HER2 Support Group Forums - View Single Post - My story...(hope its in the right forum)!

StephN · 11-03-2006, 12:23 PM

Hi Marcia -

I took a moment to read the story of your treatment and see the photos. That is a good photojournalist, by the way.

You may want to put this in the Profiles in Courage area of this site.

When Katrina hit last year we lost track of a few members from the New Orleans and coastal areas. I recall you saying you had to go to Florida to continue your treatment. Glad to know that you have resettled back in Mississippi, and getting on with your life.

Just one question. Why did the port come out so quickly the first time?? Seems like it was rushed when there were some other considerations in the offing.
I know Herceptin was a new drug, but if that was on the table, it would be better to not have another surgery.

Sure hope the problems with the joints gets better. Mine finally did, but it took a while. I don't have the joint pains on Herceptin only, and that IS a blessing as I am a "lifer" with Herceptin.

"May the FORCE be with you."

11-03-2006, 12:23 PM	#2
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Great photos Hi Marcia - I took a moment to read the story of your treatment and see the photos. That is a good photojournalist, by the way. You may want to put this in the Profiles in Courage area of this site. When Katrina hit last year we lost track of a few members from the New Orleans and coastal areas. I recall you saying you had to go to Florida to continue your treatment. Glad to know that you have resettled back in Mississippi, and getting on with your life. Just one question. Why did the port come out so quickly the first time?? Seems like it was rushed when there were some other considerations in the offing. I know Herceptin was a new drug, but if that was on the table, it would be better to not have another surgery. Sure hope the problems with the joints gets better. Mine finally did, but it took a while. I don't have the joint pains on Herceptin only, and that IS a blessing as I am a "lifer" with Herceptin. "May the FORCE be with you." __________________ "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.