Gilotrif Afitanib is a joke

[AtoyotA]

The highest doseage of this drug (40mg) turned my well-respected body literally into a garbage dump. So the doctor tried me on the 30mg version which was worse in every respect than the 40mg. My skin was falling off and I looked like a leper. I was going to go completely off of all of it and the doctor talked me into trying the 20mg tablets. They're not much better. I will have another CTScan at the end of this month. We'll see what's what. The funny thing is, I never smoked. How do you get Stage 3A lung cancer when you've never smoked? The doctor told me my cancer is "incurable". That was certainly nice of him to share. He should have told me that a year ago.

[FtB_Travis]

Hi AtoyotA :

I'm sorry to hear that your treatment is not going well. Definitely talk to your doctor if the symptoms you experience from treatment become overwhelming.

You are mentioning a stigma about lung cancer that we want to educate the masses to help avoid. Unfortunately, anyone with lungs can get lung cancer, not just those who smoked in the past.

Although there are no cures for this disease, there are many treatments available, depending on what type of lung cancer you have, so there is still much hope.

If you have any worries, need someone to talk to, or have questions that you'd like answered, please do so here, or call our free support line during its open hours: 1-844-835-4325

[scifiknitter Blogger]

AtoyotA.

I'm sorry to read about your struggles with afatinib. It is a drug with a reputation for harsh side effects - rashes and diarrhea especially.

I would guess that you have adenocarcinoma with an EGFR mutation, because that is the only type of lung cancer that afatinib is used for. I wrote a pretty long description of the different EGFR variations and the drugs used for them as a reply to an earlier post - check out "Stage IV Gene mutation lung cancer - using Iressa", the information would be relevant to you. There are three possible drugs to use and if you cannot tolerate afatinib's side effects, you can discuss switching to a different medication that might be kinder to your body with your doctor.

The type of lung cancer you have is not associated with smoking. About 15% of lung cancer patients with adenocarcinoma in the US have the EGFR mutation, and about 30-40% of lung cancer patients in Asia have it.

Smoking cessation programs have been so successful at linking lung cancer with smoking, you are not alone in being surprised that sometimes lung cancer happens to non-smokers.

I also have adenocarcinoma with an EGFR mutation, and I am stage IV. 33 months after diagnosis, I am still alive, feeling quite well, and actively engaged with the world because of these wonderful medications for treating our type of lung cancer. Please don't hesitate to reach out to me with questions.

Anita

[imina in reply to scifiknitter]

Ok, I want to know more about lung cancer and the non-smoker. I had an abnormal lung ct scan then about 15 months later ct-scan was much improved and no suspicious nodules. But my pc doctor wanted to do a 3rd ct scan. However my pulmonigist says no need for another ct scan because as a non smoker your chances of non smoker lung cancer is so rare MY QUESTION IS would you get another opinion or do you believe that non smoker lung cancer is so rare as my Doctor is telling me So confused he says the risk of getting the exposure of radiation from ct scan is greater then his concern of cancer

[scifiknitter Blogger in reply to imina]

Imina,

Here is a link to an article about lung cancer in non-smokers written by a friend of mine that may be helpful: verywell.com/lung-cancer-in...

Getting a second opinion is highly recommended for people with lung issues. Also recommended: going to a major medical center. Where are you located?

Anita

[Jenniferroseolson in reply to imina]

Somewhere between 17-20 percent of lung cancer patients never smoked. As Travis said, having lungs all you need to have to get lung cancer. Lung cancer is the leading cause of cancer death (largely because it is typically found as later-stage and or metasticized already). Get a second opinion. Listen to you body and your instincts. I was diagnosed age 44 Stage 4 never smoked. Radon is the second leading cause of lung cancer. Also environmental and genetic causes. You can find info on the Free to Breathe website and EPA about testing your home for radon--we all should do this and install mitigation systems to protect our families.

[AtoyotA in reply to Jenniferroseolson]

Thank you for your insight. I appreciate​ your advice.

[AtoyotA in reply to imina]

Get it confirmed and done! As a non-smoker, I personally don't see why I have lung cancer... but I do. I don't feel like I do, but there you have it. I was always the epitome of good health. Walked 10 miles each day and never sick. I thought I was going to live to be 96 -- seriously. Well, perhaps I'll still make it. Who knows? Get yourself tested and make sure all is well.

