carol

Hi, my dear friends, I would like to know if any of you have had this problem. My dad had the upper and middle right lung removed last June, started Iressa last Sept. and has been doing great. He's been taking a lot of supplements too such as protein powder, flaxseed oil, multi vitamins, etc. Recently, his blood test came back with high ALT and AST. We are not sure if it's caused by Iressa or something else. (BTW, He doesn't drink nor smoke). So he stopped taking those supplements and both ALT/AST went down a little bit but are still beyond the normal range. I read from some articles that SAMe helps with liver disease. Have any of you tried that? Does it work? And who is not supposed to take it? Thank you for any information! Carol

Hi, My father had the surgery in June to remove the upper and middle right lobes. The doctor also found some tiny nodules in his left lung. He was staged IV. However, he's been doing extremely great after surgery. All the pain is gone, he can walk or ride a bycycle for more than 30 minutes, he gained back the weight, his blood test came back great. His last CT scan is clear even though we know the tiny nodules are still there. Anyway, we are not giving up! He just mailed me his tumor slides (He lives overseas). I am looking for a lab to send in the slides for pathology analysis. I would like to find out the subtype of his tumor (Adenocarcinoma), some drug resistance indicator such as ERCC1 and Beta Tublin, and tumor ‘marker’ such as P53, Ki67. If you have any information on this, please let me know. Thanks

A while ago, I read a post about sending your tumor spicemens to some companies and they’ll do some tests to determine which chemo drugs are effective. I can’t find the post anymore or maybe I saw it from some other places. Anyway, have any of you hear about this and do you know which companies would do that? Thanks,

HI, Fay, When you were on Iressa, did anybody ever mention that a patient had to wait 3 months before starting Iressa after a surgery because the medicine may impact the healing from surgery? This is what my father was told by his oncologist but I can't find any info on the net. I wonder if it is some new findings in some clinical trials. Thanks,

I didn't mean to discourage you, I just want to share some info. My fahter's PET before any treatment shows SUV of 4 on the primary tumor. After two rounds of chemo SUV goes down to 1.1. However, when they did the biopsy during the surgery, cancers were still there on the primary tumor.

Hi, I have not been able to get on the net while I was overseas. My father had the surgery on June 19. They found the cancer had spreaded to both lungs. The surgeon still decided to remove the primary tumor. He took the upper and middle right lobes out. My dad recovered pretty well and started walking after 4, 5 days. It's been 3 weeks since his surgery, he doesn't have any pains, but occasional coughing. He's staged IV (pT4N2M1). His doctor is considering putting him on Iressa. But he said my dad had to wait 3 months before he can take Iressa since Iressa may impact the healing from the surgery. Thanks all for your prayers!

Hi, as I mentioned before, I took a whole day trip by air to be home with dad for his surgery. The surgery was scheduled to be tomorrow at 7am, which is US central time 6pm on Wednesday. I am so nervous. Our family needs lots of prayers now. I'll keep praying for everybody on this board. Let's all hope for miracles. Carol

Thanks for all the good wishes and prayers. You people are just wonderful! I went to the store last night and bought whatever I could think of. I know my dad can get most of them over there, but buying the stuff for him just made me feel a little better. And I know it will make him happy too. I will keep you posted.

Hi, I am a daughter of a NSCLC patient who’s currently overseas. I visit this board very often and have gotten a lot of help and inspirations from you. My dad has finished 3 rounds of chemo and has decided to take a chance on surgery. His surgeon will perform a thoracoscopy first to biopsy the small nodules and then a lobectomy depending on the biopsy outcome. I am flying out of the States this Friday to be with my father during his surgery. It’s a whole day trip and I’ll be home with him on Father’s Day! I am happy and sad. I would like to hear from those of you who have gone through surgery or who have cared for a loved one that went through surgery. What are the common complications of a lung surgery? What signs should I look out for. What can I take with me for my dad? I can only think of things like protein powder, whey milk power? Anything else? Pain medicine? Over-the-counter medicine? Or even prescriptions since doctors over there can prescribe them too. I would like to have the information before hand. Doctors always don’t tell you all. Are there any books that teach you how to care for a patient who just gets out of a major surgery? I still have a couple of days to order it before I leave. Any information is appreciated.

I was reading a book The Chemotherapy & Radiation Therapy Survival Guide last night by Judith McKay and Nancee Hirano, and I came across something about tumor marker. Here's what it says in the book: 'Although there is no current test that can accurately predict cancer's occurrence or cure, there are a number of substances in your blood whose presence at certain level is associated with particular kinds of cancers. These substances are called tumor markers... If you have breast cancer, your doctor may be testing your blood for the tumor marker CA15-3 or CA27.29. THe tumor marker CA-125 may be peridodically checked if you have ovarian cancer... A rise in the prostatic-specific antigen(PSA) can indicate prostate infection as well as prostate cancer. A rise in the blood level of carcinoembryonic antigen (CEA) is associated with cancer of the colon, pancreas, breast, or intestines, ..... A rise in the enzyme prostatic acid phosphatase(PAP) is associated with cancer of the prostate, bone, or multiple myeloma...' I have not read about any tumor markers for lung cancer though. I believe the mysteries will be revealed one day.

