Cancer is nothing when you have hope!! This site is all about living … and living well … with late-stage cancer. I hope you will journey along with me through the ups and downs of living with lung cancer.
Mutation testing is a subject near and dear to my heart. I can’t say how many people I have met who have lung cancer but know nothing about genetic testing. As a matter of fact, not so long ago, I didn’t know much about it either. (And, to tell you the truth, I’m still far from an expert. But, I know enough to tell you that the testing is very important and it can be a life or death test.)
So, What is Mutation Testing?
Mutation testing has a bunch of different names: molecular profiling, molecular tumor testing, biomarker testing, genomic testing, testing for gene mutations, genetic testing, genetic mutation testing, and more. It can be very confusing, for sure. But, here’s what you need to know – if you have lung cancer, especially nonsmall cell lung cancer (NSCLC), you are doing yourself a big favor if you ask your oncologist to get mutation testing, by whatever name, done.
Why is mutation testing important? Our cancer is unique to us. Each tumor cell is made up of specific proteins and molecules. According to American Cancer Society, normal cells do not have mutations, cancer cells do. Genetic testing allows doctors (pathologists) to take a detailed look at tissue from your tumor to see what mutations exist in its DNA and exactly what proteins are present.
How is Mutation Testing Done? Does It Hurt?
No. Or, it doesn’t hurt if you have tissue available from your previous biopsy. The pathologist will just use some of that tissue to do further tests.
If you do not have enough tissue left from your biopsy or the tissue is old, it will be necessary to get more tissue. Depending on where the tumors are located, the procedure could be simple or a bit more involved. I had a tumor on my supraclavicle lymph node (collarbone) so it was very simple to take tissue from it for further testing.
Why is It Important to Have My Tumor Tested?
Your tumor was already tested to a certain degree. The pathologist took the tissue from your biopsy and used it to determine what kind of cancer you have. If you have nonsmall cell lung cancer (NSCLC), then the pathologist looks at the tumor a little closer to determine what subtype it is. Generally, you will learn that you have adenocarcinoma (about 40% of NSCLC cases) or squamous cell (epidermoid) carcinoma (25-30% of NSCLC cases), but you may have one of the less common types, large cell (undifferentiated) carcinoma, adenosquamous carcinoma, sarcomatoid carcinoma, etc..
Your oncologist uses the information from the pathologist to determine a treatment plan that will be the most effective against your tumor type. Recently, it has become more affordable to provide the oncologist with even more information about your tumor type so that he can hone your treatment plan further.
Depending on the characteristics the pathologist finds in your tumor, your oncologist may decide that there are targeted therapies or immunotherapies that likely will be most effective against your tumor(s). In (very) simple terms, targeted therapies attack just your tumors, instead of all of your cells like chemotherapy does. Immunotherapy works with your own immune system so that it can see and destroy the cancer cells.
According to Memorial Sloan Kettering Cancer Center, about 60% of adenocarcinoma lung cancers will have specific mutations. Many of these mutations may have targeted therapies or immunotherapies available to treat them.
Among the most common mutations for which there are targeted therapies are Epidermal Growth Factor Receptor (EGFR), Anaplastic Lymphoma Kinase (ALK), ROS1, and T790. Scientists are discovering more and more mutations every day and finding treatments that work effectively against them. Immunotherapy works best when there is a large amount of a protein called PD-L1 in your tumor.
I’ll take this time to make a brief plug: more, more, MORE money is needed for lung cancer research. We’re talking lives here!!!!
Take a look at the Don’t Guess Test Web site. Among the vital information you will find there, you will find a PDF that you can download and take when you see your doctor.
Since I began the clinical trial for Opdivo back in July 2013, my life was returned to me. While I was on chemo, there were quite a few days when I wondered if the fight against lung cancer was really worth it.
Chemo made me so violently ill that I can remember being curled up on the bed with my Sheltie Barney wondering how in the world I could endure an existence that put me in such misery, time after time. I began to think that if this is what life is going to be like, let me off of this train sooner rather than later.
With chemo, I would feel good for a day or so after treatment (thank you, steroids!), but then the nausea and vomiting and fatigue would set in. For two or three days, I could get out of bed or off of the couch only to go throw up. I couldn’t eat or drink. It took every ounce of willpower and strength to walk 10 feet into the kitchen.
