CancerCompass message board discussion started by Theresap on 11/6/2005 http://www.cancercompass.com/message-board/message/all,3410,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have a sister in law that was diagnosed with stage 4 nsclc in late August. I'm confused about what her prognosis is. I take her to the radiation treatments five days a week and to chemo once a week. The chemo the doctors have her on is too weak to make her sick or loose her hair. They are not planning any surgery. From what I gather they are not treating her to prolong her life but rather just keep her comfortable. What confuses me is that she has no symptoms and that she appears to be completely healthy. She sleeps a lot because the ratiation makes her tired but they started giving her fluids through an IV because of dehydration. She feels so much better since they did this. The doctors have classified her as "terminal" but how can this be when she appears to be so healthy? I'm really confused after reading all of the other comments about this disease. If anyone has any comments about a similar case and the outcome I would really appreciate the info. Theresa Theresap Sun, 06 Nov 2005 00:00:00 GMT Hi Theresa... I was diagnosed in August as well...I had my top right lobe removed and then the doctor told me had they known I was a stage 4 they would never have operated...that was Sept 14...I still have not had any treatment to date...I feel fine except for some shortness of breath..probably due to the lobe removal..they tell me I'm terminal too...I won't listen to them though..I'm 46 a non smoker have 4 kids and have decided to begin living...I'm going to do everything I've ever wanted to do...and have some fun....I feel for your sister-in-law and you...I know what she's going through...a little harder for me to understand how you are feeling but I have to tell you that care and concern go a long way with us lung cancer patients..we so appreciate it. I'm seeing the drs today (they had a big meeting on Friday) they wanted to talk about whether or not they will offer me treatment yet...this just sucks...so in the meantime I'm doing anything I can...practising visualization, naturopath,..anyone know a witch doctor? I'll try ANYTHING at this point. I went to my doctor for over a year complaining that something wasn't right (I was really tired and every now and again would have some shortness of breath so thought I was developing asthma...didn't have a cough but had colds (runny nose etc) ...he kept telling me i was okay...so when they told me I was terminal my response was..."well you guys couldn't even diagnose me so how do you expect to do that now?"...I swear to God that every yearly check up should involve a regular CT scan...this would have saved my life...whats the use of going to a yearly check up if the doc tells you that you're fine when you're not....anyways Theresa...I am the same as your sister in law except I had surgery and no treatment...I'm feeling just fine....even started my Christmas shopping and told my parents I'm driving them to Myrtle Beach for a weeks holiday (my mom can't fly) we live in Canada...so we'll do that next week. Good luck to you and your sister in law...I hope she feels well for the next 30 years! I know I'm going to! Attitude is everything! andrea Andrea1 Mon, 07 Nov 2005 00:00:00 GMT Thanks, Andrea, for replying. We went to her "treatments" today (today was chemo and radiation day). You and her are so similar for moment I wondered if she was the one replying. She is 46 and the mother of two. She is doing well. Like you, her attitude is the best. Everyday she wakes up and thanks God for another day. I told her today about this site and I'm hoping tomorrow to show her how to get on it. I really think it would be good for her to talk to others with a similar illness. I worry that she's never gotten angry; she's just so accepting of the diagnosis. The problem for me is that I can't think of her as being ill because she doesn't show any signs of being sick. She's never had a cough, a cold, pheumonia, or any of the other symptoms that I've read about. Her annual check ups always come back clean and her blood tests are still showing "NORMAL". (normal for whom, I wonder?) She is really starting to get burned from the radiation but other than the tiredness, she has no other complaints. As long as they can keep giving her fluids to ward off the dehydration she does great. I was wanting to ask today what drugs they were giving her but I don't want to appear nosy. She said if she ever has any questions, she asks her doctor, and she trusts him to tell her the truth, so I just try to be supportive and to pass along any information that I find out about on my own. (I'm a born sceptic so I'm always looking for other opinions and options.) I hope if they decide on a course of treatment for you, they do something similar. I worry sometimes that they aren't doing enough to try to prolong her life, but she is comfortable and very optimistic that when she's done with treatment she'll live for many years to come. I can only pray that that is the case. You are the only other person her age that I've heard about with this. Everyone else in the oncology center who are going through treatments are many years older. I hope that you will continue to fight and remain optimistic. I just refuse to believe that you both