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I'm starting a post for EGFR negative NSCLC patients that are being treated with Tarceva.
What are your results, side effects, duration on Tarceva; why your Onc prescribed it, and if your insurance covers the costs.

Good luck to all,
Carm

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Hi I am so happy to see this post. I have stage 4 nsclc, non smoker, completed the 6 rounds of the usual regimen cisplatinin, avastin,alimpta. I have been on a maintenance program since sept 2011 of alimpta and avast in. The alimpta has been causing lots of side effects from leg swelling, to neuropathy and knee pain, making it very difficult to walk. I am now on an alimpta break. My brother in law is a medical doc of oncologist pharmaceutical research. He is suggesting my oncologist start me on tarceva a lthough I have negative egfr. I would surely like to know if there are people getting results with tarceva. I understand it's a lot gentler on the body. It would be nice to just take a pill rather than infusions every 21 days.
You are the first to respond to my post. I assume this means there are few EGFR negative or wild people taking Tarceva.
Tarceva has changed my life. I can breathe again and am living a productive life. The side effects are manageable, but you can have a roller coaster of skin problems, heart burn, and general fatigue.
I would discuss this treatment with your Doctors, it can help a small percentage of non EGFR patients and show promising results.
We did the ABC's of Chemo and then maintenance therapy for 18 months. When my cancer was progressing it was time to change treatments. I was given the option of Tarceva or two more chemo therapy agents. The choice was an easy one, one pill daily, or Chemo infusions every three weeks.
When you are declining in health, and using an O2 unit to breathe, you will try anything to find some relief.

Within days after starting Tarceva my lungs felt better, ribs did not hurt as much, and my energy level was increasing. After 30 days on Tarceva my CT scan showed cancer reduction, confirming why I was feeling
better.

Definitely ask your Oncologists about other treatment options, but realize if your current therapy is working, it may be the best choice for you now.

good luck
CA
So glad to see this on the forum. Have recently progressed and Dr gave three options. Clinical trials ( which is his strongest recommendation ) or he would either put me on Tarceva or Taxotere. EGFR negative. Any thoughts on this.
What clinical trial did your Onc suggest? If given Tarceva you should know in a few days or weeks if you are responding well. They usually start you off on a 30 trial with a follow up CT scan. I believe the stats given were a 10-20% chance of Tarceva helping (EGFR wild) and a 30% chance of stabilization. Discuss this with the Onc then move forward until you find the most positive treatment for your cancer.

Good luck
Karm
Hi Karm. Thanks for your response. Here is what I have to date. My oncologist does not/will not recommend any one trial. Just go to trials. It's been VERY overwhelming to say the least. Tarceva vs a new drug is one of the options at City of Hope trial. That said my only reluctance is that I have a 50% chance of receiving Tarceva which is what he would give me if I choose not to go to trials. Why travel 60 miles in LA traffic only to get the same treatment (maybe). Double blind study so even Dr won't know. I also have another appointment with UCI the day after City of Hope and no idea of what they have to offer. I guess my main reason for turning to my fellow survivors is that I feel like I was drop kicked. I was told on Wednesday night by phone that my cancer is progressing. At a squeeze in appointment on Thursday we had a face to face and of course I did the -if I were your mother,sister, or wife.... To which he responded clinical trials. I responded with well last night after our call I went on line. Within 75 miles of my home I found 57 trials probably ( keyword) 30 of which I may qualify for. His response since they are trials it's all one in the same. Not one is more proven than another. I agree but now how do I choose???? Then he left for a 2 week vacation I really would like to make an informed decision based on my case and I know that he really can't recommend. But if I were computer illiterate and medically inept I would sit there and crumble. For the quarter million dollars a year that they are making off me I would have thought it might go something line this.... This is the situation and here are the 5 or 10 trials that you might fit into. Read them or think about it for the next 24 to 48 hours we will meet again and I will send your information along with a referral to those 2 or 3 places of your choosing. Not at all that way. I have only the info I have looked up and even though educated some of the information is way above me In some cases I can't even decipher if I am a candidate or not. I do not have my entire genetic make-up etc. I believe the system REALLY needs to be changed and I WILL make that voice heard ( plan on making an appointment with the head of oncology) but in the meantime I am turning to you guys for help. Whew. That was a mouth full! Can't tell I'm fired up, can ya? Thanks for listening and thanks for the input.
Hope to all
Warm regards,
Deva
Hi Deva,

Sounds like you need a second opinion or new doctor. It would be nice if he or she would give you a more definitive choice.
Keep up the researching, it will give you some of the answers you are searching for.
Karm

Hey There:  Sure was tough to hear your doc is giving you a royal runaround.  Have talked with a couple folks here, and they suggest maybe you contact the hospitals w/the clinicals and talk with them directly.  They may want your records, but they are yours, and you can get them for the trials folks.  I agree w/Karm that you might want to see a second doc....

We sat together at the dinner table in DC and you, Robert, Dexter, etc, etc., and I had a fun time in the lobby lounge that evening.  Remember the 'old firefighter/Marine'? 

Hang in there and keep digging.  There is something out there for you, and from what I recall, you're the one to find it!!

Bless you and keep us posted........ 

Sarge

Hi Sarg. OF COURSE I remember you. I don't know that I'm getting the run around so much as the system is just broke! That said I have gone to UCI and City of Hope along with investigating other options. I believe UCI is my best option at this point. 2 options for me there will have to wait for some additional tissue testing to see which one I will actually participate in. Won't start until June 5 or 6 as my oldest granddaughter is graduating in Georgia and I don't want to miss that so we will be flying out there end of the month. We too enjoyed your company. Thanks for the encouragement. This is such a tough road! Hugs and stuff. Me

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