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Old 08-30-2012, 11:35 AM   #21
KsGal
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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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Old 08-30-2012, 02:06 PM   #22
tricia keegan
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Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO

Chris I have no advice sadly but I'm horrified you're being denied a drug that may help you,this would'nt happen here in Ireland and I so hope you find a way round this and will see if any of my friends in the U.S can help!
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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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Old 08-30-2012, 02:31 PM   #23
Becky
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Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO

Dear Chris

It shouldn't be so hard but you are stronger. You and your oncologist need to appeal - both of you. Over and over again if necessary. I do know one thing, the greasy wheel does get the oil even though it might take awhile. Go through their process and call, call,call - everyday - all the time.

I did this for my daughter and although not life threatening, they relented and gave her treatment (took about 2 months and 2 doctor interventions) but it did work. You have a local onc too who can join the party. The insurance companies just want to know how serious you are (duh - like we aren't if we have cancer). It's alot to ask when you are having chemo (use that sweetly when talking to them - I used "my child can't breathe and I never got angry with the messenger - cry if you want but don't get angry). I know your team will secure it for you. Use every doctor you know
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 08-30-2012, 02:53 PM   #24
tricia keegan
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Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO

Chrisy I have a friend working for the insurance company but not this group but she sent me this message ! work for a major health insurance...a competitor of Anthem. When you say "approved", is it on their Anthem's approved drug list, or just a legal drug? Mine was not on their approved drug list, but a couple of convincing calls later my insurer allowed it. My guess is that it was not on the approved list because it was insanely expensive."

I hope your Onc can help!about a minute ago · Unlike · 1
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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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Old 08-30-2012, 02:58 PM   #25
Andrea Barnett Budin
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Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO

Yes, Chrisy, Breathe. In. Hold. Out. And again and again. Becky is wise. Never lead with anger. Befriend your person on the other end of phone.


I searched for you and came up with Perjeta Access Solutions (below). I do know that when my insur co denies me my husband gets on the phone. We've learned that sometimes, believe it or not, you have to realize you're talking to a person who is a robot or has the IQ of a penny and you just say, Thank you and hang up. Call right back and you can get a real human who becomes hell-bent on helping you.

The insur co will tell you exactly what is required for you to appeal. A letter and/or a call from your doc. Sometimes sev calls from your doc. The squeaky wheel thing is key.

Remain calm. Know that we are sending all the necessary positive energy you will need to get through this emergency. Help is on the way.

In. And hold. And out. Do not stop breathing... Keep thinking of Yosemite and your favorite spot. Go there (in your head). Recapture the feelings you had before. Bring them to you in this moment.

Much love,




PERJETA Access Solutions®

PERJETA Access Solutions helps to resolve specific access and reimbursement issues for individual patients every day. Our dedicated Specialists help bring patient treatment and practice solutions together.
Our staff can help:
  • Resolve benefits and coverage issues
  • Find co-pay assistance for underinsured patients
  • Provide free medicine for uninsured patients through the Genentech® Access to Care Foundation
  • Individualize services to meet patients' specific needs
To learn more, please contact your Genentech Clinical Oncology Specialist or call 1 (888) 249-4918 (weekdays 6AM-5PM PST), or fax 1 (888) 249-4919.
Additional resources


Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 08-30-2012, 06:22 PM   #26
Lori R
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Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO

Chris,
Another thought, just to double check. I was initially denied when I tried to see if Herceptin + Tykerb would work. I called for a couple of days and just couldn't get traction. Neither could my Dr.

I was still working (which I think you are), so I walked into HR and said I needed their help immediately to get a direct contact and help me work this through the process. It was only when my company got involved that I felt like someone even noticed my faxes. (I had images of a fax machine just feeding into a trash can).

Just a thought.....Lori
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 08-30-2012, 08:33 PM   #27
carolanno
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Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO

Check your prescription drug benefits and see if you can get it directly from them and bypass your insurance.
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Old 08-30-2012, 10:00 PM   #28
Pray
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Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO

I'm praying you get it covered soon! Gods blessings to you!
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 08-31-2012, 12:02 PM   #29
chrisy
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Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO

Thanks for the support. We are nor giving up this fight, and true, we shave to be strong and put someone on my side. Sheila said it as "you have to put it on their heart". Punching them in the nose won't do that, neither will coming from weakness.

I spent all day Wednesday researching, (including Perjeta access solutions) and am continuing to gather more ammo.

We have an interim plan for. Chemo....but wait! No chemo for Christika until the horrifyingly painful infection (hopefully not a full on blood infection) inher leg is resolved. I will post this sideshow which is now on center stage on a separate thread.

Again, thanks for the love, wise suggestions and support.

Cris
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 09-03-2012, 09:31 AM   #30
phil
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Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO

Someone on this board or inspire went thru abattle w/ aCalif. ins co earler this yr. her screen name was emilia i think ? It was either t dm-1 or pert that was being denied. she appealed to calif state ins board , and won. Go Public ! I feel like this is the yr for protest against all thes bureaucracies, ins co's included !
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Old 09-03-2012, 10:22 AM   #31
Mary Jo
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Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO

So agrees with every word Sheila wrote. DAMN those insurance companies who act as if they are God and can dictate what's best for us...or not! Now, all anger aside......I also agree with what you Chrisy said ..."miracles or new medicines come from One source". God is wayyyyyyyyyy bigger than your insurance company AND wayyyyyyyyyyyy MIGHTIER! He can and WILL do it. Prayers being sent up all around the globe for you dear friend.

Mary Jo
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"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 09-03-2012, 01:16 PM   #32
phil
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Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO

I think the woman I'm thinking of goes by " elaina ", on this board or Inspire. Perjeta is being prescribed off protocol, or thru comp use in some parts of the country . Why not in Calif. ?
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Old 09-03-2012, 02:02 PM   #33
Lani
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Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO

Phil, if you could be more specific about where in the US perjeta is available for compassionate off-label use perhaps Chrisy could use ANGEL FLIGHT to get there.
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Old 09-03-2012, 05:05 PM   #34
Sheila
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Post Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO

I believe it has more to do with insurance than where you live....I do know that out of 15 women in Chicago where I go, only myself and one other women are getting it. Theyndid say we have phenomenol insurance....so if it is denied for some, it has to be insurance....even coverage on other items is so different....my insurance covered wigs and my sisters did not....I had to,pay for Neulasta and Neupogen shots...30.00 each and she did not...we both had blue cross blue shield but different plans.
My oncologist got Very involved.I have given Chris all the info for her Dr.
__________________
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 09-04-2012, 08:07 AM   #35
phil
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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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