| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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06-20-2007, 08:35 PM
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#1
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Senior Member
Join Date: Apr 2007
Location: Shaker Heights, Ohio
Posts: 86
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Could not be Happier!
Esther,
I was really worried as I opened your thread, thinking oh no, she may have progression, what then?
Now this is the best news! I have tears in my eyes with happiness.
Keep dancing with Ned Esther!
I'll celebrate with a dance too!
Odette
__________________
May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment
'One does not get to choose one's adventures'
I'm experimenting with my diet, using green tea, flax seed curry and olive oil
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06-20-2007, 09:05 PM
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#2
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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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#3
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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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#4
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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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#5
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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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#6
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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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#7
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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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