| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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05-09-2007, 10:14 PM
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#1
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Junior Member
Join Date: May 2007
Location: Sydney Australia
Posts: 3
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Need to get onto Tykerb
Hi. I'm in Australia and unfortunately tykerb is not available here. Can someone help direct me to an oncologist or some one from whom I can purchase tykerb from over there in the States? I would like to get on to it ASAP and happy to travel over. Thank you. Brony
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05-10-2007, 12:05 AM
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#2
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I wish I knew, Brony! Hopefully someone here might have info for you... best of luck!
__________________
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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05-10-2007, 09:02 AM
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#3
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Brony,
There are several clinical trials ongoing in Australia, have your oncologist check into them:
http://www.clinicaltrials.gov/ct/sea...&submit=Search
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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10-08-2007, 05:14 AM
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#4
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Junior Member
Join Date: Oct 2007
Posts: 1
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Good news?
Hi Brony,
Tykerb was launched in Australia in August and I have heard that there is a program where it is available free if your doctor registers you. Might be worth looking into?
Best of luck.
: )
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10-10-2007, 06:28 AM
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#5
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Senior Member
Join Date: Feb 2006
Location: South Florida
Posts: 131
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Brony
Have you considered a Second opinion in the USA, some hospitals offer this to international patients.
Here is a link to Memorial Sloan Kettering Cancer Center located in New York.
They offer information for international patients.
http://www.mskcc.org/mskcc/html/5264.cfm
Here is a link to MD Anderson Cancer Center in Houston Texas
http://www.mdanderson.org/departments/ipc/
I truly wish you the best.
__________________
Lala
DX Fall05 Stage 4 er+ pr+ her2+ liver and bone mets
DX Fall06 Brain mets, Brain mets gone Spring 2007
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10-15-2007, 02:43 PM
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#6
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Member
Join Date: Jan 2007
Location: Queensland, Australia
Posts: 18
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Hi Brony
I've been on the Tykerb/Xeloda EAP since Jan through Dr Jodi Lynch in Sydney. My Onc in Canberra mentioned to me about 3 months ago that all oncs would soon be able to prescribe it. T/X has now stopped working for me so not sure if all oncs can now prescribe it. He did mention to me just before my last scans that I need to speak to Dr Lynch about coming off the trial so he could prescribe it. You may need to speak to your onc again, maybe he/she is not up to date. Also I've never heard it call Tykerb here, always Lapatinib. Hope this helps.
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10-15-2007, 03:51 PM
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#7
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Senior Member
Join Date: Oct 2007
Location: Balmain Sydney NSW
Posts: 53
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Tykerb in Sydney
Hello Brony,
Tykerb is currently being issued by the drug company free to certain cancer centres for women who meet the criteria. It is part of the Drug familiarisation program until a ruling is passed by the govt as to whether to make it available on Medicare. If it is not passed then it will have to be paid for.
The criteria are; you must have had, - an anthracyclane (Epirubicen etc)
- a year of Herceptin that is no longer working
- metastatic breast cancer
- chemotherapy -Taxane
It is being issued with Xeloda (chemotherapy tablet) as that is the basis of the research .
Speak to your oncologist about it.
Good luck
Adrien |
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10-16-2007, 10:31 PM
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#8
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Senior Member
Join Date: Oct 2005
Location: Sydney Australia
Posts: 105
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Hi Brony, I live in Rozelle (next suburb to Adrien, we are neighbours!) and have been getting Tykerb (Lapatinib) from Royal Prince Alfred hospital. I have been on it 2 weeks and had no trouble getting on it.
Regards, Roz
__________________
diagnosed June 03. Rt sided Inflammatory BC in rt lower quadrant. 7cm tumour. Also 3 DCIS. 3 rounds of EC, mastectomy with axillary clearance (12 nodes+ of 19). 1 more EC. 5 weeks of rads, with weekly booster to attack skin lymph involvement. 4 cycles of Taxol. Tamoxifen.Recurrence December 04, Herceptin started early Jan05,+ Arimidex.
NED 26 mths. Recurrence early Mar07. Taxol added to Herceptin. NED. Will have total of 6 cycles, then Aromisan and Herceptin. Early Oct 07, recurrence to the pesky right upper lobe, with some pleural thickening upper rt hemithorax. T/X now the treatment. May 2008, Taxatere and Herceptin for lung recurrence
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10-17-2007, 04:19 AM
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#9
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Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
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St Vincents in Melbourne
Has Tykerb on trial.Phone 03 92883155
Last edited by jhandley; 10-17-2007 at 04:20 AM..
Reason: spelling
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10-24-2007, 05:31 AM
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#10
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Senior Member
Join Date: Jun 2007
Location: Bergenfield, NJ
Posts: 121
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HI Brony,
Have you been able to get onto TYkerb?
I sent you a private message about a week ago.
HUgs,
Gem
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10-29-2007, 08:21 PM
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#11
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Senior Member
Join Date: Oct 2007
Location: Balmain Sydney NSW
Posts: 53
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Dear Brony,
Tykerb is going before the next meeting of the
Pharmaceutical Benefits Advisory Committee, which meets from October
31-November 2 (end of this week), to consider (amongst many issues)
whether Tykerb should be listed on the Pharmaceutical Benefits Scheme.
Listing on the PBS would mean subsidised access to the drug for all
eligible women. However if Tykerb is not listed, this should not affect current access to Tykerb through the Tykerb Access Program.
At this stage, GlaxoSmithKline have advised that they will continue
to accept women into the Tykerb Access Program until November 30. Women
in this program will continue to receive Tykerb at no cost. Between
November 30 and March 2008 any women wanting to access Tykerb who are
not currently on the Program can join under a cost sharing arrangement.
Details of this have not yet been released.
So the bottom line is that regardless of whether Tykerb is approved for
listing on the PBS, this should not alter current access to the
drug through the Tykerb Access Program.
Hope this helps,
Adrien
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