Tykerb Discussion with my onc

[Sherryg683]

I am stage IV, but in remission for over a year. My Oncologist had no problem prescribing Tykerb without Xeloda for me to take along with Herceptin as a preventative. My insurance approved it and I got the Tykerb within a week. My Oncologist did this at my asking and told me that it would be his preference if we waited till we needed it since the Herceptin was still working. I took the Tykerb for a week and had such awful diahrea and rash outbreaks that I took myself off it. I was very, very weak after a week of this. I decided that if down the road I needed it, I would endure this but not until. I didn't want to put my body through this. Your oncologist should be able to prescribe it for you off label if he wants, it's an issue of insurance paying for it. Since I am stage IV, that's probably why I got no problems from them but like I said, Tykerb was no walk in the park for me....sherryg683

[Rupali]

SO I had my appointment with my community onc today and she said she will be willing to prescribe Tykerb alone maybe for 6 months.
Is anyone buying Tykerb out of there pocket and how much are you paying monthly for it?

[Lolly]

I was told $3,100 total monthly cost. I'm paying a healthy portion of that for the first 2 months, then it will get easier as my insurance kicks in more. Maybe since your onc is willing to prescribe it, TykerbCares will help with the cost as they're doing for Joy.
Once you send in the paperwork Tykerb people will contact you and you can ask then about the patient assistance program.

<3 Lolly

[vickie h]

Don't pay out of pocket for Tykerb. There is a Tykerb Cares program that will help you get the m edication. They worked wonders for me and never gave up ubtil I got it. They called my insurance company everyday and also offered me assistance in case my insurance would not pay. Call them today, they are amazing and will go the distance for you, they do everything to get you this medicine. I was so impressed with them Their phone number is 866-489-5372. Good luck and let me know how you are doing. Love, Vickie

[Rupali]

Hi all,

So my community onc called today and she said that she thinks she cant get me the tykerb from insurance as the main onc from a big cancer center in Boston refused to write a note to support it.
She asked me if I was ready to sign a medico legal consent form and if yes then she would prescribe it for me.
Once she prescribes it then I could call TYkerb Cares and will have to pay out of pocket.
Now I know some of Stage 3's like me on the site are getting off label tykerb as monotherapy. Can someone please tell me how they managed it.
Thanks
Rupali

[SuesSister]

I just wanted to say thanks to all who responded to my desperate post about getting Tykerb without Xeloda for my sister.

We got the worst possible news today, that basically this is the end of the road for us - her liver is failing despite all chemo combinations and there are no surgical or radiation options. Her billirubin is up past 12 and climbing fast. As you can imagine, we are devastated.

BUT....after challenging the doctor's original opinion about Tykerb (she told us we were not eligible because it was only approved with Xeloda which Sue responded badly to back in 2005) she agreed to prescribe it off label. I contaced GSK and also took the information you were all so generous to post and now she decided to give my sister one week of Herceptin in combination with an older drug (I know it starts with an E and is used for lung cancer) while waiting for the Tykerb prescription, but if there is no improvment by next Wednesday, we will have the Tykberb in hand as a last resort. We signed an agreement because the insurance will probably not pay it, but I will worry about that later, and I do plan to appeal to her insurance (GHI) because there is nothing else left.

I am dissapointed in her onc because if we did not ask for it, she would not have considered it. But she did not give us a hard time once asked.

I can't thank you all enough for giving me the information that will help us get one more chance - every day matters and I am truly grateful for your quick and sincere responses. You are all in my prayers and continue to be my silent support group that has been our best advocate.

Sincerely,

Rosie, Sue's Sister
Brooklyn, NY

Keep in mind this isn't a one shot thing. Maybe you can get tykerb for prevention next year or year after--when more research is in.