Nenette Posted October 26, 2004 Share Posted October 26, 2004 Hello, This is my first time posting to this site and although this is a much dreaded site I can't help but be hopeful because of all the support and information that appears to be flowing back and forth. Recently, my family found out my mom has advanced non small cell adenocarcinoma w/ a mets to a lymph node and possibly the liver. This week she will be completing her PET, liver ultra sound, and MRI tests to see EVERYTHING that is going on in her body. We were shocked about this because she has had a persistant cough and chest pain for 1+ year now and went to her GP about it. He said it was only her blood pressure medication that was causing her to cough and denied her request for a chest x-ray and instead told her to take tylenol. 6 months later she complained about a pain in her breast and he palpitated it and offered her more Tylenol. When she finally started to cough up blood yet 6 months later that is when he finally agreed to a chest x-ray and that is when they found the masses in her left lung w/ mets to a lymph node and 2 suspicious lesions in her liver. Next week we will find out if it is Stage III or IV-the oncologist said that if the lesions on the liver are cancer then it is most likely Stage IV and that she would be considered "uncurable." -Is this true??? The oncologist also said that at Stage III they could do chemo/radiation combo to shrink the tumor and have her then be eligible for surgery (and be cured), but if it's stage IV they could only do chemo to extend her life as long as possible but she would still live w/ the cancer inside of her. Since we discovered the masses I've been doing everything I can to research as much as possible about advanced NSC lung cancer. Does anybody know of any successful treatments for Stage IV (I am prepared for it to be Stage IV) that they can share w/ me? We now have her eating tons of organic fruits/veggies, drinking 4 glasses of home made fruit juices daily (each juice has at least 3 carrots, 1 apple, and either kale or brocolli), pau d'arco tea, purified water, no red meats/refined foods, and lots and lots of vitamins (ester C, magnesium - I heard mag. combats depression-, Epican Forte, Juice Plus, Enzymatic Therapy Cell (boosts killer cells) Forte Max 3, Maitake Mushrooms, Immune Builder, calcium/zinc)- does anybody know if this is too much for her liver to handle? Or should we perhaps put her on IV therapy instead? We also have her practicing visualization techniques (my brother and I getting married for instance!) and will have her listen to all the Bernie Siegel (got that recommendation from this site) audiotapes. I have also requested RFA information from Dr. Sewell at UMMC (I have a feeling he is too busy to see us, but have obtained a list of other doctors in the country that perform RFA treatments if anybody would like a list) and will be scheduling an evaluation for my mom after all the tests are done next week. I apologize for the long email, but my mom is so beautiful and has a lot to fight for! She is only 58 years old, a non-smoker, is in excellent health and has 2 children who will do whatever it takes to kick this disease and see us get married and have her grandchildren. I hope we can all learn from each other and I will update the board with with all the new information I learn from my research. Take care. All the best, Nenette Quote Link to comment Share on other sites More sharing options...
Ry Posted October 26, 2004 Share Posted October 26, 2004 Welcome Nenette, I am so sorry to hear about your mom. It sounds like you are all doing everything you can. Once the tests are completed you will know what you are dealing with and the doctor will outline a treatment plan. I am glad you are getting the Bernie Siegel tapes. When my husband was first diagnosed listening to his books on tape was the only thing that helped. They will help give you hope and will teach your mom the visualization techniques that will help in her treatment. I wish your mom good scans, let us know... Rochelle Quote Link to comment Share on other sites More sharing options...
