Insurance Company Does Not Want to approve TYKERB - Page 2

Pam P · 10-08-2009, 04:56 AM

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

Joe · 10-08-2009, 07:25 AM

To be presented at the San Antonio Meeting:

9:30-11:15 GENER AL SESSION 5– Exhibit Hall D

9:30

61. Updated Survival Analysis of a Randomized Study of Lapatinib Alone or

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

Breast Cancer Progressing on Trastuzumab Therapy

Blackwell KL, Burstein HJ, Sledge GW, Stein S, Ellis C, Casey M, Baselga J,
O’Shaughnessy J. Duke University Medical Center, Durham, NC; Dana-Farber
Cancer Institute, Boston, MA; Indiana University Cancer Center, Indianapolis, IN;
GlaxoSmithKline, Collegeville, PA; Vall d’Hebron University Hospital, Barcelona,

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

Patb · 10-08-2009, 09:01 AM

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

Jackie07 · 10-08-2009, 09:22 AM

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.

TSund · 10-08-2009, 04:44 PM

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

hutchibk · 10-09-2009, 01:33 AM

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

Sheila · 10-09-2009, 05:30 AM

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.

Carolyns · 10-09-2009, 05:57 AM

Hi Sheila,

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

Love, Hope, Peace, Carolyn

julierene · 10-09-2009, 06:32 AM

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

Chelee · 10-09-2009, 12:49 PM

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

Jackie07 · 10-09-2009, 02:12 PM

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.)

chicagoetc · 10-09-2009, 02:57 PM

Sheila,

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

Melanie

SoCalGal · 10-09-2009, 11:04 PM

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...

Lani · 10-10-2009, 10:25 AM

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

TSund · 10-10-2009, 02:53 PM

Is there a neratinib trial for stage 4 persons?

TRS

Rich66 · 10-10-2009, 04:22 PM

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?

Sheila · 10-12-2009, 11:15 AM

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!

Mary Anne in TX · 10-12-2009, 11:41 AM

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

10-12-2009, 11:44 AM

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

Darlene Denise · 10-12-2009, 12:00 PM

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