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Old 01-23-2005, 02:56 PM   #1
michelemd
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Hi!

I am glad to hear there are now 18 CyberKnife locations!! They can use CyberKnife on not just brain but neck, lung, and there are trials on pancreatic cancer as well. Its made by Accuray.

The photo below, if it works, is the mask they make custom for you to hold you down (arggh).

FYI -- I guess I have come to the end of line on drugs you can use with Herceptin without taking me off Herceptin -- so my doctor has referred me to Hopkins -- I have to get in the que. She does not think the breasts/neck are getting worse, and it make take time, but she could see I am very anxious.

I wanted a second opinion, but this is still scary.

I am thinking of all you -- hoping all your drugs work fast enough!!

Take care!!

Michele in MD
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Old 01-23-2005, 03:52 PM   #2
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
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Michele -
Thanks for the photo!
Guess whichever way - Gamma or Cyber - they have to take control of our head away!

But this looks easier from the standpoint of not having to put on the headframe and not having to numb up the skull, which mine is STILL thawing in the back. Nurse said that is normal and I have no aches or pains as the anesthetic wears off.

I wonder what your med onc thinks they have at Hopkins that is for you?? Have you any idea of a trial or something that may work?? Have you checked in their reasearch area??
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Old 01-23-2005, 04:47 PM   #3
*_judiek_*
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Hi Michelle,

I go to hopkins...if you wish, send me a private email. (whose your DR) Best of luck to you...I'm in Columbia...moving into our home on Feb 2nd.

jla1994@hotmail.com

Warmly,

judiek

History

Discovered lump Sept. 2002 (mammo didn’t pick it up)
Dx Oct 2002-just turned 41
IDC and pagets disease, stage 2B, grade 3/3, nottingham scale 9/9
3cm, lumpectomy,clean margins
er/pr-pos, her2 neg, 2/25 nodes w/cancer
Nov 2002-March 2003-FEC (5fu, epirubicin, cytoxen)
March 2003- started tamoxifen
May 2003- finished rads (33tx)
June 2003-CT/PET Scan- clear
Started 3 month check ups w/lab
Dec 2003-complete hysterectomy
Jan 2004-extensive mets, both lungs & liver(labs normal)
Jan -stopped tamoxifen
Feb CEA-23 (0-3 normal) CA27.29-66.1 (0-38 normal)
Feb 23to current-clinical trial, taxol & avastin
April 15th, -CT-significant shrinkage on all tumors/plueral effusion gone
June 8th -CT-all liver lesions decreased in size/lung mets gone
Aug 9th, -CA27.29 is 22.3, CEA is .8)
Aug 9th, 2004-Brain-CT neg, lung mets/pleural effusion still gone, liver mets had slight shrinkage. Largest hypodesne lesion is 2.1cm, 6 others 1cm or less.
Sept 13th-bone scan negative, mri revealed herniated disc.
Sept 27- Ct of brain, negative/lung mets still gone/ 2 liver lesions gone, 4 under 1cm, 1 @1.7cm.
Nov 29-CT shows stable, lungs still clear, liver tumors stable
Jan 11, 2005-CA27.29 23 / CEA 2.9
Jan 18th, Ct shows disease is still stable
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Old 01-23-2005, 06:23 PM   #4
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Steph: I had my gamma knife, Dec. 8 and still am a little numb in the back.
Mickey
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Old 01-25-2005, 06:34 PM   #5
michelemd
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Thanks for feedback.

I am just waiting to be called back with an appointment at Hopkins -- there is quite a que.

Don't know if they will have anything for me, but frankly I think I would like to explore surgery/radiaiton before clinical trials unless i can find a good one here.

Michele in MD
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