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Guest libsak

getting off a clinical trial

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Guest libsak

Hi

I posted 2 weeks ago when my husband started a clinical trial of Tarceva(similar to Iressa). He has NSCLC. He was offered the trial before going into standard chemo. He has been on the drug for 2 weeks and I think his breathing is getting harder and he is more congested. I don't know whether to push for him to get off the trial, try and get another lung cat scan, and go into standard chemo. I keep thinking we are wasting time during this trial (its supposed to last 8 weeks). He is not sure how he feels and is leaving many decisions up to me. I feel so pressured to make the right decision for him and I don't know how to do it. We are trying to stay strong but this thing seems to be advancing very quickly. Has anyone opted out of a trial in the middle. I haven't discussed this with his doctors yet. All input is appreciated.

Libby

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Guest bessb

I am in a clinical trial and was told that anytime at all that I want to get out and try something different I can do it immediately with no questions asked.

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Guest Fay A.

If he is having worsening respiratory symptoms he should contact his physician ASAP. This is not something that those of us who have lung cancer should ignore with the hopes that things will get better. I'm not trying to alarm you, but I know for a fact that the reason I am still alive to type this message is my aggressive insistence that respiratory infections are diagnosed and treated early. That means I see the doc at the first sign of breathing problems. Hope all goes well. I know how hard it is to be the one who is making the decisions. You are doing the best you can and you are there for him. So go easy on yourself... Fay A.

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Dear Libby,

I totally agree with what Fay has said. I also do what Fay does as far as leting the doc's know ASAP about breathing problems. I know that Iressa for example a side effect is pneumonia. So, please have your hubby checked out ASAP. The minute you notice a difference, call the DOCTOR!!

ESPECIALLY on TRIALS!!! And I am trying to SCAR YOU!! I'm not trying to be mean, just trying to help! I have had a couple of my Support Group members go through trials and they told me that there doctor's told them to call ASAP if they notice any changes in breathing, skin, coughing, headaches, etc.....

Please keep us posted.

Warm and Gentle Hugs,

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