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New here, but not to lung cancer!


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My name is Sue and I was dx with nscl lung cancer in June of 04. Top lobe of left lung was removed and one lymph node, thought they had it all. Did 4 rounds of taxol/carboplatin chemo which I continued to work throughout (I am a teacher). The next visit and scan after the chemo had the cancer exploding in both lungs, we were devastated. Tarceva was the only choice for me and I was on it for 17 months with all the tumors gone until the last scan in July 06 when the cancer had finally mutated and was coming back. Biopsy confirmed the scan. I was to start chemo again 2 days ago (alimta) but the oncologist is trying to get me into a Phase I trial at Mayo which is a combination of new pills, one similar to Tarceva and the second is supposed to work against the vascular system of the tumors. I need to be off the Tarceva for 4 weeks before I can begin the new trial. I'm apprehensive as the trial is a Phase I but my husband and oncologist are both in favor of it. The oncologist says I can always come back and do the alimta chemo and they were just approved to add avastin to the chemo treatment. Anyone out there who has had Tarceva quit working? What did you do next? I am a non smoking white female 57 years old and had good results with the Tarceva. Still feeling side effects now, rash etc, wonder if the new stuff will be similar. Physically I feel fine, emotionally I'm a wreck, having trouble holding it all together. Would appreciate any input.

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Tarceva was successful for my husband for a long time. When it stopped working he did the Alimta-- and then on to Alimta with Avastin together and now he is on Avastin alone. His cancer is stabilized again with the Avastin. I hope all goes well for you. Welcome to the site.


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Hi Sue!

I know of ONC docs who only want people to do trials. It makes them look good to the ONC community. I believe we need trials. Absolutely. But who does them should be completely voluntary. You do what's right to YOU. Additionally, I see alot of folks here telling others to get a second opinion. In your case, I would do just that. Find another ONC and see what he/she has to say.

Keep us posted. Glad you found us.


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My wife had GEemzar, Navelbine, Taxol, Carbolatin, Tarceva, Etoposide before she passed, in that order. I welcome you to the boards here and understand your apprehension about the trial. As the Moderator for Clinical trials And New med forum, I can understand the apprehension of a 50/50 shot at success in this. At least there is a back up plan that has had very good results for many people. That is what it is a 50/50 shot at seccess. If you decide to go through with the trial, THANK YOU this is the only way to make progress in fighting this disease. If it were not for the PIONEERS that do this we would not make research progress especially a Phase I Trial. If you do not want to do this I totally support and understand your thoughts. IT IS your life at stake here not mine and I will do anything I can to help you with this battle. Either way I send my most heartfelt Prayers from under the Carolina Skies today and Welcome you with open arms.

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Hi Sue: welcome to this board.

I know how disappointing it can be to have your cancer come back after you think it is gone for good. It has happened to me twice. Fortunatley for me, each one was a small local cancer. Hopefully, getting into the routine of another regime will help you feel better emotionally.

Consider that if you get avastin in the trial, that would be a good third line therapy.

Don M

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Hi Sue,

I was on Tarceva for 16 months and had great success with it. Was supposed to start Alimta but right now I'm doing chemo for my ITP and then will start back up on Alimta. If you have faith and confidence with you doctor's and if it was me I would go that route. Like they said can always stop and go on to the Alimta. It's the one we don't try that might be the magic bullet. Hope this helps. Prayers for the best.


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Hello Sue and welcome,

I am sorry you had reason to find us here on this site, but very glad you did.

You have gotten some pretty good advice here so far and I cannot add to that. Most of the people here DO feel strongly about getting second opinions. It never hurts to see what other options are out there.

Please keep us posted and know that we are here to help you however we can as well as support you in your fight.


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Welcome Sue,

My heart went out to you when I read your story. You have been through so much and then to find out it had returned. I am so sorry.

I cannot help you as far as clincial trials is concern, but you may want to get a 2nd opinion. It certainly would not hurt.

Please keep us posted and know that we are here for you if you need answers for just support.

Hang in there, you will get through this.

Maryanne :wink:

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