EGFR Mutation

kaitek

I'm a little familiar with Tarceva as a second line cancer treatment. I've been told by my mother's oncologist that Tarcevea works well for Asian women who have never smoked. Actually, it wasn't he who mentioned it. It was the thoracic surgeon who alluded to a treatment promising for that demographic. That statement alone gave encouragement. However, after the surgery where a biopsy was also done that confirmed the cancer, he passed on further discussion of the treatment options to the oncologist. Now, I can't remember much of what the oncologist elaborated on Tarceva but that it was reserved for second line treatment. I'm getting more info here about Tarceva.

So, I'm reading of patients who's had a testing of an EGFR mutation. How did this testing arise? Did the oncologist automatically resort to the testing based on the ideal patient profile? You were never a smoker? Or did you have to ask for the test? Was the mutation detected from a blood sample or simple swabbing of your mouth for cells?

My mother is in first line treatment of 6 rounds of chemo of Carboplatin and Taxol. She's responding well as far as side effects go. Plus, she has been gaining back the weight she lost (9 lbs) while hospitalized for drainage of the fluids from her chest/lungs (she had pleurodisis). She had also lost weight (8 lbs) during the 4 weeks it took for the cancer to be diagnosed. (The pulmonologist kept missing the cancer cells when the lab results of the fluid samples from the ER thoracentisis and bronchoscopy came back "normal" and negative of any cancer). She still occasionally coughs (though less than when hospitalized) and still plagued with fatigue. Nevertheless, I'm taking her increased activity and weight as signs of good progress. So, I am hopeful this first line therapy is successful.

Should I still ask for testing for that mutation? I guess I should ask the oncologist about it, but I'm wondering how complicated of a procedure is it. Just like any other lab analysis?

Thanks for any insights you can provide.

I haven't read enough of the back threads to know everything that has been said here and who is here. Is there a health professional here who sometimes helps out with expert information?

ernrol

Tarceva is used as a first line treatment if the doctor wants to use it. The FDA has not recommended it yet for first line. Sloan Kettering is doing a clinical trial as a first line. I had Carboplatin, Taxol and Tarceva started at the same time... I have been cancer free since November 2005. I was never tested for EGFR. I am 69 year old, white male that quit smoking 30 years ago. I do not meet the criteria of an Asian woman, but it worked and that is what counts. Go to my web page and read my story, then let me know if I can give you any more info or encouragement. You can type ernrol in the search box at top of screen, and then click on any place you see ernrol on the right. This will take you to my web site.
Ernie

reinstones1

ernrol said:

Tarceva is used as a first line treatment if the doctor wants to use it. The FDA has not recommended it yet for first line. Sloan Kettering is doing a clinical trial as a first line. I had Carboplatin, Taxol and Tarceva started at the same time... I have been cancer free since November 2005. I was never tested for EGFR. I am 69 year old, white male that quit smoking 30 years ago. I do not meet the criteria of an Asian woman, but it worked and that is what counts. Go to my web page and read my story, then let me know if I can give you any more info or encouragement. You can type ernrol in the search box at top of screen, and then click on any place you see ernrol on the right. This will take you to my web site.
Ernie

Hi-- I don't really know anything about the EGFR test, but thought you might want to read my webpage, as my Mother's case sounds similar to yours (carboplatin and Taxol for 6 rounds, had pleurodesis performed, etc.).

My Mom "failed" her first round of chemo with carboplatin and Taxol, as it didn't shrink her tumors. However, she did stay stable during her entire first round of chemo, which is a blessing in itself. She didn't feel great during chemo, but managed the side effects relatively well. She did lose all her hair (which is just now growing back).

She started 2nd line chemo with Alimta in mid-June, after the fluid returned around her lung. A word of helpful advice, in case no one has told you (no one told US)-- pleurodesis is very often NOT a permanent solution-- it may only prevent fluid from re-accumulating for a few months. (Mom had her pleurodesis performed on January 11th, and it kept the fluid away until the end of May).

Alimta, in her oncologist's opinion, is a "better" drug than Tarceva. Who knows. I specifically asked her about Tarceva at my Mom's last appt., and that's what she said. I'm not saying one is better than the other, just passing along what her doctor said.

My Mom is 69 years old, and quit smoking 30 years ago, just like Ernie (Ernrol).

My best wishes to you and your Mom.

Lyndawithay

Hi. I'm PHIL Lynda's husband. Lynda has NSCLC stage 3b. The first thing the Oncologist told us about was the EGFR mutation and if you have it Traceve will work and you are right it is best in asians who never smoked. He did tell us that the test costs about $800 and that most insurance companies won't pay for it. The Oncologists don't want to get stuck with the bill. We had the test and she did not have the mutation. She was also not able to be in any trials because she had chemo for Chronic Lymphoid Leukemia 6 mo before (It is in remission and the doc isn't concerned about it since NSCLC is much worse) Lynda had 4 rounds of Taxol, Carboplatin and Avastin and is also in remission with the NSCLC for the last 2 months. Our Oncologist calls it remission when the tumor did not grow and the cancer did not spread. Her's is not curable and may come back but the treatment she had and the study showed an average (50%) responce rate of 22 months. Lynda continues with the Avastin which is a drug that cuts off the blood supply to the tumor. It has something to do with VegF which is concerned with the EGFR.

Don't worry about the EGFR mutation, like the study shows it is in asians who did not smoke your chance of having it are small if you don't fit that type. There are other treatments that work just fine. My wife has beat the monster twice - no really three times - she had lung cancer 8 years ago and they took care of it with a lobectomy. The oncogist says that the present NSCLC is not related to the first cancer in 98.

Don't worry, the monster can be beaten and there are many who have. Untreated NSCLC 3b your chances are dim, but with treatment and the advances they make every day your chances are very good. Look what they have done with childhood Leukemia, I remember when Danny Thomas first started his clinic and if someone made it to 10 years that was unheard off now the children have a good chance of beating the monster. PHIL

kaitek

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!

kaitek

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!

Just want to add more personal details about the EGFR mutation testing. My mother had surgery to treat fluids in her lungs (pleurodesis) and while at it, a biopsy was done. The thoracic surgeon did forward a sample for EGFR mutation testing without any need for us to either request or demand it. So, I'm assuming the cost will be covered under my mother's Medicare and Medigap insurances.