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My dad has NSCLC and was told he has no more options...

JWsOldest313
Posts: 2
Joined: Aug 2003

I recently spoke with my dad who, who has non-small cell lung cancer (I don't know what stage, he says his doctor hasn't told him and he doesn't really care to know), and he's been battling this for about two years now. He's been through several rounds of chemo and radiation; the radiation has "cooked" his right lung, and now he's being told that there is pretty much no more chemo available for him, unless the cancer mutates to small-cell. Fortunately (if you can say that in this situation) while the cancer has grown and spread, it has not spread past his lung area as yet, but with no more chemo options, who knows how much longer we can say that? We really need some advice on what to do now...has anyone out there been in this situation, and if so, do you have any advice?

He's currently in Shreveport and is not happy with the cancer treatment options there; as such, he travels to Dallas as much as he can, so if anyone knows of some treatment centers that he can try that he hasn't already, we'd appreciate that.

Also, if anyone knows how to deal with appetite loss (he's losing weight way too fast for anyone's comfort) and severe pain due to nerve damage (it's so bad he's had to stop working and is considering a morphene pump), we'd appreciate that advice, as well.

Thanks :)

Yammi
Posts: 6
Joined: Apr 2004

Hi, I have a friend who was diagnosed with NSCLC a years ago. I found some information very useful for her and would like to share it with you. Take a look and let me know if that's helpful...Good luck!

Here's the link to the website that might be useful to you too
http://www.cancer.gov/cancerinfo/pdq/treatment/non-small-cell-lung/patient:

I also copied some information here for your convenience:

Certain factors affect prognosis (chance of recovery) and treatment options.
The prognosis (chance of recovery) and treatment options depend on the following:

The stage of the cancer (whether it is in the lung only or has spread to other places in the body).
The tumor size.
The type of lung cancer.
Whether there are symptoms.
The patient's general health.

The following stages are used for non-small cell lung cancer:
Occult (hidden) stage
In the occult (hidden) stage, cancer cells are found in sputum (mucus coughed up from the lungs), but no tumor can be found in the lung by imaging or bronchoscopy, or the primary tumor is too small to be assessed.

Stage 0 (carcinoma in situ)
In stage 0 (carcinoma in situ), cancer is limited to the lung and is found in a few layers of cells only. It has not grown through the top lining of the lung.

Stage I
In stage I, the cancer is in the lung only, with normal tissue around the tumor. Stage I is divided into stages IA and IB, based on the size of the tumor.

Stage II
In stage II, cancer has spread to nearby lymph nodes or to the chest wall (the ribs and muscles that make up the area of the body between the neck and the abdomen), the diaphragm (the thin muscle below the lungs and heart that separates the chest from the abdomen), the mediastinal pleura (the thin membrane that covers the outside of the lungs in the area near the heart), or the parietal pericardium (the outer layer of tissue that surrounds the heart). Stage II is divided into stage IIA and stage IIB, based on the size of the tumor and whether it has spread to the lymph nodes.

Stage III
In stage III, cancer has either:

spread to the lymph nodes in the mediastinum (the middle area between the lungs that contains the heart, major blood vessels, and other structures); or
spread to the lymph nodes on the opposite side of the chest or in the lower neck.
Stage III is divided into stage IIIA (which is sometimes treated with surgery) and stage IIIB (which is rarely treated with surgery).

Stage IV
In stage IV, cancer has spread to other parts of the body or to another lobe of the lungs.

Yammi
Posts: 6
Joined: Apr 2004

Sorry, the link should be:

http://www.cancer.gov/cancerinfo/pdq/treatment/non-small-cell-lung/patient

layne34
Posts: 17
Joined: May 2004

the clarification we got for stage 4 was that it has spread to a primary life organ (like the heart, liver or brain), something that can't be removed.

domino216
Posts: 13
Joined: Apr 2004

My husband was diagnosed just this past February with NSCLC stage IIIB. He has gone thru 7 chemo treatments (Taxol & Carb) and 23 radiation treatments. The doctor stopped his radiation treatments and sent him for a CT Chest Scan and the results showed about a 20% reduction in the tumor. He is now going to pinpoint that area and give him 10 more radiation treatments. He also has one more chemo treatment that we know of. We meet with the Chemo doctor on monday and he will probably determine wether a break is needed or more treatments. He has handled the treatments pretty well so far. He does get tired however he is still working a physical job. He has not lost his hair but has had the nausea with no taste and no appetite. His throat is sore and hard to swallow. I have found that he likes things lukewarm. Instead of Ensure I give him Boost. He likes the chocolate flavor and I put it in a glass and fill the rest up with milk or I make a milkshake with ice cream and Boost. Boost has more protein and calories. I make a stuffed pepper soup that he really likes and it seems to go down well. I think the more prominent flavored foods are better than the bland tasting. Try experimenting with spices and try to have him eat when many times and not just at meal times.

Since we are experiencing this for the first time and it is a whole other world I don't know what to expect. It is scary not knowing the survial rate. If any one has any stories of survivals rates and types of treatments they are getting I would really like to know and compare.

Good luck with your dad and my prayers are with you both.
Elaine

nodawgs's picture
nodawgs
Posts: 118
Joined: Mar 2001

Maybe this will help or at least, provide some optimism. I was diagnosed with Stage IV non-small cell lung cancer in July of 2002. The primary tumor in the upper, left lobe of the lung had metastasized to adjacent lymph nodes and the brain. A neurosurgeon removed the brain metastasis and a cardiothoracic surgeon resectioned the entire upper left lobe and all six adjacent lymph nodes (two were cancererous). I had no post-op chemo, radiation...nothing. This coming July '04 will mark my 2nd year since the original Stage IV diagnosis. My current monitoring schedule established by M.D. Anderson-Houston is scans/MRIs every three months and recently received another "clear" pathology report.

I'm 63-years old, hardly notice the reduced lung capacity in that I run or fast-walk 1.7 miles per day. My "nutritional supplements" are Hooter's hot wings chased down with a few cold beers in the company of a bunch of rowdies. I swing a leg over a hot Harley every chance I get and sit in the spa studying the buoyancy characteristics of mammary glands of voluptuous ladies will sipping a Kahlua on the rocks and smoking a fine, Macanudo cigar...mental chemo, folks.

My case is no secret nor an exception. Do a web search on "best hospitals"...then, a subsearch on "cancer." What you'll see is a performance ranking by the nation's recognized authority of the top cancer clinics. I picked the top dog: M.D. Anderson Cancer Clinic-Houston. Huh...think I'll go rock-climbing tomorrow.

Best to you,

"Perry"

amberg
Posts: 16
Joined: Jan 2003

I live in Arkansas and we have a great place, Arkansas Cancer Research Center at UAMS in Little Rock. Good place. I think it's www.acrc.org. Best wished to you and your dad.

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