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Old 01-29-2014, 03:57 PM   #1
PatE
Senior Member
 
Join Date: May 2010
Posts: 41
Help-Advice needed to get Ins To pay for Projeta

Hi everyone
I'm having a really bad time, saw Onc yesterday to review PET. She walked in and said its horrible much much than she expected. I am lighting up in many places including 2 spots on liver.
I finished 4 doses of Kadcyla and the cancer grew like wildfire during that time. The new plan is Taxol, Herception and Perjeta. The financial person said Aetna would pay and then called back and said she thinks it's going to be a problem, how cruel!
Anyone have any insight as to how I might get this approved, when I asked the Onc how long I would have with no treatment she said weeks to.3 months. I'm terrified to say the least .... Any advice is appreciated.
Pat
I also have Blue Cross of CA as secondary ins
__________________
Oct 07 - Dx PR+/ER+/HER2
Jan 08 - Double mastectomy
Feb 08 - Pet Scan showed liver met
Mar 08 - Started chemo A/T
Aug 08 - Herceptin
Aug 08 - Cyberknife treatment to liver met
Apr 10 - Bone scan showed met on spine L2
May10 - Cyberknife treatment to spine L2
added Zometa quarterly
Jan 12 - Pet scan show mets in lymph nodes
in rib cage area, one near panaceas. Add Tykerb
Nov 12 - New primary colon cancer, not breast met
Dec 12 - Surgery for colon cancer stage II no node involvement. No chemo. Added Leterzole
Continue weekly Herceptin/Zometa/Letrozole
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Old 01-29-2014, 05:29 PM   #2
KDR
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Location: New York, New York
Posts: 1,580
Re: Help-Advice needed to get Ins To pay for Projeta

PatE,
In your mind, try to rephrase the words your oncologist used. "OK. There is progression. We can handle this." Erase "horrible." Erase "much more," which is what I think you meant to write. You have enough to deal with without adding a poor bedside manner. Phew. That even knocked the wind out of me.
Don't expect to have a problem with the insurance company. Let them know you won't settle for anything less than what you need. If your oncologist says you need it, you need it. And speak with a supervisor. Ask for decisions in writing if you are given the negative.
Can anyone in Patient Relations help you get what you need? I find that the Billing/Insurance department at my facility gets a lot done for me. I'd go that route. Ease up any burdens on yourself.
Wishing you all the best,
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 01-29-2014, 05:55 PM   #3
PatE
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Join Date: May 2010
Posts: 41
Re: Help-Advice needed to get Ins To pay for Projeta

KDR,
Thank you for the quick response and kind words. I agree its time for a new Onc! I have called my company benefits Manager, my insurance advocate at the ins company - got all voice mails so waiting for call backs.

I found this on the FDA website - a news release dated Sept 30th, 2013

"Perjeta new use is intended for patients with HER2 positive locally advanced, inflammatory or early stage Breast cancer (tumor larger than 2cm in diameter or with positive lymph nodes) who are at high risk of having their cancer return or spread OR OF DYING from the disease"

Did you have any problems with ins and how was Perjeta
Thanks so much, I'm trying to stay calm.
Pat
__________________
Oct 07 - Dx PR+/ER+/HER2
Jan 08 - Double mastectomy
Feb 08 - Pet Scan showed liver met
Mar 08 - Started chemo A/T
Aug 08 - Herceptin
Aug 08 - Cyberknife treatment to liver met
Apr 10 - Bone scan showed met on spine L2
May10 - Cyberknife treatment to spine L2
added Zometa quarterly
Jan 12 - Pet scan show mets in lymph nodes
in rib cage area, one near panaceas. Add Tykerb
Nov 12 - New primary colon cancer, not breast met
Dec 12 - Surgery for colon cancer stage II no node involvement. No chemo. Added Leterzole
Continue weekly Herceptin/Zometa/Letrozole
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Old 01-29-2014, 06:19 PM   #4
Laurel
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Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
Re: Help-Advice needed to get Ins To pay for Projeta

Pat,

I have no experience with insurance companies, so no help on that front, but I have added you into my prayer notebook so I will remember to pray specifically for your healing and for a swift end to your insurance log jam.

I completely agree with Karen regarding your Onc's negative bedside manner. Honestly! Karen's words were so well said and clear that I cannot add more except to say that I will go to my knees for you.

