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Old 07-27-2017, 12:30 PM   #1
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Join Date: May 2013
Posts: 537
Insurance Frustrations

Hey everyone,

I'm dealing with a bit of a blow today. I opened a letter from Aetna that denies coverage for both Herceptin and Perjeta. I spent two hours on the phone with multiple departments and got no where with them.

After covering them for nearly two years, these drug are no longer covered by my plan. I am starting an appeal but my next treatment in on August 8th. Seriously? My plan can just change midstream like that? My premium didn't change.

Has anyone else had something like this happen? We all know how important H&P are to us. I checked and Kadcyla is not covered either. So how is a MBC with HER2+++ disease to live if insurance doesn't cover these pharmaceuticals? I'm feeling totally frustrated and just a little bit defeated. I have to muster up some energy to fight Aetna but I really don't know where to start.
Tracy Arcari
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!

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Old 07-27-2017, 01:37 PM   #2
lkc Gumby
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Posts: 420
Re: Insurance Frustrations

Hi Tracy, sorry you have to deal with this. Honestly having to fight with insuranc companies over denied needed care makes my blood boil. All insurance companiies have medical directors for different medical conditions. Ask .. no demand to talk to the oncology head for your area and plead your case.
As a subscriber you have the right to appeal directly to that person.
good luck!

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
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Old 07-27-2017, 01:39 PM   #3
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Join Date: Apr 2012
Posts: 165
Re: Insurance Frustrations

Hi Tracy,

Call your cancer center immediately. Your oncology team (doc and social worker) will get on the phone to the Aetna drones. I have known many an oncologist who will fight for their patients.

10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Rads
8/1/12 Started Perjeta with the Herceptin
10/12 Scans said NED for first time
Scans every 6 months
5/15 Began UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta. Staying on Herceptin. Still NEAD.
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Old 07-27-2017, 02:17 PM   #4
Kathy T
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Join Date: Aug 2006
Posts: 78
Re: Insurance Frustrations

Hi Tracy, I have Aetna and they have been covering Herceptin and Perjeta for me the past 4 years. I hope this is not a new policy.
Kathy T
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Old 07-27-2017, 07:28 PM   #5
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Location: 'Burbs of Atlanta, GA
Posts: 166
Re: Insurance Frustrations

I am sorry you are having to deal with this stupid game the insurance companies like to play. I work in a doctor's office. This is what you do - Contact your doctor's office and find out if they have received the same documentation you have for the coverage denial. If so, in the documentation, the may direct your doctor to do a prior authorization for the prejeta and herceptin. Otherwise, they may ask for a peer to peer consult - between your doctor and a doctor on staff at Aetna (which when you think about it, is a total insult). Then the next step is the total appeal process. Whatever you have to do, keep pushing them - in my experience the wheel that squeaks the loudest gets the grease. Don't stop till you get what is rightfully your right to health coverage. Sorry if I sound too militant.
Pam P. S. - If I remember correctly there is plenty of assistance to reduce the cost for herceptin and perjeta - and it doesn't matter what your household income is - At your doctor's office, they may have a social worker on staff and I found they could be very helpful and informative.
[FONT=Tahoma]Dx 12/14/2012, IDC, 2cm, Stage II, Grade 2, 4/5 nodes, ER+/PR+, HER2+[SIZE=2][COLOR=Blue]
Surgery 12/28/2012 Lumpectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)
Chemotherapy 02/06/2013
Herceptin, Carboplatin, Taxotere Started 6 rounds on 02/06/2013 Herceptin
Finished chemo - May 22, 2013
Radiation Therapy 06/12/2013 - 36X External
TM Marker - 13 October, 2013
TM Marker - 15 November, 2013
Annual Mammagram - 3D - Both Breast - CLEAR!!!
Colonscopy - 1st-Clear - November 18, 2013
CT Scan-Results-Clear - November 27, 2013
BC Diagnosis-1 Year - December 14, 2013
TM - holding steady at 15 - December 24, 2014
TM - 24.2 - January 12
Herceptin Treatment - Last One-February 4, 2014!!!
TM - 3.7 - February 4, 2014
MRI & CT - February 21, 2014 - All Clear
NED - and my doctor said - "well, it looks like you are NED - your MRI and CT are clear - Febuary 25, 2014
TM - 18.2 - February 21, 2014
Port Removed - Scheduled for Wed, March 19, 2014
Port Removed - Yeah!!! I feel lighter already!!!
TM - 15.3 - March 25, 2014
Diagnostic 3D Mammogram - Rt Breast - All Clear!!! - Tuesday, May 13, 2014
TM-15.5 - June 25, 2014
Diagnostic 3D Mammogram - Nov. 2014 All Clear!!!
Diagnostic 3D Mammogram-Rt Only-May,2015-All Clear!!!
Diagnostic 3D Mammo-Annual-Nov 2015-Right Clear!!! - Left Breast-found 5 mm CYST. Aspirated - all clear!!
TM - Nov 2015 - 18.2
NED-December, 2015 - 3 Years NED!!!
TM-Feb 2016 - 13.7
TM-June 2016 - 13.3
TM-Oct 2016-10.0
Annual 3D Mammo-Nov, 2016-All Clear!!!

Annual Mammogram - November 2017 - ALL CLEAR. i AM 5 (YES) YEARS OUT!!!

