michellem Posted August 16, 2007 Share Posted August 16, 2007 Hi, I have just joined the group. I have read alot of great stories of survival and some very sad ones too. I am distraught. My mum has been diagnosed with NSCLC and it is stage 4 spread to part of the spine. She is starting on Chemo (Gematabine and Carboplatin) today but i have read that other treatments should be done with this. Anyone have any ideas, we are just accepting what the doctors says. Initially they were going to give her radiation as she has a large tumor in the lung but now they are holding off. Can anyone give me any information or tell me what i could do to help thanks michelle Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted August 16, 2007 Share Posted August 16, 2007 Welcome Michelle and very sorry to hear about mom. Could be a number of reasons--your moms age, health etc. I would ask the doctor why are the holding off on radiation. Also might want to get a second or third opinion if you feel more can be done. Knowledge and being pro-active is the key. Stay positive and take it one step, one day at a time. And as you can see by my profile I'm Stage IV and still here. Stay with us and keeps us posted, this is a great place to be. Prayers for the best. Rich PS: Below is a list of questions that might be helpful I have posted in the Lung Cancer News Forum. General information What causes this type of cancer? What are the risk factors for this disease? Is this type of cancer caused by genetic factors? Are other members of my family at risk? How many people are diagnosed with this type of cancer each year? What lifestyle changes (diet, exercise, rest) do you recommend I make to best manage my disease? Symptoms What are some common symptoms of this type of cancer? How can I avoid symptoms and/or reduce their impact on my daily activities? Is there anything I can do to make my symptoms better? Are there activities I should avoid that may make the symptoms worse? If new symptoms arise or existing symptoms worsen, what do you recommend I do? Diagnosis What diagnostic tests or procedures are necessary? How often? What will these tests tell me about my cancer? How can I prepare myself for any tests or procedures? Is this test done in a doctor's office, or do I need to go to the hospital? How much information concerning my diagnosis should I share, and at what time, with my friends and loved ones? If I seek a second opinion, will I have to repeat any tests or procedures? Staging How is staging used to determine cancer treatment? What is the stage of my cancer? What does this mean? Is my disease expected to progress? What is my prognosis (chance of recovery)? What are the cure rates for my disease? What are the survival rates for my disease? Could my disease go into remission? Treatment Keep in mind that all treatments offer risks and benefits. Discuss these with your doctor and consider your medical history and current condition in deciding whether the treatment approach is appropriate for you. What is the recommended treatment for my disease? Is this a standard treatment? Are there treatment options beyond the standard treatment for this disease? How often and how long will I have to undergo treatment? Are there any side effects of treatment? What are the benefits versus the risks of treatment? Has my cancer spread? If so, how does this affect treatment decisions? What are the expected results of treatment? How long does each treatment take? Is the treatment painful? What can you do to make it less painful? What will be involved in recovery? How long will I have to stay in the hospital? When can I resume my normal activities? Clinical trials What are clinical trials? How do clinical trials help people with cancer? Am I eligible for any clinical trials for this type of cancer? How will my progress be tracked while participating in a clinical trial? What happens if my disease progresses or is not treated effectively while participating in a clinical trial? How is treatment paid for if I participate in a clinical trial? Where can I get more information on clinical trials? Support Is there a social worker that I can talk to? Where can I find information on coping with my diagnosis? Where can I find emotional, psychological, and spiritual support? Where can I find financial support? How can I best minimize the psychological impact of this disease on my family and myself? Where can I find resources for children? For teenagers? Follow-up care Who should I call with questions or concerns during non-business hours? Where can I find more information about my cancer? May I contact you or the nurse to talk about additional information I find? Is there anything else I should be asking? Quote Link to comment Share on other sites More sharing options...
fillise Posted August 16, 2007 Share Posted August 16, 2007 Michelle--Welcome, I'm glad you found us. read my profile and you will see that my mom was also diagnosed with NSCLC with mets to the spine. She has done very well with her treatment. The chemo your mom is getting is a standard first line treatment. If you want to know more about different treatments, you can get some good information at www.onctalk.com Dr. West specializes in lung cancer and he does a great job of writing about different treatments and issues related to lung cancer. Feel free to ask any questions you have. Someone on this board will have some information to share and everyone else will offer their support. Susan Quote Link to comment Share on other sites More sharing options...
