| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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12-15-2007, 04:44 PM
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#1
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Deceased
Join Date: Oct 2005
Location: Chadds Ford, Pa
Posts: 206
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My Good Run with T/X is over
Well, I knew it couldn't last forever but my 8 month love affair with Tykerb/Xeloda is history. My last scan was September and I only had two tiny liver mets on the radar screen. So I was hoping for a good scan in December but realized the average time to recurrence on this combo is about 8 months. My scans Friday were scary to say the least. Liver mets back and multiplied, lung mets showing up again and looking like some bone activity. I.m disappointed and a little scared. Have been feeling crappy for the last two weeks but thought it was the cumulative effects of the Xeloda. So I'm sure I'll get a call from the onc first thing Monday. Looks like it will be a chemo Christmas - how sucky is that?!
Can you ladies tell me what regimens you have gone onto after failing T/X? I'd like to be armed with some info before I meet with my onc.
Thanks,
__________________
Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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12-15-2007, 05:04 PM
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#2
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Donna, I'm sorry about the chemo Christmas. I'm in the same boat, but it's too early to say how my new triple combo is working.
However, it doesn't look like you've had Navelbine yet, and it's great in combo with Herceptin. Several ladies at my treatment center have had really good response to lung mets with this combo, and I know several on this board have used N/H for lung/liver mets. I had Navelbine with Herceptin 3 seperate times for lymph and skin mets, with very good results.
There's also Avastin, one of the three I'm on now. There is some uncertainty about insurance approval, but I think it will depend on your insurance. If your onc thinks it may be an option for you ask that his insurance liason get it preauthorized.
Hang in there, there is a new cocktail out there for you 
<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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12-15-2007, 05:29 PM
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#3
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Deceased
Join Date: Oct 2005
Location: Chadds Ford, Pa
Posts: 206
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Hi Lolly,
Thanks for your response. Avastin was certainly on my radar, and I know a few women here on the site besides yourself are on it. But I'm sure he's going to want a chemo so Navilbene may be an option.
Good luck with your journey. Wishing you the best.
__________________
Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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12-15-2007, 07:14 PM
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#4
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Donna, that is the pitts to even think about a chemo Christmas, but if that's what's needed, Navelbine and Herceptin was easy for me. I hope whatever you decide on will knock the socks off those mets. Just want you to know I'm thinking good thoughts for you! ma
__________________
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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12-16-2007, 07:41 AM
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#5
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Senior Member
Join Date: Sep 2006
Location: East Central Illinois
Posts: 89
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Donna, I am also thinking of you. I am on T/X right now, and hoping the honeymoon will last. I see my onco on Tues--always feel a little aprehensive about what he may suggest. Let us know what treatment you decide on--it will help all of us on Tykerb to make the decision about what is next. I hope you can relax and enjoy the holidays. Best wishes and keep your courage on the stickin post. Becca
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12-16-2007, 07:47 AM
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#6
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Donna, My heart goes out to you. So sorry the nasty buggars are back. I will be praying they find the right combo to bring you to NED.
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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12-16-2007, 07:53 AM
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#7
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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__________________
Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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12-16-2007, 08:42 AM
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#8
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Donna,
Sorry to hear about your progression. I'm on Taxol/Carboplatin/Herceptin for lung mets. My last scan showed some improvement. Side effect I'm having is severely dropping of counts. Right now I'm taking a break from chemo and will resume after the Holiday and my scan.
__________________
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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12-16-2007, 11:28 AM
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#9
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Senior Member
Join Date: Sep 2005
Posts: 556
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Donna,
Sorry to hear the news about progression. You can also try for Herceptin-MCC-DM1 trial or the Heat shock protien trial. Whatever you decide may your outcome be wonderful and keep you in remission.
