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Old 01-11-2010, 02:35 PM   #1
Barbara H.
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Please help! Tykerb has been denied by CVS Caremark

I am on my third month of taking Tykerb with Herceptin. Unfortunately, my husband's mail order perscription plan has changed to CVS Caremark. My oncologist sent in the prescription on Dec. 30th and I will run out of tablets by the end of the week. This medication is working for me, and I am totally stressed knowing what Shiela went through. Shiela can you give me some advice. I was on the phone with them today and said that I was going to take some action if they did not send me my prescription soon.
Sadly,
Barbara H. (See below)

Dear Dr. Krop and Danielle,

I was just on the phone to a customer care representative, Ivana, at CVS Caremark (where Care appears not to be a mark of excellence...), who informed me that your long-term prescription request has been denied by Caremark's review board.

According to Ivana, DFCI and Dr. Krop will have to initiate an appeal's process, apparently justifying your medical care decisions. You should have received (or will eventually) a notification of this denial by Caremark. Please request this appeal as soon and as vehemently as possible, since Barbara's supply of Tykerb will only last until next Monday (which is a holiday).
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Old 01-11-2010, 03:18 PM   #2
jml
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Re: Please help! Tykerb has been denied by CVS Caremark

Hi Barbara~

I'm so sorry that you're dealing with this frustration!
I hope your appeal is swift & successful.

I learned that I don't have Rx coverage for this med & as you know, it VERYVERYVERY expensive!!
I struggled to pay out of pocket, while I applied for Pt. assistance, but the process was fairly long & frustrating.

Just in case, GSK has a program called "Committment to Access" that will provide your TYKERB for free.
(The other program "TYKERB Cares" will only offer you CO-PAY assistance - which means, if you dont have Rx coverage, they won't help you.)
You'll need your social worker to initiate the application, but once you are able to provide the appropriate paperwork, they move pretty quickly, and will even overnight the med to you if needed.
Maybe you could get the ball rolling with the social worker while your MD helps you appeal.

I hope this info is helpful.

Good luck & wishing you the best outcome!

Jml
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Old 01-11-2010, 04:09 PM   #3
hutchibk
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Re: Please help! Tykerb has been denied by CVS Caremark

I believe what Sheila had to do was have her doctor write the script for Tykerb and Xeloda (which is the FDA combination they require you to be on to approve the Tykerb as Hercptin/Tykerb is not yet an FDA approved combo), and even though you don't need and won't take the Xeloda (don't tell them that and yes it sounds like a huge waste of money), they should cover it. My pharmaceutical advocate nurse advised and helped Sheila figure out the course of action...

Sheila should be posting on this soon and will be able to give you much more insightful details.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 01-11-2010, 04:28 PM   #4
Sheila
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Re: Please help! Tykerb has been denied by CVS Caremark

Barbara
This sounds so familiar, as I had to deal with CVS Caremark...I went through GSK's programs, and they were of no help. All that happened was more time was wasted. My Oncologist had to write an appeal, which they denied, and then I wrote my own appeal, and I was approved. Please send me a phone # via private message...I can fax you all the paperwork I used and you can see what my appeal looked like and who I sent it to.
By the way, mine was ordered as a solo agent to be taken with Herceptin therapy, and WITHOUT Xeloda. My onc. would not order the Xeloda just to get it approved, but if yours will, thats another way around it!
__________________
"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

Last edited by Sheila; 01-11-2010 at 04:30 PM..
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Old 01-12-2010, 10:32 AM   #5
WomanofSteel
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Re: Please help! Tykerb has been denied by CVS Caremark

I am curious to see what is going to happen to me now. My onc is switching me to tykerb/xeloda due to yet another progression. I also have CVS Caremark. I am anxious to see if they approve this since Sheila said they would have for her. Good luck Barb.
__________________
dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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Old 01-12-2010, 10:49 AM   #6
Sheila
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Re: Please help! Tykerb has been denied by CVS Caremark

WOS
You should be able to get the Tykerb/Xeloda with no problems..its when they want to give the Tykerb with Herceptin that CVS has issues....Barb emailed me and I faxed her husband 23 pages of appeal info I used....hoping it works for her as it did for me!

Hoping the Tykerb/Xeloda is a good new combo for you WOS~~~
__________________
"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 01-12-2010, 03:36 PM   #7
Chelee
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Re: Please help! Tykerb has been denied by CVS Caremark

I do not want to take this thread off topic...but looks like Shelia has helped her out. But can someone tell me WHY CVS or any pharmacy would have a say in what drug your allowed to have? The drugs/medications we are prescribed are from our doctors...not our pharmacy...so how are they allowed to stick their nose in our business?

I'm using CVS...but I pick up my meds at the store so far. But if you use their prescription mail order plan then they can deny your meds/drugs? This doesn't seem right...these drugs can be a matter of life and death. How are they allowed to do this? We have enough stress in our lifes without worrying about getting a notice at the last minute saying you can't have your prescription. Unbelieveable.

Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 01-12-2010, 04:09 PM   #8
Barbara H.
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Posts: 951
Re: Please help! Tykerb has been denied by CVS Caremark

Hi Chelee,
I spent a lot of time on the phone yesterday to Caremark.
Apparently when my husband's work switched to Caremark, they authorized this pharmacy to only approve drugs that meet the protocol. Therefore, I was denied. My husband is currently discussing the issue with his work, and my oncologist is also appealing the case. Sheila has also sent me information that should help my personal appeal, if this is not solved in the next few days. I am also considering switching to the health care plan my school system offers. Up until now I didn't want to do that in case I had to leave work.

I believe that this could be a major issue for all of us in the future as more targeted therapies are developed that may only be available in the form of tablets.

Best regards,
Barbara H.
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Old 01-12-2010, 08:09 PM   #9
StephN
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Re: Please help! Tykerb has been denied by CVS Caremark

Gee, Barbara -
I am appalled at your treatment by a *gosh darn pharmacy.* Guess I assumed you had your health plan through your school, but see where if you had an alternative that might be better.

Your time to fight this is limited due to your work, so I hope you will have a resolution quickly!

The health plans need to reclassify or create a NEW classification for some of these new drugs.

Best thoughts coming your way on this one.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 01-13-2010, 06:33 AM   #10
WomanofSteel
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Re: Please help! Tykerb has been denied by CVS Caremark

Thanks Sheila, right after I read your post I got a call from Caremark saying it was approved. It is going to cost me 1,101.00 for the 1st month. After my deductible is reached and my out of pocket, the cost should come down. If not I will definitely need some help paying for this.
__________________
dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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