Tag Archives: ALK mutations in former smokers


Today’s guest post is from Cindy. This was her first Thanksgiving since Tim’s passing, and she found writing about him quite emotional but also cathartic. Interestingly, Tim also had an ALK mutation, an uncommon occurrence in someone with SCLC.

My husband, Tim, died from non-small cell lung cancer April 27, 2102 after a two and ½ year battle; he was 51 years old. In April of 2009 he had a complete physical and received a clean bill of health. In June he started feeling run down and had a nagging cough. He went to the doctor. Mind you this is about the 6th time I had seen him go to the doctor in the 25 years we had been together. They x-rayed and gave him steroids. He felt better with the steroids, but the cough and fatigue returned after the doses ended. He was also noticing that the eye sight was getting worse in one eye. He went to an eye doctor who immediately sent him to a specialist. The first diagnosis was ocular melanoma, not to be confused with skin cancer. We were terrified, but had a clear plan. After a standard PET scan to be sure it had not spread, they would radiate the cancer with a small puck behind his eye. Done. We even consulted with the radiologist and were getting ready to schedule the appointment. We received a call from the radiologist saying they saw something on the scan. Apparently it had spread. They did not think it was ocular melanoma anymore. Next step, biopsy. Of course we all know the answer to the biopsy question. Prognosis was about 16 months. As terrified as we were with the ocular melanoma diagnosis, at that point I would have given anything to go back to that point.

I will say that Tim (and I) smoked for many years. We quit when Tim turned 40 and he was diagnosed with lung cancer at 48. We have two teenage children who lived through this with us. They are caring and compassionate children and this experience has made them more so. When he was diagnosed Tim asked them to please, for him, don’t turn to drugs or alcohol to drown their sorrows. He asked them to live their life to the very fullest, if not in spite of this, because of this. We vowed to spend as much time together as a family as we could and started planning many, many wonderful vacations and events for the 4 of us. We had some real fun.

After about 8 months of the normal treatments Tim’s oncologist sent us to the University of Colorado Hospital where we met Dr Ross Camidge. There our hopes were bolstered. Turns out Tim had the ALK gene and was able to start on the crizotinib trial. What a miracle. He was feeling great, the cancer was gone. We were having a blast! The best part of that lasted about 8 months. The cancer then found its way to his brain. Whole brain radiation followed and then some progression of the cancer in his liver. The end of May 2011, right after a high school graduation cruise for our daughter, he was removed from the trial. The next 9 months were up and down. There were new trials and new trial failures. There was more radiation and then finally, nothing they could do. He held on so tight and tried as hard as he could. I know he was so very worried about his family, but when they told him there was nothing else to do, he was able to let go. His passing was quiet and beautiful with me, our kids and our dogs there to help him go.

Tim will be remembered for his great sense of humor and positive outlook on life. He always had something good to say to the doctors and staff and was always trying to make them laugh, even when they were telling him bad news. He rarely complained and tried his hardest to participate in everything up until the day he passed. Heck, he worked almost every day until about 2 weeks before he went. He was a good man and my best friend and, smoker or not, he did not deserve to have to leave us so soon.


Next up is my friend Roni, who had smoked, but quit six years prior to her diagnosis. Interestingly, Roni has an ALK mutation, just as I do. The typical profile for someone with an ALK mutation is a young, never smoker with adenocarcinoma. Profiling may be a useful tool for prediction, (time and money saving) but it is dependent upon generalities. I believe it is best to operate under the assumption that there will be exceptions to every ‘rule’, and thankfully Roni was tested for an ALK mutation even though she did not fit the profile. Please welcome Roni:

“I guess I should have known! I shouldn’t have been so surprised. I was a smoker for over 30 years, we lived in a home where radon was present, I frequently suffered from bronchitis, I worked for years in an area that was enveloped in jet fuel fumes and my mom died from lung cancer. But, who actually believes it will happen to them?

It all started with kidney stones…oh, they were bad. I went to the emergency room and after the x-ray, the technician asked me if I ever had pneumonia. He saw a spot on my lung. After 4 days in the hospital trying to pass those blasted stones, my PCP sent me for a CT scan and then to a pulmonologist. When he explained the results of the scan to my husband and me, I fell apart. I couldn’t stop crying.

I should have stopped smoking when my girls were born, or maybe when my mom died or maybe when my dad died the following year or even when my first husband died three years later. I was still young then, I could have quit then, but I was hooked!!! Finally, 15 years later, I did it…I quit smoking!

Six years after that, my oncologist gave me my diagnosis – Stage IIIB Adenocarcinoma with 18 months to 2 years to live. Devasted, I headed home and tried to put everything in order. I took each of my girls on special separate mini vacations so we could have some final quality time together. I bought a cemetery plot and picked out my stone. I made a will. And then I braced for the worst. That was in 2006!

And, here I am, 6 1/2 years later….a little older, a little chubbier and
so very happy.

Why so happy? Well, when I was diagnosed, my youngest grandchild was 6
years old. I knew he would never remember me and how much I loved him and
my other 4 grandchildren. I couldn’t imagine not watching them grow and
develop into the unique individuals I knew they were going to be. I wanted
to be around to celebrate their birthdays and graduations and weddings and
their own children. Well, I might not get to do all of that, but I am
thankful for the many additional years that I have been blessed to live and
be a part of their lives. We have made many memories in the past 6 years.
Just thinking about it makes me smile.

So, how did I get here? Oh you know, the same old road: radiation, surgery
and chemo. Lots and lots of chemo. Years and years of chemo (I think you
get the picture). But then a great thing began to happen. Pharmacies
actually started experimenting with drugs to fight lung cancer! It was
amazing. Even though lung cancer kills more people every year than any
other type of cancer, other cancer treatments seemed to take priority. And,
I was really kind of okay with that. If my husband developed prostate
cancer or one of my girls was found to have breast cancer, I would want
there to be a cure for them. But the tide started to shift a little when
they found out people who did not smoke also got lung cancer. Imagine that!
They weren’t the cause of their own cancer! So, the competition started.
How lucky for some of us. Because I have a certain ALK gene in my tumors, I
have been fortunate enough to be able to take two pills a day to shrink my
tumors and to prolong and improve the quality of my life. I have the
opportunity to get up one more morning and see the sun and thank God for the
beautiful life he has given me. I get to spend one more day with my
wonderful husband, loving daughters and my precious grandchildren.

But, I know it won’t last. When this medicine stops working, maybe there
will be another to take it’s place. Maybe there won’t. Should I sit around
and worry? No. I don’t consider myself to be either positive or negative,
just realistic and very, very thankful. It could always be worse. This
journey does not have a good outcome, but when the end is near, I will not
hesitate to take every pain pill and every treatment necessary to ease my
suffering before I reach my final home.

We are all family in this battle and I pray that each and every one of us
will have the loving support of family and friends, knowledgable doctors and
kind nurses. Blessings to all of you.