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Posts: 11
Joined: Jul 2011

So my mom hasn't had any treatment since last September, her last round of chemo hospitalized her for over a week. We have been just keeping her comfortable and treating any symptoms that arise on her request. I was very surprised when she asked my yesterday about trying some form of treatment again, she said she doesn't want to give up. Her oncologist didn't want her on chemo anymore since she had such an adverse reaction to her first 2 rounds last fall. But her onco had mentioned Tarceva a few months ago. I have read all of the side effects online and about the extreme costs. What I'm looing for is a "real" persons experience with the drug and if anyone knows how to get the drug at a cheaper price. My mom has medicare and a small supplemental insurance plan, but the drug is ridiculously expensive and medicare said they would only pay part of the cost, leaving about $1,700 a month for her to pay. If there is anyone out there that might be able to shed some light on this for us, I would really be grateful. Thanks


iola_s_mom_is_so_brave's picture
Posts: 16
Joined: Jan 2012

sorry for my english if it is not accurate or proper.
I know a lady in Shanghai, she has been carrying lung cancer for over 8 years by taking Tarceva for over 5 years. She thinks Tarceva is the main factor that keeps her alive. I talked with her on the phone, she says the she got hair lose, dizziness, nausea, fatigue, mouth ulcer. Now she is facing a new problem, brain atrophy...Although Tarceva brings side effects, she wants to take it daily.
I also have a colleague, his auntie got Lung Cancer Stage IV who had been taken Tarceva for a year then she couldn't make it still...
As my mom was also diagnosed as Stage IV, dad is a doctor in hospital. We collected a lot information about Tarceva. In our opinion, it really dependes on people, different people,different body structor, different situation with it's own specific solution.
Majority, I think it just like the original purpose of Tarceva 'same survival, better quality'
As a daughter, I would like to give it a shot. I mean I would like to save my mom by all means. In China it's even harder. Our healthy insurance doesn't cover chemo and Tarceva. We pay for government tax, when we sick we all on our own. I truly want to say F words.......grrrr

ColoradoDani's picture
Posts: 65
Joined: Sep 2011

There are a lot of people on this discussion board that have been on Tarceva. Tarceva is a targeted therapy, and it works best for people with cancers that have the EGFR gene mutation (some people with EGFR mutation on Tarceva are living for years), though there is some research suggesting that it can be helpful for people without the mutation, too (and some that suggests it's not helpful for patients without the mutation). It's obviously best to talk to the oncologist to get specifics about it. From what I've read, the side effects vary largely from minimal to quite annoying, though it's nothing like chemo. I'm surprised that medicare only pays a small percentage since so many other cancer treatments are similarly expensive. It may be worth asking if it's still used for clinical trials and if your mom might qualify, but Genentech, the company that distributes Tarceva, does have a foundation that addresses the Medicare issue and might assist with cost. Check it out: http://www.gene.com/gene/products/access/ Good luck.

iola_s_mom_is_so_brave's picture
Posts: 16
Joined: Jan 2012

thx a lot, this is also useful to me.

mamacita5's picture
Posts: 254
Joined: May 2010

I have been taking Tarceva since September for a met to my spine. I tested positive for the EGFR mutation. My bone met is reduced, I no longer have pain, and I have no new mets. My doctor says the drug is working perfectly. Side effects have been dry skin, hair thinning, brittle nails, cracked finger tips, weird eyelashes and eyebrows and diarrhea. BUT...I am managing all of these things very well taking 150mg each day.

Genentech is the manufacturer of Tarceva and I believe there is a link on their website to get help with purchasing the drug if your insurance will not cover it. I think there are actually several foundations that may be able to help, you may need to spend some time on Google to search them out.

Best wishes!

snowdancer's picture
Posts: 9
Joined: Mar 2011

The rash was really severe in my case. I started with the standard 150mg dose and had to stop after about ten days. The rash started at about the 7th day and got worse quickly. I took a short break(all discussed with my oncologist) and started back up with a 75mg dose for about a month then a 100mg dose etc. until the full dose. I guess the body adjusts to it. I have several other of the usual side effects but not too bad, except for weak muscles. By weak, I don't mean I can't use them, I mean sometimes when I use them in normal situations they get pulled and strained and bruised. It makes it difficult to do any exercise, because if I pull my calf muscle again I have to limp home. This is my favorite time of year for outdoor sports and I really can't participate this winter. Let's just hope it is doing some good. I'll know more after my next CT scan in a month. If it saves my life I will easily forget all the slight problems.


Posts: 11
Joined: Jul 2011

Thanks for all of the information!! Hope everyone is doing well.

Posts: 11
Joined: Feb 2012

Hi, my Mum is starting Tarceva on Monday after previous chemo was unsuccessful. She's very weak & breathing is getting worse. She was only diagnosed Nov but the change in her is huge. She had radiotherapy on a lump on her side last week but feels this has made no difference. Her confidence has been shattered by lack of positive results, it seems every time she has an appointment there is more bad news. We're all struggling to cope, my Dad is her main carer & I know he's terrified of losing her. Mum has so much to live for & until Nov was leading a full & happy life. Has anyone had experience of Erlotinib? It breaks my heart seeing my amazing mum, my best friend suffer so much. I want to make it ok for her & I'm desperate for her to be well & to enjoy my 2 daughters like I know she would love to. This is the worst time of our lives, I can't stop crying today.

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