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Old 08-21-2014, 08:06 PM   #1
Belinda
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Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
Pls help Aussies get TDM1 Kadcyla

We Aussie Her2 women need your help. TDM1 -Kadcyla- is only available to us if ws pay in full, abt $170,000, or through Roche's compassionate access program. This means paying an average of abt $15,000 for 3 cycles. Our public health system contributes nothing. Our health insurance funds do not pay for chemo drugs.

The Government has twice rejected including TDM1 on the Pharmaceutical Benefits Scheme to enable women with her2 to access it with public subsidies.

Meanwhile Roche is threatening to end the compassionate access program, (the deadline has just been extended from August to October) meaning women women could have to pay the full price to access TDM1.

Please please help us by signing the following petition-started by my amazing Mum Janine. And, if you can, share it to your facebook friends and other networks.

Many thanks - Belinda

https://www.change.org/p/peter-dutto...share_petition
__________________
Belinda
  • Diagnosed 3 Jan 2007, Stage IIb, Mastectomy and axillary clearance 10 Jan 07, 6 of 19 nodes affected, multi-focal cancer, HER2 positive. Second mastectomy (prophylactic). Chemo - AC 3 months, Taxol 3 months - then radiation 5 weeks.
  • Aug 2011 - Diagnosed with Stage IV mets to lung, sternum and 12 or so thoracic nodes - Rads to Sternum, then weekly abraxane and herceptin for 12 weeks.
  • May 2012- good scans - all nodes still about normal size, hole in sternum repairing, lung tumour 'obliterated'.
    Ongoing herceptin every 3 weeks. Bloods still all good! Life good!
  • March 2013 - recurrence - tumours in lungs and mediastinum (coughing up blood) - immediate radiation treatment to right lung and mediastinum, still on Herceptin, and 3 months of Vinoralbine - stable for a little while!
  • Coughing and breathlessness started again September 2013, treated as radiation-induced fibrosis (which can be seen on scans - albeit stable). ie puffers, steroids
  • January 2014 - cough becomes bloody again, scans show big mediastinal tumour wrapped around and choking the life out of my right main bronchus, radiation deemed off limits as my lungs are hypersensitive to radiation (measured by existing damage from 2013) .....................- ie I am in the 5% of people likely to suffer severe radiation damage to the lungs that they warn you about before starting treatment! (so special! :) )
  • Started chemo Feb 2014 - continuing Herceptin (continuous since Aug 2011), with Carboplatin and Gemcitabine. Discontinued Gemcitabine because of se's. Starting cycle 5 Herc/Carbo 5 May 2014.
  • Meantime.....coughing and breathlessness increased to SCARY levels with racing heartbeat that won't slow down, breath that won't come back, even just walking to the bathroom or up 3 or 4 steps.
  • ICU from May 5 2014, collapsed right lung due to tumour, small pulmonary embolism (left), tumours growing in mediastinum left and right, dvt lower right leg
  • Plan seems to be bronchoscope next week to see if tumour can be lasered and stent inserted in right bronchus to reopen air access to lower parts of right lung. If that is successful might be able to have brachytherapy to worst tumour, otherwise no more options for external radiotherapy.
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Old 08-21-2014, 11:29 PM   #2
sarah
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Re: Pls help Aussies get TDM1 Kadcyla

signed. try to get some journalists to write about it. in the UK that's how they finally got Herceptin.
good luck
sarah
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Old 08-22-2014, 12:48 AM   #3
Bunty
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Re: Pls help Aussies get TDM1 Kadcyla

Signed. Thanks for promoting this petition Belinda.
Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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Old 08-22-2014, 07:20 AM   #4
caya
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Re: Pls help Aussies get TDM1 Kadcyla

Signed. Sarah is right, take this to the press.
That is how Herceptin got approved in Canada in 2005.

all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 08-22-2014, 08:55 AM   #5
michka
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Posts: 858
Re: Pls help Aussies get TDM1 Kadcyla