won't have many more years with your children. If you want Andrea, please let me kinow what your doctors decide what they want to do. I'm not going through it so I can't begin to claim to understand, but I will continue to pray for her and for you as well. Theresa Theresap Mon, 07 Nov 2005 00:00:00 GMT AndreaWhat you saidhave decided to begin living...I'm going to do everything I've ever wanted to do...and have some funis so true. Isn't it horrible that we have to wait to get a terminal disease to decide to do this.In response to a yearly CT scan, no insurance company would go for that but a blood test for tumor markers could be done easily and inexpensively. If those were elevated, then a CT scan would be warranted.Bravo to you for driving to Myrtle Beach (a place I would love to go). Have a blast and, if you are a drinker, have one for me!dotdot Dotdot Mon, 07 Nov 2005 00:00:00 GMT I would ask your sister in law to discuss her prognosis with her physician, but at stage 4 the prognosis is poor. Stage 4 means she has a tumor which has spread to her lymph nodes and she has distant mets. Surgery is not an option in stage 4. Radiation and chemo would be used. It is possible to have no symptoms, but thay will most likely come. Survival is hard to say but most likely a year or two. Make sure she asks about clinical trials. Sometimes they can offer advantages that regular treatment will not. Oncrx Wed, 09 Nov 2005 00:00:00 GMT I am sorry to hear about your sister-in-law. My husband was diagnosed Jan. 2004. He falls into the "older" group. We have a 19 year old daughter. I avoid statistics and negativity. Each person is an individual and no one can predict outcomes. I have read volumes and have taken to focusing on what we can do rather what we can't. We even had to tell my husband's personal physician to talk to the oncologist. Your sister-in-law is young and attitude and spirituality all play important roles. No symptoms is a good thing not bad. My husband goes for acupuncture once a week and has done so far over a year. The chinese doctor he sees for this works with traditional medicine. He also has an immune booster which was researched at a cancer center in Tampa. He also takes supplements and avoids all sugar. This from a man who loved desserts particularly ice cream. I dont think traditional alone works but you have to let all doctors know what you intend to take. His all concur and have no objections. There have been a few things they told him to avoid because it could interfere with the chemo. Good luck!! Diana21 Wed, 09 Nov 2005 00:00:00 GMT I am a 57 year old male and was diagnosed with Stage IV NSCLC about 2 years ago. I was also told that this is a terminal disease and that my life expectancy was about eight months. I received surgery to remove the upper lobe of my left lung, followed by Chemotherapy. After the Chemo, a PET/CT scan did not find any sign of cancer, but 6 months later, it returned. I subsequently received another 6 rounds of Chemo and again the scan did not detect any cancer. I think the statistics are only that, statistics. I am still very active. I am a ski instructor and I still love sailing and SCUBA. When I first received the diagnosis I refused to believe that it was happening to me. Now, I just appreciate every day. My attitude toward life has improved greatly. The best thing to remember is that there ARE survivors and that every day is a gift. Harley Thu, 10 Nov 2005 00:00:00 GMT Thanks for the info. I know that she has been talking to her doctors and she appears to be completely confident in them. I don't ask too many questions. I figure if she wants me to know, she'll tell me. The cancer center that she visits is the best in our state and the doctors come highly recommended. That said, I know that she and I have talked about clinical trials but I don't think she has talked to her doctor about it. There are several notices of trials on the bulletin board in the waiting room but I don't think she has seen them. She has two weeks of radiation and 2-3 chemo sessions left --- then what? I don't think anyone knows what comes next? T Theresap Thu, 10 Nov 2005 00:00:00 GMT Thanks for writing, Diana, and please, I didn't mean anything offensive when I talked about everyone else being "older", it's just that in the oncology waiting room, every person I speak to that has lung cancer is 60 and upward. I was surprised that someone in her 40's could get it. She also has a daughter, she is 18 and will be valedictorian of her graduating class this year. One of several goals to aim for. I'm glad to hear that your husband is doing well. I don't know if my sister in law would consider acupuncture or not. She doesn't disagree with alternative medical treatments but she also isn't really pro-active in seeking them out. She seems to be completely confident in her doctors, which is not a bad thing. I've tried to get her into an all natural nutrition center but she's not really intersted. You said your husband gave up sugar? Is there a reason for doing that that is relative to his cancer or was just to improve his health? The reason I'm asking is because my sister in law seems to be losing her sense of taste but she really likes sweet things now and since she needs the extra calories I was wondering if maybe there was a medical reason she should not be eating them. She has a lot of people bringing