ALK+ Six Months

Today marks six months since the day I recieved my diagnosis. As I write this and reflect on the time since April 17, it is incredible to realize how we got here. We have grown closer to so many people, rediscovered old friendships, met and been impressed by so many inspiring people with this disease, and learned so much about myself and the incredibly strong woman I married. Without the support from everyone, it truly would not have been possible. Because of it, life has continued and too many things have happened to recount them all, but I’ll do my best since my story is too good not to tell.

It was a surreal moment and more difficult than I expected when it was time to say goodbye to the dogs and start the drive over to MD Anderson without knowing what to expect on so many levels. We left with complete uncertainty. We were told to pack for anywhere from two to five nights and at that point I was still very much in the dark about what exactly my disease meant. The trepidation of what was to come brought tears to my eyes but driving for five hours to Houston gave me ample time to get over it and before we knew it, we were at our hotel.

MD Anderson is a massive facility spread out across several buildings on several city blocks. Across the campus there is a maze of long connecting sky bridges and elevators that will bring you to the wrong place if you aren’t paying attention. With the help of a smooth new patient process we found a parking spot and the right elevator in the right building on the very first try. In the first elevator ride on the way up to the thoracic oncology area for my very first appointment, a woman with no eye brows and a scarf covering her head asked what type of cancer I had. Meredith responded and the woman’s response was a very somber “Oh, bless your heart.” She must have already known what I was about to learn.

By the time I met with Dr. Vincent Lam at MD Anderson I had told the story of my symptoms, surgery, and subsequent hospital stay more times than I cared. Not that I could forget any of it but, just in case, I even carried around a symptom timeline for reference that spanned a years’ worth of history and took up two pages printed. I pulled that out during our first visit together so I wouldn’t miss anything, and our initial discussion covered the symptoms, scans, picture of my tumor, new medical history, and all the other fun stuff and our visit progressed much like the other doctor visits. And after he was brought up to speed, just like everyone else, he agreed with that nothing made sense… Unlike everyone else’s befuddlement, there was an ellipsis to his. …unless I had a mutated gene that allowed this type of cancer to grow and spread. He went on about the various types of known mutations, but he put his money on one in particular. A mutation that occurred in less than 5% of all lung cancers and one that you could get without smoking a day in your life. The Anaplastic Lymphoma Kinase (ALK) mutation. If he was right, and if the portion of my tumor sent to Phoenix, AZ tested positive for this mutation, it would be a game changer.

In that same discussion about “regular” lung cancer versus gene mutated lung cancer we also talked a little bit about something that I had not entertained until that day. A question that was at the top of everyone else’s mind, but I had decided that I didn’t want to know because Google already told me that I wasn’t curable. Dr. Lam asked if I wanted to know “what’s the prognosis?” My response was what I thought hard about and that as long as it wasn’t two weeks, I didn’t really want to know. I can see now that wasn’t a very realistic mindset to approach things and he and Meredith didn’t let me go on unaware. What he said was what Meredith read without telling me and what I think the woman in the elevator must have known. That statistically speaking less than 1% of the people that have what I have are still alive after 5 years. The truth of the matter is that they don’t really know anymore. But if you haven’t already searched for it, Google will tell you those unbelievable statistics of everyone who has ever died from lung cancer. Those daunting stats are based on averages of people who have been smoking their entire lives, are not 32 years old, and who don’t have any treatment answers except traditional chemotherapy. I’m no mathologist but for an example, I know in order for the average survival to equal 1 year, someone has to survive 0 days while someone else survives 730 days. Had I not gone to the hospital when I did, I would have been a 0-day survivor. What Dr. Lam said to sum up a conversation that made the blood leave my extremities was that there have been more advances in treating lung cancer in the last 3 years than over the last 15 combined and since medicine is changing every day, we don’t really know what a real expectancy is anymore. The goal, though, was simple and optimistic: keep me alive long enough to find a cure. In order to do that, we needed to get to work. And when I say get to work, I mean wait for my tumor tissue molecular testing results and get a PET scan to see how much this cancer would light up and where.

