Return of the Blog...and Cancer
Well, it’s been a little while since this blog has been updated. