Today was my 6 week follow-up appointment with the neurosurgeon for my initial spine surgery. I’ve been waiting for this appointment for a long time to get out of this back brace (i.e. turtle shell) I’ve been in for the past month and a half. There’s only so much Netflix to catch-up on and sitting at home playing video games doesn’t quite have the same appeal as it did in college. The worst part of all of this was that I wasn’t allowed to lift more than 5 lbs since the surgery, meaning my 13 lb 12 oz, 5 month old daughter, Avery, was off limits. Being a new father, the thing you want to do most is hold your baby.
After my appointment I’m happy to report that I’ve been cleared! No more turtle shell and no more weight limits; I just need to ease back into everything. It’s an awesome feeling to be liberated from the back brace and it’s one step closer to going back to my normal life. As soon as I got home, I got to pick up Avery and it was the best feeling. Hopefully the good news keeps coming!
Since I found out I was positive for the ALK mutation, I have done some reading on the available treatments and medications and had formulated my on thoughts on treatment. I read about a new drug called alectinib that has shown great promise for patients with ALK mutations. Although the drug had only recently been approved for primary treatment in November 2017, it has been used as a secondary treatment option for years and outperformed the other targeted drug for ALK by over two-fold.
Now that all the test results have come in, we took a trip to Charlottesville to visit a thoracic oncologist at the UVA Cancer Center. Anyone who knows me and Varisara know that we are Hokie proud so we were entering enemy territory by going to UVA, but this doctor came highly recommended by the general oncologist I’ve been seeing at St. Mary’s. After speaking with him for a few minutes, I knew that he was going to be a great doctor for me. He seemed passionate about his field and excited with what was on the horizon. After about an hour of discussion about various treatments we finally decided on alectinib as the treatment to begin with. I was ecstatic that I would be able to take a few pills a day as opposed to getting IV chemotherapy.
We decided on a treatment plan in which I would stay at St. Mary’s for maintenance visits so I would only have to drive up to Charlottesville every few months for check-ins. He ordered the prescription for alectinib and sent me to get a CT scan before leaving Charlottesville to make sure they have a good baseline to monitor progress. I have a follow-up appointment in mid-March for my first check-in to see how my body reacts to the medication. *Fingers crossed*
I finished my last session of radiation today and overall the experience wasn’t too bad. The fatigue that started in week 1 persisted, but it was minimal. I thought I would get away nearly scot free in terms of side effects, but toward the end of last week I began experiencing heartburn; imagine a sunburn to your esophagus. Fortunately (or unfortunately?), that has been the worst side effect. I guess it could have been worse.
I’ve been doing a lot of research about lung cancer since my initial diagnosis. It’s a field in medicine that has grown rapidly in the past decade. Treatments that exist today did not exist a few years ago. Immunotherapy is a relatively new treatment option in the world of cancer that stimulates your immune system to fight the cancer by targeting certain proteins (PD-1 and PD-L1). In the past couple of years, they have seen great promise in using immunotherapy to treat cancer in patients who have high concentrations of these proteins. The only downside is that the medications are administered intravenously and the medications are still very new so they have yet to be proven.
Another new treatment modality is called targeted therapy. What’s exciting about this type of treatment is that they target cancer cells with minimal side effects and medication is generally administered orally, unlike chemotherapy and immunotherapy. Unfortunately, not everyone is eligible for these “miracle drugs”. The tumor has to express certain molecules in order for the medications to work and only a small portion (<30%) of patients who have lung cancer have these molecules on their tumor.
For the past month we’ve been anxiously awaiting the results of the molecular profiling to determine if I have any of the mutations. I found out on Friday that the tumor I have expresses increased amounts (~70%) of PD-L1 so I could potentially be a candidate for immunotherapy. This could be good, but is still administered via IV. Today, I finally received the rest of the results and I found out I tested positive for one of the mutations treatable by targeted therapy. My tumor was ALK positive!
We’re meeting with oncologists over the next week to find the best facilities for treatment and determine the optimal treatment plan. Wish me luck!
I started radiation on my spine the day after New Years Day to hopefully remove any residual disease in and around the spine. Radiation treatment only takes about 30 minutes each visit and 90% of the time is spent on positioning my body to make sure the radiation is targeted to the appropriate areas. It’s amazing what medicine has to offer now and how localized they can keep the radiation. So far, the most noticeable side effect has been sleepiness, although Varisara would say that I was always tired before anyway.
We also got confirmation on Wednesday evening that it is definitively adenocarcinoma of the lung that had spread to the spine (i.e. stage IV lung cancer), as expected. We’re still waiting on results of the molecular profiling of the tumor to determine the best treatment options. Fingers crossed that I have one of the receptors that has an oral therapy available for treatment so I can avoid chemotherapy.