stand4hope Posted October 26, 2004 Share Posted October 26, 2004 Dear Nenette, Welcome to this site that will soon be not "dreaded" but, hopefully, very much appreciated. I know you meant the "dreaded disease", but our site, to me, is sent by God and really helps us a lot. I think the doctor is probably accurate that there is no known cure (at least not yet) for Stage IV NSCLC, however, let me assure you that there is most definitely survival with the disease. How long is, of course, different with each individual. It sounds like you have done a substantial amount of research and you are definitely on the right track to find out all available treatments. By the way, my husband has VERY advanced NSCLC and is doing quite well. Here's a quote of mine from a different thread: When my husband's NSCLC was found, it was quite advanced, including 8 brain mets. Currently, he has it in his brain, bones, liver, pericardium, and, of course, his lung. The good part is that he is doing great, and I mean he is really doing well. We've had a rough year, but since mid-summer, after recovering from chemo and radiation, and after starting Iressa, he has rebounded and is doing very well. He works every day, took a 3-day motorcyle trip, racking up 1400 miles, takes care of our yard (about an acre), prunes trees, waxes his truck, and just keeps on keeping on. It is very scary to read all the statistics and the prognosis you will find on the web, and now that you have read them, I would suggest that you take that info and destroy it. You must always have hope. You must always project that hope to your mom and your family. The fears will come back and come back and come back. That's why this website is here. Let it out here - not in front of your family. They are going to need constant encouragement. We've all been where you are and can do a lot of incredible encouraging to re-instill that hope. Just remember, a cure could hit the world next month, next week or even tomorrow. The treatments these days are amazingly wonderful compared to 20 years ago, and lung cancer patients are living longer as a result. Now, hold your head up, shoulders back, take a very deep breath and smile. You can do this! God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
Nushka Posted October 26, 2004 Share Posted October 26, 2004 I just want to second what Peggy said. Welcome to this wonderful, supportive family. Use this board when you are down or scared and put on a happy face to your family. I can't think of anything else you can do as far as taking care of your mother. You just have to wait to find out the answers. I do know that there are many people on here that have stage IV and are doing well. Many are around long after their projected life span. Never give up. Nina Quote Link to comment Share on other sites More sharing options...
Don Wood Posted October 26, 2004 Share Posted October 26, 2004 welcome, Nenette. Much info and support here. Keep us posted. Don Quote Link to comment Share on other sites More sharing options...
Jana_W Posted October 26, 2004 Share Posted October 26, 2004 Hi Nenette So sorry to read about your Mum. My Mum was diagnosed with Stage IV NSCLC with mets to bone and lymph node July last year. She is well, symptom-free, 15 months post-diagnosis. They also call Mum "incurable" but well, we don't believe that. How does anyone know that anyway? It sounds like you have your Mum on a fantastic array of therapies. You might like to have a look at the Alternative and Complementary Therapies Forum as there is alot of information there too. I am sorry you had to find us, but glad you did. Please keep us posted on how your Mum is doing and how she finds the various treatments. I wish you both all the best. Jana xxxx Quote Link to comment Share on other sites More sharing options...
mayos Posted October 26, 2004 Share Posted October 26, 2004 Welcome Nenette!! I'm impressed by the amount of research you've handled in such a short time. Your mom is lucky to have an advocate like yourself at her side. Of course we know the results of your mother's scans can go in many directions. But please know that cancer is still treatable...no matter what the stage. You've come to a place in cyberland filled with people ready and willing to help you....in every way. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted October 26, 2004 Share Posted October 26, 2004 Welcome. I can just agree with everything else that has been said and also say that we are sorry that you need to be here. Curtis Quote Link to comment Share on other sites More sharing options...
TeeTaa Posted October 26, 2004 Share Posted October 26, 2004 Welcome . . . sounds like you've got a good "team" fighting the beast (but I'm not including her GP! ) I too want your Mom to live to see her grandkids, so let's make it happen! Praying for us all, TeeTaa Quote Link to comment Share on other sites More sharing options...
