Tykerb

[Lisa]

I'm starting to feeling like a puppet. My onc has answered every question asked by the trial's "owners" and STILL no Tykerb. I've been through every chemo, etc. and I really need to try Tykerb. We're still trying, but I feel forgotten.

Love and light,

Lisa

[Barbara H.]

I'm also wondering when it will be approved. I am currently responding to Navelbine so I can't get it.
Barbara H.

[StephN]

Dear Lisa -
I was just about to post if anyone had heard from you after your exploratory surgery. Perhaps I missed a post. But was wondering how you are feeling and if the procedure helped at all.

I am still fighting stabbing pain in my scalp after the last surgery on my head a month ago. Had to ask for more pain meds today, as Tylenol is no good and they do not want me taking any antiinflammatory pills yet.

Hope the dam will break soon and you can get the Tykerb.
Have you tried Avastin?? I have a friend on it, but your blood pressure must be in control to stay on that one.

[Sandy H]

Lisa, maybe its time to start screaming!!!! and get tough!!! Can Joe and Christine help you? They are our advocate for Tykerb. Might want to call them or send them an e-mail. I hope you can get it. Keep fighting my dear, its your life and not their! Sending you a big hug, Sandy

[lu ann]

Lisa, Look under this post for Joe's reply, second web-site. It will be Zion, Illinois. Neelamm is the doctors last name. Trials are open and i believe this is Cancer Treatment Centers of America. I went there for treatment 2 years ago and they were allways upfront with me and never jerked me around. Lu Ann

[Joe]

Lisa,

I have sent you an email which may help.

Regards
Joe

[jessica]

Hi Lisa~
You've probably already gotten the info you needed re:access to Tykerb, but I thought I'd share w/you the info I've gathered.
I've been exploring this new EAP Lapatinib+Capecitibine trial too. I spoke w/a coordinator @ 888-489-5372 & she was very helpful & is sending info in the mail. If you go to the clinicaltrials.gov site & enter "EAP Lapatinib" a good amount of info pops up, including sites in every state.
The Principal Investigator @the site here in Atlanta is the same MD that was the PI on a previous clinical trial I was enrolled in, so was able to get a little more inside scoop.
I was told that the enrollment/pt.accrual schedule is 1 patient per month, but that may be a different @the site that near you.You must have "measureable disease" and "Progressive disease following treatment with anthracyclines, taxanes and trastuzumab (Herceptin)-(trastuzumab must have been for treatment of advanced or metastatic disease). "
I'm not eligible for the trial for a couple of reasons-no previous anthracycline (like Adriamycin or Doxil) and by some truly,great miracle (see other post!!!), no measureable disease
Hoping your access to Tykerb is not far away...

Keep the Faith!

[lindaw]

Dear Lisa

I wish you get hold of the Tykerb quickly - you have been through so much .
I am trying also to get it as my skin mets have come back a little after the radiadtion, and have new ones on my shoulder and now a swollen neck node. I was told 2 weeks ( im in Aus - don't think many people here have done the EAP thing yet. Well 2 weeks is up and the paperwork is still in Canberra and when it returns we have to send another one and then when thats returned - we ge the drug. meanwhile i though i had had my last herceptin but now next week i will be due for it again - cause no lapatinib to replace it. I feel unprotected - if i wasn't getting Lapatinib i would have started another chem ( not many left - i think taxoter).
It is so hard to wait and I am starting to understand how Sandy and others felt - particulalry when I am remeinded by the pain from the skin mets - constantly.
Its another degree of unfairness - i feel like going away somewhere for the week and a half and coming back when its here. So hard to get thru each day knowing there is a drug which looks so promising and can't get ir cause of red tape.
I hope you get it very soon .

love
linda

[Sandy H]

Linda and Lisa: I certainly, can relate to your frustration. I went to bed crying one night I was so frustrated, along with hurting from the skin mets. I felt like no one cared about me!! There this drug was suppose to be there for us and yet here I was waiting, waiting and still waiting. I sent my oncologist an e-mail(I never e-mail him) sharing my frustration. He assured me he was doing all he could be get it through. The paperwork is the problem. Then I had a call from our dear Christine here. That lifted my spirits at least someone cared! I really knew they did but you both and others know what it is like to wait. I finally let it out to the Data Manager nurse when she kept saying she understood and I told her "no she did not because unless that person walks in our shoes-no they don't understand". I was not a nice person for a couple of days to her as I was not only frustrated but angry. I told her in 9 weeks of waiting people loose this battle. When we are first diagnose with an aggressive disease such as this one we are rushed into getting scans done, chemo started and surgery. Yet, now we wait and wait. This gives me a mixed message here that I don't like. Well, things started happening fast after that. She told me several times during signing of all the papers(about 20 of them) I could my point across very well! I told her this disease made me that way its called fighting for your life. She said again, "yes, you can get your point across"! I told her only if I really have to. I have been praying for you both and I check this board every night and morning looking for your post saying, "you have it" Sending you both a big hug, and more prayers to help you hang in there. Sandy

[lindaw]

Thanks Sandy

Its great to know that you are there and wishing the Tykerb on its way.It means a lot.I know how you felt when you said it is fighting for your life.Its so frustrating knowing there is something available but can't get it.

love
Linda