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03-16-2009, 02:50 AM
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#1
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Petition for tyverb
I just created this petition let me know if you think I should change something in the text or if its ok(?) If you think then please sign it even if you not resident in the UK as you need to indicate which country you are from..
http://www.ipetitions.com/petition/tyverb/
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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03-16-2009, 04:06 AM
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#2
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Well done, think it's excellent! will get it to as many people and organisations as I can.
Can I just amend the following type errors that I have underlined below
Line 1 singled
Line 4 National Institute of Clinical Excellence
Line 8 advanced
options
We will see if women power works!
Ellie
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03-16-2009, 05:13 AM
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#3
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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The changes have been made. Thanks Ellie I appreciate it. I don't know why I typed evidence instead of excellence I so knew that.. That said I typed it with anger so..
Great lets get it to circulate please do so in the US and everywhere aswell even if you do not feel concerned (you have to say from which country you are from on petition) I think that being shamed might help..
Also it is a very good point that the British health system should not be used as a model !!!!!!!!!!!!
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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03-16-2009, 02:31 PM
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#4
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Hi everyone just a quick update. So far we have now got 42 signatures on our petition to get Tyverb (aka Tykerb outside UK) approved after it was rejected by NICE,the body responsible for approving new drugs
Please, please ,please friends sign the petition and send it to anyone else you think might support it.We need your help!
Many thanks Ellie
Last edited by Ellie F; 03-16-2009 at 02:33 PM..
Reason: added another word
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03-16-2009, 03:41 PM
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#5
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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I'm sending out emails as time permits to all the U.S. news networks, several specific anchors, Robin Roberts, Hannity, etc. I do not know how far I'll get, but I will do all I can. I also will post your petition link and an explanation on BreastCancer.org, unless you are members and will post it? Still trying to figure out a way to get you on the A.P. I have to work and manage a family, but will faithfully pursue this for you on our side of the pond.
BTW, have I told you gals that I think you ROCK!?
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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03-16-2009, 04:10 PM
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#6
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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I have it on Komen and cancerbuddies but still have a few other places I think it'll be seen and signed by many.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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03-17-2009, 04:21 AM
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#7
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Thanks to you all. This morning we have over 100 signatures, soon we will have the 3000 we need! Hope springs eternal. Ellie
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03-17-2009, 10:24 AM
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#8
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Hi Ellie, I just signed in.
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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03-17-2009, 10:49 AM
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#9
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Thanks all I think Joe (and others) ideas about putting it on BC web sites is to be explored fully. So I think if anyone you could help with that it would be great. I suggest making a list of where you have sent it could be very motivating perhaps? so I 'll start with mine
1) Breast cancer care UK -FOB
2) Breast cancer haven -FOB
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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03-17-2009, 12:33 PM
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#10
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Let me ask - does the NHS cover whole brain radiation or targeted brain radiation?
__________________
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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03-17-2009, 04:18 PM
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#11
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Guest
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If you look at the NICE guidelines for the UK they suggest whole brain radiotherapy, and if by targeted you mean Cyberknife then there is only one machine in the UK which is in a private hospital.
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03-17-2009, 04:21 PM
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#12
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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You are on BreastCancer.org as of last evening.
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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03-17-2009, 04:27 PM
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#13
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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As I mentioned previously, I have it on Komen and cancerbuddiesuk!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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03-18-2009, 02:14 AM
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#14
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Guest
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I dont know if anyone else has had trouble with the ipetition website but I have been unable to get the email page to actually send an email. I tried to pass on the petition to several people and sent a test one to myself, mine has not arrived after about 10 hours so I am not sure that this page is working properly (and no it did not get classified as spam and lost from my inbox). So my suggestion is that if you want to pass this on to friends and family that you send normal emails and not ones from the ipetition site.
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03-18-2009, 02:24 AM
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#15
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Guest
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I was wondering why a petition was not created on the http://petitions.number10.gov.uk/ the Official Government Petition Website. I know that only UK residents can sign such petitions but it would probably have received much more visibility here in the UK and you only need 200 or more signatories to get an official government response to it. |
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03-18-2009, 03:14 AM
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#16
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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If you want to send it to friends you can simply use the following link and attach it to your mail:
http://www.ipetitions.com/petition/tyverb/
Well I did not know about the number 10 site but I will send it to the people at NICE and to the number10 so a response will be given. I am hoping for more than 200.
However the number are not really increasing fast as wanted 195 at mo which is quite discouraging..  Ellie have you posted it to any other BC sites?
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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03-18-2009, 11:22 AM
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#17
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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I also was going to mention the Govt (no 10 website) which someone on cancer buddies mentioned to me.
Here's the link http://petitions.number10.gov.uk/
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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03-18-2009, 02:16 PM
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#18
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Well as I said in previous answer on this very same post there is not much to gain to change the place of the petition.. NICE is a governement response in case you have not realised!
.. please let's close the subject giving us doubt will not help.
However placing the link on all these sites is such a great thing, I feel so grateful for your help. Thank you thank you thank you..
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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03-19-2009, 05:35 PM
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#19
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Looking for an update. How many have signed the petition thus far?
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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03-19-2009, 05:40 PM
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#20
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Senior Member
Join Date: Aug 2006
Location: Poland Ohio just a little south of Youngstown.
Posts: 473
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I just looked at the sight and there are 244 signatures so far. Should be a lot more than that by now.
Hugs
__________________
Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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