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StephN · 08-03-2010, 09:43 PM

Sorry for your unwelcome phone call.
A call like that will send a person scurrying for the next treatment.

Here is some info from the Clinicaltrials.Gov web site:

Please refer to this study by its ClinicalTrials.gov identifier: NCT01120561

Contacts
Contact: Trial Information Support Line888-662-6728

This is the same phone number that Elaine kindly posted, but this also has the identifier number.

Just tell them you want to contact the Cedar Rapids location to get the ball rolling. Their number was not on the site where I looked.

Brenda does have a good suggestion. And I am wondering if the TM is picking up a lot of dead cell material, since the scan was basically stable. That happened to me, but I did not have a number that high.

08-03-2010, 09:43 PM	#12
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Re: Trying not to panic Sorry for your unwelcome phone call. A call like that will send a person scurrying for the next treatment. Here is some info from the Clinicaltrials.Gov web site: Please refer to this study by its ClinicalTrials.gov identifier: NCT01120561 Contacts Contact: Trial Information Support Line888-662-6728 This is the same phone number that Elaine kindly posted, but this also has the identifier number. Just tell them you want to contact the Cedar Rapids location to get the ball rolling. Their number was not on the site where I looked. Brenda does have a good suggestion. And I am wondering if the TM is picking up a lot of dead cell material, since the scan was basically stable. That happened to me, but I did not have a number that high. __________________ "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.