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Tarceva Questions

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I am looking for those of you using Tarceva with success - who don't fit the profile from the trials...the latest oncologist that we "interviewed" for my mom said he refuses to prescribe Tarceva because - to keep the description short- the "leper" factor (rashes). He followed that up by saing it only really works on young, female, usually Asian, never smokers - and that my mom did not fit that profile. I told him that was not my understanding from what I had read on this site. Sooo, I would really like to have a response from those of you who are using it with success who are not YFANS (young,female,asian,neversmoker's)

16 replies

For more than half a year Tarceva worked very well for my wife, at that time age 66, white, female, nonsmoker, stage 4 NSCLC. It was her second-line treatment after a platinum duo. She had no mutation testing. Because Tarceva is oral, and showed few side effects, it provided good quality of life in addition to the disease control in chest tumors and in brain mets. At least everybody like my wife should try Tarceva. (This was recently posted as a reply to another inquiry. See "tarceva HELP!!!!!!!!!!!!!!!!!" posted June 29.)

I have been on tarceva for over 2 years now. I am 62, caucasion, and a smoker. It is the only treatment I have ever had and it elminated all tumors in both lungs with the exception of one.

As for the rash, it can get bad but there are prescriptions to handle that and it diminishes over time anyway.

Get another opinion from an onc that thinks outside the box. Many oncs will not prescribe tarceva because they do not make any money off of it. They make a fortune off of IV chemo. After I refused all treatment, they finally offered me the tarceva and I took it. It is a wonder drug when it works for you.

It is also the only chemo that crosses the blood/brain barrier to prevent brain mets which is what attracted me to it in the first place.

Good luck and God Bless

Has your Mom had 1st line chemo? Tarceva is usually used as a 2nd defense.
I do not fit the profile, I am 57, ex smoking Caucasian. I did get a severe rash at first so they took me off tarceva for two weeks until we got it under control and then I started taking it again. I have been taking it for 1 month now and the rash is much better. Basically just dealing with dry skin now.
I have not had a follow up CT yet but am looking forward to good reviews when I do.
If the rash is his only objection than I would be more insistent or find another Dr. opinion. It may also be the type of cancer your mom may have and/or other factors the Dr is aware of.

Good Luck & God Bless

Linda

I do not fit the profile. I took Tarceva for 2+ years. It kept the cancer stable. I am an ex-smoker,52 yr old female caucasion. Tarceva was the 6th (I think) line of treatment. I do not have the gene factor that supposedly makes Tarceva work. I am very glad that my oncologist thinks outside of the box and includes me in the thought process. And guess what, I am NOT being treated at the biggest and best (from what I hear) hospitals and treatment centers. I receive this treatment right here in little ol Boise Idaho. I was diagnosed in May of 1998 with NSCLC staged at IIIB. Do the math, that was more than 11 years ago. I am now staged at IV with mets to my abdomen. I have just come off of a round of Taxol and doing well. What I am trying to tell you is to NOT believe all the statistics. I, for one, have blown those statistics out of the water and maybe you can too. You do NOT need to be at the biggest and the best for that to happen. You need an oncologist that is compassionate, listens to you, and is willing to go the extra mile. One that will include you in the treatment process. There may be reasons for what they do sometimes but they need to make you understand those reasons.There are a lot of things that happen in this world that are "not supposed to".
Hope this helps
Wishing the best for you
God Bless
Deb K

I was on Tarceva as a 1st line treatment by my own choice because I closely fit the profile (white, female, non-smoker). My oncologist told me on my visit with him that I'm th boss...my body, my choices. When I requested Tarceva as a 1st line treatment, he didn't hesitate. Unfortunately, Tarceva didn't work for me but I was happy that my onc gave me choices and respected my decision. I've seen many posts on this site from people using it successfully who didn't fit the profile. I didn't like the rash or the dry skin but both would have been well worth it if it had worked for me. Personally, I wouldn't go to an onc that was so closed minded about a drug that could potentially help fight my cancer. Good luck with your search!

I am a white OLD female 30 year ex smoker. I do not fit the profile by any means. Tarceva has been working for me for 17 months.

If your mom wants to try it and her Oncologist won't let her, then get another Oncologist.
Good Luck, and God Bless,
Marylou

I am 69, black female non - smoker. Tarceva is the only treatment I have had for stage 1v nsclc, other than gamma knife for brain mets. I was disagnosed in October 2008. My ct scans of the lungs show no evidence of disease and my MRI to the brain that I had today also showed NED, in fact the radiologist said that another radiologist looking at my pictures would have jusat said it was a normal brain.

I did have a rash early on but it was by no means severe. I kept my skin very moisturized from the beginning and I still do. My hair did thin, so I cut it all off. Diarrhea continues to be a biggie. I have added more fiber to my diet and that tends to help. All in all the side effects are a small price to pay for the quality of life I have enjoyed. I still work full-time and carry on all the activities I did before I was diagnosed.

