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Hello. I am glad I found this site. I really need some answers.

My husband was diagnosed with NSCLC 18 months ago. We have been through 8 different drugs with relatively no side effects and no action toward reducing the cancer. In August, he started taking Gemzar and boy did the side effects hit. He would get the chemo on Wed. and by Fri., he was down. Very short of breath, fever, chills, etc., but by Sunday-Monday, he was rolling again. He had 6 treatments (1xweek) and landed in the hospital. He couldn't get breath. O2 was at 67% and his heart was A Fib. Got the heart back regulated, and got the O2 normal enough he could go home. Said he had fluid around his lungs....used Lasix for 2 weeks and they sent him home. He was home 1 day and back to the hospital we go. Swollen ankles etc. He is now in the care of his oncologist who has a "plan". He wants him to lose 8# (supposedly fluid) and then he thinks they can start backing off the O2.

We think this whole situation was caused by the Gemzar. I found on the internet that Gemzar causes fluid to build, which in turn causes A fib of the heart. Then, we find out that the Gemzar may have started shrinking the tumor!! Do we stay on the same drug? Why is the fluid building if the cancer is shrinking? Nothing has been affected by the cancer except his lungs and some lymph nodes in his chest. I see where some of you have had surgery to remove the tumor. The surgeons around here won't remove Jay's tumor (Lower right lobe) b/c they say if they can't get it all, they won't consider surgery.

We have 3 small children, we each own our own businesses. He's not working, I haven't been working b/c I've tried to be with him as much as possible. I feel like I'm neglecting him if I'm here with the children, and I'm neglecting the children if I'm with him. My mother keeps telling me not to make the trip everyday to see him (he's an hour and a half away from home) She doesn't seem to realize that our time together may be limited and I want to spend as much time with him now while he's able to talk to me and laugh as possible.

I'm so confused. Is it possible to come out of this? Where is the fluid coming from? Why is it just now starting to become a problem when the cancer is shrinking? Would the cancer have spread, even though the tumor itself is shrinking? No one here can seem to answer any of my questions. Hope someone out there may shed some light.

Thank you for listening, and God bless.

LisaK

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Hi Lisa,

I'm glad you found this site and I know you will get many answers here. It sounds like you and your husband should have been getting more answers and information from his doctor. Have you sought a second opinion at all? You have many considerations going on in your lives right now. You need to "farm out" as many responsibilities as you can and concentrate on getting a firm grip on what can medically be done and where it is best to accomplish that.

You aren't alone and we are all here to support you.

Peace and blessings,

Margaret

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Boy Lisa, do we have a lot in common. My husband also has inoperable NSCLC, diagnosed last summer. We have 3 children too. I feel bad that your husband is so far away. That must make it terribly hard to get answers and talk with his doctor.

I don't have any answers about your medical questions. My husband had gemzar as his 3rd line chemo and did well with it. Yes, it knocked him down for a day or so, but no worse than the others prior to it. He did have a good response from the gemzar. It killed one of his tumors in the mediastinum. He now takes Iressa and is doing well.

Go be with your husband and make someone answer your questions. All the best to you and your family.

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