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Old 12-31-2006, 02:40 PM   #4
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Wink Heart risks ...

... of both chemos and Herceptin are normally given as part of a written information packet - which everyone should be given when starting treatment. This is whether they are going to consent to participate in a clinical trial or are going onto a "standard therapy" treatment plan.
I realize sometimes we are so shellshocked we do not know to ask for these things, but is like any over the counter drug or supplement - don't we always read about them and save the package insert for a while?

I recall in the early days of the Herceptin trials some of the ladies reported their oncs being almost overcautious with the heart monitoring. Sort of freaked out the patients as they did not know any long term Herceptin users until they found this board. The docs did not have much experience with the drug either, nor the nurses, who are usually good at letting us know what to expect.

So, Hopeful, am wondering if you feel adequately informed??

Any new test takes a while to make it out of the research and into general use. Often we who take the time to zero in on research for our particular problem/question know about these things before our treatment team.

By all means we would love to have this information and maybe Joe can be in touch with this company and find out more particulars as may have meaning to those of us on treatment. As a now five-year user of Herceptin, this test is of interest to me.

Wishing a Heart Healthy New Year to Everyone!
__________________
"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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