Here's a little help ...
Dear Irene -
What wonderful news! Helps make my day. Your post ended up under the Clinical Trials area, which is also appropriate. You have a few anwers there, but thought I would do a copy and paste here of your happy message.
"Well I just came back from seeing my onc. for my results to my scan.
Come August will make 1 YEAR since I began on the trial. This was my first time waiting 3 months before being rescanned. From the 2 tumors which I started out with last year, one has disappeared and the remaining one although still there, remains about the same size as my last Pet Scan 3 months ago. This is good news for me since I generally last about 7-8 months on a drug before progressing.
My CEA did elevate a bit (it's at 4.8) and my 27-29 at 45 (about the same as last one) We are a bit concerned with my CEA going up some since I am very sensitive to this marker, but my onc. is considering me STABLE and we will recheck markers again in a few weeks and then again in 6 weeks. I have a feeling that this tumor might want to start becoming "active" again but time will tell and meantime I am not too disappointed -
GONE would have been great but nothing was found anywhere else which is great.
In the event that I start having progression again, my onc's office will be beginning a NEW TRIAL which should be coming their way in about a month or so through GENETECH. I will have that as a backup plan.
They were not permitted to give me much info on it as yet but it involves HERCEPTIN which has the chemo build right into it. THIS IS VERY INCOURAGING.
So all in all, not a bad visit. I just wanted to let everyone know that this combo has done well by me and gotten me another year....
I pray that it does as well for those of you on it or looking to start. There is much out there in the future that will be coming our way ladies so keep your hopes up and try to stay strong. We are pioneers making way for those to follow and I pray that much will be learned from our struggles.
Keep the faith and take care."
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Irene from Tampa
1996 - DIAG. WITH INFILTRATING DUCTAL CARCINOMA
WITH LYMPH NODE INVOLVEMENT.
TREATMENT: AFC
1999 - RECURRENCE TO AUXILA AND TWO TUMORS IN LIVER.
TREATMENT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECURRENCE TO LIVER
TREATMENT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER.
TREATMENT: RADIO FREQUENCY ABALATION TO LIVER.
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREATMENT: LIVER RESECTION HALF OF LIVER.
2005 - RECURRENCE TO LYMPH NODE OUTSIDE OF LIVER.
TREATMENT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESSION WITH SECOND TUMOR GROWTH.
TREATMENT: AUGUST BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
"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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"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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