I couldn’t live. I could only exist … and it wasn’t a pleasant existence.
Fortunately, those horrid days lasted for less than a week. By the second week after a chemo infusion, I was feeling much better. I could eat and drink again. I could make myself live a somewhat normal life. By week three, just in time to go back for another infusion and begin the process all over again, I felt pretty good.
For the first infusions, I was able to keep my spirits high. I could look at the bright side and focus on what I could do, rather than on what I couldn’t. But, the longer the process went on, the harder it was becoming not to get depressed during that third week. I was knowingly getting ready to submit again to a treatment that was going to totally knock the wind out of my sails. Is that insanity, I wondered? Everyone knows Stage IV lung cancer patients don’t live long, I thought, so why was I making myself so miserable for at least a third of the time I had left on this earth?
Chemo treatments went on for about six or seven months. Finally, my doctor said we would take a break from treatments. He hoped the tumors would remain stable, but they didn’t. The minute we stopped treatments, they started growing. All of the headway we had made with the chemo was lost.
That’s when my doctor asked me if I wanted to begin a new regimen of chemo or start a clinical trial. The chemo was expected to be less effective while making me sicker. Ugh. No thanks. Clinical trial, here I come!
I didn’t expect the clinical trial to do anything for me. I expected to be a test subject so that decisions could be made for future cancer fighters.
I could not have been more wrong! From the moment I started the trial, I started feeling better. And my tumors were stopped in their tracks. And, now, 2-1/2 years later, my tumors are still stable and I still feel great!
So, I thought some of those reading this blog might get a little bit of hope from reading about my week last week. I think you will agree that it does not sound like a week in the life of a typical stage IV lung cancer survivor. The good and surprising news is that many other Stage IV lung cancer thrivers DO have similar weeks! Guys, there is HOPE … and lots of it!!
Fun, Fun, and more Fun!
It has taken me awhile to get this blog written. The reason? I’ve been too busy to sit down and write it! Don’t you think that’s a good thing?
The week I sat down to write about started with a Run As One agility trial. In order to have a trial, the barn has to be readied. Linda Lelak and I both start trial weekend on Friday afternoons, helping with set-up. It requires the lugging of equipment from place to place. By the time these pictures were taken, we were nearly finished emptying the stall where everything was stored and carrying it out to the barn.
Since the dogs came to the trial on separate days, we took the opportunity for a photo shoot on Friday after we got things set up!
Saturday and Sunday – 4 days compressed into 2
Cotton got to play on Saturday; Barney on Sunday. They both had a lot of fun! Barney finally earned his last Open Touch N Go title, so he’ll start in Elite at the next trial. We’ve been chasing that title for about two years so I was really excited when we had a clean run!
Here is Barney’s Touch N Go run. He had a good day. He was oh-so-slightly too slow (he missed making time by less than half a second) in Tunnelers to earn a qualifying score, but he qualified in Touch N Go and in his Regular run.
Cotton wasn’t quite as successful! She DID succeed in having a great time, though. And, in all honesty, that’s what it is all about. Just to be fair, here’s one of her runs. You can see that she runs very happy!
But, this is not so much about agility as it is a chronicle of my week. So, let’s move on.
Saturday, November 14th, was a busy date. As I mentioned, I ran Cotton in agility during the day. For the evening, there were three possibilities for activities.
First, American Cancer Society wanted me to speak at a semi-formal fundraising event they were hosting. I frantically looked for a way to get a cocktail outfit without spending a lot of money. I run dogs in barns; I rarely attend events where fancy clothes are necessary. My friends really came through with offers for help. It was heartwarming.
About the time I figured out what I was going to wear, I got an email saying that the event had to be canceled due to lack of ticket sales. I was sad on the one hand … and breathed a sigh of relief on the other. I hated that the event was so poorly supported that it had to be canceled.
I had barely relaxed from having that event canceled when I got a note from my doctor’s office wanting to know if I could attend a Dallas Stars hockey game on Saturday night. I was excited to get the offer to participate with Chris Draft’s Team Draft Foundation, mainly because a good friend and fellow lung cancer survivor was going to be there.
