CAS1

Thank you Cas. About an hour before he passed, I had a tearful burden hit me. I prayed for him to pass easily. I feel like I'm in his arms, like when he had his seabag next to us, and we were saying goodbye again. I swear that I'm smelling the sea and a warship in the wool of his uniform. This is his last voyage, and as Sapphos said this black ship will take him to a safe harbor

What is the difference in stage IIIA and stage IIIB

Thank you for your advises. I must follow ur advises

Thank you for taking the time to respond to my question about spouses. My husband sounds a lot like yours and some others. He has no idea of anything medically I'm going through, no idea of what I should or should not eat, no idea how pancreatic cancer affects my appetite and my mood of course, and I think he prefers it this way. He goes about doing "his things" around the house yet still expects me to cook and have what is needed in the house. To make matters worse, he cannot drive b/c he lost his license two years ago, so therefore I have to drive us to the stores and I have to seek the help of friends and acquaintances to get me to and from chemo. Am I bitter? You bet. This has just added to the pressure I feel from having cancer; I didn't need to have to search for volunteers to take me to treatments. I give you credit for understanding your husband. Good luck in your journey.

Cas1- Why did you talk to me about judging people with cancer? This was on derocka's question about him being upset with his mum for smoking. I blame her for abusing derocka-but not for her having lung cancer. Before this came up, I have been feeling a kinship with lung cancer patients for several reasons. I have a skin cancer that's rare and wild. I have nurses and social workers that tell me that I could have prevented this and it is not a real cancer. Then this often migrates into the lungs-and the person is dead in 9 months. I'm in remission, but my lungs are still closely monitored.

Considering how badly I have been treated and told that I could have prevented this, I often think of how badly lung cancer patients are probably treated by people that think that they are intelligent, but know so little. Sometimes, when I'm getting my lungs checked, they ask me if I smoke. I tell them that I never smoked and they say--well you didn't cause that.

My son was an underground uranium miner. They get a lot of lung cancer. Is it the fault of a hard working person that needs a job, and is told the job is safe, and they get lung cancer-is it their fault? Sailors and shipyard workers get lots of lung cancer.

People have no right to fault a person for having any cancer-and I have not been faulting anybody for having lung cancer- I was telling derocka that I understand the problems of a cancer patient being blamed for causing the cancer.

None of my health care professionals mentioned lung rehab to me, other than getting into a walking routine when I got discharged from the hospital after surgery. Nor was I given a spirometer, in hospital or to bring home. Was also told by primary care doc that he wouldn't recommend pulmonary consult right now. Didn't think I needed it. By the way, no mutation.

Yes, most certainly met with thoracic surgeon. He did the lobectomy. Also have met with oncologist several times. My oncologist is same guy who I used through my breast cancer journey 17 years ago and have seen every year since. And who during routine breast cancer surveillance, discovered the lung tumors. What doesn't add up? What am I missing?

Why do I ask? Just wondering if long term survival actually exists.

Hi Cas, My 18 year old daughter has colon cancer, spread to lungs with many lesions. Is there surgery that can be done to many lesions? We are thinking of going to Germany or Cancer Center of America or going in for a second Opinion, she goes to Sloans but will not do surgery. Any good surgeons out there that would do surgery?

Thanks for the info Cas. I'll check it out. Glad it's helping you, keep it up.

Hey Cas... thanks for your message. I'm doing well physically, emotionally not so good. Still on chemo until the end of May. I probably won't be on here for a little while, but I wanted to let you know that I'm ok. I hope you are well, you're still in my prayers. Zoe

I have poorly differentiated high grade neuroendocrine carcinoma. It started out in two lymph nodes in my armpit. I went through, chemo, radiation and then surgery to remove what was left of tumor. Was cancer free for five months. Just found out in feb that it is back in one lymph node below my kidney. My dr sent my tumor tissue to Foundation One for genetic testing. I have five genetic mutations. Two of the mutations have the same recommended chemo treatment. I started afinitor one month ago with minimal side effects so far. If the afinitor doesnt stop the spread of this nasty cancer, i am looking at clinical trials. Does anyone know of any relevant clinical trials for this type of cancer? I feel like i am the only person in the world battling my specific kind of cancer! Noone responds to posts i post on various cancer websites.... I am 47, i have a six year old son and i am terrified! Its so hard to believe that with only one lymph node, that my situation would be so grim (in the words of my doctor).
I have the following mutations:
-PIK3cg
-pten
-tp53
-notch1

