Tykerb Discussion with my onc

[Rupali]

Hi all,
Let me start first giving a history about my case:
Diagnosed December 2004.
9 cm tumor with 12 out of 22 nodes positive, Stage 3C
RIght breast mastectomy
Followed by dose dense 4 AC and then 4 Taxol
Followed by 33 radiations
Followed by 2 years of Herceptin and Tamoxifen
ER+(10%), PR+ (10%), Her 2+++
Currently NED
Stopped Herceptin March 23rd, 2007

So my husband and me went with this dilemma to my oncologist appointment yesterday to see what more we can do and what to do about Tykerb.
I am following up with 2 oncolgists, one is an oncologist at a leading cancer center in Boston and the other is a community oncologist. I do that because the community oncologist is more easy when it comes to writing prescriptions to try and get off label medicines, like we got it for herceptin initially.

SO my community onc tried to getme tykerb off label but my insurance CIGNA denied it as the community onc had put a prescription just for Tykern and not Tykerb and Xeloda.

When we met the oncologist in Boston yesterday our key point was that even if insurance was not going to pay for Tykerb, should we stil try to get it and take it. And if yes then for how long.
Well, due to legal issues he did not answer clearly but my husband was able to lead him into discussions and finally this is what my husband proposed and he thought that my husband was making sense (another way to say yes but still not prescribe it)

SO the final cocktail was:
6 months of Tykerb exactly like the active arm of Teach Trial together with a maintenance dose of Herception once every 3 month.

Now the big problem we are facing is that how do we get our hands on Tykerb. ANy ideas?

A point my husband brought up in the discussion was that if they are doing a TEACH Trial then that means that someone has some scientific evidence that TYKERB works well even without being in cobination with Xeloda, else why would they invest millions of dollars and run it in 32 countries.
So even though noone knows for sure but stil there is at least a more than 50% chnace that Tykerb alone works.

I would like to get your feedback on this and also try to understand if someone is on this kind of protocol that I mentioned above.
Also how do we convince the community onc to just prescrive Tykerb alone or how can the community onc convince insurance to just pay for Tykerb alone.
Is anyone alone getting Tykerb, if yes then how did you go about it.

So many questions. Please help ....

[AlaskaAngel]

I hope you will get some really good responses to your post, Rupali. I just want to mention for those at less risk yet who are considering jumping on the bandwagon to try to get lapatinib that there are reasons for the current lapatinib trials.

I follow the reasoning for doing lapatinib in your situation and would do what you are trying to do. I'm just a little concerned to try to provide a little balance here so that those at lower risk for recurrence understand that the risks of the drug aren't clear long-term, because to me it seems like with so many posting the rush to get the drug there is the impression that this drug is a slam-dunk with no mention of risk.

It may turn out to be a terrific drug with hardly any problems, but that isn't certain.

AlaskaAngel

[Muldoonmom]

I also have CIGNA and they initially denied my onc's treatment plan - tykerb w/out xeloda. Since I had already been on xeloda for nearly a year in 2003 and then had disease progression, he responded to CIGNA accordingly and they approved Tykerb alone. Now I am resuming Herceptin. We'll see what CIGNA says about the combo....

[Rupali]

Hi Debbie,

The problem in my case is that my onc cant make a case to not give Xeloda. I am stage 3A and want to take Tykerb as a preventive means for like 6 months. I am just basing it on the fact that preventive nature of TYKERB is the reason for running a TEACH trial in 30 countries. Plus when I saw in the eyes of my onc I could read he wants to say that yes this is right but cannot speak becuase of legal issues. He although made twisty statements which me and my husband could understand as that he was bending to say that yes Tykerb for 6 months with 2 rounds of maintenance Herceptin every 3 months should be a good cocktail. This is because Herceptin stays in the system for a few months and together these 2 have synergistic effect.
The only problem is to see how to get TYKERB...

[Muldoonmom]

Maybe you should just remain on Herceptin since it seems to be working for you. Eventually Tykerb will be more easily available...

[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.