michellem Posted August 16, 2007 Author Share Posted August 16, 2007 Thanks rich (dadstimeon) for your reply I am going to speak to the doctors next week and find out why she isnt getting radiation. She is 61 and was is good health till now. but she has been in severe pain in her arm from the tumor pressing on a nerve. Thanks for the questions I am trying to learn everything I can to help her. Hope you keep well. Hi fillise, thanks for your reply great to here that your mum is doing well and it gives me great hope. Thanks for the website. Goodluck I have been going out of my mind and its is great to have people to talk to thank you Quote Link to comment Share on other sites More sharing options...
trish2418 Posted August 16, 2007 Share Posted August 16, 2007 Welcome, Michelle. Praying that treatment goes well for your mom. Please keep us posted. Trish Quote Link to comment Share on other sites More sharing options...
beatlemike Posted August 16, 2007 Share Posted August 16, 2007 hello and welcome.Hope you find the information and hope here you are looking for,prayer being said for your mom. Quote Link to comment Share on other sites More sharing options...
Welthy Posted August 16, 2007 Share Posted August 16, 2007 Michelle, Another welcome from me too! Sorry you had to find us, but you can already see that there are many people here with lots of knowledge and information. My husband was diagnosed with Stage IV also -- all in his lungs. I don't think the treatment plan for your Mom is out of line at all. Carbo/gemzar is a very acceptable treatment line and they may want to see how well it shrinks the tumors before going the radiation route. If the spine tumors are a pain problem, I can see radiation for them. They probably want to shrink the tumor in her lung before doing radiation on that -- if they do it at all. The smaller the field they have to radiate, the less lung tissue is damaged. Lung radiation in Stage IV is not typically done for curative purposes if there are multiple tumors, but with one tumor radiation or cyber-knife should certainly be possibilities. I also hope they start her on a bone-strengthener like Zometa to help protect her bones from future mets. I hope she has great success with her treatment. Hang tough. Welthy Quote Link to comment Share on other sites More sharing options...
kaneohegirl Posted August 16, 2007 Share Posted August 16, 2007 "dadstimeon"]PS: Below is a list of questions that might be helpful I have posted in the Lung Cancer News Forum. General information What causes this type of cancer? What are the risk factors for this disease? Is this type of cancer caused by genetic factors? Are other members of my family at risk? How many people are diagnosed with this type of cancer each year? What lifestyle changes (diet, exercise, rest) do you recommend I make to best manage my disease? Symptoms What are some common symptoms of this type of cancer? How can I avoid symptoms and/or reduce their impact on my daily activities? Is there anything I can do to make my symptoms better? Are there activities I should avoid that may make the symptoms worse? If new symptoms arise or existing symptoms worsen, what do you recommend I do? Diagnosis What diagnostic tests or procedures are necessary? How often? What will these tests tell me about my cancer? How can I prepare myself for any tests or procedures? Is this test done in a doctor's office, or do I need to go to the hospital? How much information concerning my diagnosis should I share, and at what time, with my friends and loved ones? If I seek a second opinion, will I have to repeat any tests or procedures? Staging How is staging used to determine cancer treatment? What is the stage of my cancer? What does this mean? Is my disease expected to progress? What is my prognosis (chance of recovery)? What are the cure rates for my disease? What are the survival rates for my disease? Could my disease go into remission? Treatment Keep in mind that all treatments offer risks and benefits. Discuss these with your doctor and consider your medical history and current condition in deciding whether the treatment approach is appropriate for you. What is the recommended treatment for my disease? Is this a standard treatment? Are there treatment options beyond the standard treatment for this disease? How often and how long will I have to undergo treatment? Are there any side effects of treatment? What are the benefits versus the risks of treatment? Has my cancer spread? If so, how does this affect treatment decisions? What are the expected results of treatment? How long does each treatment take? Is the treatment painful? What can you do to make it less painful? What will be involved in recovery? How long will I have to stay in the hospital? When can I resume my normal activities? Clinical trials What are clinical trials? How do clinical trials help people with cancer? Am I eligible for any clinical trials for this type of cancer? How will my progress be tracked while participating in a clinical trial? What happens if my disease progresses or is not treated effectively while participating in a clinical trial? How is treatment paid for if I participate in a clinical trial? Where can I get more information on clinical trials? Support Is there a social worker that I can talk to? Where can I find information on coping with my diagnosis? Where can I find emotional, psychological, and spiritual support? Where can I find financial support? How can I best minimize the psychological impact of this disease on my family and myself? Where can I find resources for children? For teenagers? Follow-up care Who should I call with questions or concerns during non-business hours? Where can I find more information about my cancer? May I contact you or the nurse to talk about additional information I find? Is there anything else I should be asking? is this a sticky cause if not it should be LOL Quote Link to comment Share on other sites More sharing options...