Cas1, thank you for your response. I have I had chemo and radiation which has placed me in remission. I want to stay there just like my brother 36 years in remission ( healed I say). I am just trying to find out how significant is diet to keep reoccurance at bay. I am not a smoker, drinker, nor junk food eater so I am still saying what the H E double hockey sticks do I need to do to be here for as long as I can.

I was diagnosed in Dec. Stagelv lung cancer. 1st chemo yesterday,so far I feelfine,but I'm waiting for bottom to fall out had neulastin shot today. The side effects I think are very scary. Have chemo every 3 weeks and blood work everyweek i'm on Carboplatin Avastin and alminta. I don't know how long my treatments are there is so much they throw at you your mind spins I try taking notes, but it is all tomuch I'm a fighter and I'm trying to keep a positive attitude I even laugh at myself. I'm fighting with my oxygen tank and could heave it,but then I would not so well I wonder if I will ever get rid of the tank. I'm rambling sorry. What more can I expect hair loss and all that

Hi Cas1-I just read your answer about not telling people. Well put!
What we see on TV is acting or promotion about everything-cancer seems to be over the top---Yes many people, especially children in school will shave their heads in group sympathy. but the parent must tell the school, coach, etc. As adults, we aren't any obligation to tell anybody. I have a rare-incurable one-I had to line up somebody to drive me to treatments-then after face surgery-tumors popped up. Things did not go as expected-so I am in remission. I just wanted the poor woman to know that maybe her husband doesn't feel the same about some of the friends and relatives. Somebody that could be a source of wisdom and strength to his wife, might be considered a nosey nag by the cancer patient. My father had a sister that we dearly loved, but my mother was jealous of her, and spent all of her time thinking of things that could start a fight and keep my sweet auntie out of the house. I was relieved to find out that I wasn't the only person that didn't want to talk about it.

Hi, Cas. You were given to me as a good person to talk to. I found out on Friday that I have lung cancer. Before that I thought I had chronic fatigue syndrome. I kept going back to the doctors again and again saying there is something wrong with me, please help me find it. Because I had a +PPD once, I do have x-rays of the lungs done every 3 years. Something showed up in 2008 and 2010, but they never told me or did anything. How can this be? I just had a PET scan done yesterday. I am going to see my primary care physician today. I'm sure she doesn't know the results yet. Who is supposed to tell me? Given the amount of time that has passed since the first time they didn't tell me something was wrong, I am expecting pretty bad results from the PET. What usually happens next? I think that cutting out the lung is a horrible idea. Do I have to do that? I have a friend who has chemo about once a year and is pretty miserable and out of it for a long time. Do I have to do that? I have heard about this wonderful new drug that starves the tumors. How successful is that as an approach and couldn't they do that instead of the surgery and chemo?
I am also kind of really angry that they wouldn't GET GOING right away so that I could get all this bad news stuff done a couple of months ago instead of right at Christmas. They are so slow! It seemed like a massive denial that this could be really important to GET GOING. And I didn't have the energy to argue enough.
Hope you had a nice Christmas.