NED - 5 YEARS - DECEMBER, 2017!!!
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Old 07-27-2017, 10:31 PM   #6
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Posts: 277
Re: Insurance Frustrations

The suggestions Ive read all are excellent. Let me add one more aggressive. It is beyond moraity and sickness thathealthinsurance companies can practice legal murder. Since the legal system protects them you have to go around it. If necessary, contact the local news agency and see if your situation will be discussed on TV. Its not a question of shaming them as they are beyond feeling any shame. Bad publicity might hurt their incomes and this is something that they will respond to

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Old 07-28-2017, 02:41 AM   #7
Paula O
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Re: Insurance Frustrations

I'm so sorry you are going through this frustration and the scary scenereo of an insurgence company denying coverage of Herceptin and Perjeta, Tracy. Yikes! I hope you can get a hold of the right people pronto who can resolve this quickly for you and that there is no delay in your August 8th treatment. Please keep us posted.
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Old 07-28-2017, 10:07 AM   #8
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Re: Insurance Frustrations

Traci, this is shameful and morally wrong. I hope you have someone to fight for you.
hugs and love
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Old 07-30-2017, 05:24 AM   #9
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Location: Oregon
Posts: 667
Re: Insurance Frustrations

Tracy, no one deserves this anguish and frustration. I hope you have someone close to you to help you make these calls. Thank goodness the sisters here have some great advice. I learn from this site every time I visit. I am hoping and praying that your oncology office will go to bat for you. How about the insurance commissioner of your state? Keep a good log of everyone you talke to in case you need to sue Aetna later. Love and support coming your way. We are all behind you❤️

Found my own lump in the shower
April 06 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 3.2cm
Chemo first: AC/Taxol over 16 weeks
Bilateral Mast Sep 06, 3 of 14 lymph nodes pos, 33 rads
1 year of Herceptin completed Dec 07
11 years NED since April 2017
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Old 07-30-2017, 12:24 PM   #10
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Join Date: May 2014
Location: San Diego
Posts: 409
Re: Insurance Frustrations


I feel for you. I have Aetna insurance also. I had no problems getting both drugs approved although I only received them for a year. This is the standard of care for non stage 4 cancer. What is the reasoning for them denying coverage? It seems that the standard of care for stage 4 is that both drugs be given indefinitely. It certainly seems that this is a medical necessity. They need to give you a clear reason why they are refusing to pay.

I bet you will get these drugs covered. Somebody must have made a mistake. I remember getting a call from an Aetna employee (she claimed to be a nurse) early on in my diagnosis nd asking me if I was told I was "terminal". I was shocked and I had to convince this Aetna employee that I WAS NOT TERMINAL.

Good luck to you Tracy. You don't deserve this!

Take Care,
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 08-05-2017, 09:37 AM   #11
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Posts: 537
Re: Insurance Frustrations

Had a talk with Genentech and am working on getting them to float me my vials until we can get this mess straightened out. Still getting no where with Aetna though my oncology office is on point with them. I have written both, Maine's Senators and both Congressman too as well as my local representative and Maine's AG. Maine's AG and my local rep are the only ones to have responded so far. They both directed me to the Insurance Commissioner. I am still frustrated. I don't understand how Aetna can adjust the formulary to preclude standard of care medications.

Thanks for all the good ideas and support. I will keep you posted.
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Old 08-24-2017, 06:50 PM   #12
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Location: LA LA Land
Posts: 1,488
Re: Insurance Frustrations

I just saw a study online, thru clinical trials .gov that was a generalized targeted therapy study. I cannot seem to find it - it was in the last couple of days. It was shared on FB, thru maybe?? Army of Women. It was a study of different targeted therapies, very broad based, I for sure recall the her2 arm was just herceptin and Perjeta. I'm very foggy this week, but maybe you have better googling skills? I even tried to save it, but then got distracted. Hope you can find or ask your online community if anyone recalls the study. I'll keep looking, too!
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, to remove skin mets. Not able to get clear margins. So schedule another surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line – cut out, cut out, cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable. New onc orders PET/ct & Brain MRI to re-stage me.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 trial but then 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST GAMMA ZAPPA continue HAPZ
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 yrs stage 4. [/COLOR][/B]
"FAILED" PETscan on 4/2/13 (WTF)
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue Herceptin, PERJETA, xgeva. Adding back Avastin to see if lungs will go quiet
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1 and due for MRI brain check (check please!).
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down: CA15‐3=46.9 CEA=12.3 CA 27.2=79 SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
(20 years from original diagnosis) July 2016 - continue HAP plus Xgeva. Not NED but not DEaD.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
December 2017 - Progression and infusion reaction to herceptin, getting eval for desensitization protocol for trastuzumab and going to switch treatment
JAN 2018 - weighing KADCYLA v TAS116 clinical trial. UGH.
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Old 08-31-2017, 04:10 PM   #13
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Join Date: May 2014
Location: San Diego
Posts: 409
Re: Insurance Frustrations


I noticed on your signature that Aetna approved H&P through February 2018! So glad to read that. It just seemed completely unreasonable that they could deny treatment that is the standard of care for this type of cancer. It is so unfair that you've had to deal with this in addition to keeping yourself as healthy as possible. Stress like this isn't what the body needs.

Take care,
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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