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06-03-2012, 04:54 AM
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#1
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Senior Member
Join Date: Nov 2010
Posts: 393
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Herceptin T DM-1 Responders Speak Up !!
Today the National Media News is full of news about a " New " drug, with promising results from" Early Testing", T DM-1. Its not new, and 5 years is not early. You Survivors know that Pres. Obamas " New " FDA rejected early approval for this breakthrough drug 2 yrs ago. You lucky recipients of T DM-1 need to call, write your media contacts, politicians ( support HR 4132 , the FAST ACT ), ltrs to editor. Speask up w/ your advcoacy grps.
This miracle her2 drug is only available to a very , very small proportion of the women, men who need it. And This FDA will take months to approve it. Should those who blocked it be in charge of approving it ?? Lets pressure both FDA and Genentech to expand access, compassionate use especially for Survivors who have " exhausted all options ". Thats one of the reasons This post-2008 FDA gave for rejecting the drug in 2010. Even then thousands of Survivors had exhuasted all options. This FDA NEVER INTERVIEWED or asked a single Survivor ! Speak Up !! If a Drug Co. thinks their product is good enough to apply for acc. approval, they should grant compassionate use, do all they can to expand access.
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06-03-2012, 02:49 PM
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#2
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Senior Member
Join Date: Jun 2011
Posts: 107
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Re: Herceptin T DM-1 Responders Speak Up !!
Hi Phil,
Just to clarify, are you saying there is an actual bill---HR 4132, the FAST ACT--- that is in congress right now and we should be writing or calling our elected offcials and asking for their support of this bill?
Thanks for clarification!
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06-03-2012, 05:46 PM
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#3
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: Herceptin T DM-1 Responders Speak Up !!
Thats what my DC contacts told me , showed me the link, but i'm technologically challenged. They said it had only 20 sponsors, none from Mass. We will share more details as we get them . Its certainly worth calling your reps office about, telling them about This FDA's rejection of T DM-1 2 yrs ago, and continued slow approval process, costing lives every month t dm-1 is denied approval, ask them to back the bill Support Stage IV Rights !
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06-03-2012, 06:01 PM
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#4
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Senior Member
Join Date: Jun 2011
Posts: 107
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Re: Herceptin T DM-1 Responders Speak Up !!
Thank you Phil, for all you are doing on behalf of women who need this drug.
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06-03-2012, 06:24 PM
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#6
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Senior Member
Join Date: Jun 2011
Posts: 107
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Re: Herceptin T DM-1 Responders Speak Up !!
Thanks, Marcia, this is awesome. Does anyone know when this would be voted on? Phil?
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06-03-2012, 06:33 PM
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#7
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Senior Member
Join Date: Jun 2011
Posts: 107
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Re: Herceptin T DM-1 Responders Speak Up !!
http://www.govtrack.us/congress/bills/112/hr4132
Here is more on this bill. Unfortunately this update on this bill says it only has a 5% chance of passing.
Ladies, we know the bill number, you can Google who your elected offcials are and you can call or write to tell them you want them to pass this bill.
We want the FDA to approve life saving drugs...to fast track them so we don't die waiting for them. It is a shame to have TDM-1 out there, but have the FDA blocking us getting it.
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06-03-2012, 06:40 PM
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#8
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Senior Member
Join Date: May 2010
Location: Elizabethton, TN
Posts: 418
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Re: Herceptin T DM-1 Responders Speak Up !!
Some links:
http://www.govtrack.us/congress/bills/112/hr4132 This govt. site shows the bill with only a 5% chance of passage. There is a link which shows the 20 co-sponsors on this page, too.
The bill was referred to the Energy and Commerce committee on March 5, 2012.
http://energycommerce.house.gov/about/members.shtml
I have already messaged Rep. Marsha Blackburn who is on this committee and is from my state (TN) and would recommend anyone with a rep from their state should contact that rep immediately. I am also going to contact a friend who is the Govt. Relations vice president for our college of medicine here in my hometown. He has lots of contacts in DC in the healthcare legislative offices. Will post what I find out.
__________________
Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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06-03-2012, 09:08 PM
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#9
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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Re: Herceptin T DM-1 Responders Speak Up !!
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
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06-06-2012, 01:18 PM
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#10
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Senior Member
Join Date: Mar 2012
Location: Alabama
Posts: 121
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Re: Herceptin T DM-1 Responders Speak Up !!
Monday morning in the chemo room with the tv on. The room is full of patients and staff. Fox news promo for upcoming segment, "Good news for breast cancer...possible cure..." 4 of us receiving chemo have bc.
The media keeps sending out wrong info to attract viewers. More appropriate and accurate would have been a story about this bill I and others have never heard of but which is relevant to all cancer patients,
__________________
Vicki
Lord, give me the comfort of Your embrace and acceptance of Your will.
3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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