Hi, thank you all for your support! Now my dad's radiologist is pretty sure those mass in the left lung are mets. But the oncologist isn't quite convinced. He suggested a VATS (Video Assisted Thoracic Surgery) to biopsy the small mass, if it is cancerours, then sew up the cuts and do nothing. If it's not, perform a lobectomy to remove the right middle lobe. My dad's still very hesitant because even a VATS requires some time to recover and may cause infection or complication which would delay further treatment if the mass was found cancerous. He's 67. I asked my sister to send me all the scans and info and I will take to MD Anderson for a second opinion. But I really don't expect to hear something dramatically different from what I have been hearing. After all, scans can only show so much and reading scans is very subjective. Carleen and Sue, when doctors told you that the cancer was in the blood stream, how did they tell? What kind of test did they do? Based on my reading, up till now, there's no way to detect cancer by blood test. I know there're some research on this subject, but not to the extent where the scientists are so sure. And Sue, I have one more question for you. After they 'sewed' you up, how long did you have to wait to start chemo? Do you mind telling me what kind of chemo drug and radiation therapy you used and for how long? Thanks in advance! Let's all pray for miracles. Carleen, I love your picture. You two make a perfect couple! Love, Carol

Hi, has anyone obtained second opinion from MD Anderson in Houston, TX? Can you recommend oncologists/radiologists who specialize in NSCLA? My dad’s CT shows small nodules in both lungs with max diameter of 2mm. We need second opinion to determine if these are cancerous. The two primary tumors are in his right lung. I would like to know: 1. What kind of information do I need to provide other than the CT and PET scan? 2. How do they do it? Is it better for me to make a trip to meet the doctors? I live in Dallas. 3. How long does it take to get their opinion back once they receive the info they need? I need this done quick,quick, quick. 4. Do they only provide diagnosis such as staging, or do they also recommend treatment plans? 5. What’s the cost? Thanks in advance!!!

Hi, has anyone obtained second opinion from MD Anderson in Houston, TX? Can you recommend oncologists/radiologists who specialize in NSCLA? My dad’s CT shows small nodules in both lungs with max diameter of 2mm. We need second opinion to determine if these are cancerous. The two primary tumors are in his right lung. I would like to know: 1. What kind of information do I need to provide other than the CT and PET scan? 2. How do they do it? Is it better for me to make a trip to meet the doctors? I live in Dallas. 3. How long does it take to get their opinion back once they receive the info they need? I need this done quick,quick, quick. 4. Do they only provide diagnosis such as staging, or do they also recommend treatment plans? 5. What’s the cost? Thanks in advance!!!

Hi, My dad was diagnosed with Adenocarcinoma in March. They did a helical CT and found a primary tumor in his right mid lobe, also some tiny mass in the lower left lung. According to the radiologist, there were about 30 of them with a maximum diameter of 2mm and he suspected that the small mass were mets from the primary tumor. PET only picked up the primary tumor with a max SUV of 4. Due to the size, PET didn’t pick up the small mass in the left lung. They did a biopsy on the primary tumor but could not reach the small mass. Therefore my dad was staged IV. The strategy was to put my dad on chemo and re-evaluate after two treatments. If both the primary tumor and small mass responds, then the small mass is mets. If only the primary tumor responds, then the small mass is due to something else. Now after two treatments of Gemza/Carboplatin, CT shows the primary has shrunk quite a bit, however, the small mass in the left lung is still there. The radiologist said he could tell that they became smaller and he was pretty sure they were mets from the primary tumor. PET shows the SUV on the primary tumor now reduced to only 1.1. Neither CT nor PET picked up any enlarged lymph nodes. I am still not convinced. If there’re no lymph nodes involvement, how did the cancer cells travel from the primary tumor to the left lung mass? If they travel through blood, how come the other parts of the right lung did not get them? Can human eyes detect the differences in size for something less than 2mm? Also, if the small mass were mets, they should have disappeared because the primary has shrunk from 5cm to less than 3cm. Have any of you seen situation like this? Is there a way to confirm the malignancy of the small mass in the left lung?

I am so desperate. I posted my first message yesterday as a guest. My dad started coughing in Feb. for a month before he did a CT with MIP. It shows a 3cm tumor in right lung and some tiny little ones in both lungs. They are pretty vague on the CT with a max diameter of 2 mm. The doctors staged him IV and told my mom it was incurable. PET did not show any mets in other lung or the mediastinum, or elsewhere in the body. Now the doctor who did the PET said that those tiny little ones shown on CT must be benign. However, dad's doctor is not sure since PET has limitation on resolution for tumors < 1cm. They still stage him IV and put him on Gemzar/Carboplatin. He will do another PET after he finishes two treatments. Based on my research, whether he has lymph node involvement or not is going to be critical in deciding if he can go surgery. Is it possible that PET might have given some false negative regarding those tiny little ones shown on CT? How accurate is PET in dictating tumors smaller than 1cm even if they don't show on the film. Can the SUV value tell the differences? How accurate is PET in dictating mediastinal lymph-node metastases? Have any of you experienced false negative results from PET scan?