| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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06-20-2007, 09:05 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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Michelle, I was on Tykerb, Xeloda and Herceptin for the first 6 weeks I was on Tykerb. I had been on Herceptin for 3 1/2 years. After we got the initial results of my CA 27-29, which plummeted down from 390 to 90, my onc decided to drop the Herceptin.
His thinking was that it would be easier on my heart that way. I was hesitant to drop the herceptin, but decided to see what happened. So far the Tykerb/Xeloda combination is still working great.
Thanks Odette and everyone! I had tears of joy and happiness when I got off the phone this evening. I love the fact that Cedars does not make me wait for results, but gets me the MRI results within hours of the test.
We're all thinking it's the Tykerb making the difference. The neurosurgeon was recommending WBR in March in addition to the Gamma Knife and fractionated rads, because I had 2 new lesions show up within a month of each other, but I advocated for giving the Tykerb a chance. I'm so glad I did!!!
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06-21-2007, 07:58 AM
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#2
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Senior Member
Join Date: May 2007
Location: Northern Michigan
Posts: 68
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I'm doing the happy dance for you!
Esther,
My doc took me off of Herceptin before starting Tykerb/Xeloda. He said all three had too many side effects. I'm guessing the heart thing was his big concern. I was hoping to stay on the Herceptin even though it only worked on the lymph nodes in the chest, it gave me back my voice and took away the cough. Hopefully the Tykerb/ Xeloda will work on everything.
Again, I'm so happy for you on your report!
Hugs
Michelle
Adriana, I sent you a privite message, nothing too private, just don't want to take away from Esther's thunder.
__________________
Sept. 2003- 5cm tumor in left breast Her2+ Er- Pr- grade 3,
Mastectomy & 11 nodes removed, all negative.
4 rounds A/C + 12 wky Taxol
25 rads
Dec 2006- recurrence Stage IV (diagnosed 3 days before Christmas!) Lymph nodes in chest, liver, 3 ribs
January 2007- 3 tri wkly rounds of Taxol/Herceptin
Response to lymph nodes in chest, but several more bone mets (skull, shoulders, more ribs, femur, several on spine), liver tumors still growing.
March 2007- 8 wkly rounds of Navelbine/Herceptin/ every 4th wk Zometa
Lymph nodes in chest look great, but more bone mets (of course!), Clavicles, hips, and sacrum (above tail bone) to add to the list. Liver mets still growing.
June 5- started Tykerb/Xeloda
Aug 14- Scans are showing great progress! Tumor shrinkage and bones are healing!
Nov 21 CT scan shows tumor growth in liver & bones next Doc appt on 11-27
Dire need of a lot of prayers and a miracle.
Stay at home mom, 5 yr old girl & 8 yr old boy.
Wife of loving husband
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06-21-2007, 08:40 AM
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#3
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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grinning my head off
for you and your news!!! What a great phone call, what a great day for you and thank you for sharing all of this with us as it really, really helps!!!! You are awesome!
__________________
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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06-21-2007, 10:51 AM
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#4
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Senior Member
Join Date: Jun 2007
Posts: 37
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Ester---dance, sing and celebrate!!!I was nervous about opening your post, but what sensational news. You DO give us all hope so thanks for sharing. Love and prayers Kacey
__________________
dx 9-13-05 MRM (lt)on 9-19-05
IDC stage llb grade 2 3/24 nodes+
ER/PR- Her2+++
Groshong placed 10-13-05 and chemo started
TCH x6 and continue Herceptin for one year every 3 wks
Rads x 33 (at the end of chemo) finished 4-01-06
20 months NED
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06-21-2007, 12:45 PM
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#5
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Esther, I am beyond THRILLED for you! That is such exciting news. You couldn't possible ask for better results then that. I love hearing things like this because it gives us all so much hope and encouragment which you know we all need.
I don't know if the Tykerb helped...but it sure didn't hurt. lol Something worked rather well. I sure hope you were sitting down when that call came in...could of been dangerous if you were standing up. And since you live in Southern California NOW I know why the ground WAS rocking and rolling. At first I thought it was just a earthquake...but it was no doubt you jumping up and down dancing & singing. That explains that!  LOL Wooo Hooo...way to go girl.
Big Congratulations! This is truly something to CELEBRATE about. What are you waiting for...get going...you have places to go, people to see & LOTS of fun to be had.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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06-21-2007, 02:12 PM
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#6
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Wonderful news Esther! I advocated also to give Tykerb/Xeloda a chance before we did any type of radiation, especially WBR. We did my MRI 2 weeks ago (6 weeks after starting Ty/Xel) and there were NO NEW punctates, none of the existing spots we knew about had grown, and one of the 9mm spots (in the cerebellum) was less enhanced, indicating that maybe it is disolving away. So, we have decided that the Ty/Xel deserves more of a chance to see what it can do before we do any kind of rads, even targeted. We will scan again in 6 weeks. Yippee for Ty/Xel!!
__________________
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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06-21-2007, 06:53 PM
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#7
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Senior Member
Join Date: Jul 2006
Posts: 869
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Esther_ I share in your joy-wonderful news........take a few deep breathes then celebrate!! Ceesun Cathy
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06-21-2007, 10:11 PM
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#8
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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yeah!
This is great news. Thanks for sharing - you give so much hope to all. I wish I had met you for lunch - I live about 5 minutes from Cedars
Flori
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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06-27-2007, 06:12 AM
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#9
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Senior Member
Join Date: Dec 2005
Location: Illinois
Posts: 327
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Wow! Wow! Wow! Have a dance with Ned for me! :P
__________________
Jan04: Bilateral Mastectomy at age 28
Initial DX: Left Breast: IDC 2cm, Grade 3, HER2+3, 0 Nodes +, ER/PR-. Right Breast: Extensive DCIS ER-/PR+; Stage 1-2a
Feb04-Apr04: 4 AC, dose dense
Aug 04: 4 Taxotere
Dec 05: Bone and Liver METS; Stage 4. Carboplatin/Taxol/Herceptin. DX with Li-Fraumeni Syndrome
Apr 06: NED, maintenance Herceptin
Apr 07: CA1503=14; masses in liver; Xeloda/Tykerb
Nov 07: NED, Tykerb maintenance
Sept 08: Liver mets again, on Tykerb/Xeloda again, CA=19 and 27
Nov 08: Progression, Tykerb/Gemzar, CA=25
Dec 08: Progression, Herceptin/Navelbine, CA=40, 57, and 130
Jan 09: Progression in bone, recession in liver, Herceptin/Carbo/Abraxane CA=135
June 09: CA27/29=24, chemo break
Sept 09: Progression, CA=24, waiting on clinical trial (4 weeks no treatment)
Nov 09: now have brain mets, trial "on hold", getting 14 WBR treatments starting 11/2/09
Dec 09: possible start on p53 trial
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