Stefan
Registered: 05/06/08
Posts: 1
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| #1 |
My mother was diagnosed with carcinoid in the lung one year ago. She went through chemo therapy for several times. But now her doctor has decided to stop the chemo because the side effects are too dangerous – and the tumor did not react at all. She should live with the tumor like with a pet, she was told. But before she is able to accept it we would like to know if thery any bulletin boards, new ways of treatments, ... for this special form of carcinoid cancer.
I add more detailed information about the already stopped treatment as soon as I get the information.
Thank you in advance.
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eibogie
Registered: 12/06/08
Posts: 2
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| #2 |
Stefan:
I was diagnosed with a 7.5.x 6.x 5.cm Carcinoid tumor in my right lung
in late Jan. of 2007. I went to Memorial Sloan Kettering in NYC for a 2nd opinion with Dr. Valerie Rusch and was told surgery was my only option. I researched other possibilities, was told there was a 'window of opportunity' and, if it had not spread, I could live a normal life span. I rejected the initial surgical approach and had another consult in Feb. Dr. Rusch proposed a vertical axillary thoracotomy (less invasive than Plan A) and I had surgery in March '07. She took out the tumor along with the lower, middle and part of the upper meridians (more than was originally planned, but to get 'margin'). Surgery was 5 hours and I was in the hospital for one week. Dr. Rusch took great care in the way she 'cut' to preserve the healing of nerves and muscles. The day after surgery they had me walking a mile around the hospital floor (with assistance and lots of drugs). I was very determined to recover fully and, with the help and support of many (Nancy of CFCF is an angel) and much hard work, I am well and my check-ups are clean.
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Gram5
Registered: 06/27/07
Posts: 4
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| #3 |
March, 2003 I had lower lobe of right lung removed due to carcinoid tumor. I was told then that was all that was necessary to do to control this cancer. In January 2007 I was diagnosed with liver and spleen cardinoids. These were caught early due to yearly CT scans. I started Sandostatin LAR 30 mg injections in February 2007. I've been to 2 oncologists with advice to stay on the Sandostatin with no other treatment. I have blood work, urine test and CT scans every 3 months to track the tumors. So far, nothing has changed for the better or the worse. I am not sure how well the medicine is working as I don't know how I would feel without it. I have diarrhea episodes of about 2-3 a day. I feel I am progressively getting more fatigued and have some muscle weakness and shortness of breath. I have more good days than bad and just try to rest more on the days I don't feel well.
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