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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12-16-2007, 01:39 PM
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#10
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Senior Member
Join Date: Apr 2006
Location: FLORIDA
Posts: 148
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I CAN RELATE. FOR THE LAST 9 MONTHS ALL I HAVE BEEN DOING WAS GETTING FASLODEX SHOT. I WENT FOR CT SCAN AND IT SHOWED ENLARGED LYMPH NODES. I GO BACK TO CHEMO THIS COMING TUESDAY. MY DOC IS STARTING ME ON A NEW DRUG CALLED IXABEPILONE (IXEMPRA). IF IT WORKS I WILL ALSO START TYKERB. I WILL PRAY YOU FIND A NEW COMBO THAT WORKS FOR YOU
__________________
SHEILA (45)
09/2005--BREAST CANCER/8 POS NODES --A/C, MASTECTOMY,TAXOTERE, RADS, TAMOXIFEN,HERCEPTIN
02/2007--B/C METS TO OVARIES--HYSTERECTOMY, FASLODEX
12/2007--ENLARGING LYMPH NODES IN ABDOMEN--IXEMPRA, THEN TYKERB
08/2008--COLON TUMOR--A/C AGAIN,
12/2008--ABDOMEN TUMOR--AVASTIN/NAVELBINE FEMARA
05/2009--MET TO SPINE (L2) RADS
CURRENT TREATMENT
07/2009- START ZOMETA MONTHLY, XELODA & ABRAXANE......SURVIVING THE BEST I CAN
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12-17-2007, 08:56 AM
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#11
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Deceased
Join Date: Oct 2005
Location: Chadds Ford, Pa
Posts: 206
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Hi All,
Thanks for your encouragement and information. You ladies are wonderful.
As far as the practical advice, I was on ixabipelone with carbo and herceptin for 6 months. It totally knocked those liver mets out and I was free and clear for 6 months - so I would highly recommend that combo to anyone out there with liver mets. Still waiting for the onc to return my call to see what he recommends. I will keep you all posted.
Just another curve ball.......
__________________
Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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12-17-2007, 06:40 PM
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#12
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Maybe ask your onc about Ixempra again... maybe with Xeloda. I will try to remember to look for info about it. Do some google searches and see what you can find. It is getting a lot of play right now. It's currently in trials with Xeloda.
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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12-17-2007, 10:00 PM
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#13
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Donna, that's a good suggestion to ask about adding Ixempra again. My onc has re-used successful chemo on me if it's been a year since I've had it. He feels if the chemo has worked and been stopped before resistance develops, and it's reused after enough time has elapsed, the cancer cells "forget" they've been exposed before and are dead ducks, lol. This theory worked well for me with Navelbine, we reused it 3 seperate times. It's worth a discussion with your onc if the Ixempra knocked the mets out last time.
<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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12-27-2007, 07:37 AM
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#14
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Deceased
Join Date: Oct 2005
Location: Chadds Ford, Pa
Posts: 206
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Hi All,
Well started on weekly Navilbene and back on Herceptin. The first treatment was last Wednesday and ROUGH!. I had intense back pain and horrible acid stomach. Thanks to a very wise nutritionist friend, I got the stomach issues under control saturday (but lost 6 lbs!). I am on constant Percoset for the back pain, but hopefully this will not be for too long of a time. Second treatment yesterday was much better. I'm not feeling too bad today.
Thanks for all your support, let's hope this does the trick.
__________________
Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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12-27-2007, 07:47 AM
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#15
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Senior Member
Join Date: Jun 2007
Location: Bergenfield, NJ
Posts: 121
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Hi Donna,
I'm also on a weekly Navalbine and back on Herceptin in October since Tykerb/Xeloda didn't work for me. I usually get the side effects (ie. nausea, abdominal pain, back pain) on the third day after the infusion. I'm also on Percocet for pain and Oxycontin. I'm praying that this new combo will work miracles for us. My love to you.
Lots of Love and Hugs,
Gemma
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12-27-2007, 08:04 AM
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#16
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Donna, I hope this last treatment continues to go more smoothly for you. And Gemma, I'm praying that you both have the remission that is needed for NED! This stuff just stinks! It's time for you both to have a good break and things work for you!
__________________
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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