Insurance Company Does Not Want to approve TYKERB
 

OK, today is day 9 since Tykerb was ordered, the insurance company, BCBSIL and CVS/Caremark is not wanting to approve because it was not ordered with Xeloda.....gee, I was on Xeloda and failed, I just cant understand why the pharmacy at Caremark is dictating my treatment regimen instead of my Oncologist. In the meantime, the lump in my neck continues to grow...after 4 phone calls today and getting no where, I finally lost it and broke down in tears....now maybe they can give me something for stress while they decide whether or not to approve something to help me fight this damn cancer.
Hoping tomorrow is a better day.

Re: Insurance Company Does Not Want to approve TYKERB
 

Are they completely NUTS?????
Sometimes I think those "guys" live on another planet!
Will your doctor call them? That's what it took a couple of times
for me to continue my treatment!
I'm praying for quick action and someone getting appropriately angry!
Luv ya, ma

Re: Insurance Company Does Not Want to approve TYKERB
 

This is really the limit!! I pray that they will approve it right away and you get some peace. This is so cruel.

Love,
shobha

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila,

While you get your doc to deal with the insurance company, try to see if the drug company, under the circumstances, will consider providing it to you.

Wishing every bit of good comes your way,

A.A.

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila, a friend of mine recently had a similar problem when she tried to get avastin approved without xeloda, she lives in Florida.
In the end she had to take the xeloda with it which was ridiculous as she had spent eleven years on chemo and needed a break.
I can't offer any advise on insurance companies to you, but hope your onc can take it up with them on your behalf??
Why not have him order the xeloda and just not take it but use the tykerb??
I'm sorry you're upset and realize the last thing you need right now is to stress about this!

Re: Insurance Company Does Not Want to approve TYKERB
 

Dear Sheila,
I am sorry the "powers that be" are being such BUTTS! This is the last thing you need to worry about.

There is something called "Tykerb Cares" that should help you. Your doc's nurse may have to get into the act, but I have heard of results from that sector. More phone calling is not what you need, but I know YOU are expert at working these things out.

Has the FDA approved Tykerb ONLY when taken with Xeloda?? What about the gals getting Tykerb with Herceptin, etc?? Puzzling.

Re: Insurance Company Does Not Want to approve TYKERB
 

Shelia,

Hope you get the medicine soon. Maybe the people Stephanie is talking about will help.

Amelia

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila, I am so mad. How can they deny you half a treatment when they are ready to pay for Tykerb AND Xeloda?? Well, if that's what they want, have your Doctor prescribe Tykerb and Xeloda and only take Tykerb. You don't need this kind of stupidity on top of worrying about the treatment. I send you hugs and hope they will realize how ridiculous this is. Michka

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila,

This is SO wrong! Just another way to get around paying for treatment. I wish I had a bottle to send you.

My doctor shared with me how much harder it is getting every day to get what she needs for her patients via the insurance companies. She said she can spend half of her day explaining why she needs to get authorization for her patients. It is like the doctors have to adovcate and prove that we need what we need. I wonder how many doctors just run out of time to fight the insurance company.

I hope this gets resolved soon. It is so wrong.

Love, Hope, Peace, Carolyn

Re: Insurance Company Does Not Want to approve TYKERB
 

It is considered pharmaceutical... so your "medical plan" under insurance that pays for infusion chemo will not pay for it.

Quite simply and disgustingly, this is because MEDICARE doesn't pay for it either. Insurance companies are allowed to, and do (to a lesser degree I promise), follow Medicare guidelines and restrictions and denials. I can't blame them... Medicare has been established as the "coverage model" for the whole system, including private.

Medicare doesn't pay for it under part B "medical plan" (the outpatient part of the Medicare plan).

If you have Part D with Medicare, it pays for it up to the donut hole, which is only about 3/4 of a month's worth, then you carry the responsibility through the donut hole ($3500 I think) until it is covered again.

When this happened to me when I was still on BCBS, my pharmaceutical nurse advocate at my cancer clinic helped me fill out the paperwork to gain access to it through GSK Access to Care, and she finessed the process for me.

Find your pharma nurse advocate and get them to help you.

Welcome to the shape of things to come.

Re: Insurance Company Does Not Want to approve TYKERB
 

Well, the insurance called this afternoon with their "denial reasoning". Seems they will not pay for the Tykerb as it is only approved with Xeloda....if I get the Xeloda, they won't pay for the Herceptin...its a catch 22. Seems that the Oncologists should be dictating our care and not the Pharmacys or the insurance companies! Enough tears for today, tomorrow is another day, and the fight will continue. Keep me in your prayers!

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila, all I can do is reiterate what everyone else has already said. Have your doctor call, and you keep calling, contact the pharmaceutical company, and maybe check with your chemo. nurses and "others". Sometimes they may receive donations of medications that patients no longer need. You hang in there, girl!