Now, there is another outfit dilemma. I have no Stars jersey to wear. And, once again, I don’t want to spend $50 to $100 (or more) getting one!
Just about the time we decided we would just bite the bullet and get something, I got yet another email saying the event was canceled for Saturday night and would be rescheduled. Ahhh, Saturday night is going to be a night of relaxation after all.
Oh wait! Here comes an invitation to a good agility friend’s birthday party – chips and salsa and nachos … This event did not get canceled! It was a lot of fun to see everyone. I am the only one of that particular crowd who runs NADAC agility. The others run in AKC and/or USDAA, two venues I eschewed after my cancer diagnosis, so it is like a reunion when we get together for a meal.
I came home from the party and did a quick load of laundry (quick = about 2 hours) and crashed so that I could get up before daylight on Sunday.
While I ran four runs on Saturday with Cotton, I only ran three with Barney on Sunday. I knew that I had another obligation to meet on Sunday night and I was afraid there wasn’t time for more runs.
On Sunday night, I had to be in Dallas by 5 PM for a Free to Breathe meeting. This is a foundation that was started by Dr. Joan Schiller, currently the head of oncology at UTSW, and a lung cancer expert. Like LUNGevity, they host a 5K walk to raise money for research.
They also do other events. I had previously worked at one of their tables at a Dallas Stars game doing lung cancer awareness. I’ve tried to determine the major differences between LUNGevity and Free to Breathe. From my own perspective, they both do great work raising funds for research. LUNGevity is also focused very much on lung cancer survivors. They are all about offering HOPE to those of us fighting the disease. They do a wonderful job of it.
Sherry and I have HOPE … and lots of it!
Free to Breathe, I have decided, has a primary focus, besides raising funds for research, of increasing awareness about lung cancer. You will find them at health fairs and other events.
I’m happy to be involved with both organizations because I believe offering survivors and thrivers (a term I learned from Free to Breathe and that I absolutely love) hope and information is incredibly important. Lots of us are living still. Our prognosis is not as dark as it was. This is vitally important information for people with lung cancer. Don’t give up. Never give up.
But, I believe it is equally as important to get the word out to the masses that lung cancer attacks more people than any other cancer besides breast. It kills more than breast, prostate, and colon cancers combined. There are two reasons why I believe lung cancer is so deadly:
1. people believe it is a smokers’ only disease, which couldn’t be further from the truth and 2. it is usually without symptoms until it has advanced to stage 3 or 4.
I had a lot of fun meeting everyone at the Free to Breathe event. I hope I will have a lot of opportunities to work with them … as well as with LUNGevity.
I kept thinking that cramming four days into two over the weekend would not be a problem because I would just rest while I was at chemo. Chemo day (a misnomer, really, because I don’t get chemo, I get immunotherapy … but both require an infusion and it is just easier to call it chemo day!) is usually a long day. It begins with a blood draw. Then, I wait an hour or so while the blood is read. Then, I have a visit with my favorite oncologist in the world. He orders the immunotherapy. It takes an hour or so for the pharmacy to get the life-saving concoction put together. Then, the infusion begins. The drip only takes an hour. Still, even if everything is running like clockwork, which it doesn’t always, I am there for a minimum of 3.5 hours. Usually, it is more like four or five hours.
I love most everyone at UTSW so the time goes pretty fast. Nevertheless, it is a long day. I do not usually rest. Monday was no exception!
I actually had nothing to do on Tuesday. I usually have agility practice, but instead, we had rain. As much as I love my agility lessons, I was happy to have a day off. I did very little besides rest.
On Wednesday, I met a couple of friends for a movie and a late lunch. I never went to the movies until I met Anna. Now, I go at least once a month and often two or three times a month! It is a nice way to lose yourself in a world that doesn’t usually include cancer.
Thursday was an exciting day! I say frequently that having cancer has opened many doors for me that would have never opened otherwise. I can’t exactly be happy that I have cancer, but I can tell you that I am enjoying my life. A lot.
So, Thursday is usually an agility training day so it is always a day I enjoy. But, this Thursday, was something different. Robert and I went back to UTSW, this time to do an interview with WFAA, Channel 8 news.
