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08-30-2012, 12:30 AM
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#1
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
Chrisy,
I'm so sorry the darned insurance is causing you this grief. They are certainly good at causing us grief and unneeded stress in our lives. This just seems ridiculous. I mean if you're Her2 + and metastatic, and the drug is shown to work, then seems like a no brainer to me.
What about the Perjeta website, http://www.perjeta.com/patient/index
and the link to Perjeta access solutions. Maybe some info there.
Hang in there, someone has got to come to their senses on this one, and do the right thing.
Kim
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.
5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.
9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .
11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!
7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!
June -Dec 2004 UW Vaccine Trial.
7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.
Brain MRI @3 months NED!
2006-2011 brain/body still NED
8/04/11 Taking Herceptin break, will monitor with tumor markers.
6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.
7/23/12 CA15-3 now 49.3
Her2 Serum 26.8
8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49
11/7/12 Add weekly Taxotere for 4 cycles
2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.
November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!
Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara
Jan 2016 Begin Kadcyla
March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla
November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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08-30-2012, 05:23 AM
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#2
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
So many of us long term stage IV's find ourselves in limbo once again....
When we were diagnosed back 8 or more years ago, we were early stage, and told we WERE NOT eligible for Herceptin..as it was only given to Stage IV ..the door was shut in our face.....and so we waited....and many of us recurred, and THEN we WERE eligible form Herceptin.
Now, they come out with a new miracle drug, Perjeta, for metastatic breast cancer.....and as our hopes rise , we are again told NO...we are NOT eligible...we are not newly diagnosed metastatic...basically for better words, we are to far down the metastatic road. Again, the door is slammed shut, no room for us who are the most desparate for this drug.
TOO EARLY.....TOO LATE.....WE are NOT asking for Super Bowl tickets, we are NOT asking for hot concert tickets....we are asking for our LIVES!!!! Seems to me we have been getting the short end of the stick from the beginning.....maybe, if we had gotten the Herceptin from the get go, we would not be begging for the Perjeta!
Those of us asking for help in getting this drug, have been your. Est customers for years...can you hear us....can you give us a break????
yes, I miraculously got approved through medical necessity.....basically this or Hospice....and my insurance relented and approved the drug ......but our lives should NOT be dictated by the damn insurance companies.....
many prayers being said that this will be available for all who need it....it's cheaper than Herceptin, if it's approved, it should be available!!! Stay strong Chris....I see Perjeta on your future..
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08-30-2012, 11:35 AM
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#3
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
I don't have any wise advice about how to get the Perjeeta. I agree with everything Sheila said. Im just sad..sad everything has to be so difficult, sad that you have to fight so hard to get what you need to survive. I know you will get the drug, because I have seen how hard you fight, and I know you and your docs will find a way. I can give you a hug, and I can't give you any meaningful advice, but I give you my prayers and all the positive energy I can muster.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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09-04-2012, 08:07 AM
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#4
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
I also think it has to do more w/ individual docs, hospital irb's, ins. and different state regs. It has been given off protocol at farber here in Boston. caes by case basis . I have heard that in Mass. ins co' s are required to cover off protocol. Comp use was granted in Fla for darlene gant ( FB, youtube ). That was before FDA approval for first line use only. That conditional decision , and its effectrs on late stage iv pts, must be publicized. I would go to media. report the ins co to the state board . and in the media .
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