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restaged to four


Mary

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My sister and I met with the surgeon on Monday. He had ordered a ct, mri, and bone scan. Her last tests were done Jan 31st and showed no mets. The doctor informed us that her cancer had spread. She now has two brain mets and two bone mets. So in two months while my sister has been undergoing radiation and chemotherapy(taxol/carboplatinum) she has become sicker. He just repeated that she has a very aggressive form of cancer. So I asked him what type of NSCLC she had since it is supposed to be slow growing. He said the biopsy just classified it as non small cell. He then informed us that she was not a candidate for surgery and refered us to the Oncologist. He shocked and hustled us out of there so fast we forgot to mention the clip he left in my sister when he did the lymph node biopsy.

I was unable to go with Charlotte for her Onc. appointment today but two of my other sisters went. He referred her to the radiologists about the 1 brain met and felt that the bone scan was "soft". He recommended staying with the current chemo cocktail although it made her really sick. Has anyone had success with taxol/carbo? From the postings it seems that navelbine/gemzar has better results. My one sister asked about Gamma Knife for the brain met. The closest center is at UVA in Charlottesville. I thought she would be offered Iressa or a clinical trial but she was not. He just advocated staying the course. Anyone have possible suggestions for treatment? My Dad died of Large Cell Lung cancer which from my research seems to be the most aggressive of the NSCLCs. Keeping the Faith

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Mary,

Am sorry to hear about your sister. Wanted to let you know that my husband has NSCLC with 3 brain mets. Did full brain radiation and then carbo/taxol. Had very good results for a while. Two of the tumors in his brain disapeared and the tumors in his chest shrunk.

Then after 6 rounds of chemo we started to see the one tumor in his brain grow a little as well as two tumors in his chest. Went to have the gamma knife done (we are in San Francisco and went to UCSF) and he was also put on Iressa. We will know in 1 more month after getting MRI's and CT Scans if it is working. He had no side effects from the gamma knife and has no side effects from the Iressa. However, the only side effect that he had from the carbo/taxol was fatigue. He has been very lucky.

Hang in there and keep pushing for the things you want from your doctors. We fired our first oncologist for he just wrote my husband off. Found someone new who is in the ring with us.

Prayers to you and your family,

Alyse

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Get another opinion, and soon. I got chills just reading about that doctor visit. I had not heard of anyone not knowing what type of NSLC the tumor was. I could be wrong but . . .

I too, fired my first oncologist when I got the feeling that he was waiting for the other shoe to drop. I love my new one.

My sisters live near UVA, but my only experience with UVA was with breast cancer patients. I knew of one woman who had 9 positive lymph nodes 5 years ago, and she is still fine and happy.

I have 4 sisters, and feel your pain.

gail

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I second that notion!! It's bad enough that she has to experience any of this at all, but at the very least, she should feel comfortable with the oncologist and be able to sit down and have anyquestions answered that she has as well as discussing treatment options. Keep keeping the faith!

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Thank you for the support. I seem to be pushing my sister constantly. This morning I talked with her and she was doing her taxes. (Yuck, reminded me that I need to do mine.) It struck me that LC is such a serious disease but we have to go on with the day to day good stuff and not live from scan to scan. I'm going with her to the radiologist today. I will definately push for Gamma Knife. I keep telling Charlotte about this website. Hopefully she will start visiting herself soon. I'm counting on the radiologist to clear up whether or not the cancer has spread to her bones. The surgeon felt it had, the Oncologist did not think so.

Keeping the Faith,

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Mary,

Some forms of NSCLC are not aggressive, others are. It depends how "differentiated" the cells are. Cancer cells that are undifferentiated are the most aggressive kind. Undifferentiated means they do not resemble normal cells.

In my mom's case she had large cell neuroendocrine carcinoma. This is a new classification from WHO (World Health Organization). It can be tested for using immunihistochemistry for chromograinin and syptophsyn (not exactly sure of the spellings, but I can find a reference if you wish)

In anycase, this kind of cancer is supposed to behave like SCLC and respond BETTER to chemo than NSCLC based on one study out of Japan

God bless,

John

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Don,

Me too! My dad has been so sick that I wanted to see him first thing this morning. I called over and mom said he was up all night throwing up and sick and that he finally, this morning, went to sleep.

I made myself crazy worrying about him and all the possibilities....etc... then I decided to paint the garage, put mulch in the garden, water the back yard and put up some shelved in the closet. Before i new it , it was 3 pm and I didn't have time to think of anything. Went over and visited with dad for a few hours and here I sit too exhausted to worry right now.

Your right about everyday...it has a way of sweeping you up and taking your mind away!

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I to had Taxol/Carbo which put me in remission for 6 months until we found out that I had bone mets to my arm - a signal that while one thing was fixed there was most definately activity. I was lucky and only felt gross for about 3 days out of each 3 week cycle.

Regarding your questions about navelbine/gemzar, I just asked my Onc about that just last week (just in case) and he said that his opinion was that both together was a toxic combination to the body and he would not want to use them together on me. He felt that the reduction in the quality of life from the side effects was just not worth the treatment. Like I said, his opinion only. Maybe you should research this, should he be right.

Peace and blessings,

Barbara

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