It just so happened that the interview took place on the day of the Great American Smokeout. So, instead of being on the news once, I should end up being featured twice.
It is with mixed emotions that I was part of the feature above. I surely want people to know that they can and should quit smoking. But, I don’t want anyone to get the mistaken idea that only smokers get lung cancer. Because nothing is further from the truth and way too many people die because they think they are immune.
It only takes lungs to get lung cancer. That’s it.
We are anticipating that another segment will be aired on November 30, during the 4 PM news. I guess I will probably not see it live as I will be having chemo again. It would be highly unusual for me to make it home by 4, especially on a Monday after a long Thanksgiving holiday. Thank goodness for DVRs!
I had so much fun doing the interview. I love my doctor. I love the nurses and aides. It was especially fun that some of them got to be on TV, too! Sonia, the health reporter, was so nice. I felt like we were old friends! And, finally, I had an interview where my mouth didn’t get dry and I didn’t experience a moment of nervousness. Yes!!!!
RW and Kim had come in from New Mexico on Wednesday. They came over to watch the news story with us. Mom came too. Afterwards, Mom took us out to the Goldmine for dinner. It was a really fun day.
On Friday, Linda and I had agility class. We always have so much fun. Both Barney and Louie did an excellent job getting great distance and following our directions. I love to trial, but I love class even more.
After class, RW and Kim came over to help me clean house a bit before we went after Jimmy and Jonah. The kids are spending a little over a week with their dad … and were they excited!!!
Grandma … not the camera AGAIN!!
It is always great fun to have the kids, but it does turn our quiet existence a bit topsy-turvy! The boys have a lot of energy!! And, especially when they first arrive, a lot to say!
On Saturday, we had a great time. Linda, Mom, and I were signed up to work a Lung Cancer Awareness table for Free to Breathe at a Stars ice skating rink in Plano. Genentech was sponsoring a Free Skate for kids and adults as part of the awareness event. So, we all loaded up and headed to the Dr. Pepper StarCenter in Plano.
Neither the kids nor the dad had ever been ice-skating before. They did really well. By the end of the Free Skate, Jonah was skating on his own. Jimmy took off on his own from the start.
We all had a wonderful time. At the Awareness table, we got lots of interest and gave away many blue (LUNGevity) and white (Free to Breathe) bracelets. A few people took more information.
On Sunday, I totally forgot that I am no longer young and did something I haven’t done in years. I got up at 1:30 AM to get ready to go to a dog agility trial in Oklahoma with Ed and Linda and five dogs (three border collies, a Sheltie, and a Pom/Eskie). I picked Linda up at 2:15 and we headed to Ed’s. Because there wasn’t much traffic, we arrived in record time! The house was dark and quiet!
Linda and I, like teenagers, were outside with the dogs, trying to be quiet, but also having fun. She shined the flashlight into the porta-potty so I could see and then we used the flashlight to take the dogs through weave poles. This, my friends, is what they call “agility addicts.”
We were on the road to Norman, OK by 3:30. We laughed and talked, talked and laughed … and had a great time! This trial was done “beta” style, which means you run the same course twice. While we had a great time, Barney and I didn’t manage to have a qualifying score. I had a few chemo brain moments (I get to blame things on chemo brain … it could also have been called “senior moment”) during our runs that cost us. Barney, on the other hand, had some pretty runs!
This run was Regular 1. Barney had a beautiful run. If only his Mom hadn’t forgotten a jump, it would have been one of the nicest runs we’ve had. Where was my head??? On the second time through the exact same course, I managed to include the jump, but Barney thought I really wanted him to do the dogwalk instead of the tunnel at the discrimination. We argued about it for a bit…
What a fun, fun day. We arrived back to Ed’s by 5 or so.
Sum it Up
So … while this week may have been a bit more active and filled with more unusual activities than normal, I managed to do it all. And, keep in mind, chemo (immunotherapy) was part of the week. Had I still been getting chemotherapy, most of the activities described here would have had to be put on hold. But, with immunotherapy, and the way I personally react to it, I had a very, very full week.
Here’s what I want to leave you with. Getting a stage IV lung cancer diagnosis can be devastating. But, it isn’t the end of the world. There is HOPE. There is more and more hope every single day as researchers find more and better ways to treat our cancer.