Laurel
__________________

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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Old 01-29-2014, 06:41 PM   #5
KDR
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Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
Re: Help-Advice needed to get Ins To pay for Projeta

PatE,
I think it took a week to get approval. They (your medical professionals) know how to get it done. Believe me, they want the money. You might have a great oncologist, just one who can't seem to channel unfavorable news with empathy. If this oncologist were mine, we'd have to talk about "how" to talk with me. Not TO me. Not AT me. WITH me.
Press on.
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 01-29-2014, 10:50 PM   #6
addiemoose
Member
 
Join Date: Jan 2014
Posts: 8
Re: Help-Advice needed to get Ins To pay for Projeta

Maybe this will help. I know we got Blue Cross in Washington State to cover Perjeta. This link is Blue Cross policy re pertuzumab (perjeta) from "Capital Blue Cross" in Pennsylvania:
https://www.capbluecross.com/wps/wcm...df?MOD=AJPERES

I. POLICY

The use of pertuzumab may be considered medically necessary in the treatment of breast
cancer when all of the following conditions are met:
 Patient has HER2–positive metastatic breast cancer
 Pertuzumab is used in combination with trastuzumab and a taxane (e.g., docetaxel,
paclitaxel)

2. This is Blue Cross Blue Shield's position paper on Pertuzumab
https://www.bcbsnc.com/assets/servic...pertuzumab.pdf


Pertuzumab (Perjeta™) is a monoclonal antibody that is a HER2 receptor antagonist. It has received U.S.
Food and Drug Administration (FDA)-approval for use in combination with trastuzumab and docetaxel
for the treatment of HER2 positive, metastatic breast cancer. The combination of 2 HER2-active agents
targeting different subdomains of HER2 may result in a more comprehensive blockade of HER2 and its
pathways, and thus may lead to a greater treatment effect.

GOOD LUCK!
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Old 02-04-2014, 06:24 PM   #7
phil
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Join Date: Nov 2010
Posts: 393
Re: Help-Advice needed to get Ins To pay for Projeta

speak to asupervisor , take name, record of call, get a copy of their coverage rules regarding perjeta. fda approval is for pts who have not had prior anti - her2 therapy, but many ins. co.'s are approving it, like that bc/bs mentioned. docs can prescribe it for stage iv's who have had prior anti -her2 tx., its called " off protocol or off label " . the fda pt reps tell pts this , they understand their appr. process is not keeping up w/ new tx.'s. their top execs , all dr's ( amazing ) pazdur, woodcock, hamburg, are too far removed from the chemo room reality. their fda has " no timetable " right now to "expand label " . this is crux of our activism. we stage ivs have no voice at top of fda.
so we fight . push the ins. co., for a week or so, appeal any denial. then go to your Congressional reps, and media. are u at a top research hospital , dealing w/ latest triple pos., which it looks like u are ? your doc doesn't sound like a top researcher .
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Old 02-04-2014, 06:25 PM   #8
phil
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Join Date: Nov 2010
Posts: 393
Re: Help-Advice needed to get Ins To pay for Projeta

make sure to tell Aetna how cheap their coverage looks compared to that bc/bs.
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Old 02-04-2014, 06:27 PM   #9
phil
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Join Date: Nov 2010
Posts: 393
Re: Help-Advice needed to get Ins To pay for Projeta

a hospital dealing w/ trials for triple pos , new tx's are coming out every yr now.
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Old 02-05-2014, 09:04 AM   #10
PatE
Senior Member
 
Join Date: May 2010
Posts: 41
Re: Help-Advice needed to get Ins To pay for Projeta

Thanks everyone for all the great advice. Aetna is paying for the Projeta! Had my 1st treatment, praying this is my magic bullet!
You guys are wonderful, don't know what I would do without this site!
Pat
__________________
Oct 07 - Dx PR+/ER+/HER2
Jan 08 - Double mastectomy
Feb 08 - Pet Scan showed liver met
Mar 08 - Started chemo A/T
Aug 08 - Herceptin
Aug 08 - Cyberknife treatment to liver met
Apr 10 - Bone scan showed met on spine L2
May10 - Cyberknife treatment to spine L2
added Zometa quarterly
Jan 12 - Pet scan show mets in lymph nodes
in rib cage area, one near panaceas. Add Tykerb
Nov 12 - New primary colon cancer, not breast met
Dec 12 - Surgery for colon cancer stage II no node involvement. No chemo. Added Leterzole
Continue weekly Herceptin/Zometa/Letrozole
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