Tykerb coverage?

amyj · 11-12-2007, 03:01 PM

Hi all, I'm new here, so hope I'm doing this correctly.
We found out recently that my 67 year old (young!) mother's breast cancer recurred in her liver. She has started a regimen of herceptin, carboplatin and tamoxofin.
Her oncologist already checked to see if her insurance (Blue Cross) will cover Tykerb, but they said they won't.
Did you have the same issue? If not, do you know why? If you did, how did you end up getting it covered?
Also, do you know of a generic equivalent?

Thanks so much. Best wishes to you very helpful women.

-Amy, daughter to Helen.

chrisy · 11-12-2007, 03:48 PM

Hi Amy

I have input to your questions, but first let me say do not lose heart. Many women on this forum are doing well years after liver mets diagnosis. I don't know if this is your mom's first recurrence, it would help if you can provide more info.

The FDA approved indication for Tykerb is metastatic disease that is not responding to Herceptin. I can't tell from your post, but if this is your mom's first time on herceptin, that may be the basis for the denial - that it hasn't "failed". So the standard would be to try Herceptin first, then if it doesn't work, move on to Tykerb. Herceptin is a wonderful drug and could slap down those liver mets very effectively.

There's not much data re Tykerb+ Herceptin used together, so that is an unproven combination and I'm curious as to why that is being recommended. Or his he recommending Tykerb instead of Herceptin? If there's a reason, the insurance co's decision could be challenged.

That said, Herceptin and Carbo is a good combination (although usually I see it with a taxane either Taxol or Taxotere), and with Tamoxifen she's hitting lots of targets - that's good. You want to strike a balance between hitting the cancer hard and minimizing toxicity to your mom.

There is no generic version of Tykerb, but the scientific name is lapatanib.

Good luck, keep us posted.

amyj · 11-12-2007, 04:04 PM

First, your encouraging words are, well, encouraging. It's hard not to think the worst. So thank you very much. You knew just what to say!
This is her first recurrance. She just finished a year of herceptin-only as a "precaution" in December, so we're a bit worried about how soon something showed up.
That said, your comment makes a lot of sense.
I think her oncologist was just considering the next step if the Herceptin doesn't work. In other words, she started her due diligence early.

Thank you again.

Carolyns · 11-12-2007, 04:08 PM

Hi Amy,

Sorry that we must meet this way and all of my best wishes to you and your family.

As Chrisy says, there are many fighting liver mets for MANY years with a very good quality of life. I was diagnosed a while back myself.

I understand as Chrisy does that you must get Herceptin first and progress while on Herceptin to get Tykerb.

Carolyns

hutchibk · 11-12-2007, 05:48 PM

Hi Amy- I believe that all Blue Cross plans have a cap on prescription benefits... mine was $1500 a year, so that is why it didn't pay for my Tykerb... but, once you spend up to that cap amount on all of the other meds that you might need, then you are considered 'uninsured' for the rest of that year, and you can qualify for the free access program from Glaxo Smith Kline through Tykerb Cares. This is how I have had access to Tykerb. Herceptin is paid for under medical benefits, Tykerb falls under prescription benefits.

Is there a patient advocate or social worker at the clinic who can help you weave your way (your mom's way) through the access program? I would be in an insane asylum if I hadn't had an advocate to guide me through! LOL

amyj · 11-12-2007, 07:25 PM

Thanks so much. That's also incredibly helpful. I will look in to an advocate for my mother. I wish none of us had to be on this board, but am already so glad it's here.
My dad just told me they got a call from BS tonight saying they reversed their decision on covering the Tykerb when/if she needs it. Go figure.
But thank you all. I'm afraid I'll be on with more questions soon enough.

Here's to you all.

amyj · 11-12-2007, 07:43 PM

Ooops, Chrisy. I just realized it is Taxotere she's on, not tamoxofin. My brain is going back to her old regimen.

janet/FL · 11-12-2007, 08:47 PM

Hi Amy
I found it a stress saver -- find someone at Blue Cross that seems to know what they are doing and ask them if they would be your contact person at this very trying time.
I had a woman who frequently went out of her way to find answers to my questions. She even hand carried papers from one desk to another to make sure they got to the right person. When I kept getting billed for $12,000 for Nulasta shots, she always reassured me it was just a matter of paper work and that it would be cleared. It was, and her reassurance was certainly helpful in reducing my stress level. Maybe the person who notified your Dad that Tykerb was approved would take on that role.
Hugs, to you and your family

amyj · 11-14-2007, 10:34 AM

That's a great tip, and glad to know there are folks there willing to do that. Thanks so much.

betsye · 12-11-2007, 11:06 AM

Amy: I was just going to post that I have 85 Tykerb pills left over from a prescription that I am no longer taking. (It didn't work for me.) You are welcome to them, if your mom needs them. If you want them, please contact me off-list (betsy@brownhen.com). I will give you until Friday morning to claim them; if you don't, they are free to the first person who contacts me.

I know that Tykerb is really expensive, so please contact me only if your insurance doesn't cover it.

I don't know if this is legal, now that I write it down. All I can say is that the pills haven't been out of the bottle since I counted them last week.

Betsy