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SuesSister · 06-06-2007, 08:46 PM

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

06-06-2007, 08:46 PM	#11
SuesSister Member Join Date: Dec 2006 Posts: 5	Thank You!!! 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