Re: Insurance Company Does Not Want to approve TYKERB
 

You're right - your doctor should be making the decision! Assuming she has a rationale for this combo (which I know she does), can she help with providing this, along with whatever data there is supporting this.

maybe Flori or some of the others on this combo can give you some additional ammo as well.

To start, could you get the Tykerb with Xeloda while you're pushing for the Herceptin as well? Even though Tykerb/Herceptin failed you, you may still get some synergy with Xeloda. Think of it as swapping out the Herceptin piece?

Keep pushing for the combo, but you shouldn't be naked. Here's a couple of links that may help support your case.

http://professional.cancerconsultant....aspx?id=42119

http://kinasecentral.wordpress.com/2...-increase-pfs/

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila, please read my post. It has the solution I used when I was in your shoes, and it explains that if the Government doesn't cover it, neither will private in many cases.

I do now get it through Medicare, but under Part D, with the donut hole. And I get it with Herceptin, without Xeloda. Tell BCBS that Medicare Prescrip Part D approves it by itself with Herceptin... that may get their attention. I asked my Onc how we were able to get me on Ty/Herc and he said that since they are each FDA approved, it doesn't matter that the combo is not FDA approved...

Also, send them an appeal letter discussing that Medicare covers it under Part D without Xeloda... cc: your state board of insurance and follow through with a copy to the state board of insurance. That is a pretty effective way to get their attention.

Find out if there is a pharmaceutical advocate at your clinic... mine is a US Oncology affiliated clinic, and my nurse advocate was my lifesaver in helping me gain access to Tykerb. http://www.usoncology.com/portal/pag...nce/A_Patients

Just to clarify, BCBS is denying it through your prescription benefit, right? It's not through your medical benefit?

You can probably get it through GSK Access to Care. Email Joe... there may be a compassionate use angle for you in combo with Herceptin.

Also, they are preparing to enroll for a trial of Tykerb/Herceptin for mets patients... do you qualify?
http://clinicaltrials.gov/ct2/show/NCT00968968

Re: Insurance Company Does Not Want to approve TYKERB
 

Brenda and All,

We are working on this.

Rgards
Joe

Re: Insurance Company Does Not Want to approve TYKERB
 

wonderful... Joe rocks.

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila,

I think the log jam will break with such amazing warriors as Joe and Brenda behind you! Good luck!

Re: Insurance Company Does Not Want to approve TYKERB
 

As if it isn't bad enough that we have this crappy disease to begin with, we have to have the stress of battling it out with insurance companies just to fight it. I hope that the doctor is able to help you. If not, the ladies had some good advice. Good luck!

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila,

You don't deserve this. I would involve your onc to help in getting the recommended treatment without any strings attached.

Joan

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila,

Stinks that you have to fight cancer AND the insurance company, but have the doc write letters, make phone calls, do as Steph says and call for compassionate use. I hope this gets resolved quickly and that you will be able to use that time to play with those wonderful grandchildren of yours. HUGGLES!!!! Take care.

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila - Sorry I have no advice just want to say I hope you and your onc. can get this through the insurance snafu in a hurry. I have a few tykerb left I could send you - call me if it would help. Brenda and others have great suggestions for ways to get this resolved. Sorry you have to deal with this - isn't dealing with cancer enough! Pam

Re: Insurance Company Does Not Want to approve TYKERB
 

9:30

in Combination with Trastuzumab in Women with HER 2-Positive Metastatic

Breast Cancer Progressing on Trastuzumab Therapy

Spain; Baylor Sammons Cancer Center, Texas Oncology, PA, US Oncology, Dallas, TX

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila
I know of one person on the combo and her
insurance pays, it just isn't fair why you can't
be. Keep trying and we will keep you in our
prayers that this will work out and fast. You
have a great team....
patb

Re: Insurance Company Does Not Want to approve TYKERB
 

Really hope something's done soon about this health care mess. Pam's offer is so heartening. I remember reading similar things before. I'm so proud to be a member of this very caring group full of compassionate people.

Sheila, things will work out. Stay with your 'sisters' and know that we are all behind you.

Re: Insurance Company Does Not Want to approve TYKERB
 

That is so crazy. Do you have a lawyer friend that can call them? It is absurd that it takes that, but sometimes that's all corporate America will listen to.

TRS

Re: Insurance Company Does Not Want to approve TYKERB
 

Lawyers can do nothing in this circumstance. You have to go through the channels...

