diagnosed at 39 yrs old never smoked

New to this site, and curious to discuss diagnosis, treatment and accompanied stressors to stage 4 NSCLC with mets to spine and brain.  I am a care taker to my family member and hoping to hear some positive stories of tarceva, miracles etc....  Especially painful since my sister has 4 children ages 2-10.  If anyone has a chat site or suggestions please help!

Hi Chichi,

You have found the right site to get help and info from others who are either battling lung cancer or have gone through the treatments and are in the process of being tested every few months or so. First of all let me tell you that not all lung cancers are caused by smoking. Toxic chemicals and inhalants, etc can also cause lung cancer. I understand how frightening the diagnosis can be, but new advancements in cancer treatment are being made each day. I would recommend that you research your disease and take an active part in your treatment. I can only tell you my story as for as advice goes: My lung caner was found by accident. It was diagnosed in the beginning as a stage 1a, and I immediately had surgery for the removal of my left upper lung. The surgery is very painful and recovery is still ongoing. Now, I have a CT scan every 4-6 mos to make sure the cancer is not showing up somewhere else. My surgeon told me that the chances of the cancer showing up somewhere else are 50-50. I will be closely observed for 5 yrs and if the cancer has not shown up elsewhere by then, chances are it did not reach the lymph glands. I have been blessed so far. There are numerous people on this site you have the same stage 4 as you and can offer better advice than I ever could. God bless you dear and give you strength to battle this awful disease. I will keep you in my prayers for a complete recovery.

Granny60 

I have been living with stage IV NSCLC(never smoked) for 18 months.  Also had the mets in brain and some spread to my rib cage & Liver.  Had radiation for the brain(improvment seen)  and am on my second round of chemo therapy.   I feel good.   Attitude and how you see your fight is almost as important as the drugs.  Take all the prayers people want to give to you even if your not religious - it can't hurt!  Your caretaker will be very important in your life as the tiredness is one of the worst side effects of chemo & radiation.  Tarceva did not work for me(had the wrong genes) but hopefully it will for you.   I will add you into my prayers - good luck and God Bless.

On Jun 12, 2012 11:49 PM chichi wrote:

New to this site, and curious to discuss diagnosis, treatment and accompanied stressors to stage 4 NSCLC with mets to spine and brain.  I am a care taker to my family member and hoping to hear some positive stories of tarceva, miracles etc....  Especially painful since my sister has 4 children ages 2-10.  If anyone has a chat site or suggestions please help!

I was diagnosed with 3b NSCLC. It was in my right lung and in some of my lymph nodes. Before treatment was completed it traveled to my left lung. It took me two and one half years to beat my cancer but I have been free for one and one half years now. I went to CTCA. I also have a son who is a self taught herbologist. He recommended many herbs and tinctures that helped me keep my immune system strong and my blood normal. The herbs protected my liver from the toxic effects of 39 radiations, 32 chemos and nine months of Tarceva. (tarceva did not continue to work for me) If you make less than $100000 a year there is a company that will send you the Tarceva for free! I was tired and had a bad case of "chemo" brain but I also had hundreds of people praying for me. I never once thought that I was going to die from this cancer but just needed to keep on treating til I beat it! The story goes that in the morning meeting when my team was going over my test results my Doctor got up and danced around the room after reading the scans that showed no active cancer.

This paper is somewhat dated but does contain a well researched list of suggestions for food and supplements.

http://www.denvernaturopathic.com/lungCancer.htm

Also a review with a discussion of integrative/alternative approaches. Again somewhata dated but a good place to start.

http://www.lef.org/protocols/cancer/lung_cancer_01.htm

Best Regards

On Jun 12, 2012 11:49 PM chichi wrote:

New to this site, and curious to discuss diagnosis, treatment and accompanied stressors to stage 4 NSCLC with mets to spine and brain.  I am a care taker to my family member and hoping to hear some positive stories of tarceva, miracles etc....  Especially painful since my sister has 4 children ages 2-10.  If anyone has a chat site or suggestions please help!

There is many positive story about Tarceva , but, as usual , it works for some patient and not all . Your may log in to http://www.tarceva.com/patient/taking/how_to_take.jsp for more information . Meantime, you also can log in to Cancer Grace www.cancergrace.org , this is a site with doctor to share some opinion about lung cancer . You can seach for information and posting about Tarceva and other chemo drug for lung cancer . Yes ! There is also sharing of posiive news in the forum . Anyway, if you spend some time go thro' past posting in Cancer Compass for those related to Tarceva , I believe you can get some very positive news sharing also. Please feel free to ask for assistance , will try best to assist .

A stage 4 non smoker lung cancer pt for almost5 years now. check out my caring bridge site. go to caring bridge and search russell young!! lots of miracles there. hope this helps you.

Hi chichi,.

I am 57 yrs old and was diag with stage 4 lung ca in dec. I too was a non smoker, had my upper left lobe removed, and am on tarceva daily. I get ct scans every 4 mos to check for growth.

Being on tarceva has not been easy for me. I do know that it is different for everyone. I work fulltime, so am totally exhausted everyday. I started with a terrible rash, even in my scalp, but after 3 mos that subsided. Intestinal cramping, diarrhea is a part it. Imodium is your best friend.

I didn't lose my hair, but it has become thinner, harder to work with, and a totally different texture.

Having trouble breathing is an everyday thing for me, and i attribute that you the lung surgery.

I am glad to be on the tarceva, and not have to go thru chemo. I don't know what my outcome will be, but was told we live longer with lung ca than before. I was glad to hear that!

Getting this was a total shock. No one in my family had lung ca. I find that my husband does alot of the chores since he is retired, and i am just too tired.

I am not writing this to discourage you on taking tarceva, only to help in knowing what you might expect and not to be frightened by what is happening. It helped me alot to read other people's experiences and know that what i was feeling someone else did.

I wish you the best of luck. I will keep you in my prayers. Stay on the chat line and let us know how you are doing. Leslie

 

On ??? 23, 1433 11:49 ? chichi wrote:

New to this site, and curious to discuss diagnosis, treatment and accompanied stressors to stage 4 NSCLC with mets to spine and brain.  I am a care taker to my family member and hoping to hear some positive stories of tarceva, miracles etc....  Especially painful since my sister has 4 children ages 2-10.  If anyone has a chat site or suggestions please help!

before 8 month ago my father 72 yrs old with lung CA stage 4 and spine an abdomen apearance start treatement tarceva 150 mg daily,at that time he was not good totaly.but now by care of ALLAH he is  so good living normaly and helpe him selfe and acting.