Topic: How to obtain tarceva, and similar meds

my spouse was diagnosed with cc with mets 3 months ago and has had good response to gem/cis. Until I found this site it seemed like there was no good long term hope for this disease (according to other information I read). I have much more hope after reading letters on this site. From what I have read there is no APPROVED treatment if gem/cis no longer works. Yet I see people on this site reporting that they have been on tarceva, and similar meds
My question is: what cancer centers do use these newer drugs and how do they
get approval. Just preparing for the worse in case the cis/gem is not longer effective. Thank you for this being available.

Re: How to obtain tarceva, and similar meds

jetcm....welcome to our site - so sorry for the reasons for finding us.  Your spouse is responding well to the current regimen and that is fantastic news.  Although there is a likelihood of non-response to current regimen, at this point I would not worry too much.  Other drugs can then be used.   
So glad you have found us.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: How to obtain tarceva, and similar meds

Dear Jetcm, welcome to our extraordinary family but sorry you had to find us. I can't help with chemo questions as my husband did not have chemo but I want to say with this disease we always suggest 2nd and even 3rd opinions.
Make sure where you wife is being treated that it is a large hospital with a good amount of experience with CC. Wishing you both the very best and please keep us posted on her progress. P.S. I am from Milwaukee, neighbor!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: How to obtain tarceva, and similar meds

Hi John,

Glad you have joined us, but sorry you have a need to.  My husband was never on chemo either, so can't really help you there, but I am glad the current regime is working for her and hopefully you won't have to make a change, but if and when the time comes, there are many other options and I'm sure her doctor's can help you with that along with suggests from members here of what worked and didn't work for them.   You will find this is the best place to come for help, support and information as this is a relatively rare disease and not much is know about it.  That is improving though.   I have seen many things change in the past few years and I am confident that will continue.

I too am a "neighbor" in Plymouth, WI.  Originally from Sheboygan and have family and friends in Milwaukee and Madison. 

Hoping for the best for you both.  Keep us updated as to how things are going.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: How to obtain tarceva, and similar meds

Darla, you are from Sheboygan????  I had some first cousins there quite a large family with 6 kids. Did you know a Schwam family?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: How to obtain tarceva, and similar meds

Lainy,  Doesn't sound familiar.  I lived on the south side and Jim on the north when we were in school and on the south side after we were married.  Maybe he would have recognized the name, but I don't ever recall that name coming up.  Small world tho', huh?  Lived there most my life except for some time in California when Jim was in the Navy.   Have only been in Plymouth about 20 years or so.   One of my sons and daughter-in-law live in Milwaukee.  The other lives in Plymouth.  Followed us here.  smile

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

7 (edited by Willow Sat, 22 Mar 2014 13:36:50)

Re: How to obtain tarceva, and similar meds

Dear Jetcm,
Is your wife at a major cancer center for cholangiocarcinoma? Does she have Intrahepatic, perhilar (Klatskins) or extra hepatic (distal) CC? Where are mets? Local or distant? Is her overall health generally stable?  Many oncologists will try many combinations of meds. Just because they're not "standard/approved" for CC doesn't mean insurance won't cover its use. This approval by insurance companies for "off label" or "compassionate" use is precisely because there aren't enough standard txs for CC and because these meds have been shown to help some people w CC. We also rec asking your wife's onc about genetic testing to identify mutations that may help choose target meds (though some are only used in clinical trials at this time). Use the search function on this website to look up anything.
All the best to you and your wife as you navigate this crazy road.
Willow

Willow

Re: How to obtain tarceva, and similar meds

Thank you a lot for the responses. I have learned a lot. She is at the UW Carbone
Cancer center in Madison. I believe they have much experience