Re: Insurance Company Does Not Want to approve TYKERB
 

Again, thanks t everyone for all the thoughts, suggestions and help. I was on the phone again yesterday 4 times with my Oncologist as she does the appeal process. My day started with a phonecall from Caremark/CVS telling me I WAS officially denied and a letter would be forthcoming. Of course I responded by telling them maybe i can just go to CVS for all my cancer treatments and bypass the oncologist since Caremark/CVS seems to be calling the shots. I asked if they had an infusion room and qualified nurses for accessing my port....dont think they were happy with me at 8am.. Went to hear a speaker last night who is a 3 time breast cancer survivor...she said everything happens for a reason...I am still trying to figure this reason out, but today is a new day....and the fight continues.

Re: Insurance Company Does Not Want to approve TYKERB
 

Hi Sheila,

My thoughts and prayers are with you. I hope you get your meds soon.

Love, Hope, Peace, Carolyn

Re: Insurance Company Does Not Want to approve TYKERB
 

I got Tykerb and Gemzar approved by BCBSTX... Have you had the chance to try Gemzar yet?

Re: Insurance Company Does Not Want to approve TYKERB
 

Shelia, I wish I had the answer for you but unfortunetly I don't. Just reading what your dealing with has blood shooting out of both eyes! This is unbelievable. I loved your comment about going to CVS for your cancer treatments. Ha! Since their obviously in charge seems like a fair question to me. What time to you show up at their infusion room.

I sure hope you can get this resolved soon...what a nightmare. This is far too much stress on you and there is no excuse for it...none of it makes any sense. I just want you to know you are in my thoughts and prayers. I'm hoping today brings an end to this and you get what you need! Sending lots of positive energy your way.

Chelee

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila,

I hope things are improving. Your situation reminded me the frustration I had to get a special contract from my insurance company almost 20 years ago.

My neurologist told me he would only recommend a certain neurosurgeon in town (affiliated with a hospital not covered by my insurance company) to do my brain surgery (ended up to be a 23-hour operation.)

I called my insurance company about the situation - I cried, I threatened, I pleaded, to no avail (couldn't even pass the operator) I was very fortunate to have a library director back then who had had quite some legal experience and got me a lawyer who had just won the Texas Young Lawyer of the Year award.

I remember the sleepless nights. The neurosurgeon, who happened to be of my same ethnic background and had been introduced to me (but I was already dating my husband)when he first moved to town, checked on me right away the day of my diagnosis (he took my call while he's in the operation room when I had told his secretary that it's an emergency - and we waited 3 hours before he finished that surgery and was able to see me.)

Later, while we were struggling with getting hold of the insurance company, he told us that 'they should pay' (I asked him if we should go the 'fundraising' route) and told us to go to the ER if certain signs appear.

Things will work out, now I believe - just a matter of time and stategy [we did not have to sue for the special contract - my boss was able to talk to the VP of the insurance company and persuaded him to OK our request. And to this day she still thinks that I should have sued my family doctors.] I hope (and believe) your situation will be taken care of soon. (It's a good sign that your oncologist is working on the appeal.)

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila,

Is your oncologist advocating for you (i.e. talking to the insurance company)? Or does that not work?

Melanie

Re: Insurance Company Does Not Want to approve TYKERB
 

I get herceptin and avastin thru genentech patient assistant programs. I have no idea why or how blue cross pays for tykerb. They turn down everything else. I would call Tykerb cares and ask about assistance programs. There are many who take only (4) pills not (5) so if you can find four or five of these sisters to send you their extra pills you'd be in business. It is so disheartening to be turned down for treatment options. My turn down letters now include phrases like, "salvage treatments have not been shown...". Salvage! Like I'm a junk yard. Sigh...

Re: Insurance Company Does Not Want to approve TYKERB
 

fresh off the press article--perhaps will help your oncologist with your appeal. Next to last sentence shows those who have previously received capecitabine had shorter DFS and OS when given the lapatinib/capecitabine combo than those who had not.


Ann Oncol. 2009 Oct 8. [Epub ahead of print]

An open-label expanded access study of lapatinib and capecitabine in patients with HER2-overexpressing locally advanced or metastatic breast cancer.

