Friend was just diagnosed with stage IV lung cancer. She falls in the 10% of population who have a gene mutation.
Started on gene therapy with Iressa, taking 250 mg per day.
It's been 60 days. Sid effects are diarrhea, nausea.
Has anyone had an experience taking Iressa
For gene mutation stage IV lung cancer?
Also we have been to Moffitt Cancer Center in Tampa, Florida to see top specialist.
Anyone have world leading doctors who handle using gene therapy for Stage IV lung cancer?
Ldk1,
Your friend must have an EGFR mutation in her cancer to be prescribed Iressa. EGFR is the most common mutation-driven lung cancer, it was the first one discovered, and the first one for which there was targeted therapy. Iressa was the first targeted drug. It actually came out before the role of EGFR mutation was understood. The fact that some patients responded very well to Iressa while others didn't led researchers to find out why, which led to today's improved treatments for people with lung cancer with EGFR, ALK, and ROS1 mutations.
There are 3 EGFR mutations most commonly seen: exon 19 deletion (which I have), exon 20, and exon 21 L858R. Exon 19 and exon 21 tend to respond well to treatment with targeted therapy, exon 20 tends to not respond well.
Iressa is a TKI - tyrosine kinase inhibitor. There are 2 first generation TKIs for the EGFR mutation, Iressa and Tarceva. They appear to be very similar in response rates and length of time before resistance sets in, but Iressa can have milder side effects. EGFR stands for epidermal growth factor receptor, and all of the targeted therapies have side effects that affect skin type systems. These are rashes, digestive tract effects, slow hair growth, brittle fingernails,etc. Most side effects can be handled with over the counter solutions, though I needed to use doxycycline for my rash while on Tarceva.
Gilotrif/afatinib is a second generation TKI. It is used as a first line treatment instead of Iressa or Tarceva, rarely as a second line treatment. It is the harshest of the TKIs when it comes to side effects.
Sadly, these drugs don't work forever. On the average, they usually work for a year or so, as the cancer continues to mutate and develop resistance mutations. About 60% of people develop the T790M mutation. For them, Tagrisso is available when Irresa and Tarceva fail.
That's a lot of info! You are a great friend to want to learn more to help your friend.
Anita
Thank you Anita, I read your blog, which was very interesting to me as I am on Tarceva. It is going on 1 year now, so far hopefully so good. Everything you described is me 100%, the brittle nails, digestive issues, acne (I'm on doxycycline) and I tire easily but, if thats the worst of it, I'll manage! I'm always researching new treatments, as you said, if Tarceva stops working for any reason, there will be another study in the making. I'm keeping the faith! Thanks for your words of wisdom!
Very glad to hear that I've helped, Jackie. Best hopes for as long run on Tarceva!
Thank you. Very informative.
Great job explaining that. I learned something new today.
Oh my, Anita I totally believe God has been leading me in so many ways. This website has somehow spared me off some research time on my own. You just provided here information I had been in dire need of finding. So blessed to have access to this website. My spirituality does not allow me to fear death. That has never been an issue. Being a nonsmoker, diagnosed due to a halted scheduled colonoscopy led me to go back to my primary doctor who had to reveal that he had not read a CTSCAN report where radiologist report recommended CTSCAN 6 months later after spending 4 days in hospital for tremors. CTSCAN of brain was shared with me in the hospital by neurologist showing nothing to connect to tremors. Unfortunately, that unreported 0.8 centimeters lesion in right lung led to a year & a half later to have a regular xray find a 4.6 cm. mass so the surgeon would not perform outpatient colonoscopy screening. Extremely disappointed with my primary doctor, whose speciality is pulmonary medicine I opt to run to the nearest cancer center where I was diagnosed with right lung cancer stage 3A, NSLC, tested EFGR positive. After 6 chemos, 36 radiation treatments, finding out my tumor showing thru several CtScans to be a 2 cm. tumor with no activity I continue to still battle everyday some side effects of the treatments. My biggest side effects treatments during my away from home for 6 weeks were nothing compared to being home and dealing with neuropathy on left foot, constant pain on lung scarring, inability to walk correctly, fatigue, slight shingle breakout on bad foot since low immune system beat my prior shingle immunization, 9 days in hometown hospital due to low white blood cell cell count triggering low sodium, potassium dehydration and depression due to being robbed of going back to working partime, my passion for baking, making my own soy wax candles and literally not being able to play with my grandchildren without limits since all my life I have never been overweight so I have always taken for granted my easy mobility. Having to rely on my husband of 40 years to plan & prepare all meals was so difficult. A lot of guilt from my since he has is a 7 years diagnosis of polycythemia vera. In spite of all the challenges I continue my journey one visit back to the oncologist every 3 months. On my February visit I was told that 3 more every 3 months with CTSCANs showing no activity would change my followup to once a year! I have never asked what if medically. I do know that if it were not for this blessed website I would be researching some of the information you posted in your reply! I do not visit all the time due to lack of concentration on most days. I am beyond amazed at how much I have written! Thank you so much for this opportunity. Do not get me wrong but it did take a bit over an hour to revisit the information I provided in this post! What a great moment for me! You see I have always had a passion for writong & had abandoned it when I found out my diagnosis. No matter what happens in the future I know I can learn to accept it. You see I have the luxury of having regular insurance thru my teacher retirement pension, I bought a cancer supplement insurance several years ago, my husband & I are retired, and have a very devoted supportive family I know I am still blessed. Today at the age of 62 years old I know why I prayed in 2006 that I was making the right decision to retire from teaching after having worked only 30 years. I enjoyed doing what I wanted to do before cancer found me in August 2015! I look forward to what is God's plan for the rest of my earthly journey. Blessings & prayers to everyone on this site. Do not worry I plan to never reply this lengthy but promise to keep you posted on my upcoming journey. Go & share your human love for life with others, folks!
About stages of lung cancer
Mom just diagnosed Stage IV
Adenocarcinoma lung cancer
Liver cancer and now suspected lung cancer 
