Guest sunflower Posted February 17, 2005 Share Posted February 17, 2005 Hi. My Mom (age 60, heavy smoker until quitting 1 1/2 months ago) was diagnosed in the last week with Stage IV LC that is in both lungs and has met to the brain. She was feeling good until she got the prognosis of 3-6 months without chemo. She is going down hill quickly and is very depressed. The doctors weren't recommending chemo because of her brain cancer and they weren't sure it would extend her life. She is going for a pet scan today because she originally asked to have the chemo anyway because she didn't want to give up. The chemo they would give her is navelbine. She is now rethinking the chemo because if she only has a few months she doesn't want to be sick. She is very stressed and needs something to calm her and raise her spirits. Has anyone taken anti-depressants or anti-anxiety medication that can help? So far the doctor just gave her a few sleeping pills because she hasn't been able to sleep but it is not helping her depression. Also, it has been hard because the doctor is hard to reach and definitely has no bedside manner. My self, my siblings and our children are all going to Florida to visit my Mom next week. She is trying to fit a lifetime of activities with the kids into a few days. I wanted to make sure she enjoys the visit and isn't too stressed. She is already worried that the way she looks from the steroids will scare the kids. I was glad to come across your site last night. It is hard to be in this situation without being sad and your optimism and determination made me feel better for the first time in a few days. Thanks for your help. Patti Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted February 17, 2005 Share Posted February 17, 2005 Hi Patti. I am glad that you found this site as well! It is very important to understand and to believe that it is possible to live beyond the predicted days that some docs will give you. We, here, on this board do not buy into statistics. You will see that many, many people survive much longer than anticipated. Why can't your Mom be one of those people??? (she can!!!) This is a serious illness; no doubt. That is where the seriousness of asking for good help comes in. (or demanding good help, if it comes to that). There is a clue right off the bat. The doctor is difficult to reach and is unavailble for support... Time maybe to find another doc. At least get a second or third opinion. If someone handed me a death sentence (and they did 2+ years ago), then I would RUN to find someone who would help me to live! There is much information here. Look at our profiles below our signatrures and you will find disease, treatment, and hope. Best to you and to your Mom. Cindi o'h Quote Link to comment Share on other sites More sharing options...
kimmek Posted February 17, 2005 Share Posted February 17, 2005 Patti HI and WELCOME So glad you found this site, from yourpost i think you will find answers to alot of your concerns. First..If this were my mom I would be hightailing to another dr for another opinion. Mets to the brain are not "brain cancer" and they almost always can be treated. No not with chemo, but radiation. Dont not let a dr or anyone else tell you how long your mom has with or with out treatment. They do not know. The drs are giving you the worst possible senerio with stats that are at least 5 yrs old. You can tell from the profiles of many here that they have been on this board much much longer than they should have been according to the dr. If your Mom wants to fight this, then she needs to locate a dr that will fight with her. Chemo effects everyone different. My mom had a really easy time with it as alot do. But then there are of course those like our Beth (Justakid) here that Murphy's Law seems to have written for her. If it can go wrong it will. She has had numerous bumps in here journey, but she is still fighting and will win. Talk to your Mom and siblings, find out what SHE wants then do everything you can to help her. And remeber Knowledge is Power!! God Bless Kim Quote Link to comment Share on other sites More sharing options...
stand4hope Posted February 17, 2005 Share Posted February 17, 2005 Dear Patti, You need to convince your mom that she needs to see another oncologist as FAST AS SHE CAN! I understand from your post that your mom is Stage IV. Well, so is my husband, and he was a very advanced Stage IV on diagnosis - 18 MONTHS AGO!! He had EIGHT brain mets, and has extensive bone metastases. His disease is stable, he is working full time 10-hour days and doing well. Yes, chemo and radiation treatment did knock him on his butt and it took a while to recover, but recover he did!!! Your mom could have a LOT of time left. Please don't listen to that prognosis and try to convince your mom to take a different approach. And one more thing, navelbine ALONE for first line treatment is TOTALLY not concurrent with all the posts you will see on this website. Typically, as in your mother's case, whole brain radiation or stereotactic radiation (if she doesn't have very many mets) is given first for the brain. After that, usually lung radiation begins concurrently with a chemo cocktail, i.e., carbo/taxol, carbo/taxotere, gemzar/navelbine, etc. If a person is not in good health, sometimes the radiation and chemo combo is given in reduced doses. In any case, I hope you can convince your mom to run as fast as she can to another oncologist or a cancer center of some sort. I know this is hard. It's hard for all of us, but the first few weeks after diagnosis are the worst. Sending you love and hugs and asking God to bless you and your mom with His favor. Love, Peggy Quote Link to comment Share on other sites More sharing options...
CharlieD Posted February 17, 2005 Share Posted February 17, 2005 Hi Patti - Sorry you had to find us but certainly glad you did. You have already heard the best advice from those before me. Don't give up! There are a lot of Stage IVers on this site that expect to be here for a long time, me being one or them. That Doctor that is so hard to contact with no bedside manners gets paid way to much money by your mother and others like her to act like that. You should consider telling that jerk to take a hike. If you could get your mother to a major cancer center for at least a consult to review the options I feel certain you would not hear the same prognosis. To get a head start, you might consider the "Ask the Experts" forum on this site. They are great and could get you thinking positively and about how your mother can survive, rather than the opposite. You will get a lot of support on this site. We are all pulling and praying for you and your family. Take care and God Bless. Welcome! CharlieD Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted February 17, 2005 Share Posted February 17, 2005 Hi Patti, You have been given gold standard advice here. I hope you can convince your mother to take it. Keep us posted. XOXOX Prayers, MaryAnn Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted February 17, 2005 Share Posted February 17, 2005 Hi Patti, and welcome.You will find many caring and knowing people here.I agree 100% with all the above posts. I too am stage 4 and was given a death sentence of 5 to 12 months.That was in April 2003.Almost 2 years ago.I have enjoyed much quality time beyond what they (drs) gave me,and intend to have much more of it. Your mom can possibly have a long time yet as well.Get other opinion from cancer specialist,explore all options of treatment,and find a dr. willing to fight for her and with her. They are out there. Please don't any of you give up hope.This first part of the battle,diagnosis,despair,fear and everything else with it is one of the most difficult to deal with in my opinion.Once you have a medical team and a game plan to fight it with you will gain more control of it. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted February 17, 2005 Share Posted February 17, 2005 Hi Patti, Welcome to the family . My husband has stage IV nsclc also and is fighting it for all he's worth. He has been stage for over a year now and is doing pretty good. Please consider another opinion for your mom. You might want to print out these posts to give her. There is a lot of hope and information on this site. Hope you will look for it, you will find it. My prayers for your family. God Bless you. Sue Quote Link to comment Share on other sites More sharing options...