meals over to her and her family and a lot of those meals include a desert of some kind. I'll pass along your thoughts to her. Thank you! T Theresap Thu, 10 Nov 2005 00:00:00 GMT Just a quick note about sugar. Cancer feeds on sugar so it is said that eating sugar when you have cancer is like pouring gasoline on a fire. My mom also has a sweet tooth so she has not totally given up sugar but has cut way back. She is a 16 month survivor of stage IV NSCLC at this time and doing very well. Janmarie Mon, 14 Nov 2005 00:00:00 GMT Teresa: Janmarie responded to the question of cancer and sugar. We had heard the same thing from a number of sources regarding the idea of sugar fueling cancer. That is how and why he started avoiding sugar. It puts you in a catch-22 if they need to gain weight. I make my husband whey protein shakes with whole organic milk. I did not take offense to the "age" reference. I have read that there is an increase in younger people developing lung cancer. There was a case of a 22 year old. You are right that when you hear of it, it is usually someone over 60. My husband was very reluctant to do acupuncture especially when he realized "needles" were involved. All I can tell you is what has worked for him. It has been shown to decrease the side effects from chemotherapy. I think people have misconceptions about alternative medicines. I search out sites that emphasize alternative approaches being used with traditional and with the doctors approval. It is funny because my husband went to see his private physician who spotted an herbal patch on his back. His immediate response was "that has to go". He somehow felt this triggered my husband's heart attack. After explaining he had been getting this patch for a number of months he was not so convinced this triggered it. Once we got the PET scan results back, after the heart attack, he said whatever you are doing including the chinese medicine, keep doing it because it must be helping. My husband also has faith in his doctors. You or your sister-in-law should ask how they feel about supplements/chinese medicine/acupuncture. It seems more and more doctors are acknowledging alternative approaches. Hope this helps and if you need any information, please do not hesitate to ask. Diana21 Wed, 16 Nov 2005 00:00:00 GMT We have been dealing with the sugar quandry as well because I too read that cancer feeds on sugar and yet sweet foods are all that is appealing sometimes. My husband, I should say, is 50 years old and has stage 4 metastatic NSCLC. I try to make as many sweet snacks as I can with Splenda and add Benecal to add calories and nutrients. Benecal is expensive, but if you ask your oncologist about it, they should have samples to get you started. We also met with a nutritionist last week who told us that increasing protein was critical - 68 to 86 grams a day! The reason being that we were trying just about anything to keep the weight on, with the result that my husband was stable on weight but was losing muscle mass. We've also switched to organic whole milk - 8 grams of protein per glass! He also sees an acupuncturist although I thought he'd be the last person to try alternative or complementary medicine. And it seems to help. A word about clinical trials as well. He is in a clinical trial and although there is a much greater imposition on our time what with all the extra tests and trips to the clinic, he has an extraordinary amount of attention focused just on him. During his last infusion visit, I counted no fewer than 17 medical professionals or study coordinators that met with him and checked in on various aspects of his condition. And for stage 4 lung, it seems that the prognosis is so negative that if a person wants to try chemo, a trial is worth considering. Lindaf1 Tue, 22 Nov 2005 00:00:00 GMT Thanks for the information. She finished her first round of radiation and chemo and today went in for another round of MRI, CT, PET,and exrays. I imagine she'll let me know tomorrow what the news is. I don't think she'll consider any of the options you mentioned. We've talked about it but she's just content to let the doctors make the calls and hope for the best. She's still smoking. I don't think she'll quit. It's frustrating to read about all of you folks doing everything you can to help yourselves and her basically doing nothing. I don't understand it. I think the cancer may have moved into her bones. She's been complaining about hurting all over - like body aches when you have the flu. Her oncologist told her not to stop taking her pain meds only I (we) thought it was until the radiation burns healed. I think he suspected the cancer had advanced but kept quiet until the tests today. She told me today that she started taking them because they gave her the energy to do things rather than sleep all day. Funny, huh? I would have thought they would have made her tired. We talked about trials but she said there is nothing close by where she can go. Thanks again Theresap Mon, 12 Dec 2005 00:00:00 GMT My Mom is fighting this diagnosis with chemo through a clinical trial at John's Hopkins. Her doctor is extremely attentive to any nuance or change in her daily activity or energy or pain levels. He has been a great comfort to her - her "knight in shining armour". He just lost a patient with the same diagnosis and this man lived 18 years before he passed away. So, while