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Old 08-31-2015, 10:23 AM   #1
Missyw
Senior Member
 
Join Date: Sep 2006
Posts: 57
Angry CVS Caremark Denying Herceptin Coverage

Hi Everyone,

I just received a letter from CVS/Caremark stating they no longer cover Herceptin unless it is in combination with current chemotherapies (only three types accepted). In other words, no long term use of Herceptin is allowed.

I have been on this life saving drug for about 9 years. I have been NED for five years. Devastated doesn't come close to my emotional state. I am obviously appealing the decision but I don't know how I can continue to receive the Herceptin pending my appeal. My Attorney General's office (MD) indicates there is no legal obligation for an insurer to continue paying for medication while an appeal is pending. Has anyone battled CVS/Caremark and won? If you have any suggestions for resources to help with the fight let me know. I can't believe insurance companies can make life and death decisions so arbitrarily?!
__________________
Missy W.

Diagnosed 1/06; Her-2, er/pr+
lumpectomy
4 Rounds A/C
tiny area of interest in liver - watching
12 rounds of Taxol w/ Herceptin
tiny area cleared - Stage IV (because area responded to chemo)
Herceptin weekly
27 rounds radiation
NED 8/06
10/06 oopherectomy
Arimidex
1/07-7/07 Vaccine Trial - UW Seattle
3/09 liver met back
3/09 Navelbine, Herceptin Aromasin
6/09 Liver Resection
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Old 08-31-2015, 12:17 PM   #2
donocco
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Join Date: Oct 2013
Posts: 474
Re: CVS Caremark Denying Herceptin Coverage

Missy

One thing you can do is to contact your local news-station and see if they will interview you on television. The news will do anything for an attention getting story to increase ratings. If you can humiliate Caremark they may back down, at least in your case fearing financial loss with bad publicity. There may be other suggestions.

Paul
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Old 09-01-2015, 07:25 AM   #3
Jaimieh
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Join Date: Mar 2009
Posts: 126
Re: CVS Caremark Denying Herceptin Coverage

Missy~ I would call your oncologist, your primary insurance and lastly Caremark (I have a very LOW opinion of the people there). They don't just get to decide that they are discontinuing a drug because they don't want to pay. I hope you get your herceptin.
__________________
Diag. 12/24/08-
IDC 1.3 er-/pr- HER2+
Grade 3 0/2 lymph nodes
no angiolympathic invasion

Bi-Lat. Mast. 1/8/09
Exchange scheduled for 6/17/09
Lost implants due to unknown reason :(

Hip Flap 1/26/2010 in NOLA :) LOVE EM'

TCH x6 (6 done and I am hoping to never do it again )

Well so much for never...
Local recurrence May 25,2014 is left over breast tissue.
April 2 , 2014 lumpectomy
April 28, 2014- June 9, 2014 start AC x 4
Taxol x12
Perjeta x 6
Herceptin x 18
And 33 rads just for fun. NOT!!!
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Old 09-01-2015, 11:36 AM   #4
jellybean
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Join Date: Oct 2009
Posts: 46
Re: CVS Caremark Denying Herceptin Coverage

How awful! This is crazy. I would call your oncologist's office to see if he or she can help. Maybe Genentech could help you with the costs until you get the decision overturned. They have various patient assistance programs. You might also try posting on the bcmets.org board. Maybe someone there has an idea. It seems to be standard practice to stay on Herceptin, so it seems CVS is out of line. Isn't the decision up to the insurance company? I would call them, too.
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Old 09-02-2015, 12:13 AM   #5
SoCalGal
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Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
Re: CVS Caremark Denying Herceptin Coverage

Don't panic - there are options.
1. contact Genentech's Patient Assistance Program. Genentech can provide herceptin to your doctor's office. There is a simple form for you to fill out and one for your onc, I think your income needs to be under $100,00.00 per year. Your Onc's office should be familiar with the form/format.

2. In addition, have your oncologist write a letter/or contact directly the "independent reviewer" that the insurance usually uses to review these special cases. Your Onc can give concrete reasons why you can't do chemo right now, due to lingering cognitive skill reduction, residual neuropathy and mouth sores that don't easily resolve, and how the consensus is to continue to hold on chemo infusion, but continue CHEMOTHERAPY of Aromasin, etc. Your doc should know just what to say to them.

It's gonna work out - I am sure!!
__________________
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, remove skin mets, and will have 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. surgery to 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.
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 but 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.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
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 continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
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.
Jan 2014: CONTINUING on HAPX…
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
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
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 HPX. Adding back Avastin
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
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
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
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
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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