Getting approval for Tykerb?
 

Just reading posts about those of you on Tykerb and having to get approval from GSK for it. My oncologist just wrote me a prescription for it and told me to take it to my pharmacist. He said they would have to order it and that if my insurance gave me problems paying for it, let him know. I was planning on taking it with herceptin as a preventative (not with Xeloda). If you have to have approval and do paper work and all, why would he just write me a prescription for it. I'm just confused as how to get Tykerb and a little confused as to what the heck my oncologist is doing...sherryg683

Dear Sherry,

I've been just through this.
You or your doctor will have to download/print a 2 page application form, which you fill out, put your insurance info on it then your doctor faxes it to Tykerb.
They (GSK) are supposed to talk to your insurance company then it'll be decided who'll have to pay for it. (This is the stage I'm at right now.) This is what they told me at the Tykerb Cares 800 number. This is the website:
http://www.tykerb.com/
And this is the form that I used:
http://www.tykerb.com/includes/tyk-cares-form.pdf
I got to this by googling: Tykerbcares
On the other hand maybe your pharmacy will be able to order it for you too.
About prescribing it with Xeloda my understanding is the same that your physician has the right for off label use.
Let us know how it goes!

Wishing you the best of luck,

Odette

Hi Sherry (and Odette),
I also have mets to the lungs; altho I have been NED for 3 years post mets diagnosis and with maintenance Herceptin. I have been thinking about taking Tykerb preventatively. How did your doctor happen to prescribe it? Did you suggest it? Or did he? How did conversation unfold?
Thanks for sharing.
Kim from CT

It was my understanding that only a few select pharmacies were able to order Tykerb. You can't just take it to any pharmacy to have it filled.

The Tykerb Cares program hooks you up with the pharmacies that are in the network and are allowed to order it.

Does anyone have any information that differs from this?

Kim, I brought it up to my Oncologist and we have been discussing it for quite some time. He said he's not sure if it would be beneficial to me or not but was willing to prescribe it if I wanted it. It's so new I guess they don't know, I still haven't discussed how long I would be on it with him, that was something I forgot. And today when I went in for my Herceptin, one of the administrators of the clinic came to me and told me that I would have to get Tykerb from a select pharmacy. She had all the paper work filled out and said that the pharmacist would contact my insurance and see how it would be paid and then contact me. If my insurance denied it or gave me any grief then the folks at Tykerb Cares would file an appeal with my insurance to get me on it. So now I am just in the wait. ..sherryg683

Sherry,

i have gms insurance which is a midlands choice ppo. My onc wrote a letter of necessity to my insurance. They then said they would pay 80% of it due to it was a out of formulary drug. My 20% is 900$ a month!! I'm trying to find a advocacy place to help pay for the copay. i'm in the process of doing that. The only place my insurance would let me get it at was Pharmacare. Its a big prescription place. I haven't ordered it yet

Tykerb after progression on Herceptin
 

Hello Kim,

The reason my oncologist is putting me on Tykerb/Xeloda is that I had progression on Herceptin. I only had about 4 months on Herceptin and I had the recurrence in the neck. Now, I had radiation for that, which was successful, (so officially I have no measurable disease) but my second opinion doctor at MSKCC recommended this as a preventive measure.

At first my local oncologist was totally against it (it is not standard procedure) but since I got a third opinion which also said that Tykerb and Xeloda MAY BE helpful, he is OK with it now. I still hate the thought of another summer on chemo though.
Now waiting on my insurance approval it's been a week or so.

Kim, I understand your question but probably there is no one in the world that can see into the future whether you would be better off taking the T drug or not? Maybe you will never have a recurrence ever again! It is great that Herceptin worked so well for you!
Do you go to a place for second opinion?

Heaps of luck, best wishes, prayers,

Odette

Dear Odette and Sherry,
Thank you for your words of advise! I have been flirting with the idea of asking to take it preventatively, but after reading your words I think I will hold off. I am thinking it might be wiser (for me) to keep it in reserve as there is also some thought that we build up resistance to different drugs and I guess i don't want to hasten that if I don't need to. That said, Tykerb absolutely seems to be the best route for you, Odette, especially with your fast reocurrance.
Odette, I love reading about your diet. I made a serious effort to eat raw veggies; and have since moved to being a vegan. How is the macrobiotic diet? Are you still able to stick with it? What is your motivation?
Love Kim from CT

I got a call from Tykerb Cares on Friday (pretty fast since my oncologists office sent them the paperwork on Thursday). The representative said that they had contacted my insurance and that I was covered for this medicine. She said that some pharmacy (didn't remember the name) would be contacting me about the benefits and getting the drug to me. By benefits, I guess they mean my copay. When I mistakenly sent the prescription to my local pharmacy, they checked and told me that my insurance said the co-pay would be 20.00. Don't know if that's correct or not but that would be wonderful. My husband works for Tyco and they are self insured through Blue Cross. Since this is such a big company we have great insurance. They have never blinked an eye with any of my treatment or my regular PET scans. I am hoping my co pay will be reasonable because if it is too high, I don't know if I will be able to do it as a preventative. Michelle, how long are you going to stay on it. I am thinking about 3 months. ..sherryg683