| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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06-07-2007, 04:11 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Update on Tykerb/Avastin - Good scan
Hello friends,
I just had my 6 week scan (Pet/CT) and the results are NO new little nasties and the 2 lesions in my liver are EXACTLY stable. Dr. Rugo called that a "GOOD SCAN" and although I would have loved to have had it all miraculously disappear, I am happy to say it looks like the Tykerb/Avastin has the CANCER STOPPED DEAD IN IT'S TRACKS!
Considering that it is not chemo, Dr. Rugo said she thought it was early to expect shrinkage as the lesions have a structure of their own. As a very wise person once told me, if your oncologist is happy, you should be happy! So I will continue on the trial, next scans will be in another 6 weeks. I'll be hoping for even better news then.
For those interested in side effects, I pretty much sat there saying, "nope, nope, nope..." to the list of various symptoms attributable to these agents. This combination is very tolerable.
I have a pattern of, well, needing to be near a bathroom 1.25 hours after taking the Tykerb, but then that's it usually. Lucky for me there's a nice rest stop in exactly the right location on my 1 1/2 hour drive to UCSF!
The pimply rash I had at first is no more, and the main concern now is to watch my blood pressure, as Avastin can elevate this. I monitor it daily (ok, sometimes I obsess and monitor it every 10 minutes) and so far it is not in the danger zone although it does spike in the am. Who knows, maybe it always did this!
One more thing, as I told you earlier, I was number 6 of 6 in this trial at UCSF, but they have now been approved for 15 - so come on in, the water's fine!
Much love
Chris
__________________
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
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06-07-2007, 07:17 PM
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#2
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Chrissy,
I'm so happy for you. What wonderful news.
Hugs from me to you,
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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06-07-2007, 07:59 PM
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#3
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Chrisy,
That is great news. We LOVE good scans and answers of nope, nope, and nope to side effects. No more pimples? Who knew we would have pimples again?...more good news.
What will you do to celebrate?
Thanks for sharing your good news!
Carolyn
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06-07-2007, 08:40 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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I've really got to learn how to celebrate better!
Carolyn - oooh. You've just exposed how lame and uninteresting my life is LOL!
I guess the celebration has already started - first I celebrated by going up to get my Avastin infusion - since I can still be in the trial! I was lucky enough to be sitting next to a great lady who I have met before, she is a mets fighter turned inspirational speaker and "Oncological Celebrity" - her daughter gave her business cards that say that. She is a force of nature - I wish I could hang out with her and have some of that rub off on me!
Then I went back to work, came home and made dinner, and made EXCITING plans for the weekend which include planting late tomatoes and painting the house.
Like I said, I think my celebration rituals need some work - thanks for the inspiration!
When all else fails, sitting with my hubby having a nice glass of wine (as I'm doing right now!) will do in a pinch! And will get the creative-celebration juices flowing!
Take care
Chris
__________________
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
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06-08-2007, 07:24 AM
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#5
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Senior Member
Join Date: Mar 2006
Location: IOWA
Posts: 243
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Chrissy -Great news! I'm glad the combo is working for you, Best of luck in keeping your bp down.
__________________
Andi
-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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06-08-2007, 07:30 AM
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#6
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Way to Go, Chris!
And I'm believing that a remarkable celebration idea will pop into your head!
You deserve a big hooray!
mary anne
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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06-08-2007, 07:33 AM
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#7
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Great News Chrissy
I Am So Happy For You My Friend. This Gives Great Inspiration To The Rest Of Us. I Am Myself Looking At That Combo Should I Start Failing On The Tykerb/xeloda Combo.
I Am Happy To Hear That You Are Not Having Any Bad Side Effects. I Was Worried About The Avastin Side Effects And I Guess You Get To Keep Your Hair With That One Huh?
You Take Care And Keep Up The Good Work. Keep Me Posted Please. I Will Be Rescanned The End Of June And We Will See What Is Happening Inside.
Heh And I Say, Celebrating Is Doing What Makes You Happy And Planting Tomatoes And Gardening Is A Joy Of Mine Also.
Have A Great Day
__________________
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."
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06-08-2007, 07:56 AM
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#8
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Hi Chrisy,
Okay, I am right with you. I LOVE my tomato plan and pulling weeds. I work on both whether I am sad or happy. Notice I say tomato plant - I only can get one to live. I am not much for "special" celebrations although I will tell you that when my Tykerb arrived I set up a shrine with candles and prayed around it - nutty huh?
I hope that you have a great weekend and enjoy your painting, planting and good wine with you husband!
Love, hope, and peace,
Carolyn
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06-08-2007, 09:05 AM
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#9
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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thank you for the update
STOPPED DEAD IN THE TRACKS is good! It is the step before RETREAT! I'm happy to hear the news and will continue to hope for no side effects but hard core EFFECTS. I appreciated what you shared about the fact that these are not chemo drugs and therefore the process is different. It is a good sign, too, I think that the approval came for 15 in the study.
You know what I else I hope for, Chrisy, big, juicy, deliciousy tomatoes!
Keep up the great work!
__________________
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
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06-08-2007, 10:34 AM
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#10
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Tykerb/Avastin
Dear Chrisy:Congrats! I'm looking at that combo myself but not until I become 100% resistant to Herceptin. I'm happy for you.
Sending you positive vibes and a Big HUG, now go and do something fun!!!!
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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06-08-2007, 06:03 PM
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#11
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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"THE CANCER STOPPED DEAD IN IT'S TRACKS"!!! Music to my ears, Chris, you keep it up!
<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.
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06-08-2007, 06:06 PM
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#12
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Chrisy,
That's great news! Sure is encouraging news for all the other women who are or may need to use this combo.
__________________
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
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