Thank You Board Members!!!

SuesSister · 06-06-2007, 08:50 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

Karen Weixel · 06-06-2007, 09:01 PM

Tell Sue to keep up the fight and remember... that doc works for your sister!

Lolly · 06-07-2007, 04:44 PM

Rosie, your sis is so lucky to have you and the rest of her family fighting for her. I hope and pray this temporary combo will hold things in check until Tykerb can arrive. There is supposed to be synergy between Tykerb and some of the chemo's such as Abraxane which I'm on, and so far this combo has been fairly easy for me to tolerate. However, with her liver so compromised that changes things, but we will hope for better days when a decision about adding a chemo can then be made. All my best to Sue, I'm keeping her in my prayers.

<3 Lolly

Bev · 06-07-2007, 09:24 PM

Iressa? Look at Lani's post. I think there was a benefit to doing all 3, H, T and I. Hope this works. Keep in touch. BB

SuesSister · 06-11-2007, 09:46 PM

My sister's insurance company (Qualcore for GHI) called Friday night and told us her Tykberb that was ordered without Xeloda will be covered after all.

I hope this news will encourage others to ask their doctors and insurance companies. If I did not ask you guys, we would not have known we could ask - now we are days away from having this chance. I can't thank you enough!!

Leslie's sister · 06-20-2007, 05:24 PM

Isn't this board awesome. The ladies on this board have been so wonderful sharing all of their vast knowledge. It is so exciting to see this working people's lives like it has yours. I pray for the best for your sister. She is so blessed to have you.

Lala · 06-20-2007, 05:53 PM

Rosie
I just wanted to say you and Sue are in my thoughts and Prayers.
You are a Blessing to your Sister. I Thank you for being a Wonderful Advocate for your Sister Sue. Too many times Caregivers, Patient Advocates and Family are overlooked. With out them where would we be, it is an Honor to witness the great Love you have for your Sister.
May God Bless you Both.