schimd Posted June 16, 2003 Share Posted June 16, 2003 Hi! My name is Diane and my mom was diagnosed with SCLC last month. Or they say... My mom began having flu-like symptoms, dry mouth, and poor tasting food the end of December, beginning of January which began a flurry of tests, treatments etc. Finally, an abdominal ultrasound revealed enlarged lymph nodes. A subsequent CT Scan of the chest, abdomin, and pelvis revealed enlarged lymph nodes in the mediastinal and abdominal areas. Lymphoma was the suspected diagnosis. Two biopsies later the diagnosis of poorly differenced carcinoma was made with a belief that the disease is sclc given her history. She started chemo the beginning of June---21 day cycle of carboplatin and VP 16 for 3 days. I have been on the Internet constantly and have talked to her oncologist to ensure that this is the best treatment for her. She does not have any pulmonary symptoms but rather GI symptoms---bloating, gas and nausea. Of course she is also tired most of the time but has problems sleeping. I am so concerned that I am making the right decisions as I know once we get started there is no turning back. She is being treated at MD Anderson and her oncologist appears to be doing what is appropriate. Am I just overly concerned because this is my mom, or is there anything else I should be researching? Diane Quote Link to comment Share on other sites More sharing options...
Candy Posted June 16, 2003 Share Posted June 16, 2003 My husband was diagnosed with SCLC in December. He didn't have the same symptoms as your Mom and I don't know if her symptoms are "normal" or not. Hugh's symptoms were mostly shortness of breath, coughing, pain. Hugh's treatment is the same and it has responded wonderfully to the carbo and VP16. He has had eight rounds and will have scans next week after which it is possible (but unlikely) that he will continue. As far as research goes, I guess its always good find out what you can. I have learned a tremendous amount from this board. It's only my personal opinion, but I don't recommend you do a lot of research on line. There are too many horror stories and it is extremely depressing. Much of the information you find is either untrue or outdated. I had to stop surfing the net. The only place I come to online now is here. Welcome! I am sorry you had a need to find this place, but you will find much support and caring here. It has saved my sanity! Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted June 16, 2003 Share Posted June 16, 2003 I agree with Candy. Dont read the internet. Speak with moms ONC. or come here . I am not saying were experts, but were living it. The internet is full of numbers that all say the same thing. Its depressing and can tear you apart. There is at least one person on this board has been through everything you can describe. Do make lists of questions for the ONC. visits and write notes down. Your mom probably wont hear what he is saying or not remember clearly because of how tramatic LC is and how it effects people. My mom still doesn't remember anything her ONC. ever said. So we make sure either my sister, myself, or my step father are at every single appointment. This is treatable... Quote Link to comment Share on other sites More sharing options...
Don Wood Posted June 16, 2003 Share Posted June 16, 2003 Welcome, Diane, to the message board. There is a wonderful family here, with caring, support and info. I hope all goes well with your mom. Keep in touch. Don Quote Link to comment Share on other sites More sharing options...
rayroy Posted June 17, 2003 Share Posted June 17, 2003 Welcome to this board you will find great understanding and support. Without this board my father would probably be dead without hope! Quote Link to comment Share on other sites More sharing options...
Karma1976 Posted June 17, 2003 Share Posted June 17, 2003 Schmid you sound like you have your act together and are VERY into finding out all you can. I was the same way and it is your parent!! Here is a great place to be to find out about treatments and in general aside from all the studies and big fancy medical terms, what pleural effusion, Gamma Knife, and carbo/taxol/taxotere/VP-16 actually looks like form a patient/human point of view, not a double blind study. Welcome!!! Quote Link to comment Share on other sites More sharing options...
norme Posted June 17, 2003 Share Posted June 17, 2003 WELCOME DIANE, HAVING BEEN THROUGH THIS LIKE SO MANY ON THIS BOARD MANY TIMES I CAN TELL YOU I HAVE LEARNED MORE HERE THEN ANYPLACE OR ANY DR. WHEN WE SEE THE DR WE FORGET ALL WE WANT TO ASK AND WHEN THEY TELL US SOMETHINGS, WE THINK WE KNOW WHEN LEAVING THEIR OFFICE BUT GET HOME AND SCRATCH OUR HEADS. THIS PLACE REALLY KNOWS IT ALL. SOME LIVE IT EVERYDAY. WE CAREGIVERS CAN ONLY GO BY WHAT WE SEE IN OUR LOVE ONES AND IF SOMETHING IS NEW TO THEM WE SOMETIMES DON'T FEEL WE ARE DOING THE RIGHT THING. GET ON HERE AND FIND WHATEVER YOU NEED TO KNOW AT ANYTIME. GOD BLESS Quote Link to comment Share on other sites More sharing options...
Carleen Posted June 17, 2003 Share Posted June 17, 2003 Welcome Diane, I am sorry we have to meet under such crummy circumstances. You've come to a wonderful and warm place though, full of hope, caring, and support. We are also a great place to come for information and answers. If someone here isn't going through what you are, or has in the past, our members also try and help one another by researching and asking questions. I am really sorry about your mom. My husband was originally diagnosed with SCLC, but after a few different pathologists viewed the biopsy stain slides the final diagnosis was Atypical Carcinoid. It is important to have an accurate and percise diagnosis, as it can change some of the treatment options open to you. However, I think the standard first line protocal for each type of lung cancer, that is not eligible for surgery, is chemotherapy/radiation. There are all different combinations, and there really is no right or wrong one, it's just a matter of trying different ones until you get the combo that works for you. I think your mother is started on the right road to recovery, and I will pray for her to get there. Keep your hope alive. There are people who are fighting, and beating this disease. Your mom can be a survivor too. My prayers are with you Carleen Quote Link to comment Share on other sites More sharing options...
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