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Old 10-23-2006, 04:24 AM   #1
Kimberly Lewis
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Wink Medical Records - How much is enough/too much?

I have been wondering about getting all my records from each provider... It seems like a good idea to have but I am sure there are a bunch of wasted papers in there. I have major scans, Pathology reports, muga's, but wonder if I am falling short on this. What do you guys think, what have you needed or felt neccessary. Is it best to be thorough in case it is needed for clinical trials or somthing else?
thanks all,
Kim
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Old 10-23-2006, 04:56 AM   #2
Shell
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Kim-

I get them, as I usually get a second opionion when I get a reoccurrence, or when I change chemos - I was also in a clinical trial, and needed it for them...

Regards,
Shell
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Old 10-23-2006, 03:38 PM   #3
tousled1
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Kim,

I have all copies of lab work, scans, etc. The only thing I don't have are the doctor's notes. I think it would probably be a good idea to get as much as possible. Most providers charge a fee for your records -- at least they did in VA. When I moved from VA to GA last year I went to each of my providers and got my complete medical file from each. Most of them charged per page and I think there was one provider that just charged a set fee. I feel it was worth it. Who ever knew that I'd be diagnosed with cancer! I sure was glad I had all my medical records.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 10-24-2006, 04:42 AM   #4
IRENE FROM TAMPA
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Smile Hi Kim

I ALWAYS get copies of my lab work & scans each time. I have records going back to 1996 which I have used for comparisons. You are correct, there is an awful lot of paperwork if you ask for everything. Your doctors office/hospital can always give you copies if you need them. I just asked for copies going back several years when I entered the Tykerb study. I did read them but it is a lot of paper.

I would however, ask for your blood work & scan reports to keep on hand.

Take care
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1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
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