis is getting me down.

Love
Diane
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adenocarcinoma ductal grade 3 DX Oct 2001 2mm grade111. Level one two out of four lymph nodes positive. ER strongly positive PR strongly positive HER2 staus not known. Chemo FEC six courses Radiotherapy course. Arimidex 5 years. Recurrence April 09 Liver, Lungs & Bones May 09 Liver Biopsy ER status changed to negative PR status changed to negative. HER2 now+++May09 Docetaxol 6 cycles Herceptin and Zometa added.Disease stable for 17 months Scans Jan 2011 one of the tumours in right lung has grown significantly scan due in April 2011 to check lung tumour. Current treatment Herceptin & Zometa February 2011 unwell so hospital. DX inoperable Brain mass 11x8mmx12mm left of midline. from lungs and heart March 2011 Gamma knife treatment to brain met.March2011Tykerb/Xeloda/Zometa
March 2011 Severe allergic reation to Tykerb July 2011 New met in lymph glandineck.July2011Navaline/Herceptin/Zometa
August 2011 Necrosis in brain
Herceptin/Zometa Oct 2011 considering Avastin for Necrosis
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