You have come to a great site to get info directly from the ones and their family members who have tried Tarceva. It doesn't work for everyone, but for those of us that it does - it is truly a wonder drug!!

I've been on Tarceva for 9 months. My oncologist GUARANTEED me that it would work for me, not just because I fit the profile, but because he performed a chemo-sensitivity ASSAY TEST on my tumor which told him from the start that Tarceva would be the most effective drug to kill my cancer.

Without such a test, all treatment is a guessing game based on statistical protocols. But as you can see here, everyone is unique and rarely fits the statistics.
It usually takes about 3 tries to get to the right chemo, and by then many people are worse off.

To know for sure what drugs will be most effective for your mom, I would strongly encourage you to ask about having an assay test performed. Your mom's oncologist may be right - Tarceva might not be the right drug for your her. But ask him how he is going to pinpoint what treatment WILL work.

For more info on Assay Testing, check out the website www.rationaltherapeutics.com and give them a call. They are extremely helpful in explaining the options. And more and more insurance companies are covering the assay test. I guess they've figured out it's cheaper than pouring money down the drain on chemos that don't work.

And, finally, if your not happy with the answers you get from the Oncologist (he sounds like his head is in the sand), find another one who believes he CAN help your mom. I'm a strong believer in second opinions. I'm convinced the one I got saved my life.

Best of luck to you mom!

All the responses are from women. Any men out there that have had success with Tarceva?

Dana

Thanks Dana - I was wondering the same thing, just rattling around in my brain, it seems that most women are using Tarceva and the men seem to be Almita(is that right). But, that could be my overworked imagination.

oh my..that doctor who gave you that information about tarceva is way off base. My mom has NSCLC stage 4 diagnosed over 3 years ago. She started in a clinical trial and has been taking tarceva since oct. 2008. She is 77 yrs. old and is white female former smoker. The tarceva has given her a new lease on life. She does have some of the side effects such as the "rash" but all of the effects have been managable and has not kept her down. She continues to be very active and keeps a very positive outlook. Her oncology team has been outstanding. Last weeks scan showed no new growths or mets. Not sure why your doctor gave you that kind of information. Good luck...and don't give up.

I would highly recommend getting a second opinion if you don't like what your doctor is telling you. My mom is in stage IV NSCSC Lung Cancer and she is 62 years old and quit smoking last year after at least 30 years of smoking. She just started but we are hopeful. From what I read on all of these boards, I hear tons of good things about it.

My mom was at MDAnderson from Feb-May and received chemo there - however she was very homesick and the chemo cocktail was kicking her behind, so we came home. The onc. there gave us a referral to one here in LR that she is "accquainted" with. The onc. had the personality of a door frame, made two snide comments about MDAnderson, and would leave the room when SHE was finished talking, not when WE were finished talking-on the second visit I had to ask the nurse 3 times to ask the Dr. to come back to the room for questions we had. - Marked that one off the list. Met with another one who had a great personality and some really positive things about the practice - however, he is the one that won't consider Tarciva. - Moved him to the maybe list. We have two more appointments coming up - to "interview" with. Oh, and the very first one, before MDAnderson - I had NO confidence in her abilities with LC. She got marked off the list when she helped persuade my mom she needed WBR for a met that was 5.3mm Before she would start any chemotherapy. - Maybe it is harder for me to because I have worked around the medical field for so long and I see what I see when it comes to healthcare - and since I am the advocate for my mother and her care, I will not settle - for the most part - I feel that my mom is still here IN SPITE of her past care - beginning with her first PCP, not because of it.

My mom had picked out an oncologist and started treatment. Then she had a stroke. When I finally met the oncologist, because I had to fly in from out of state, I liked her too however when she only suggested going strait to palliative treatment when she was only in stage 3b, I looked elsewhere. I actually posted a note on here asking if there were any recommendations for a doctor in the Ft. Lauderdale area because I live in Michigan and as you know the search can be overwhelming. I went with a recommendation from here and it worked out great! I would try that if you want to get recommendations in your area from people who are currently using those doctors or who have had success.

Good luck!

Melissa

Melissa - yes, in addition to the WBR right out of the starting gate - her first onc wanted to do palliative care only. I found out later at MDA that she had been "over diagnosed" locally - meaning, they told her it has spread to liver, adrenal, kidney, stomach - it is NOT in all those areas. I have contacted people on here who live in my state or close by and have gotten recommendations - it is a help in the narrowing of names to go through.
Good luck to you and your mom also - let me know how she does with the Tarceva.
Bridget

Isn't that something? That a doctor can tell you it has "spread" to all those areas when in fact that isn't true?

It is scary what mistakes are made. You have to read everything and stay of top of everything...........

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