 |
11-16-2006, 01:53 PM
|
#1
|
|
Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
|
Some (more) GOOD news for a change!
In reference to my cerebral/spinal fluid leak probems. It is 5 weeks today that I had my surgery (cranioplasty with lumbar drain) on the back of my head to repair this leak. My scalp on the upper left side is still VERY sensitive and causing me to still need pain pills to keep the nerve pain dulled.
The best part is that my neurosurgeon was very encouraging about the progress so far and indicated that the CT scan showed only a small amount of fluid in the surgery area, which could be part of the healing process and not indicative that the leak is still unrepaired.
The neuro said I can now go back to my fitness club and do limited lower body and cardio workouts. YAY! He thought getting more exercise may actually help the healing in my scalp.
I also had a bone scan this week, which has been three years since the last one. My onc's nurse just called with good results on that. All normal, and no sign of any mets.
In early Dec. I followup with the rad onc who keeps track of the (former) mets in my brain, and expect good news there. (Now that I am on a roll here!) I have one small area that is enhancing, but stable from prior Gamma Knife, that is being followed.
So, now the emphasis is on my teeth. Had to have a gold crown put on and two fillings. Next (and last, I hope) is what will probably end up being a root canal. All this with almost NO sugar in my diet! So, ladies, do not forget, with all these medical appointments, to keep up with your dentistry!
__________________
"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.
Last edited by StephN; 11-16-2006 at 01:56 PM..
Reason: Boo boos.
|
|
|
|
11-16-2006, 02:05 PM
|
#2
|
|
Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
|
Yes Yes Yes
You're lookin' better and better from here, Steph! I'm so happy to hear the good news. I know it has been a tough 5 weeks. Thanks for letting us know.
GRIN
AlaskaAngel, in cloudy California
|
|
|
|
|
11-16-2006, 04:36 PM
|
#3
|
|
Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
|
Great news Steph. I always have you on my mind.
Kind regards
Becky
|
|
|
|
|
11-16-2006, 04:56 PM
|
#4
|
|
Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
|
Steph,
This is the best news I have heard all day. I think it is great that you can begin to exercise again.
Barbara H.
|
|
|
|
|
11-16-2006, 05:08 PM
|
#5
|
|
Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
|
Hey Steph, That's great! Now that you're able to start back into your regular routine I know you'll really feel that you're back to normal. And you're so right about the dentistry, I have been playing "catch-up" lately myself. Best to stay one step ahead of these things if we can!
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
|
|
|
|
|
11-16-2006, 05:30 PM
|
#6
|
|
Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
|
so happy for you
You are amazing Steph-thank you for sharing your great news-enjoy it!
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
|
|
|
|
|
11-16-2006, 05:49 PM
|
#7
|
|
Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
|
great news steph!
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
|
|
|
|
|
11-16-2006, 05:53 PM
|
#8
|
|
Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
|
GOOD to hear GOOD news
So happy for you Steph...
It's always good to hear the good side of this. Once you can get back into your normal routine, I am sure you will feel much much better.
Take care
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"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."
|
|
|
|
|
11-16-2006, 06:02 PM
|
#9
|
|
Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
|
thanks for the update! It is good to her that things are going well!!!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
|
|
|
|
|
11-16-2006, 06:11 PM
|
#10
|
|
Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
|
Great news Steph! It's always encouraging when we hear good news.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
|
|
|
|
|
11-16-2006, 06:28 PM
|
#11
|
|
Senior Member
Join Date: Nov 2004
Location: Henderson, NE
Posts: 413
|
awesome Steph!! Are you going to San ANtonio? I thought you said No but am hoping you changed your mind!!!!
|
|
|
|
|
11-16-2006, 07:19 PM
|
#12
|
|
Senior Member
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
|
Dear StephI am so very happy for you! Keep the good news coming!
__________________
Love and Hope
Karen
IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
|
|
|
|
|
11-16-2006, 09:13 PM
|
#13
|
|
Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
|
Dear StephN,
Wonderful, wonderful! I too am thrilled to hear the good news!
Best Regards,marcia
|
|
|
|
|
11-16-2006, 10:48 PM
|
#14
|
|
Guest
|
Great news Steph! That is very encouraging.
|
|
|
|
|
11-17-2006, 01:03 AM
|
#15
|
|
Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
|
Wow Steph,
I haven't visited in awhile, so it was really great to hear your good news! I know getting to do your workouts again will get those old endorphins going and that in itself is such good therapy! Way to Go!!!
Kim in CA
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.
5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.
9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .
11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!
7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!
June -Dec 2004 UW Vaccine Trial.
7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.
Brain MRI @3 months NED!
2006-2011 brain/body still NED
8/04/11 Taking Herceptin break, will monitor with tumor markers.
6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.
7/23/12 CA15-3 now 49.3
Her2 Serum 26.8
8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49
11/7/12 Add weekly Taxotere for 4 cycles
2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.
November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!
Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara
Jan 2016 Begin Kadcyla
March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla
November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 06:00 AM.
|
Linear Mode
