Non-Small Cell Lung Cancer (Basal)

Hello -- My mom just turned 47 and was diagnosed with non-small cell lung cancer that has spread to her lymph nodes in the chest and lower neck. She has gotten a 2nd opinion from the Mayo Clinic in Rochester, Minn. and they confirmed the diagnosis. They told her she is inoperable and is only able to control this with chemotherapy. She is a mother of three girls and is very desperate to find out more information about treatment or people with this type of cancer who have survived. I am her oldest daughter and am in Arizona trying to cope on my own. I was wondering if anyone has any advice or has gone through this similar type of advanced lung cancer. My mom is heavily considering going to the Cancer Treatment Centers of America, although Mayo Clinic told her that would be no better than doing nothing. I am hanging on to hope by a string and we desperately need help from people that have gone through this. Any advice, information, support would be helpful.
Thank you ...
Kristy Z.

Hi Kristi,
I am wondering which stage your mother's cancer is in. My 48-year-old son had stage IV non-small cell lung cancer. It had spread to his brain. He had one tumor removed from his brain and radiation on another one, which was inoperable. He also had some small 'flecks' there. He had full head radiation and then the one 'biggy' pinpoint radiation to the big tumor. His last brain MRI showed no tumor but they still say "we can not affect a cure", just keep him comfortable. He has only had one round of chemo, over two months ago, and they may start him on another kind next month. He was diagnosed the last of November and I was told that the average survival time is about 8 months, however he is doing pretty well right now (9 mos. later), driving, working some in the yard, etc. and his last chest x-ray showed no growth of his tumor. If that is still the case when he goes back they may not do more chemo yet. I have read horror stories of what radiation to the lung can do to the trachea and esophagus, but I have also read where patients said 'it wasn't so bad'. Maybe it depends on what part of the lung the tumor is in. Don't give up hope. I have read stories from patients who were given 4 to 6 months to live and were still fighting a good battle a year or more later. I will be anxious to hear if anyone replies to your letter who has survived this horrible thing, but with stage IV I am mainly praying for a miracle. I hate to see my son suffer any treatment if there is no hope, but he is willing to try anything and where there is life there is hope! There are lots of clinical trials with new chemotherapies, etc. Everyone says the more positive attitude you can have the better your chances, as well as keeping up good nutrition - very important. Keep reading the message boards about this type of lung cancer and you will get lots of good information.

P.S. to letter just sent from Peggy B. Correction in first line - should be my son HAS lung cancer, instead of had. Sorry

Hi Kristi & Peggy
My husband was also diagnosed with SCLC in Dec., of 2000. Stage 111B. 2 days after he retired. Age 62. They where also not able to remove his tumor. He went thru chemo & radiation. He was doing fine until about a week ago. We found out his tumor grew by 1cm. Now they are trying the new drug that was just approved, Iressa. We're hoping this will either shrink the tumor or stabilize it as the first round of chemo did. I talked to Cancer Treatment Centers of America yesterday to find out if my husband would benefit from them and get a 2nd opinion. They told me they would use the same treatment that he is receiving now. It will be 3 yrs. in December that he was diagnosed. The dr's. didn't think he would make it past 6 months and almost 3yrs. later he's still here. Don't give up hope. As Peggy said, keep reading this board. There is so much good information here and a lot of support. So many nice people. I wish you all the best and I'm sure we’ll all still e-mail back and forth for yrs. to come.

Hi Peggy -
They have yet to give my mom an actual "stage" but I know it is advanced NSCLC. The tumor began in her lower left lung and has spread to her lymph nodes in her chest, and to 2 lymph nodes in the lower neck area. I'm assuming by what I've read on NSCLC that she is in stage III, but am not 100% sure.
Right now, she is in the process of deciding what kind of treatment to go through. The doctors have not mentioned radiation, but have mentioned strong mixes of chemotherapy. I guess we will take this thing one day at a time.
I was wondering if you knew of any type of emtional support/coping techniques that your family has gone through. This is so new to our whole family that it has taken a big blow on everyone. I am the oldest of three kids, and it has been equally tough for everyone.
Thanks so much for the reply. If you have any suggestions or advice on what your son is going through, please let me know. I will pray for your son as well. Thanks - Kristy

hi Kristi,

My bro is 38 diagnosed in march 2003 with nsclc in his upper right lobe which measured the size of a golf ball. He had a lobecotomy on 4/24/03 and he originally was stage 2 and nowis stage 4 because the cancer has metatisized to his bones. He was on a cisplatin combo of chemo which obviously didn;t work on him. He recently completed 10 rounds of intense radiation, which weakened him as well as gave him severe diareaha (tumors are on his hips bones and tail bone).

