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Old 12-31-2006, 10:36 AM   #1
Heart Sutra
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Join Date: Nov 2006
Location: The Hudson Valley, New York
Posts: 124
Skeptic's Toolkit

http://www-static.cc.gatech.edu/~idr...ld_Excerpt.htm

This is a valuable way to measure information. Included in this link are several examples of how to interpret information, and the ways in which faulty information is conveyed as believable.

Scroll the page for a Skeptic's Toolkit and scroll farther for the Fallacy Detection Toolkit, found originally in Carl Sagan's "Demon Haunted World." An excellent book on scientific thought and the application of skepticism.

As you've all heard me complain about, there is a plethora of bad information, false claims, and outright quackery that is encountered when researching cancer. This is so unfortunate because it distracts from the legitimate and valuable information out there, and I've found the quackery easier to find than the scientifically valid sources. The harm this causes is mostly undue stress and worry, besides being a tremendous time-waster. If the bad advice is actually believed, the harm is much greater.

Always check your sources!

This support group has been wonderful to us for the invaluable way all of you are so willing to share your personal experiences, and the knowledge base you have all shared with us. Your experiences have helped us prepare over and oover, and we are so grateful to you all.

I wanted to add this link to assist us in sorting through the overwhelming amount of info. out there. It's preaching to the choir, since all of you are very savvy and knowledgable, but it's a handy way to check validity of statements and research, and will be useful in other areas of life too.

Obviously too much time on my hands...
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---Kevin and Sue---

Dx'd 10/06 IDC grade III/III
Er- pr- HER2 3+
MRM right breast 12/5/06
nodes negative
same day reconstruction started
(implants)
Stage II (2.2 cm tumor)
fairly extensive DCIS
Ct and Bone scans clean
Port placement 12/26/06
AC (4 cycles DD)to begin 1/2/07
Taxol/Taxotere (4 cycles DD)
Herceptin for one year

"There is no distinction between the one who gives, the one who receives, and the gift itself."- Hahn
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Old 12-31-2006, 12:57 PM   #2
Audrey
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Posts: 212
Thanks for sharing that link, Kevin & Sue. Looks like some valuable tools to add to the toolbox. Hope you both have a Happy New Year and good luck with the chemo tomorrow, Sue! (I have to agree with what others have posted, I was so nervous and dreading the chemo and then after I got my first treatment I felt okay and just waited and waited for nausea to hit me, but it never really did--drink lots of water before and after and take your anti-nausea meds on schedule to prevent any symptoms). Those oncology nurses are the best at making sure you're comfortable--bringing ginger ale, crackers, blankets--whatever you need. Let us know how it goes-
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Audrey

diagnosed July 2001, at age 36
large tumor, 11+ nodes
Stage IIIb, er/pr-, Her2+
treated with A/C, weekly Taxol
radiation, + year of Herceptin
on clinical trial. double mastectomy
followed by reconstruction
NED!!
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Old 12-31-2006, 02:57 PM   #3
StephN
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Location: Misty woods of WA State
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Wink One tip

1. Sue, when you are getting your adriamycin (otherwise known as "big red" or the "red devil" because it is a reddish solution), eat ice chips or suck on a popsicle. This really helped me with getting fewer mouth sores. You will be getting a larger 3-week dose (I had 12 weekly, which as pretty tolerable), and could have a bout with the mouth sores.

I am sure you know about some other agents to rinse with, and to keep any possibility of infection down. Many of us switched to Biotene brand toothpaste and mouth wash.

2. About the internet and its pitfalls for cancer patients. This is precisely the reason my med onc warned me to stay off the internet, but that was in 2000 prior to some of these really good web sites being created. I actually learned of this one in its infancy from a colleague of my med onc who met Chis and Joe at the first San Antonio symposium they attended. She was more than willing to recommend and support a site like this for HER2 positive patients. I was already stage IV by that time.

Imagine having to wade through a diagnosis on your own. Fortunately I was given three very good books to get me started, including the first edition of Dr. Susan Love's "breast cancer bible."
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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