Since my last post, I celebrated another amazing Christmas with family and friends. These days, best part of the holiday is not getting gifts, but seeing the reaction from Avery when she gets her gifts. It’s the most amazing feeling to see her smile and hear her screams of excitement.
I also celebrated my 2 year cancerversary on December 16th. Earlier this month, we made our quarterly trek to Charlottesville and as we drove up there, I remembered that we made our first trip to see Dr. Hall around this time two years ago. I reflected on how nervous I was going into that trip thinking “what is going to be my prognosis going to be?” and “how many days/weeks/months do I have?”. Never in a million years did I think that these trips to Charlottesville would become a routine every three months where the doctor tells me that my scans are all clear. Until this visit, I’ve had questions for the doctor related to my health, research in the field, and advances. This time, I was fresh out of questions, which is a great thing 🙂
Speaking of research and advances, the LUNGevity foundation and ALK Positive have partnered to fund $1 million dollars in research with the ultimate goal of transforming ALK-positive lung cancer into a chronic or curable condition. Being in the medical field and having gone through advanced schooling over the the past 10+ years, I am very privileged to have a fantastic network of medical professionals and scientists. If there is anyone you know that has a background in cancer research and wants a chance at funding for their research, please encourage them to apply for one of the two available awards. For further details or to apply, use the following link: https://lungevity.org/our-research/translational-science-research-grant-programs/2020-alk-positive-lung-cancer-research
My hope is to help identify a researcher that may, one day, save my life and the life of so many other ALK Positive patients. Any help would be very much appreciated!
For those who didn’t know, November is lung cancer awareness month. In honor of this, I wanted to share some of the facts that surprised me most when I was first diagnosed:
1 in 16 people will be diagnosed with lung cancer in their lifetime. That equates to one diagnosis every 2.3 minutes.
Lung cancer is not a self-inflicted, smokers only disease. 60% to 65% of all new lung cancer diagnoses are among people who have never smoked or are former smokers.
Lung cancer is the leading cause of cancer death, taking more lives annually than colorectal, breast, and prostate cancers combined.
As mentioned in the last blog, we held our first ever fundraiser for lung cancer in honor of my birthday last month and it definitely surpassed my expectations. Thank you for everyone who donated directly or came out to the event. Our goal for the fundraiser was $2,500, and we surpassed that within just a couple weeks and were at $3,520 before the event was even held!
The event was a great success! My cousin Liem helped to design the menu. Below are a few of the amazing dishes he created. The Savage Salmon was my personal favorite.
We had a great turnout and raised $1,917 that night. What’s even better is that on the day of the event, the GO2 Foundation for Lung Cancer launched an ALK Positive Research Fund to finance critical research projects and very generous donors have agreed to match 150% of everything donated. That means the $1,917 raised from the event will equate to $4,792.50!
All in, $8,312.50 was donated in support of research for ALK rearranged lung cancer in our first year, more than tripling our initial goal! We hope this will become an annual event we can grow each year to contribute to making lung cancer a chronic and treatable disease.
I know a cure is right around the corner, but until then I hope to continue to travel the world and check some things off my bucket list. Varisara and I just got back from a parents-only trip to Costa Rica where we went ziplining, rode horses, enjoyed hot springs and a mud bath from an inactive volcano, and represented ALK positive. With views as breath-taking as we experienced sometimes it’s hard, but I always try to remember to #breathedeep because you never know when it will be your last.
Today is a special day and I wanted to take this opportunity as a guest blogger to wish Dan a very happy birthday! Today, Dan is 32 and thriving and Avery and I are so happy to be celebrating today with you.
I realize it has been a very long time since his last update (I’ll get on Dan about that one). Since the last post, we’ve just been living life and keeping busy: Dan started his chief year in residency (finally, there’s a light at the end of the tunnel!), we went on a family vacation to West Palm Beach, and Avery turned 2 (how did that happen so quickly?!?). This past week, we went to Emily Couric Cancer Center at UVA for Dan’s most recent scan and all was clear! We are so thankful that the disease remains at bay.
