Since my last post, I’ve started noticing more side effects from the Alectinib. I’ve been getting lab work done on my blood more frequently. My creatinine levels were elevated (~1.6 vs normal levels of 1.2), which can be indicative of impaired renal function. I tried drinking more water, but that didn’t seem to work well enough. As a result, my Alectinib dose was temporarily reduced to half of the initial dosage when I started on this treatment. This slightly concerned me as I wondered how this would impact the efficacy of the treatment on such a low dose, but I was hopeful my kidney levels would normalize.
I also started to notice compounding side effects since I began the treatment. Fatigue has started setting in earlier and earlier in the day and my sensitivity to sun has increased significantly. Like I said in one of my other posts, if these are the worst side effects I will take it. I’ll just need to get a extra afternoon dose of caffeine and be religious about applying sunscreen.
I went back to Charlottesville today for my quarterly visit with Dr. Hall this past week and it seems the minor adjustments are working. My creatinine levels seemed to be back down to normal and we’re increasing my Alectinib dosage!
In addition to checking my scans and labwork, Dr. Hall takes care to answer my (and Varisara’s) many questions. He almost always has answers for any question we throw his way, but when he doesn’t know he will always try to find out for next time I visit. At a prior visit, we had a question he needed to research further: What is the guidance around having a child on Alectinib?
Avery is just over 19 months now and I can’t believe how quickly she is growing! The older she gets, the more frequently Varisara and I are asked “When are you having another?” I never know how to respond. Typically, procreation is not recommended for patients on standard cancer treatments (such as chemotherapy or radiation), but I was hopeful the answer would be different with Alectinib since the my treatment is targeted towards the genetic mutation. Dr. Hall followed up with his colleagues on the topic and found there is not enough data available related to the impacts of this treatment on a fetus. Ultimately, the decision is ours to make, but given the potential risk, we want to wait until there is more conclusive data. For now, Avery is the miracle baby were so fortunately blessed with before any of this chaos entered our lives and I cherish every moment I get to spend with her.
Many would think it gets easier after the first few times of visiting the doctor to get your scan results, but I still get anxious every time I’m in the office waiting for Dr. Hall to come give me the results of my latest scan. Last time I went to UVA, I learned there is actually a term for this – “scanxiety”. Luckily, Dr. Hall has always been great about giving me the results first thing when he enters the room because he knows how nerve-wracking it can be. This last visit, things continue to look good! This visit was very similar to prior appointments: I got my results, had a lengthy discussion about the studies / advances in treatment and research, and had a quick physical check-up.
One of the things we talked about was lung cancer advocacy and support. Now that I’ve had over a year to get back to “normal”, I’ve been trying to figure out how to get more involved in the community and understand what is going on scientifically. He pointed me to some great resources, including ALK positive, a patient-driven support group, and LUNGevity, a lung cancer-focused non-profit organization.
Since then, I have joined the ALK positive Facebook group. All my friends, family, and colleagues have been very supportive since I was diagnosed, but it is a very different experience when you can talk to people who are going through the same thing you are and asking the same questions you have. It has been an educational experience and has opened my eyes to the many facets of lung cancer that I had not thought about previously, such as different regimens for monitoring disease progression and advances in lung cancer treatment that I may have never been aware of if I hadn’t joined the group (e.g. increase frequency of MRIs for the brain since ALK mutated lung cancer tends to metastasize there, monitoring of progression through blood tests). In my quest for advocacy and support, I made Avery a minor celebrity when my story was featured on their website (https://www.alkpositive.org/treatment-options/)
I also looked into LUNGevity and learned that they hold an annual International Lung Cancer Survivorship Conference that brings together patients with doctors and other scientific experts in the field. The conference is comprised of 3 summits that you can choose from: HOPE Summit for newly diagnosed/first time attendees, COPE Summit for caregivers, and Survivorship Summit for advocates and survivors who are interested in more advanced topics. Obviously, given my field of study, the Survivorship summit interested me the most with topics that include advanced research/clinical trials, dealing with progression, cancer and careers, and advocacy opportunities. This year, the Conference in in Washington DC (just 2 hours away) and I plan to be there!
Exactly one year ago today, I found out that I had stage IV metastatic lung cancer that had spread to my spine. A lot of things raced through my mind when I received my diagnosis including time; time left to accomplish your goals, time left to enjoy life, and time left to spend with family. Since that day, I made my mind up and changed it many times trying to decide how to make the most of my precious time. At first, I was going to be a stay at home Dad and spend all my time with Avery. I even contemplated going back to general dentistry or doing pro-bono work, but after 3 months at home I decided that I really loved and missed surgery. I have been fortunate enough to have been diagnosed in a time where modern medicine has allowed me to extend not only my length of life, but also the quality of life from the spinal fusion that stopped my excruciating back pain to the oral medications that keep my cancer in check. Given my new lease on life, I went back to residency to finish what I started and live my dream of being a surgeon.
Fast forward to today, I am 6 months away from being a chief resident and if you looked at me you would never know I had cancer. I feel great and, for the most part, I am symptom free (sometimes I feel fatigued but it’s hard to tell if it’s from being sick or a combination of residency and having a toddler). I am optimistic of what the future holds and rarely think about the fact that I have cancer. I should not have made it to December 17, 2018 but I did and I am very grateful for everyday I have. For now I’ll cross my fingers in hopes of another year of birthdays, anniversaries, vacations, holidays, and carousel rides with this little one.
These past 3 months have been full of fun; we celebrated Avery’s first birthday and took her to California to meet her great grandma. Every moment I get to watch her grow up makes me so happy.
