Insurance Company Does Not Want to approve TYKERB - Page 2

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

IRENE FROM TAMPA · 10-14-2009, 04:04 PM

Sheila

I am so sorry to hear what you are going through. I can completely understand, as fighting all of this red tape is something I have had to undergo lately with trials.

Since I was kicked off of the DMI trial due to my bilirubin (and my latest blood work showed it is now down to normal, I am beginning Herceptin long with Tykerb and my insurance company did not give me any trouble just with the tykerb. I did not know that it has to be in combination with Xeloda.??

I wish you all of the luck in getting it. Like the others have said, have your onc. check on it for you.

I am so angry myself Sheila. I did so well on the DMI and since I have been off, I now have 6 tumors back in my liver. I understand Genetech's position, but give me a break. I found something that shrunk 16 tumors (never happened to me before ) and now look. My nerves are so frazzled that I am on the verge of tears always , so I know what you are going through.

Take care my friend - there will be a resolve for you.

10-14-2009, 04:39 PM

Under these absurd circumstances recommend you take the rx for both, take the one you want and give the other to someone else here that needs help. I don't doubt they are here.

Anyone heard of the underground network that tries to pass on unused drugs to those in need?

Karen Wheel · 10-22-2009, 09:49 AM

Sheila - hang in there - wow - sounds like a bunch of stupid people at the insurance company!
I have to thank god, again, that I live in Italy with free health care and my oncologist dictates what I get --- very cool!

Hang in there - something will give-
Joe's on it now!

;-)
Karen

Carolyns · 10-23-2009, 11:00 AM

Hi Sheila,

I hope that you are getting somewhere with this fight.

Please forgive me if you have already gone into this but can you please explain why they can prevent your doctor from prescribing Tykerb alone?

You said, "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.....

I know this is happening all over the place (because it happened to a friend of mine) but what is the justification for saying no if Medicare approves? Is it because it is an oral drug. My heart breaks for you in this fight (it is SO WRONG) and I am not sure if others realize what a big problem this is becoming for us. Understanding more may help us be better advocates.

Love, Hope, Peace, Carolyn

IRENE FROM TAMPA · 10-23-2009, 02:52 PM

Hi Sheila

I am so sorry for what you are having to go through with all of this. --

I am a little confused as to the refusal.

Do you have Blue Cross Blue Shield as your insurance?

I also have Blue Cross (blue options plan) with my company. My onc called RX -to - Go and placed the order, they inturn ok'd if covered by Blue Cross who said yes and I received immediately. I don't really think that the onc or the pharmacy has the call to refuse- it has to be the insurance company. I do not understand how the Pharmacy co. can refuse if your insurance approves.

I know this all can be so fustrating, but just wanted to clarify that point for myself since I am so frustrated for you.

Good luck my friend

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

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.

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?