Now his oncologist has put him on Iressa (a new drug to control the tumor growth) which is taken orally at home. Hopefully that will work on him.

God Bless

Hi again Kristi,
In regards to your questions, first let me say that my faith in God is my strongest support, and the prayers of my church family and others. We went through several weeks of "don't ask, don't tell". I was in shock at first, when the oncologist said, "you know we can't affect a cure for this". My son is at my home and I knew I needed to know what to expect, yet could not bring myself to ask, and neither did Donny. The day we were told the prognosis I was just numb and when we were waiting for elevator he said, "now mama, you know they don't have the final say!". His strength and courage, as well as lack of complaining or self-pity, have been a great source of comfort. Of course he lost his hair and was nauseated during the chemo, but his greatest problem was swelling and pain in his feet. They are much better but he was barely able to get socks on or stand for several weeks. He still has some joint pain, also. I know he is bound to have his 'down' times but manages to keep it pretty well hidden. I have just copied some pages from a site I found tonight. I've only read a little of it and I do intend to read it and follow up on the last item, particularly, which gives you a name(s) of a cancer survivor in your area who had the same diagnosis. Copy and paste the URL (at the bottom) in your search box, then click on "Suggestions for Cancer Patients" in the left column. At the very bottom there is a link where you can be matched with a volunteer in your area who is a survivor of the identical diagnosis you have. This fellow who wrote it says there are survivors for every type of cancer. This, below, is just a small portion of this message. At the very bottom there is info on finding a cancer survivor in your area, with the identical diagnosis you have, whom you can contact for info. (Just found this) There are other links to read for info. PB


R. A. BLOCH CANCER FOUNDATION, INC.
4400 Main Street - Kansas City, MO 64111 - 800-433-0464
Dear Fellow Cancer Patient:

No one likes to read a lengthy letter, but maybe this will help you have a better chance of conquering your cancer and improving the quality of your life. I'm Dick Bloch. In March, 1978 I was diagnosed with terminal lung cancer and given 3 months to live by an outstanding doctor. I am now healthy, cancer free, and devoting myself along with my wife, Annette, to helping the next person with cancer have the best chance of beating it. I'm not saying you can have the same success I did, but if you try, you have a chance.
________________________________________

Suggestions For Cancer Patients---The information in this area is focused on information for the cancer patient.
Accessing Treatment information-PDQ ---To find the latest state-of-the-art treatment as well as experimental protocols
A Letter to all newly diagnosed cancer patients---A brief summary of steps to take to have the best chance of success
Fighting Cancer---A step-by-step guide to helping yourself fight cancer
Cancer, There's Hope---An inspirational book about lung cancer and cancer in general
Positive Mental Attitude Quiz --- A simple questionnaire to determine if a patient has the proper attitude to be successfully treated.
12 essential questions a cancer patient should ask their doctor.
Self Help Exercise---An easy introduction relaxation and visual imagery.
Patient's Check List---A listing of factors to help in fighting cancer
Multidisciplinary Second Opinion Centers ---Background and listing of institutions offering second opinions
To Be Matched With A Volunteer---To get in touch with a trained volunteer who has had the same type of cancer.

Copy and paste in search box ----- http://blochcancer.org/

Doctors seem to take a minimal approach to NSCLC. My said he is not in business of torturing people and critised "OLD" approach of treating tumor and ignoring patient. The idea being do not put patient through anything unless you know it will help dramatically. We pushed for a more pro-active approach and cpmbined chemo with radiation. PUSH Them. I am 58 and was diagnosed (Stage IIIb) on St. Patricks Day. Initially Went through a combination of carboplatin and radiation with what seems to be great (and unusual) success. Primary Tumor shrunk over 50% while going through initial treatment. Now taking second round of chemo (Intended to seek out distant cells that were not identified by current scanning technology). My wife identified this second treatment on Cancer compass aand we passed a copy to the Doc. He agreed to try it. ASK for eval by radiation oncologist.

Hi Kristy, I can relate to what you wrote. My mother also has NSC lung cancer and at the present is not doing very well. She is extremely weak from the radiation and the doctor tells us that if she doesn't start to feel better she will not give her anymore of the treatments and that we should call Hospice. I am devastated. I have had my nose in books all weekend looking for natural therapies to try. I will be going to the health food store tomorrow to get some things that I pray will help. I just can't sit back and do nothing. I called the Cancer Treatment Centers of America, but with my mom being so weak I don't think she could make the trip out to Oklahoma for the treatments. I too live in Arizona, Tucson, what part are you in? Hope you are doing ok ~