With this good news, we are focusing our efforts on advocacy and awareness! In partnership with Wild Ginger in Richmond, VA, I am helping to celebrate Dan’s birthday all month by organizing a birthday fundraiser dinner on October 29th where a portion of the proceeds from the evening will go directly to fund lung cancer research. It is a 4-course dinner, with 2 of the courses specially designed by Dan’s cousin Liem, paired with wine for $60. If you are local to the area, we would love to see you there! Call soon as seats have been filling up fast!For those of you who are not local to Richmond, please feel free to contribute directly at this site: https://lungevity.donordrive.com/campaign/Dans-Birthday
Dan is also trying to get into the advocacy action! The International Association for the Study of Lung Cancer (IASLC) has a STARS (Supportive Training for Advocates on Research & Science) Program that aims to increase the number of Patient Research Advocates (PRAs) equipped to provide accurate scientific translation in their lung cancer patient/caregiver groups and to provide the patient perspective for lung cancer research and policy. As part of the Program, participants attend the World Conference on Lung Cancer (WCLC), the world’s largest meeting dedicated to lung cancer and other thoracic malignancies. More than 7,000 delegates come from more than 100 countries to discuss the latest developments in thoracic malignancy research. How cool would it be for Dan to represent ALK Positive and the US in this forum? It is a competitive program where only a select number of PRAs (5 in 2019) are selected each year, but I can’t think of a better PRA than a practicing surgeon living with ALK-rearranged lung cancer? Keep your fingers crossed that Dan gets selected!
That’s all I have for now. I promise I will try to get Dan to post updates more frequently, but you know what they say: no news is good news. Happy Birthday to my amazing husband!
I just got back from a very busy, but rewarding, week of travel. Last weekend, Varisara and I attended Lungevity’s International Lung Cancer Survivorship Conference. The conference was held for the first time in 2010 and less than 20 people attended that first year. This is how many people were there this year:
I met so many amazing and inspiring people that it would take a novel for me to describe them all! Here are a few that stuck out:
Chris Draft is a former NFL player who started Team Draft (www.teamdraft.org), a national campaign to change the face of lung cancer, when his wife Keasha was diagnosed with lung cancer in 2010. Like me, she was a young, healthy, non-smoker. Sadly, Keasha passed in 2011, but Chris continues to fight this battle in her honor. He mentioned that being in the medical field, I can help to influence and promote early detection among my colleagues.
Amanda organized an ALK meet-up where I was able to meet with my other fellow “ALKies” from around the world. It was great to be able to talk to people who knew exactly what I was going through and empathize with my struggles (e.g. drugs we’re all on and the related side effects, the fact that we’re never in remission and will always (hopefully) be on some sort of pill or treatment).
Gina is the president of ALK positive (www.alkpositive.org), a patient-driven support group dedicated to advancing research and advocacy to change the future of ALK positive lung cancer. We discussed how I can get more engaged in the group, become an advocate, and change the face of lung cancer.
Frank, a fellow ALKie, is a father of 3 young children who was diagnosed 5 years ago. He is also in his 30s and, since he’s a few years ahead of me on the journey, gave me great advice for planning for the future and how to navigate living in limbo (i.e. being in a constant state of unknown).
Amanda was 24 when she was diagnosed and now 4 years later she’s making the most of the cards she’s been dealt. She is a huge advocate for Lungevity and has an amazing, upbeat attitude. She set-up a meet-up for survivors under the age of 40 and I was surprised at the number of people that I met that are under 40 living with this disease. There were many people in the same situation as me with young children trying to figure out how to traverse this “new normal” while trying to raise a family.
There were survivors from all over the world who attended the conference, including some who have been battling the disease for over 15 years. It made me feel so hopeful that the progress being made in medical advances is headed in the right direction!
After the weekend ended, we both felt excited and re-energized to fight this battle. I know I can become a bigger advocate for this disease. I have been given a platform that not many people have to make my voice heard through my work as a resident and I plan to use it wisely. Varisara is also thinking up ideas to help the cause and is looking to organize a fundraiser in the near future. This isn’t the last you’ll be hearing from the Tran family and we hope anyone reading this will join us in our fight to kick cancer’s a$$! Even Avery is getting in on the action as she loved the swag that mommy and daddy brought back from the conference.
On Monday after the conference we hopped on a plane and headed to Punta Cana for a much needed family vacation. We had a great week spending time with my parents, sister-in-law and her family, and family friends on sunny Bavaro Beach. Although, my wardrobe for beach vacations has changed a bit since being on Alectinib due to the increased photosensitivity. Sun protection clothing is in style now, right?
This whole past week reminded me to take this fight one day at a time, keep making memories, and cherish the moments we get to spend with our loved ones.
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.