This weekend, I celebrated by 31st birthday with friends and family. In the past, I have been pretty apathetic about my birthday, but since my diagnosis I’ve learned to appreciate every day (and year) that I have. Every 3 months, I make the trek to Charlottesville to get my quarterly CT scan. About 2 weeks before each scan, I start to get anxious about what the next scan will show. I am hopeful that the medication continues to work as it has, but I am also nervous the disease has outsmarted the medication. Alectinib is an amazing treatment, as I have had minimal side effects by just taking a few pills a day, but studies have shown that patients will inevitably develop resistance to the medication. When I went for my quarterly scan last week, I got the all clear! Each time I get the green light, my 3 months of normalcy restarts and I get to forget that I am sick for another 12 weeks. Until then, no news is good news!
After I got the “all clear” from the doctor, I’ve been going on with life and haven’t looked back. I went back to residency the very next week and am happy to announce I made it to the halfway mark on July 1st when I entered by third year. You don’t realize how much you love something until you’re forced to step away.
When I first was diagnosed, I told Varisara that I was going to be a stay-at-home dad and spend all the time I could with her and Avery. I love my daughter, but those 3 months at home gave me a new-found appreciation for stay-at-home parents. I truly appreciated all the time I was able to spend with her as she was beginning to grow into her own and develop a personality, but I also quickly realized how much I missed performing surgery. There’s no feeling better than helping people. I never doubted my decision to return to the hospital (as a surgeon, of course), but that was quickly reaffirmed when one of my patients said to me “This surgery is going to change my life. I can’t wait for people to stop making fun of me”. At that moment, I knew I made the right decision coming back.
Since that magical day in March, I’ve also been very busy crossing things off my bucket list:
We went to New York to eat at Sushi Nakazawa, a omakase restaurant made famous by the documentary ‘I Dream of Sushi’. It was an amazing experience you definitely have to try once in your life.
Varisara and I went on our first solo trip without Avery to our friends’ (Wilmo and Veronica) in Key Largo, FL. It was really nice to get away and reconnect, but we missed our little girl so much.
We moved into a new house last month. I always imagined raising my children in a family friendly neighborhood where they could run around and ride their bikes. It has been truly a joy to watch her roam and explore our new home. I can’t wait to see her grow into it.
I had my last scan in June and the disease remains at bay, which means the medicine is still working. All in all, we’re getting used to the new normal. Great news all around!
I’ve seen a lot of CT scans during residency, but it’s different when it’s a picture of yourself. Pictured above is one of the most wonderful CT scans I have ever seen in my life. The scan on the right was taken back in January before I started my treatment and the scan on the left is today, after about three months of being on alectinib, the oral targeted therapy. In the red circle is the tumor before and after. As you can see, it has all but disappeared (almost like magic)! The advances in lung cancer treatment over the past few years is truly amazing; it’s crazy to think that Alectinib was FDA approved in November of last year, which was just a month before my diagnosis.
That wasn’t the only good news that came out of today’s appointment. As I discussed in my post My Legs Got #swole, I’ve had to inject myself with Lovenox, a blood thinner, for the past 3 months to prevent blood clots. I have a new found appreciation for anyone who has to inject themselves. My abdomen was starting to run out of real estate, but now I have switched to Eliquis, a pill-based blood thinner. No more shots!
When this journey began, I told myself there was no way I was going to go back to residency. It made no sense to spend long hours away from my family to finish my training. This time on medical leave has changed my perspective. As much as I’ve loved spending the past 3 months as a stay-at-home dad watching Avery grow, the time off has made me realize how much I truly love oral and maxillofacial surgery. I’ve spent over a decade of hard work for this opportunity and nothing is going to stop me now. You can find me back at VCU medical center starting next week.
Today, I went up to Johns Hopkins University Hospital for a second opinion. My sister-in-law, Atitaya, works with Stand Up 2 Cancer, a non-profit organization that helps to raise funds for cancer research. They work with several cancer research institutions across the country and recommended we visit Johns Hopkins for their work in lung cancer. After talking to the doctor for almost an hour, I left the hospital feeling pretty good. She recommended the same primary treatment as the doctors at UVA and seemed optimistic that the Alectinib was going to work. For now, it seems like we’ll stay the course, but she is also helping to get me plugged in with doctors in Boston who are doing targeted research on ALK mutated lung cancer as well as lung cancer in young non-smokers. This will be beneficial when we need to start thinking about secondary treatment options.
I’ve been on Alectinib for a few weeks now and so far, the side effects have been pretty minimal. The most noticeable side effect has been altered taste; citrus fruits taste bitter to me. We’re also monitoring my liver enzymes because this medication has been known to cause elevated liver toxicity. This means that I have to limit my alcohol intake so my liver doesn’t have to work too hard. I guess I gotta lay off the the craft beer. So far, my blood work shows slight elevation, but the doctors say that it can be a transient side effect that could go away after a few weeks. If these are the worst side effects, I’ll take it. Overall, life is starting to get back to normal, but we’ll have a better idea of what the new normal will be after my next scan in March.
I’d like to also take a moment to express my appreciation for the overwhelming support we have received over the past few months. My residency family organized a meal train during the month of January so that Varisara and I did not have to worry about cooking and could focus on recovery and taking care of Avery. This was a huge help when Varisara started going back to work. In addition, a couple of former VCU OMFS residents, Samir Singh and George Soung, started a GoFundMe page to help with expenses that we have incurred since my diagnosis. The fundraiser met the goal in less than 2 days and is continuing to grow! This was completely unexpected and we are taken aback by the outpouring of love and support. Thank you to everyone who has contributed and reached out! I continue to be amazed and humbled by the number of people who care.
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!