Signed. Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 08-22-2014, 09:02 AM   #6
annettchen
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Posts: 95
Re: Pls help Aussies get TDM1 Kadcyla

Signed. Annette
__________________
Annette
----------------------------------------
03/2014: Diagnosed with ER/PR-, HER2+++ MBC (bone mets, oligometastatic)
04/2014: Started 6 cycles of "PHD" (Perjeta, Herceptin, Docetaxol)
07/2014: Finished 6 cycles of PHD; restaging; 2 bone mets are sclerotic - looks like Herceptin and Perjeta is working
10/2014: STABLE!
01/2015: STABLE!
04/2015: STABLE!
08/2015: STABLE!
12/2015: BRAIN METS. BODY STABLE.
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Old 08-22-2014, 08:37 PM   #7
Carol Ann
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Join Date: Dec 2013
Posts: 1,045
Re: Pls help Aussies get TDM1 Kadcyla

Signed!

CA
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 08-22-2014, 10:53 PM   #8
Belinda
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Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
Re: Pls help Aussies get TDM1 Kadcyla

Thank you all so much.bxxxxxx
__________________
Belinda
  • Diagnosed 3 Jan 2007, Stage IIb, Mastectomy and axillary clearance 10 Jan 07, 6 of 19 nodes affected, multi-focal cancer, HER2 positive. Second mastectomy (prophylactic). Chemo - AC 3 months, Taxol 3 months - then radiation 5 weeks.
  • Aug 2011 - Diagnosed with Stage IV mets to lung, sternum and 12 or so thoracic nodes - Rads to Sternum, then weekly abraxane and herceptin for 12 weeks.
  • May 2012- good scans - all nodes still about normal size, hole in sternum repairing, lung tumour 'obliterated'.
    Ongoing herceptin every 3 weeks. Bloods still all good! Life good!
  • March 2013 - recurrence - tumours in lungs and mediastinum (coughing up blood) - immediate radiation treatment to right lung and mediastinum, still on Herceptin, and 3 months of Vinoralbine - stable for a little while!
  • Coughing and breathlessness started again September 2013, treated as radiation-induced fibrosis (which can be seen on scans - albeit stable). ie puffers, steroids
  • January 2014 - cough becomes bloody again, scans show big mediastinal tumour wrapped around and choking the life out of my right main bronchus, radiation deemed off limits as my lungs are hypersensitive to radiation (measured by existing damage from 2013) .....................- ie I am in the 5% of people likely to suffer severe radiation damage to the lungs that they warn you about before starting treatment! (so special! :) )
  • Started chemo Feb 2014 - continuing Herceptin (continuous since Aug 2011), with Carboplatin and Gemcitabine. Discontinued Gemcitabine because of se's. Starting cycle 5 Herc/Carbo 5 May 2014.
  • Meantime.....coughing and breathlessness increased to SCARY levels with racing heartbeat that won't slow down, breath that won't come back, even just walking to the bathroom or up 3 or 4 steps.
  • ICU from May 5 2014, collapsed right lung due to tumour, small pulmonary embolism (left), tumours growing in mediastinum left and right, dvt lower right leg
  • Plan seems to be bronchoscope next week to see if tumour can be lasered and stent inserted in right bronchus to reopen air access to lower parts of right lung. If that is successful might be able to have brachytherapy to worst tumour, otherwise no more options for external radiotherapy.
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Old 08-25-2014, 09:58 PM   #9
Mtngrl
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Posts: 1,427
Re: Pls help Aussies get TDM1 Kadcyla

I signed it and sent it out on Twitter. If you're on Twitter, try posting it with the hashtag #bcsm and/or #metsmonday.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 08-26-2014, 12:29 AM   #10
Pamelamary
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Posts: 494
Re: Pls help Aussies get TDM1 Kadcyla