Donna G Posted October 26, 2004 Share Posted October 26, 2004 Welcome Nenette. Sorry to hear your Mom has joined our fight against lung cancer. As you have heard it is a difficult journey, she is young in her fight. Now I think you are doing all the right things, also remember, someone even in Stage IV survives, why not your Mom. Also remember, as our friend here in Mn always says, " It is another great day to be alive". Enjoy. Donna G Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted October 26, 2004 Share Posted October 26, 2004 Nenette,Welcome to our support family.You will find lots of knowing and caring people here.You'll also find lots of survivors (of all stages & types). Quote Link to comment Share on other sites More sharing options...
sophiesdaughter Posted October 26, 2004 Share Posted October 26, 2004 Welcome, this is a wonderful site and you will get a lot of support and information here. I think it's great that your Mum is taking the supplements you mentioned and on the organic diet, my Mum did the same for a few months (she still is on the organic diet ), she also took the vitamin C IVs but was told by the doctor to stop them when she started chemo, and she took Chinese herbs (my sister is studying to be an accupuncturist and was able to help her with that). I believe all that helped keep the cancer more or less stable and strengthened her immune system which helped her recover quickly from the chemo. As far as prognosis.... I believe the statistics out there are outdated. There are some new drugs (Iressa as an example, and Tarceva currently in review by FDA) which are used for advanced stage cancer and to which for Iressa approx 10% of patients (30% of non-smokers) respond i.e. have => 50% shrinkage (some very dramatically), and proportion stay stable for several months to several years, these drugs have mild side effects compared to chemo. And as you see on this site that many of the members have outlived their prognosis. My Mum was told in June that they don't know if she will be around on Christmas, but now less than 2 months away from Christmas, she is in great shape, very active and energetic, has no symptoms, her tumor has shrank more than 30% with Iressa, and she is planning a trip to Switzerland for a couple of months to visit and take care of her 96 year old mother. It's great that you are so proactive with your Mum... I remember when my Mum was first diagnosed, I spent most of my days on the internet... I thinks there are a lot of options now and there are new drugs (such as vaccines) in the works, and who knows...maybe in the next few years there will be a cure for stage IV. Quote Link to comment Share on other sites More sharing options...
Hebbie Posted October 26, 2004 Share Posted October 26, 2004 I would like to extend my welcome as well. It sounds as though your mom has a fantastic support system around her and you are really doing your homework! We now have her eating tons of organic fruits/veggies, drinking 4 glasses of home made fruit juices daily (each juice has at least 3 carrots, 1 apple, and either kale or brocolli), pau d'arco tea, purified water, no red meats/refined foods, and lots and lots of vitamins (ester C, magnesium - I heard mag. combats depression-, Epican Forte, Juice Plus, Enzymatic Therapy Cell (boosts killer cells) Forte Max 3, Maitake Mushrooms, Immune Builder, calcium/zinc)- does anybody know if this is too much for her liver to handle? Or should we perhaps put her on IV therapy instead? We also have her practicing visualization techniques (my brother and I getting married for instance!) and will have her listen to all the Bernie Siegel (got that recommendation from this site) audiotapes I applaud your efforts with the above mentioned complimentary therapies you have your mom on. I too believe that organic foods and cutting out refined foods can do nothing but boost your immune system and give your body the energy it needs to fight this beast. Welcome again, and I hope you will find much comfort here, you are surrounded by friends! Heather Quote Link to comment Share on other sites More sharing options...
J.C. Posted October 26, 2004 Share Posted October 26, 2004 Welcome Nenette, Sorry about your mother, but with you fighting by her side, with good doctors and already getting a better diet for her, you are in the right way. Waiting for the results is long and the worry should never show on your face while you are with your mother. Wishing for good news. J.C. Quote Link to comment Share on other sites More sharing options...