rare, it is possible to live an extended period of time with this diagnosis. Today, we have so many options, it is unacceptable to not offer the most aggressive, most timely treatment available, and to adjust it when necessary. If you have a doctor or medical system that won't try something, go somewhere else and don't wait for a "change" in their attitude. It may all come down to money, so clinical trials are certainly important to participate in. My Uncle, also had this diagnosis and lived, with an open mind and willingness to try any treatment, 13 years. Try to see beyond the discomfort, lack of energy, pain or depression. Try to visualize living a wonderful life day by day. Colette once wrote, "I wish I known I'd had a wonderful life." Fight for it, demand help and accept that miracles happen. Cynthiaa Wed, 28 Dec 2005 00:00:00 GMT Theresa, I was diagnosed with stage 3b lung cancer in July 2005. Went through chemo with Tarceva. no side effects. Still on Tarceva and no cancer. I suggest you read Fighting Cancer you can read it or get a free copy at this web site. http://www.blochcancer.org/fighting/fightcan.html You have to believe you can be cured. Ernie Ernie 2 Fri, 27 Jan 2006 00:00:00 GMT I just wanted to thank all of you who have been so kind as to write to me with your stories and advice. It's been a rough couple few months since the first of the year. The chemo hasn't been working. My sister-in-law has basically shut herself off from all but those in her household - I think she may have even shut them out as well. She's been almost completely bed ridden since early March. The doctors haven't been able to get her pain managed - she's either sick or too weak to get out of bed. She basically quit eating about a month ago. She tried the Boost high protein drinks but they made her vomit. She has been drinking the Carnation Instant Breakfast drinks and has been able to keep those in but she only drinks maybe 12-16 oz. a day. My broher-in-law has been speaking with Hospice about care already. Last night he had to send her by ambulance to the cancer center. She has fluid in and around her lungs. I guess they are going to do radiation today to try to get rid of the fluid. Has anyone ever heard of this? Anyway, I'm going to go up and try to see her. She doesn't want company from anyone so I doubt if I'm able to get in but I'll try anyway. Her daughter's HS graduation is on Memorial Day weekend. She was really hoping to make it. I'd like to ask you all to keep praying that she does, if you would. Good luck to all of you - Don't ever give up. Theresa Theresap Fri, 28 Apr 2006 00:00:00 GMT  On 4/28/2006 Theresap wrote:I just wanted to thank all of you who have been so kind as to write to me with your stories and advice. It's been a rough couple few months since the first of the year. The chemo hasn't been working. My sister-in-law has basically shut herself off from all but those in her household - I think she may have even shut them out as well. She's been almost completely bed ridden since early March. The doctors haven't been able to get her pain managed - she's either sick or too weak to get out of bed. She basically quit eating about a month ago. She tried the Boost high protein drinks but they made her vomit. She has been drinking the Carnation Instant Breakfast drinks and has been able to keep those in but she only drinks maybe 12-16 oz. a day. My broher-in-law has been speaking with Hospice about care already. Last night he had to send her by ambulance to the cancer center. She has fluid in and around her lungs. I guess they are going to do radiation today to try to get rid of the fluid. Has anyone ever heard of this? Anyway, I'm going to go up and try to see her. She doesn't want company from anyone so I doubt if I'm able to get in but I'll try anyway. Her daughter's HS graduation is on Memorial Day weekend. She was really hoping to make it. I'd like to ask you all to keep praying that she does, if you would. Good luck to all of you - Don't ever give up. TheresaHello-I just found out a wonderful friend has been diagnosed with Stage 4 Thyroid cancer.  I want to do everything I can to support he and his wonderful family.  I started reading all the posts on this site- I have to tell all of you how absolutely astounded I am to read about your outlooks and thoughts on living.  I wanted to just say thank you to everyone who wrote on this message board.  I was also very curious to know about Theresa's Sister-in-law....it has been over a year since the last post and I wanted to know if she was able to see her daughter graduate?Thank you for sharing your stories- they give me hope that my dear friend will be able to battle his way back, too.  Dani3000 Fri, 04 May 2007 00:00:00 GMT Theresa,I am a firm believer in not listening to the time line posted for NSCLC. These time lines are from a long time ago. There is a site with more survivors with stage 4 then you can imagine and to not treat your sister-in-law aggressively is a shame. A second opinion is needed and now. There are many people living with stage 4 NSCLC. If you want to see for yourself go to this web site and see how many just on this web site. Please please tell your sister in-law to get a second opinion. My prayers are with all of you.http://lungcancer.clinicahealth.com/topics.pl God BlessMichele  NSCLCSurvivor Sat, 02 Feb 2008 00:00:00 GMT