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Old 08-14-2009, 03:15 PM   #1
jml
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AAARRGHH!! DENIED financial assistance by Tykerb "CARES & CANCERCARE

UGH!
Can someone explain to me the logic behind being DENIED any patient assistance/access to Tykerb or other drugs on the basis that I do not already have prescription coverage???
But if I did have coverage I would be eligible for their assistance?

IS THIS NOT COMPLETELY BACKWARDS & TOTAL NONSENSE or AM I CHEMOCRAZY?

If I had prescription coverage, I may not need financial assistance or free drug!

I am so frustrated & upset by this whole process of applying, pulling all my financial records together, supplying a statement about why I need financial assistance, having to wait for my doc to complete their share, etc only to be DENIED assistance when I need it most, is ABSURD!
And then speaking to the Tykerb "Cares" rep, only to have them say "we're not denying you. you just need to apply to a different program" and start the WHOLE PROCESS OVER AGAIN makes me SO ANGRY!

When the rep said, "I understand your frustration...", I EXPLODED and said "NO, YOU DON'T. AND I HOPE YOU NEVER DO. I am asking for your help so that I have access to TYKERB to treat MBC, not Latisse because I'm trying to grow longer eyelashes."

I'm so dejected & disheartened. I can not afford the $1500/week out of pocket for Tykerb + Xeloda (who can after 7+years of being financially ravaged by this disease?!)

So what now??
I go back to older drugs that are covered under my general medical plan, even though I've progressed on Herceptin, Gemzar, Taxol, Navelbine?

Has anyone had any luck with any of the "assistance" programs?


Signing off to pour myself a GIANT glass of wine...
yet trying to Keep the Faith~

Jessica
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Old 08-14-2009, 05:35 PM   #2
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Re: AAARRGHH!! DENIED financial assistance by Tykerb "CARES & CANCERCARE

Can't tell where you live but Mississippi has an organization called Pink Ribbon Society that helps with bills. Maybe not to the magnitude of $1500/week but some (and if you find other organizations it could add). Unfortunately this organization is restricted only to a list of counties within Mississippi. I have more information if it would apply to you.
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Old 08-14-2009, 05:42 PM   #3
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Re: AAARRGHH!! DENIED financial assistance by Tykerb "CARES & CANCERCARE

Jessica, I have no helpful incites, but I am hurting with you and for you in this plight to obtain the med you need. I will pray you find a way.
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Old 08-14-2009, 06:26 PM   #4
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Re: AAARRGHH!! DENIED financial assistance by Tykerb "CARES & CANCERCARE

Jessica,

Your post has been forwarded to our contact at GSK. She has been very helpful in the past.

Regards
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Old 08-14-2009, 06:27 PM   #5
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Re: AAARRGHH!! DENIED financial assistance by Tykerb "CARES & CANCERCARE

How horrible, to have to deal with this on top of everything else. So you applied for one program but you might be eligible for another and you have to start over? Does anyone in these jobs actually want to take some responsibility?

Anyway, I would go on line maybe to the American Cancer Society or the Lance Armstrong Foundation and see what they suggest, seems like they both have some strategies dealing with this.

Don't want to get people upset about the need for health care reform in this country, but this is another example.

Enjoy the wine.
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Old 08-14-2009, 09:33 PM   #6
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Re: AAARRGHH!! DENIED financial assistance by Tykerb "CARES & CANCERCARE

If you already have not done so, assign one of your favorite nurses and keep her in your loop. She will be a contact of sorts at the doctors and will be the single person there helping you with things like this. In the meantime, your post has been forwarded by Joe so those wheels are turning. Do not give up yet, stay strong...you are going to need it when the Tykerb shows up in the mail (smiling).>>Believe51
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Old 08-15-2009, 03:52 PM   #7
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Wink Re: AAARRGHH!! DENIED financial assistance by Tykerb "CARES & CANCERCARE

Have you tried Partnership for Prescription Assistance?
They have a website, so if you do a search on Yahoo or Google you will find it. From there you might be able to find the contact nearest you. Good luck.
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Old 08-16-2009, 04:14 PM   #8
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Re: AAARRGHH!! DENIED financial assistance by Tykerb "CARES & CANCERCARE

Jessica: Are you perhaps eligible for the T-DM1 trials? Just a thought. Hope things go your way!

Darlene
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05/12/08 HERCEPTIN EVERY 3 WKS
08/22/08 BRAIN METS! 8 <5MM
09/17/08 CYBERKNIFED BRAIN METS
10/20/08 BRAIN METS SHRINKING
12/29/08 BRAIN SCAN SHOWS 1 LESION GONE, 7 SHRINKING & STABLE, 1MM ? SPOT
01/16/09 LIVER REOCUR-XELODA/HERCEPTIN
03/02/09 BRAIN SCAN 2 LESIONS GONE, 5 STABLE, 1MM ? SPOT STILL A ?
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06/08/09 STUPID BRAIN HAS 3 LESIONS
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07/01/09 LIVER REGRESSION NO NEW METS
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11/11/09 GEMZAR/HERCEPTIN FOR LIVER PROGRESSION
03/22/10 BRAIN MRI GOOD-3 SMALL NECROSIS LEFT FROM ORIG 11!!
03/26/10 CHANGE TO NAVELBINE/HERCEPTIN 3 LIVER LESIONS PROGRESSING IN SIZE
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Old 08-17-2009, 10:52 AM   #9
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Re: AAARRGHH!! DENIED financial assistance by Tykerb "CARES & CANCERCARE

Jessica,

Please call 760-602-9178 ASAP for help with your problem.

