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[DayDreams]

On Jan 12 2007 my world changed forever. My dad was diagnosed with NSCLC. He had a 1/4 of his lung removed (upper right) as well as a lymph node in his outer chest cavity. He went through Chemo, was able to tolerate cisplatin for 6 sessions, and then a cat scan revealed he had a tumor that was dead in the center in a lymph node outside of his traechea (sp?). They decided on more cisplatin, and increasing by 75% for 3 more sessions. Then he was on avastin. He was losing a lot of blood, and needed a blood transfusion. 3 weeks later needed another one. So they stopped the avastin. He had cat scans, endoscopy, colonoscopy, bone marrow testing...& everything came back clear except for in right adrenal gland. He was not able to eat, horrible pains in his stomach, and they told him he had a stomach infection & gave him antibotics. After 4 months they said he had some kind of blockage in his small intestine. Turns out it was a tumor the size of a football. They were unable to remove the tumor in the adrenal gland because it got so big it is wrapped around his aorta. His oncologist said his body cannot handle chemo because he is almost at renal failure due to the chemo he already has had.

I got him an appointment at Sloan Kettering, and the Dr said he is no where near renal failure, and that he has to do chemo. He is very depressed and it breaks my heart. He is very young only 52, and I am not ready to lose my dad. I still need him here and so do my kids.

Anyway, sorry to ramble on and on....my name is kristina...hello

[Patti B]

Kristina-

Sorry you have the need to be here but this is a great forum with extremely knowledgeable and supportive people.

Please know that you can come here with any questions you may have, or just come to vent. Its OK. We will all be here for you.

You and your dad will be in my prayers - your dad sure is lucky to have you as his daughter!!

Hugs - Patti B.

[beatlemike]

My prayers are with you and your father Daydream.

[Tom K]

I am sorry you are here Kristina. It does sound like your Dad is having a tough time of it but I am glad you took him to another doctor. With this disease you have to be assertive and if you don’t get help from one doctor move on to another until you are satisfied that everything that can be done is being done. Depression is pretty common amongst us cancer patients. He should ask his doctor about an anti-depressant. A lot of the members of this community have had great results with them.

[Muriel]

Welcome Kristina. I'm glad you found us, but sorry you have reason to be here. You have come to the right place for advice, information, etc. I'm really glad that your dad went to Memorial Sloan Kettering. I'm not certain what's available in So. Florida, but we do have M.D. Anderson Cancer Center in Orlando, Moffitt in Tampa, and the Mayo Clinic in Jacksonville if he wants to go some place closer than NYC.

This is just my opinion, but the very worst thing your father could do would be to ever go back to the doctor or group that he saw before going to MSK. Considering the size of the tumor in the small intestine, I can't imagine that it didn't show up long ago on an abdominal CT scan or a PET scan. How in the world could it get to be so big? I'm confused tho., is this football-size tumor part of the tumor on the adrenal gland or is it a different one?

I'm sure you and your father are very frightened and anxious about this whole mess. He is probably on the right track now that he's been to MSK. Where will he receive the additional chemo?

Many of us here have been to several doctors. I moved from VA about 3 years ago. Back there I had one Onc. and a Pulm Specialist. I liked them. Since moving to Florida, I've seen 3 Oncs and 3 Pulmonologists. Currently, I'm happy with the team that I see at MD Anderson.

Please keep us posted on how he is doing, where he is receiving treatment, etc.

Muriel

[Treebywater]

Kristina,

I'm so sorry that you need to be here, but happy that you've found us. I hope you are able to find some answers for your Daddy.

[Janet B]

I am so sorry you need to be here Kristina but you have found a really wonderful supportive place. I am glad you went for another opinion and Sloan is one of the best. Come here to ask anything - someone will be able to help you and we are all here to support you. And no one minds rambling! My prayers are with you.

[DayDreams]

Thanks so much everyone. To answer some questions, the tumor apparently did not show up on any of the tests he had. When they did the endoscopy, they did see what they said was a small legion. 2 weeks prior to surgery, we were able to find a place to have a PET scan done (bc his kidneys were damaged, he had a hard time finding a place to do it) and it lit up very little in the intestine.

I have to say, that one thing I do know, is how lucky we are to have the family that we do. Before being diagnosed, my father had kust started a new business, which has gone under because he was unable to do anything. Besides physically and emotionally draining, I see how fiancially draining this has and still is for my parents. Even though he has insurance, when you have 3-4 visits in a week with co-pays of $150 not to mention meds, it is costly.

We are sending my father to a place that will detoxify his body. It is so expensive, and my parents cannot afford it, but we all coming toether to pay for it.

This has really made me think of some who cannot afford second opinions, their bills, or alternative treatments to explore (along with medical). Anyway, I have decided that I am going to start a foundation to help those who are fighting lung cancer. I want to be able to pay a bill for someone, buy a ticket for them to get a second opinion, or just visit with family, whatever to lesson the finacial load. It will take some time, I know I have a lot of work ahead of me....but everyone has to start somewhere.

I will keep you all posted once I file the paperwork needed to become a non profit...I have already statred to make a myspace page, and will let you all know when I am finished.

Thank you all for your kind words, and support. This is such a terrible disease, but I have to say, the way everyone comes togther to help each other is very inspriational. I will continue to pray for everyone on these boards. Everyone here has cancer, some have it physically, but we all have it, and we are all here to fight it one day at a time.

Thanks again!!