lindseysmom Posted February 17, 2005 Share Posted February 17, 2005 Hi Patti, Welcome!!! Please ask your Mom to get a second opinion as the others have said. Best Wishes, Dee Quote Link to comment Share on other sites More sharing options...
Treebywater Posted February 17, 2005 Share Posted February 17, 2005 Hi Patti-- My Mom was just diagnosed with Stage IV NSCLC in November. I'm a little further in the game than you, but not a whole lot. It all still feels very scary. I'm so glad that the folks here have had such good advice. I agree--GO GET ANOTHER OPINION and think about another Doctor. This isn't a death sentence. There is HOPE for your Mom and mine! Stick around here and you'll find so many stories that will help you to know that. You've already heard some of them! --Val Quote Link to comment Share on other sites More sharing options...
Jana_W Posted February 18, 2005 Share Posted February 18, 2005 Hi Patti Sorry to read about your Mum but glad you found us here. I ditto what everyone else has said about getting another opinion. I find it strange from what you said that the only treatment they were offerring is Navelbine. I did wonder if there has been any confusion at to exactly what your Mum's situation is (with regard to the spread of the cancer). My Mum was diagnosed in July 2003 and the first doctor she saw was pretty uninspiring about her likelihood of a positive outcome and just suggested she come back when she exhibits symptoms and they could provide palliative chemotherapy. However, Mum wanted to fight the disease so she has undergone both conventional and alternative treatments. She handled chemotherapy pretty well, and just recently had whole brain radiation for some new brain mets., which she handled brilliantly. For instance, they told her she would definitely lose all of her hair. Well, it's all still there so it just goes to show you that what happens on average doesn't mean it will happen to your Mum! There is definitely hope out there, so hold on to it. Please let us know how things go Jana xxx Quote Link to comment Share on other sites More sharing options...
Jana_W Posted February 18, 2005 Share Posted February 18, 2005 Hi Patti Sorry to read about your Mum but glad you found us here. I ditto what everyone else has said about getting another opinion. I find it strange from what you said that the only treatment they were offerring is Navelbine. I did wonder if there has been any confusion at to exactly what your Mum's situation is (with regard to the spread of the cancer). My Mum was diagnosed in July 2003 and the first doctor she saw was pretty uninspiring about her likelihood of a positive outcome and just suggested she come back when she exhibits symptoms and they could provide palliative chemotherapy. However, Mum wanted to fight the disease so she has undergone both conventional and alternative treatments. She handled chemotherapy pretty well, and just recently had whole brain radiation for some new brain mets., which she handled brilliantly. For instance, they told her she would definitely lose all of her hair. Well, it's all still there so it just goes to show you that what happens on average doesn't mean it will happen to your Mum! There is definitely hope out there, so hold on to it. Please let us know how things go Jana xxx Quote Link to comment Share on other sites More sharing options...
Ry Posted February 18, 2005 Share Posted February 18, 2005 She should start the treatment. She was given 3-6 months...my husband was given 4. That was almost 3 years ago. Many here have hade Navelbine and done well with it. Chemo isn't what it used to be. Good luck, keep asking questions and convince her to start treatment. Quote Link to comment Share on other sites More sharing options...
Guest sunflower Posted February 18, 2005 Share Posted February 18, 2005 I am overwhelmed by the caring support of this forum. My Mom read your replies to my post and she is now asking questions. She didn't even know there was more than one type of lung cancer. She has a call in to the nurse right now to find out the type of LC she has. I believe knowledge is power and we are now feeling a little more in control with your help. Does any one have any ideas on how to find another oncologist for a second opinion? She lives in Central Florida (on the west coast). Thanks again for lifting our spirits. Patti P.S. Sorry I posted the same post twice. Quote Link to comment Share on other sites More sharing options...
CharlieD Posted February 19, 2005 Share Posted February 19, 2005 Hi Patti - So glad you have begun the education process for lung cancer. I just did a quick bit of research in an effort to help you get started. From where you described your mothers location in Fl, it would appear that the nearest Cancer Center is the H. Leee Moffitt Cancer Center in Tampa. Toll free # 888-663-3499 or E-mail address: www.moffittcancercenter.org. If you contact them, either way, I think you will be amazed at how helpful and informative they can be. That is precisely how I got started and I knew as little as you do at the time. Take care and God Bless. CharlieD Quote Link to comment Share on other sites More sharing options...
sharyn Posted February 19, 2005 Share Posted February 19, 2005 Patty, So glad you found us here.... Dad was diagnosed in 2001 and lived 4 years after diagnosis with Stage IV NSCLC. His quality of life was fantastic until the last two months or so... Please don't let Mom give up... she is young and strong!!!! Quote Link to comment Share on other sites More sharing options...
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