[Esthersm in reply to scifiknitter]

I'm also diagnosed NSCLC stage 4 . , 5 yrs ago . Still on Tarceva . There is always hope ! God bless. I went through all the side effects,& deal w them a few at a time. Esther

[FtB_Peggy in reply to Esthersm]

Bless your heart, I am sorry you have had to deal with all of that though. It is very kind of you to take time to share with everyone. Thank you.

[Angie2208]

Knowing for a longer period that your cancer is incurable doesn't make it any easier. It only gives you more time to adjust to that fact that you are living,while you are dying. I've known for two years this month. And finally came to terms with it. I can even interject humor into it now,if I choose to.

[GailO]

Many of us are never smokers. Have you tested your home for radon? It is the second leading cause of lung cancer. We knew nothing about it until I was diagnosed. Turns out 70% of Iowa homes have dangerous radon concentrations that can be mitigated. Best regards.

[AtoyotA]

Thanks to all of you who responded to my ranting yesterday. I had to blow off some steam. I still can't believe this stuff. Especially not the doctor bills that keep right on pouring in.

[FtB_Peggy in reply to AtoyotA]

AtoyotA, if you would like some resources for financial help - just email me: [e-mail]. Happy to have you here - and rant all you want, you are in a safe place!

[AtoyotA in reply to FtB_Peggy]

Yes, I would love to find some resources for financial help with all. The only ones getting rich off of my predicament are the doctors. The hospital (last year) was also only interested in what their "cut" would be. After we ultimately met our insurance deductable, we no longer cared what the charges were since it no longer came out of our pocket.

[Stephanie410]

I, too, was told in no uncertain terms that my Stage IV lung cancer was incurable. Another doctor, who I ultimately chose, told me that it didn't have to be curable, that heart disease and diabetes were incurable too, but it could be MANAGED. I am a never-smoker (and there was no significant radon in my home), and was 39 when I was diagnosed. My daughters were two and four. That was nine years ago. I've been on drug therapy all that time, and even with spread to my brain, have been doing well, living normally, and staying healthy otherwise. I've come to learn that many never-smokers get lung cancer...30,000-40,000 never-smokers die every year from it. That's its own epidemic!

You can do this. You have to. Take a breath, make sure you have a doctor who gives you the expertise AND support that you need, and keep trying until you find something that works for you.

[AtoyotA]

Thank you so much for your insights. I still believe I will live to be 96. I've always been the picture of good health until this business came up. It was literally caught by accident via a chest X-ray that my orthopedic surgeon wanted it done prior to my hip replacement surgery. Even my general practioner was going "well isn't he just being fancy-schmancy". So left hip replacement on April 8 and VATS lung surgery on June 11 on the right lung. Not too much they were able to do with the right lung. Too many small speckles... The oncologist told me I was in remission as of 12/29/16. Now he says my lung cancer is "incurable". Make up your mind, already. I can't have it both ways, can I?

[scifiknitter Blogger in reply to AtoyotA]

AtoyotA,

The language/jargon of cancer takes a while to learn. First of all, doctors very rarely use the word "cure". You have to be cancer-free for at least 5 years for that word to even be considered, and even then, it makes medical people nervous. Here is some lingo you will encounter at the doctor's and on various patient support sites:

Response - in cancer research, a response means shrinkage of at least 30%. So when you see the discouraging statistics on drug efficacy, try not to be too pessimistic - that number does not include people who had shrinkage of less than 30% or people who are stable, so many more people have probably benefited than it looks like.

Progression - in cancer research, growth of the cancer by 20%. If you have had a response according to the above description, you can have progression and still have less cancer in your body than before the treatment.

Stable - No growth in the cancer in a followup CT scan.

Remission - Not used a lot in more technical/precise medical language. It generally means pretty much the same as stable.

No evidence of disease (NED) - no cancer can be seen on a CT scan.

I am curious about where you are going for treatment. If you are going to a community cancer center, you might consider getting a second opinion from a specialist at a major cancer center, especially one of the centers tagged as centers of excellence, or NCCN participating hospitals. There have been so many changes in the past few years in lung cancer care, it's hard for oncological generalists in community centers to keep up. A few top doctors offer teleconference remote second opinions - pricey, but potentially very valuable.

Anita

[AtoyotA in reply to scifiknitter]

The problem for me is the "pricey". We are barely staying afloat as it is. I learn not to get excited and pay what I am able to each month. I'm grateful I finally found this site to connect with people who understand what I'm talking about. We tried a "Go Fund Me'' page but all we got was a scam from a Warren Buffett imposter and a few dribbles from a few people. Most people. including family, could care less.