Regards
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Old 08-17-2009, 04:53 PM   #10
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Re: AAARRGHH!! DENIED financial assistance by Tykerb "CARES & CANCERCARE

Joe has given you the most valuable info... best of luck. But here is the link to "commitment to access" for GSK oncology drugs. Maybe it will provide extra info for you as well.

http://www.CommitmentToAccess.com/about/faqs.html#b

My cancer clinic has a pharmaceutical advocate who helped me wind through the maze - which I think is required by GSK. Let us know how it all works out.
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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.

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Old 08-18-2009, 10:17 AM   #11
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Re: AAARRGHH!! DENIED financial assistance by Tykerb "CARES & CANCERCARE

Thank you everyone for your kind responses, advice and support. You guys are always here to "talk me off the ledge" with just the right things to say & do.
And thank you so much, Joe for passing on my note to GSK.
I had to take a step back & just not deal with it for a couple of days as I was (obviously) getting too emotional about the whole thing. Fortunately, this is my 'off' week from Xeloda & I've managed to find some room on my credit card for the Tykerb for this week.
I'm confident that this will all be resolved & I will have access to the drug, eventually...I just have to stay focused, do the paperwork & BE PATIENT!

Thank you again my Her2 Family of Friends~

Keeping the Faith!!!

Jessica
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Old 06-29-2011, 10:34 AM   #12
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Re: AAARRGHH!! DENIED financial assistance by Tykerb "CARES & CANCERCARE

This is horrible. It really doesn't make sense to me. I had a friend who ran into the same problem when she applied for assistance. I am praying for you, and hope that you find a way to get the help that you need. Best wishes. I am wondering if anyone has ever been to Dr. Robert Goulet? Is he a good doctor? Thank you.
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Old 06-29-2011, 11:21 PM   #13
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Re: AAARRGHH!! DENIED financial assistance by Tykerb "CARES & CANCERCARE

jml's post was from 08-18-2009. I suspect Tykerb cares came through
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Old 07-01-2011, 04:34 AM   #14
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Re: AAARRGHH!! DENIED financial assistance by Tykerb "CARES & CANCERCARE

Jessica is currently on PI3Kinase+Herceptin study after being booted off T-DM1 (after 6 months):

http://her2support.org/vbulletin/sho...745#post252745
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Old 07-02-2011, 04:37 AM   #15
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Unhappy Re: AAARRGHH!! DENIED financial assistance by Tykerb "CARES & CANCERCARE

I just heard that our insurance does not cover tykerb.Herecptin is covered a it is administered IV.They rejected it once and I went through the cancer aid society .Then they gave the detailed explNtion saying only hospitalisation is covered.Looking out for other policies.
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Taxotrne Zylotec started 16th March
Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July
Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin
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Old 08-22-2011, 04:54 PM   #16
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Re: AAARRGHH!! DENIED financial assistance by Tykerb "CARES & CANCERCARE

Thank you all for sharing, my oncologist treats me like Dead Woman Walking. You are so uplifting.
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Old 08-22-2011, 04:57 PM   #17
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Re: AAARRGHH!! DENIED financial assistance by Tykerb "CARES & CANCERCARE

Oh, I am undecided on Tykerb as it is not covered by my insurance and the co-pay is $1600 a month. I have to have $600 out of pocket on meds to qualify to submit a request for financial assistance. More absurdity! I wish you great speed in getting your Tykerb.
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Old 08-25-2011, 11:01 AM   #18
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Re: AAARRGHH!! DENIED financial assistance by Tykerb "CARES & CANCERCARE

My daughter Emily at age 31 was diagnosed with Stage 4 bc. She has been doing well in treatment for 20 months. Two weeks ago, a PET/CT scan showed progression w/ 3 new lesions. Her onc added tykerb to her regimen of herceptin and tamoxifen. Her insurance covers 50%, so her co-pay for a month of Tykerb is $1800!!!! Except for 4 weeks off for mastectomy and liver resection, she has worked. Therefore her income is too high to qualify for Tykerbcares (although she would qualify if she lived in Alaska). She does work in New york city and you'd think the income level there would carry the same weight.

It is just crushing that along with everything else, she is faced with this financial blow. We have contacted at least 13-14 foundations without much luck, many said they were out of funds for breast cancer. I am asking if there is a contact at GSK that could hear our story and give assistance.

Thank you,
Janet (also a bc survivor diagnosed 9 months after Emily)
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