Signed - thanks to you Belinda and your wonderful mother! As a fellow Aussie, I agree the PBS should move more quickly to fund these treatments. Bring on the Pertuzamab too!
Best wishes..... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 08-27-2014, 07:08 AM   #11
phil
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Posts: 393
Re: Pls help Aussies get TDM1 Kadcyla

absolutely support this cause . I hear England is dragging its' feet too. go to Press. look up mytommorow.com - they seem to be a stage iv activist grp. based in Europe with a similar heavily govt/ bureaucratic regulated heath system . enlist thier support , advice.
send out the word looking for t dm-1 super -responders in Australia to testify. Have them video a testimony like Lorraines : http://youtu.be/AkQOLGpXf98 . give it to Press. play up how whole countries like Austr. are left out of trials . we are fighting for Right To Try laws here becuase many of our citizens live far, far from trials. there are so few super-responders even here because the system here is also so slow and small. only 109 pts got to even try t dm-1 at farber over 7 yrs !! . seems to have had about a 20 % super response rate, usually those with just her2 mutation , no er /pr. the success rate will only grow as its' deployed earlier in the fight.
look up the quotes on it as " revolutionary " a " game changer ' for her2 . its really a " super - herceptin " . can't believe it took until 2005 to appr. herceptin in Canada ?? herceptin now is used so widely , but by itself, without chemos it " cures " only about 20 % . t dm-1 will cure more - especially when finally appr. for eariler stage her2 , or first re-occ., and with fewer s/e than older chemos that have to be combined with herc for many.
these drugs are steps forward in the War . they do cost $ but there are great costs to win any war. they lead to better drugs and eventually to the cures. govts spend billions every yr to fight wars that cost the lives of often only dozens or hundreds of their citizen / soldiers. her2 kills 15,000 US citizens EVERY Yr. !
and go to Press/ and govt officials to investigate comp use . the no.'s are apthetically small. ask officials to investigate Gen. s decision to close comp use. go to Press. from co.'s that spend billions $$$ to make billions $$$ on the backs of stage iv survivors who are exploited in their phase I trials and then abandoned . how many Australian her2 Stage IV survivors have progressed on all appr tx.s , what is the cost ? Roche/Holding AG , which owns Genentech , is buying another pharma co. this week for 8 BILLION $$$ !
the pressure is growing on govts and co.'s - the drugs are getting better and better we need to push ro quicker approvals. and for respect for our stage iv rights . when will u get perjeta ? when will you get iclusig for leuk. ? palbociclib for ER +? is affinitor / aromasin appr even appr. there for ER + ? what about olaparib/cedarinib for ovarian ? latest MS drugs ?
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Old 08-27-2014, 02:32 PM   #12
phil
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Re: Pls help Aussies get TDM1 Kadcyla

You are an Activist , like us - we started with a Petition , but realized we needed more. So we found like-minded Stage IV Activists on these Boards. especially Inspire Advanced BC Community . and then put up a FB grp to publicize our Petition. 3 other Stage IV survivors spoke with us at a public rally . Outside our local state capitol city hall ( Boston ) . we didn't get press coveragethat time . even though we had goten personal tv. newspaper coverage of out journey to Wash. D.C. to get the drug thru exp. access. So we then had a Picket line outside the international Bio convention , fortuitously also in Boston that yr. DC, our nat.l Capitol is far away. Picketing much more effective. so get a few Stage IV survivors - go to Press. and with your families , friends pick the closest , biggest govt building or pharma office. announce press release and demonstrate . it is exhilirating. we had our Congr. rep and Senators call the co. and our FDA . have your pols call the co. , and govt agency heads. put them on notice
don't let non - activists dissuade you . many , even survivors , have un-conscious biases - often against " big, bad " pharma, or some against Big Bureaucratic Govt agencies . or for one or the other . the System Is what it is for now - most late phase II, III research is done by private co.'s - but both they and govt should be more responsive to stage iv citizens sacrifices, rights. we say " we are not anti - govt or anti - pharma .. we are PRO Stage IV Pt. ! " and " its not personal , their policies are in fact too rigid, slow, impersonal - to the point of killing us ! so we must Speak Up. Good Luck and God Bless !
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