Guest denafern Posted October 28, 2004 Share Posted October 28, 2004 Nenette, you sound like me when my sister was diagnosed with stage 4 colon cancer, I was a researching fool. (Her's had spread to her liver also) Check out all-flora for flor-essence. Also beta 1,3d glucan this targets the cells so our immune system can kill them. shark liver oil and chloryfresh will keep her counts up. Contact Dr Irv Rosenberg at the apothocary.com. He is a holistic healer. He works mainly with cancer patients and has a great reputation. The creator of IP-6 can be reached at the University of Maryland. Dr Shamsuddiam. Also at the University of New Mexico is a Dr Patt. He just went there from Uof Md. He was my sister's Dr and we were sad to see him go. He is GREAT. Just type his name in and let google do the rest. If you can get her there, he will give you hope. Many people that have been given the "death sentence" are still here today. So find her a Dr that gives you hope and treats it as aggressively as possible. This is a good website for you all on this forum http://www.blochcancer.org/ Good luck and may God Bless. Quote Link to comment Share on other sites More sharing options...
Kaffie Posted October 28, 2004 Share Posted October 28, 2004 Welcome Nanette, As was said you'll find every stage and type of lung cancer on this forum and the support to go with it. You'll be surprised at how often you come back reading through the posts, it's a great place. Kathy Quote Link to comment Share on other sites More sharing options...
David P Posted October 29, 2004 Share Posted October 29, 2004 Hi Nenette. Welcome, and pleased to meet you. Sorry to hear your mother is sick, and that she had such a bonehead for a GP, which ended up in you arriving here at this dreadful website. You know, I have a Rastafarian friend with a full set of dreadlocks -- he has a "dreadful" head of hair. Cancer is dreadful; the consequences of living with cancer are dreadful; the effects of chemo and radiation are dreadful;and the fact that the survival rate for lung cancer is so d.a.m.n small after all these years is dreadful! But this website Nenette, and the people who manage it, as well as those living with cancer and their caregivers, are SUPERCALAFRAGALISTICEXPIALADOCIOUS !!! And that's all I have to say about that. Now about your attitude Nenette -- it's wonderful! It sounds as if you are going to make certain your mother beats this, and with what you already know about the proper regiment of foods and treatments to help your mother, you are gong to be a very welcome addition to our little site. Glad you found us. (And sorry for all that dreadful stuff) Take care, and keep us posted. David P. Quote Link to comment Share on other sites More sharing options...
richinsdakota Posted October 30, 2004 Share Posted October 30, 2004 Yep; welcome...and I 2nd all the above...look forward to learning, supporting together. Rich B. Quote Link to comment Share on other sites More sharing options...
stephnewyork34 Posted October 30, 2004 Share Posted October 30, 2004 Welcome Nanette, well I am sorry to hear about your Mom. It is really scary, especially when you first find out and here about staging etc. Seriously don't go into all the books stores and read all the stats on lung cancer, it will freak you out. (I did that). I say, it isn't the best situation, but I believe there is hope. Look at Lance Amstrong? (It's not about the Bed- his book) really many many people in advanced stages beat this. I am not trying to give you false hope, but hope. It is powerful. At least it isn't in the bones, and if they operate, she may live a long life. Try not to focus on the staging, that is just what doctors must use, but rather the solution to get it out. Make any sense? I wish I could say more, but I can't. It is hard, and this site is amazing, and you will be glad you found us, because the disease is evil and dreaded, but this site is great. In my lowest of times, I come here and feel like I have a family. Take care, and remember we are here. Steph Quote Link to comment Share on other sites More sharing options...
