Stage Iv Nsclc With Brain And Spine Mets-Want To Talk About Survival

Hi all,
I am new to this form of exchanging ideas and information so pardon my awkwardness, if you would.
My husband was diagnosed 4 weeks ago and it seems like 4 years! He is taking radiation to the whole brain and a single spot on the spine close to the cord. As well, he's taking Taxol, Carboplatin, and soon...Avastin, as soon as he's off the radiation treatments.
Does anyone have a story of survival from this stage of the cancer?
I am confused on how fast I need to fix our financial future, how long he'll be here despite his will to live and his general good health before this all started.

I am a big proponant of healthy food and feeding the immune system. No sugar, lots of fruit and vegetables. He's lost 10 lbs. in four weeks. He's determined to eat. The spine radiation has caused violent vomiting and I cringe at the loss of calories and ensuing appetite.

Any good stories out there?

Sincerely,
Al (yes, I'm a woman and have always gone by Al since high school!)

Hi Al,
I can lend you no advise but can tell you that I too am going through the same thing as you. Only it is with my mom. I feel for you as I watch my dad going through the exact same thing as yourself. My mom was diagnosed just a short while ago as well with Stage 4 NCSLC and will start radiation in her spine & brain on Monday. I keep trying to find anyone who could give me some insite but it seems as though people are reluctant to do so. So people such as ourselves are left to struggle through this unknowing to what lies ahead. I wish you and your husband only the best and that both of us will have many more months of life with our loved ones.
-Tonya

I think people are hesitant to discuss "what to expect" because it is different for everyone - the extent of the cancer, the treatment options - that no one can really say.... I have recently been diagnosed with Stage IV NSCLC and my prospects look hopeful - I'm taking Tarceva and, after my first "restaging" visit, they found my lung tumor shrank 10%. I also had a follow-up recently on the results of an X-Knife procedure to a brain met and they say it shrank from the size of a pea to a grain of rice! I also have mets to my spine (4 places) and my left 6th rib. I just keep trying to tackle one problem at a time. I think a positive attitude is the key ingredient, and those with cancer should not be focused on the statistic - we are have unique situations. Try to keep his spirits up and stay focused on any positive news!

Hi Al,
I am sending you this as a message of hope. I am a 57 year old man. I was, and I think I am still in pretty good physical shape. I was diagnosed with stage IV NSCLC in Oct. 2003. I was told that the average life span was about 8 months. Since then I have had the upper lobe of my left lung removed, one round of six sessions of chemtherapy, therapy with Tarceva, and I am currently in my second round of Chemotherapy.

The good news is that after my first round of chemo, all signs of cancer were gone. I took Tarceva for six months until there was evidence that the cancer had returned, and then started Chemo again.

I am, however, in very good health otherwise, and it has not affected my lifestyle. I am still working a full schedule. I am still SCUBA diving, and sailing. I feel very good except for the chemo days, and I have full confidence that I will end up just fine. I have been a cancer survivor for 22 months now and I expect another 10 to 15 years.

John

Dear John,
I just read your August reponse and apologize for not monitoring the site. I'm on another site that sends responses directly to my email so I didn't realize I needed to check back on this one.

I hear what you are saying, loud and clear. But you, like my husband, are the patients, not the caregivers. I believe that we look at this disease very differently due to our different perspectives.

Caregivers are not in control of anything; we feel helpless, so helpless. We are loosing our mates and can do nothing. It's the "nothing" that is so painful. As a patient, you can do things to improve yourself, or not...whatever you like. We, on the other hand, can only watch as our world changes drastically and we can do nothing about it. It's the helplessness that is so debilitating to us.

My husband is skeletal, with no muscles, no butt, no hair, a lot of mucus and no energy. He looks 80 when he was an extremely vital 65! He's on carbo/taxol/avastin and he also can't,won't, eat enough food. He throws up every day. The noise he makes is overwhelming at night. We sleep in different rooms now.

My husband knows he going to live forever despite his diagnosis. Therefore he has done nothing to plan for his, our, or mine alone, future. He acts as though this is just something to get through, and then living begins. I wish that for everyone, but it's certainly not what most get.

What can you tell me about how your spouse is dealing with your disease? I'm going crazy.

Thank so you much,
al

Dear Al,

You raised an interesting point. Yes, I am the patient and I do have a different viewpoint. I just asked my wife what her response to the cancer is. She said that she is also very scared, but she is taking one day at a time. We are fighting this disease together and that helps. She obviously accompanies me to every treatment,and takes notes and writes down everything that happens. No one knows what the future holds. I often make the joke that I will probable get into an accident on my way to chemotherapy. My wife and I have decided that we will enjoy our lives together as much as we can and be thankful for what we have. Just to make it even more difficult to take, her mother just died from Cervical cancer. The best advice I can offer is that there are survivors, and never give up hope.

Hi Al,

I just re-read your messge and I realized that I probably did not answer your question. Although, I expect to survive this cancer, I am trying to get at least some of our finances in order. It is interesting, though, because none of us knows how long we have and when something like cancer comes to us, we start thinking about how transient our lives are. Anyway, I am putting any spare money I can find into paying off our house so my wife will have one less thing to worry about. I have not discussed this with her only because it just seems like the natural thing to do. I think that if the house is paid, at least there is one less thing for her to worry about. So, my advice would be to try to get as financially secure as possible and maintain all family ties. The emotional support from your family is very important. There are also cancer support groups for caregivers which could be very helpful. I would also talk over your worries with your doctors.

John -

I have been reading this board for a while and I have never responded to any that I have read until now. My father was diagnosed with stage IV lung cancer with mets to the brain. Your email and your attitude is what I need to read. I will be sharing your comments with my father who is a very young 70 year old. Good luck to you...keep on living your life...today is the day the lord has made let us rejoice and be glad.

Erin

The small portion of your journey that I have read reminds me of my father. He is newly diagnosed with stage IV non small cell lung cancer in Feb 2006. He is VERY healthy and active otherwise. He is still working and continuing as normal of a life as possible. He says he is going to be the "one" who beats this and he has too much to live for. He is 60 y/o and he started chemo alreay. He has had 2 treatments so far and this Fri he will have his CAT scan to see what progress has been made.

I wanted to see how you are doing today and see if you can offer any reassurances.

Keep fighting the fight!

Shannon

Hi All,

I was diagnosed with Stage IV NSCLC in Oct. 2004. I started Chemo in November, which ended about 18 weeks later. My PET/CT scan at the end of the Chemo did not show any sign of cancer. I was tested every three months. After about 6 months the cancer returned, showing up in my femur, my ribs and my scapular. I started Tarceva which seemed to work well for 3 months. Then the scan said that the cancer was gaining ground. I went through radiation on my femur and again started Chemo. At the end of this Chemo, another 18 weeks, I was tested again and again the scan said "no sign of cancer". That scan was in early January, 2006. I was tested again at the end of March, 2006 and it still shows no signs of cancer.

The good news part is that my original prognosis was to live for the next 8 months, and it has been almost two years. I am still scuba diving, skiing and sailing and so far, "life goes on". I guess the moral of the story is that none of us can know what will happen. I consider myself very lucky and I truly appreciate every day that I have. There are survivors, and I hope to be one of them.