There was an audible scoff from Dr. Lam when I mentioned that I had not had a PET scan due to insurance restrictions. It was followed by a confident “That won’t be a problem. I’ll get you in there tomorrow.” And that was it for the first MD Anderson visit. Dr. Lam gave us a real sense of confidence and it set the tone for everything going forward.

After MD Anderson, my second oncologist appointment was in Baton Rouge where I finally saw the results from the PET scan as well as the molecular test. As you well know, I like to see my scans. A PET scan is a very expensive very detailed image of the body from ankles to neck which highlights cancer cells in bright colors by injecting radiated glucose which is highly absorbed by the cancer cells. And although I didn't get to actually see it, the PET scan showed the cancer in my upper left and lower right lung, the lining of the heart and in some lymph nodes in my chest. Basically, everywhere we knew about and nowhere that we didn’t.

The tissue from the primary tumor that was removed was positive for an ALK mutation and a high PD-L1 expression. We’re not worried about the PD-L1 which would have been great on its own but because the ALK+ mutation was there we had the positive news that we were looking for and some difficult treatment decisions to make. There are hundreds of known mutations that occur in cancer which act as a metaphorical lock. If you can unlock the mutation, you can fight it. Lung Cancer that has an ALK+ mutatuion is one of very few locks for which there is a key. Several keys in fact. Some of those keys are older and less safe than others so I was presented with two keys from which to choose.

Both treatment options were very good and showed a high rate of success, for the sake of time, I will spare the details of it all since one option, a brand new key still unapproved by the FDA at the time, was eventually taken off the table after the clinical trial sponsor discovered that the primary tumor was already removed. After talking a lot more with Dr. Lam by email and by phone following the ALK+ result, we were introduced by him to a small, incredible world of other people who have exactly what I have tohelp in making the decision. It turns out there are two others like me in Louisiana and quite a few more across the world making what was once a very isolating situation was now something that I shared with a community of survivors.

So with the stories of so many others and the confidence of Dr. Lam, I officially began my treatment on May 27, 2019, Memorial Day. My treatment is easy. It is an oral chemotherapy drug called Alectinib that retails for about $15,000 for a 30 day supply and I take twice a day every single day along with twice daily blood thinner injections. That is the plan I will follow in perpetuity.

I have only been to MD Anderson four times at this point, all within the first 3 months, and we are already old pros. We have found the most efficient transportation to get us to and from Houston, we found the most convenient hotel only after finding and immediately checking out of the worst hotels and are actively working our way through a long list of the best restaurants. In those four visits, I have had one brain MRI, two PET scans, and a more than a dozen blood draws. One of which they managed to lose.

The second PET scan came almost three months after the first and two months after starting on Alectinib. I was actually able to see the second one and that scan image was much different than the first. The PET scan did not show the cancer in my upper left or lower right lung, or in the lining of the heart and nowhere in the lymph nodes in my chest. Basically, gone from everywhere we knew about and nowhere else that we didn’t. That result is referred to as no evidence of disease (NED). Pretty much the best possible outcome.

There have been very few instances throughout this journey where we received news that wasn’t hard to hear and, even when it hasn't been explicitly bad, I have been very hesitant to proclaim things as good news. But hearing this from the doctor was without a doubt great news. Still, as great as it is, NED does not mean that I’m cancer free, only that whatever cancer cells remain are microscopic or dormant and waiting to become educated. Because, the funny thing about how this chemotherapy treats the cancer is that it works incredibly well, until it doesn’t. My form of cancer is unfortunately very resilient, and it will inevitably find a way to show its ugly head again. When that may be, we have no idea. In some cases, it takes months and years in others. When it does, there will be more options and then hopefully more options after that until I reach Dr. Lam’s goal of outliving a cure. For now, we live life to the fullest extent possible between scans, and we are even going to Europe in February for our one-year wedding anniversary.

Stay tuned for more adventure as my next scans are just around the corner.