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!
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.
After about a week at home my legs started to get a bit sore. I figured it was from laying in the hospital bed for a week and sitting around all day at home. After all, I had the compression devices on my legs while I was at the hospital to help prevent blood clots from occurring. Friday, exactly a week after being discharged, I went on my first real outing to The Circuit, a local barcade in Richmond that we’d wanted to check out for a few months now. I had a great time, but standing for 3 hours playing games was probably not ideal, even with my brace on. The next day I woke up to sore legs again, but this time I noticed some swelling in my right ankle. I had seen a case of DVT (deep vein thrombosis – a.k.a. blood clot) the prior year in my rotation in the ED (Emergency Department) so I knew what to look for. There wasn’t too much swelling (you couldn’t tell if you weren’t looking at it), but just enough for me to call the neurosurgeon. He told me to go to the ED to check for DVTs. Luckily, we’d had a revolving door of visitors since we arrived home from the hospital so my brother-in-law took me to the ED while Varisara stayed home with Avery.
When we got to the hospital, I had trouble walking to the ED. I had to sit down immediately when we got inside as my leg was in pain just from the short walk. I was quickly seen and they performed the ultrasound. Low an behold, there was a DVT in my right calf, just as I had suspected. What I did not expect was that there was also a DVT in my left calf as well. When it rains it pours, huh? I knew that Lovenox, a blood thinner, was usually given for inpatient hospital stays to help decrease the chance of a blood clot forming, but since I had spine surgery I was unable to get the prophylactic shot due to the risk of an epidural hematoma.
With the lung lesion and an increased heart rate of 110 bpm, the doctors also recommended that I get a CT scan on my chest to rule out the possibility of a pulmonary embolism. I’d been getting alot of “just to be sure” scans and procedures recently so I wasn’t too surprised. Luckily, the chest scan came back clear.
To manage the DVTs in my legs I knew I’d need to be on blood thinners; probably for the rest of my life now with the cancer. The on-call oncologist came by to talk me through my options: pills that could be taken orally or Lovenox shots that would need to be administered in the abdomen. You would think that’s an easy decision, but the shots have been proven to be effective while the pills have yet to be confirmed. Additionally, the Lovenox could be reversed quickly if needed. Although I did not look forward to the idea of getting shots twice a day, I thought it wise to go with the sure thing and picked the Lovenox. The first few times, I administered the shot myself and that was not fun. Varisara started giving me the shots after the second day and she has only stuck herself once (so far).
The days following the surgery consisted of getting fit for my back brace, physical and occupational therapy, and a barrage of doctors and nurses constantly in and out of my room to check on recovery, administer medication, and start planning for next steps. Not only was I recovering from major spine surgery, but I also needed to get started with oncology.
The radiation oncologist arrived the day after the surgery to discuss the plan to take care of the lesions in my spine that the neurosurgeon wasn’t able to get out during surgery. Although the wound needed to heal from the surgery, we wanted to get started with radiation right away to prevent any further growth in the spine. We planned to start the radiation treatments 2 weeks after surgery, however, preparations would be done while I was still in the hospital for recovery.
The medical oncologist also came by to check on me. We knew the tumor was metastatic, but we still were not sure of the source. We could only assume lung because that was where the only other mass was found, but preliminary results were not expected until 2-3 days after surgery. When we finally received the results, they were very vague and actually caused more confusion than clarity. The preliminary results still were unable to confirm the cancer source, but also indicated that a possible gastric source could not be ruled out. Even though the CT scans showed no growths in the GI tract, the medical oncologist ordered a colonoscopy and endoscopy just to be sure everything was clear. I was thrilled. I expected to be discharged on Friday and hoped these new tests didn’t extend my stay in the hospital.
The scopes were scheduled for Friday morning at 11am, which I wasn’t told until 5:50pm Thursday night. I had to be NPO (i.e. nothing by mouth – no food) starting at 6pm and I had not planned accordingly. I was looking forward to warm cookies from Insomnia that evening, but those would have to be put on the back burner in exchange for a lovely clear liquid diet and a 2 gallon container of golytely that I needed to consume by the next morning to clear out my GI tract. They should call it goheavy rather than golytely. If you have not had the pleasure of trying golytely, it tastes like seawater. I finished half the container Thursday night and woke up Friday morning to complete the torture. I finished at 9:20am, proud of myself for getting through it without vomiting and ready for the procedure.
The nurse came in to tell me that my procedure was pushed back to 1:30pm because I did not finish the golytely 2 hours prior to the scheduled start time. I was never told about the 2 hour protocol and I was not happy. Hungry and ready to go home, I was frustrated that I had to wait for an extra 2.5 hours. The scopes came and went, confirming what the CT scan had previously shown; the GI tract was clear.
I was finally discharged Friday evening (see picture above), just in time to spend Christmas at home. Final results for pathology were not expected for at least another week.
The day after I was admitted to the hospital, they took MRIs on the rest of my spine to see if there was anything else we should be worried about. I hadn’t been able to lay down flat for the past month without having excruciating pain. Unfortunately for me, MRIs require you to lay down flat and not move for about a couple of hours depending on how many pictures they needed. They had administered some IV pain mediations for me, which I thought would make the experience better. I think they overdid it a little bit because I started to feel nauseous during the whole procedure. I had to request Zofran in between the scans, which helped a little, but imagine being hot, nauseous, and in pain stuck in a metal tube. After two grueling hours of being in and out of the MRI, I was finally done. The scans on the rest of the spine and brain came back clear; the first good news we’d received since entering the hospital.
I was on a cocktail of various medications of steroids to help with the swelling and opioids to manage the pain, but for the first time in over 6 weeks I was starting to feel a little better physically. With the swelling and my pain under control, the neurosurgeon and I decided to have the surgery Monday to ensure the best team was in to perform the operation. The neurosurgeon pushed his other cases scheduled for that day so that I could be the first of the day at 7:30am.
The procedure took nearly 4 hours to complete and I lost 1.2 liters of blood, but the neurosurgeon was able to remove the tumor that was compressing T11. He fused together my spine from T10 to T12 to replace the support that was previously being provided by the tumor. I was sent back up to my room for recovery while the tumor had been sent off to pathology for testing. A frozen section confirmed the tumor was metastatic. All we could do now was wait for the final pathology results to confirm the source of the cancer.