Dear cas1, thank you so much for your answer to my question....I post there a doubt (see text below) if you can help me once more I would thank you a lot
My kind regards......God bless you and continue blessing all of us

Thank you very much to everybody that helped me with this matter....I am very pleased.....Cas1.....just to be sure,.....you know I am to send my tumor tissue to Foundation Medicine between today and tomorrow and they sent me the cost of $ 4,600.00 to analyze about 250 gene mutations of my tumor....so when I read your message I wondered if I am asking something wrong......where did you get the information of 1000 gene mutations for 1000 dollars? many thanks again and God continue blessing all of us

Dear Cas1...I would like to thank you for everything in 2013....you made the difference in my journey to be cured with your knowledge and helpful behavior, always available to me....I wish you a Merry Christmas among family, friends and loved ones....I was with you in the pray for cancer cure.....I just can't believe how many of us have our lived cut in the middle by this terrible disease....wish that God, Santa Teresa de Los Andes, the archangels, the angels and all saints be among yours to listen to your wishes and to concrete all of them in 2014.....count on me and I wish you a 2014 full of health, happiness and piece...God continue blessing all of us

Dear Cas1, how have you been? wishing everything is pretty much ok with you and your healthy...I am in the process to sent a sample of my tumor to Foundation Medicine to perform the Foundation One test.....and would like to make you two questions to see if you can help me:....How did you decide by Foundation Medicine to have your test done? is there a list of the best institutes to have our test performed? all the answers I am going to have in my report are related only about my tumor or are they going to analyze my good cells also.....for instance when they send the report am I going to know BRAC1 and 2 and see if I am mutated for those and so to have the probability of having breast cancer in the future or are they going to say only if my tumor is mutated for BRAC1 and 2 (as an example)......many thanks for any input you can give me in this matter but considering I am preparing my specimen to be sent and the cost to have ir from here Latin America, I would like to be sure I am doing the best in the best place......my best wished to you and many thanks again....God bless you and continue blessing all of us

CAS1 - Did they get your cancer so small with radiation and chemo that they did surgery quickly after those treatments were done? I see you're stage 3B. Are there stages after which nobody will operate?

Never mind, found it. I think. :-)

Hey, any idea how to make contact with Wyss about the Melanoma trial?

And I have a crush on you too.

Cas, you are a fount of information. Thanks for charing with us.

Cas1 Thanks ,I know we never know I am trying to learn to just take one day at a time and leave it in Gods hands..God bless you

HI case just wanted to ask you some questions on survival rates.I know you are constantly seeking new information on lung cancer. What I would like to know is what are the odds of making it the first two years of it coming back.After that what is the third year and the fourth and fifth,What would the odds be on that.Thanks your knowledge would really be appreciated.

Hi Cas, yes VERY interesting. Trying to stay strong and positive,not easy. Can't wait for Fri. to be over. I'll post when I get back home. Thanks for thinking of me. You take care too ! Zoe

Hi Cas, I finally watched the Bonnie J. webinar. It was absolutely fancinating. Thanks for recommending it . Hope you are well. Zoe

Thanks Cas...I'm trying to stay up ,getting a little easier today.I'm praying for another answer besides surgery for the other lung. I just don't want more surgery. I don't know how to "set up" a google search, I'll have to check it out. I hope you're feeling well and having a good day. Thanks for your post. Zoe

Dear Cas1, sorry that I missed your last comment you sent to me two days ago....This week I was on chemo so everything (especially my brain jejeje) move slowly......I loved your tips and to be honest had never setup a google alert before, so I accessed it and setup a couple now.....Let see how they work so I start polishing them to ensure to have what I need.....You have given me a realy gold tip that may make the difference in my treatment and life if my cancer comes back (I hope not)....I will never forget.....Thank you so much.....
You were more than right when you mentioned the elements of our fight.....I made lots of change in my life especially in the diet side which I guess is my weakeness......I can add healthy items to it but sometimes it is difficult for me to be far from a desert or some slice of meat.....anyway I am improving...I pray a lot, I try to give back, I practice gym and walk my dogs almost daily and I try to learn a new life after cancer.....What were your major changes?
I am Brazilian and my husband Argentinian, but we have been living in Chile for the last 03 years and a half....Due to my previous job, and now my husband job we have been living abroad for several years....Have already spent lots of time in USA(Ohio), Colombia, Venezuela and now Chile were I was diagnosed......Have you ever been in Brazil? which countries have you ever been here in LA? if it happens for you to come back here please let me know and I will be more than happy to be your hostess.....Wish you all the best....Thank your for the deepest of my heart