Nenette Posted November 5, 2004 Author Share Posted November 5, 2004 Hello everyone, It has been some time since I last posted because my family and I have been waiting for all the results. First, let me say THANK YOU to everyone who responded to me. I cannot even begin to tell you how comforting it is to know that so many people from around the world are sharing their stories w/ this horrible disease when it's advanced... and more so people are fighting (and winning!) w/ strong hearts. Now after all the wait we celebrated 1 victory when we found out that the cancer hasn't mets to the liver... THANK GOD. So we can continue to have her on supplements and vitamins w/o worrying that her liver can't handle it. Unfortunately today we received the prelim PET report and it showed that there has been mets to the bones (spine in the lower back and also the neck area) which makes her a stage IV confirmed. She's starting today on chemo (Carboplatin/Taxol) and depending on how that goes the oncologist is considering doing radiation on her back if it starts to bother her (it's never bother her before...) . I haven't told my family yet and am so frightened for my mother.. we just found out about the bone together 1/2 hour before her 1st chemo and she's still at the hospital right now for another 2 hours. I feel like we are living in a horrible nightmare and can't wake up... don't worry, although I am crying as I'm writing this my mom only sees me smiling and encouraging her. My family adores her... I'm 29 years old and my brother is 25 so the thought of my brother losing his mom so young sickens my Dad and I so we haven't told him the full extent of what's going on.. I'm not sure if we should because he's recently graduated and just started a new job. I just keep telling Ma to focus on getting past this and look forward to the Spring/Summer time when we will hopefully have some good news to report. So that's that for now... today is her 1st day of chemo treatment and the 1st among several steps we're taking. Stage 4 NSCLC successful treatments or stories are MUCH appreciated... I will also continue to post any promising treatments I find (there's a Dr. in Germany who's treating cancer w/ heavy therapy and Enzymes... Dr. M. Schedler.. thing is, I heard that he can't treat bone mets, but I have a call/email out to his office anyway to inquire...) thank you again so much! All the best, Nenette Quote Link to comment Share on other sites More sharing options...
Ry Posted November 5, 2004 Share Posted November 5, 2004 Nenette, Please tell your brother. When my father was dying the doctor did not tell us how bad it was. I had no idea he would not recover until the middle of the night when I was called to the hospital. I never got to say anything to him, it was too late. Maybe there are things he would like to tell her, please give him the chance to decide. I wish you and your mom all the very best. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted November 22, 2004 Share Posted November 22, 2004 Hi Nenette, I just wanted to check back with you. On Nov. 5, you sent me a PM with a lot of questions and I answered that same day. I notice you haven't picked up the PMs and I was wondering if everything is ok. When you get time, please let us know how your mom is doing. Love, Peggy Quote Link to comment Share on other sites More sharing options...
Heather M. Posted November 22, 2004 Share Posted November 22, 2004 Hi Nenette- I missed your first post because we've been moving for the past week and I haven't had any extra time to log on. I am so sorry for what you are going through with your mom. My mother was diagnosed Sept. 21, 2004 with extensive SCLC with 3 brain mets. I am 30 years old and this news was life shattering. My mother is my best friend in the whole world. We do everything together (including relocating 3 hours away from our home town.) I seriously don't know how I made it through the first hours after hearing the words "Baby girl, it's cancer." And to make matters so much worse, finding out that she had small cell lung cancer. The prognosis is not very bright. But I have realized that no one can put a timeline on my mother's life. Only God knows when he will call her home! I love this web site because you get so much positive feedback from wonderful people and suddenly you don't feel so alone. What I've learned so far is that every day I have with my mommy is a blessing (the doctors didn't think she would live through a 45 minute helicopter transport on Sept. 12, 2004). She is doing wonderful today. She has done two cycles of chemo and 10 doses of brain radiation. She is a fighter and has a great attitude "I don't have time for this!" She says there are many things she still has to teach my kids and that she will win this battle. Stay positive! (90 percent of the time) Try not to focus on the statistics and horror stories. I have learned to cherish every second! I'm here if you need a shoulder. Anytime. Quote Link to comment Share on other sites More sharing options...
Andrea Posted November 23, 2004 Share Posted November 23, 2004 Nenette, Hi. I am so sorry that you have to find us My mom was the same age as your mom when diagnosed and just so you know there are a lot of us "kids" around your age on this website helping cheer our mom and dads on. I know how scary this is for you and your family. I hope that you will read a lot of the stories here and see the hope and see how wonderful some people are doing! If you ever want to whine, vent, cry, yell, scream, rant, etc, feel free to do it here! You can also PM me or any of the neurotic "kids" on the website to talk about those issues. Quote Link to comment Share on other sites More sharing options...
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