EGFR Mutation

kaitek said:

Hi guys,

Thank you to all who responded and gave your insights. With each of your anecdotes, I am encouraged. Sometimes I still get scared as when she has her coughing fits or she loses weight. I'm trying not to get too obsessed with her daily ups and downs with her weight.

Ernrol, I read your story and you are an inspiration. I also took note of the extra things you did to enhance or supplement your medical treatment. I must admit your regiment is overwhelming, but it gives support that dietary supplements or diet management is beneficial. As of now, I've refined my mother's diet to include at least a raw garlic clove (chopped and allowed to set for minimum of 10 minutes) each day, ginger tea for 3 days following chemo, 200 mcg selenium, prunes (small portion that packs a punch), rotation of the cruciferous vegetables (bok choy, napa cabbage, cabbage, broccoli, cauliflower, etc.), and walnuts.

There are other modifications to her diet or routine I'd like to have my mother adopt, such as spending some time out in the sun for vitamin D, drinking 8 glasses of water, exercising more, drinking green tea, but for various reasons she has been resistant or reluctant. Mostly, she cites that she is too fatigued and feel too weak to exercise more than the couple of times she walks around the house for her exercise, green tea makes her cough, and such.

Ernrol, you might have answered this query before, but I hope you don't mind elaborating in detail again the reason your doctor decided to be that aggressive in adding Tarceva to the arsenal of Carbo and Taxol.

reinstones1, I will check out your mother's case for helpful reference. Actually, the thoracic surgeon who performed my mother's pleurodesis told us the procedure had an 85% effective rate. The first talc treatment didn't take so while my mother was hospitalized in recovery of that surgery for the drainage, they had to inject more talc to irritate the lungs. I don't know how successful those collective talc infusions have been as my mother is still leaking fluids from her stitched incision. The surgeon gave the go-ahead to proceed with the chemo and not wait for the incision to heal (as the oncologist had planned). They agreed to start chemo as soon as possible. (My mother stayed in the hospital for a week, when she was originally expected to stay only 3 nights. The fluids took longer to dwindle enough for her discharge.) When I told the oncologist the fluids were still excreted, he said there was a chance the pleurodesis didn't work. His cited rate of effectiveness was even lower than the 85%: 45%. But they figured since pleurodesis isn't too invasive and risky, it was worth a try. I became curious though how they would treat the re-accumulation of fluids, which restricted my mom's breathing. The hospital doctor mentioned something about returning to the hospital for drainage via a catheter and I believe, might have spoke about a portable catheter.

Before my mother would have tappings (thoracentisis) from her back. Those tappings always relieved her breathing difficulty. I must warn those who go to the ER to be careful you get a doctor or specialist who knows what he/she is doing with tappings. My mother had one doctor who admitted he wasn't experienced with tappings (after he began the procedure). He had trouble with the needle; he injected the local anesthetic in the wrong spot and worst, he stuck the catheter needle in a spot that wasn't numbed by the anasthetic. It was incredibly painful for my mother as he took 3 tries to find the right spot to drain. Mind you, my mother is normally very stoic with expressing pain. The only thing he did right was to favor the manual hand pumping to drain the fluids, as opposed to the vacuum via the bottle. The manual method allows the lungs to slowly expand, while the vacuum is so fast that lungs expand too fast and coughing is a result.

Thanks reinstones1 very much for your good wishes. I really take to heart the thoughts and good words from those who are in the same boat. I'm not finding much comfort from those on the outside even when they express their concern. I guess that's the reason group therapy is so successful.

Phil, thank you for insights. I forget who I read had the EGFR test done, so your background is invaluable. My mother's oncologist didn't mention any testing, as I have learned a few others had lab testing done. One person had his/her cancer cells tested as to the effective treatment, while another had testing for the EGFR mutation. It seems to me those people had oncologists who were very methodical and purposeful in treating their patients.

You said that insurance companies aren't inclined to pay for the testing. So, how did you get around it? Did you end up absorbing the cost out of pocket?

"Untreated NSCLC 3b your chances are dim, but with treatment and the advances they make every day your chances are very good."

That is a variation of the words that I've found comfort and optimism when the dry stats from the cancer sites distressed me. I reminded myself that those stats do not keep up with the advances in treatments (thank goodness for drug companies, eh?). They would be still skewed by the vast majority of the far-reaching past cases. When I spoke to the nurse practicioner to the thoracic surgeon, she confirmed that development. So she made me feel better with her words of hope and encouragement. (Nurses are always so much more comforting, aren't they?)

You guys are great!