ernrol Posted August 16, 2007 Share Posted August 16, 2007 Michelle, Welcome to the site. I had Tarceva along with my chemo the first time and now the second time I am having Avastin. Both of these drugs can be given along with chemo. You maight ask about them. I am starting my thrid year and I have not had a sick day yet. I will pray that your mom has good resutls. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
Adrian Posted August 20, 2007 Share Posted August 20, 2007 carboplatin/gemzar is an extremely common "first line" therapy (which is what your mother is getting). Some doctors, including my father's onc choose it over carbo/taxol because in some ways taxol can have harsher side effects. There is a non-chemo medicine that has in the last 3 years become widely used in the first line treatment setting called "Avastin" which you should ask the oncologist about. Unlike chemo which directly attacks cancer cells, Avastin attacks cancer by attacking the blood vessels that feed tumors. Studies have shown that Avastin+chemo works better than chemo alone. (Even though yor mom has already started chemo, Avastin could be added in after the fact). With respect to spine/bone (as well as lung)radiation, most oncologists today believe radiation in a stage IV is not necessary or warranted if the place to be radiated is not causing pain or threatening to cause further immediate damage (not so when the brain is involved). Welcome, please ask us whatever you want. Also, visit www.onctalk.com where Seatle oncologist, Dr. Jack West, a bona fide expert on lung cancer, answers individual questions posteds by us (and people like us) on a daily basis and writes up articles delving into the frontier of lung cancer research. Quote Link to comment Share on other sites More sharing options...
michellem Posted August 28, 2007 Author Share Posted August 28, 2007 Hi, Just want to let you know the doctors say its a pancoast tumor and it has spead to the bottom of the spine. Does anyone know anything much about pancoast tumors. And they say spread to spine, does that mean there is a tumor on the spine, or its in the bone or what. Very confused and very upset. Mum is getting pain all over the place too, I just hope its from the chemo. but the pain isin her back and knee and she is very stiff and getting weaker. Any information or advice greatly appriciated Thank you all for your replies so far. Take care, Quote Link to comment Share on other sites More sharing options...
john Posted August 28, 2007 Share Posted August 28, 2007 As other people have said radiation is usually not done for Stage IV to the lung (I believe this is true, ask the Dr) Another thing to find out is are the Drs sure there are mets to the spine and not something else. This is important because *sometimes* there are false positives and then she may not be a stage IV. Pancoasts can be operated on even if there is rib involvement. And as Welthy said Zometa and other biphosphonates are sometimes given for bone mets. Definitely try to talk to her Dr with any of your questions. They may be busy but most good Drs take time with family members. Quote Link to comment Share on other sites More sharing options...
michellem Posted August 28, 2007 Author Share Posted August 28, 2007 Thanks John, yes will talk to the onc next monday because she is in for chemo then. They are doing 4-6 rounds then rescanning. so if anything was wrongly diagnosed it should show up differently next time. it was a pet scan they did a few weeks ago. please god they have something wrong! Will talk to them about surgery again. but the truth is the pain has made her very weak. She was misdiagnosed origionally and the pain got worse over months. thanks again Quote Link to comment Share on other sites More sharing options...
Lyliana1277 Posted December 15, 2007 Share Posted December 15, 2007 Hi Michelle, My mom was also diagnosed with stage IV nsclc last year. It was also in her lymph nodes, spine, and sternum. All small lesions, but there. Slow-growing. Did your mom smoke at all? Mine never did. She was started off with carbo/taxol combo along with avastin. Just a few months ago she had a reaction to the carboplatin so they stopped doing that. Just recently she had to start whole brain radiation for three weeks, 15 treatments. She just finished and will be getting another PET scan Monday. They held off on the radiation because the carbo/taxol, then the taxol, with the avastin was working. They decided that radiation was necessary since the chemo couldn't cross the blood-brain barrier. There is hope. My mom is still going. This Wednesday will be an important day. My thoughts and prayers are with you and your mom. Stacia Quote Link to comment Share on other sites More sharing options...
michellem Posted December 17, 2007 Author Share Posted December 17, 2007 Hi, Thanks for your reply. My mum had chemo and it has stopped for the moment. she isnt very well at the moment very tired, she has gone into a hospice for a few days to try and get her back on her feet. The doctors are just waiting a few months before any more treatment. She is stable at the moment, so I suppose that is good. thanks again Quote Link to comment Share on other sites More sharing options...
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