Capri G, Chang J, Chen SC, Conte P, Cwiertka K, Jerusalem G, Jiang Z, Johnston S, Kaufman B, Link J, Ro J, Schütte J, Oliva C,Parikh R, Preston A, Rosenlund J, Selzer M, Zembryki D, De Placido S.
Department of Medical Oncology, Fondazione IRCCS Istituto Tumori, Milano, Italy.
BACKGROUND: The Lapatinib Expanded Access Program (LEAP) was designed to provide access to lapatinib plus capecitabine for HER2-positive metastatic breast cancer patients who previously received an anthracycline, a taxane, and a trastuzumab and had no other treatment options. PATIENTS AND METHODS: LEAP opened globally and enrollment continued until lapatinib received regulatory approval in each participating country. Patients were assessed for progression-free survival (PFS) and overall survival (OS) and monitored for serious adverse events (SAEs). RESULTS: As of 30 September 2008, 4283 patients from 45 countries enrolled in LEAP. The median treatment duration was 24.7 weeks. The most common drug-related SAEs were diarrhea (9.7%), vomiting (4.3%), and nausea (2.4%) and were mainly grade 3 or higher. The incidences of special interest SAEs were decreased left ventricle ejection fraction (0.5%), interstitial lung disease/pneumonitis (0.2%), and serious hepatobiliary events (0.4%). This safety profile is consistent with the overall lapatinib program. The median PFS and OS were 21.1 [95% confidence interval (CI) = 20.1-22.3] and 39.6 (95% CI = 37.7-40.7) weeks, respectively (n = 4006). Subgroup analysis showed longer PFS and OS in patients who had not received prior capecitabine. CONCLUSIONS: These results demonstrate the safety and efficacy of lapatinib in a broader patient population compared with a clinical trial.PMID: 19815649

Re: Insurance Company Does Not Want to approve TYKERB
 

Is there a neratinib trial for stage 4 persons?


TRS

Re: Insurance Company Does Not Want to approve TYKERB
 

Sounds like there are ways to get H/T alone. But I also wonder if there might be synergy between Tykerb and Xeloda that wasn't exploited in previous use. And it seems to be more and more established that cancers continuously evolve..meaning Xeloda might work again now. But..I think you were trying to stay with T/H so you would be positioned for upcoming TDM1?

Re: Insurance Company Does Not Want to approve TYKERB
 

Appeal denied. Joe, I dont qualify for the trial in Chicago at Univ of Chicago...more than 2 prior chemos. My onc. was working on the appeal until late Friday, then today, denied again. I contacted Cancer Legal Resource Center, they are looking into it. Called Tykerb cares and still no response, so back to square one, and now 1 month since any Rx except Herceptin. It wouldn't bother me so much but the lump in the side of my neck truly is growing by the day, and it pulls and hurts to turn my head.
On the bright side, my little Grandaughter Jasmine, who many of you may remember, is going to Disney World in 6 days as her wish from Make a Wish Foundation.... she will be 13 in 2 weeks...so funny that she is very tiny and wears a size 4-5 in childrens, but her head is very small and we had to get a newborn winter hat to fit her tiny head (cranial synastosis)...and it had to be one that looked like something a teenager would wear! When she was nominated for Make A Wish by her Dr., they asked her if she could go on a vacation anywhere in the world, where would she want to go...her answer was to Grandma Cocoa's house..( that is what she calls me)..needless to say, that made my day, my year, my life! She is truly proof that miracles do happen!

Re: Insurance Company Does Not Want to approve TYKERB
 

Ok, I decided! You take the bestest pictures with grandkids on the planet! She's wonderful and oh, so lucky to have her grandma cocoa!
Surely do hope someone kicks your OK for Tykerb in high gear for ya! ma

Re: Insurance Company Does Not Want to approve TYKERB
 

What an awful experience! Until you get the insurance issue ironed out, why not just have your doctor presecribe Xeloda and Tykerb, if that would satisfy the bean counters? You don't even need to take the Xeloda, if he does not think it is advisable. At least you would be treating the cancer instead of waiting. This seems like an easy, temporary fix.

Jill

Re: Insurance Company Does Not Want to approve TYKERB
 

Shelia: Would it be worth dropping the Herceptin, for now, going with the Xeloda & Tykerb to see if you get a result? Some gals get remarkable results on just the Tykerb Xeloda, you may be one of them. Continue the battle in the meantime and hopefully get what you want. If Tykerb Xeloda doesn't do the trick alone then maybe that could be additional info to support another appeal. Remember biological agents usually work better with a cytoxic agent which is probably why they don't want to approve the Herceptin Tykerb only combo.

As I understand it, you can always go back to Herceptin and it will work as well as when you left it.

Just some thoughts, any other chemos you are willing to try with Herceptin instead? Perhaps reserving Tykerb for use in case of brain mets? (I have them and I highly unrecommend them. ) Hope you never do. I think even in the next few months data will begin emerging supporting more widespread use of Tykerb and you may have an easier go of the approval then.

Hopefully TDM-1, Super Herceptin is around corner for all of us!

I am on Tykerb Xeloda and Herceptin for brain and liver since June. It's been a tough combo for me with many side effects and dosing modifications. My modest dosing is helping the brain but the liver is still an issue. Seems the Xeloda is what is needed to shrink the liver lesions so I just upped the dose this week.

Don't let this frustration rob you of good Grandma time and there seems to be other options, maybe this door isn't opening for a reason? Like you, I always still want to know the damn reason!


I'll be hoping you get what treatment you really want and are most comfortable with.

Wishing you well...Darlene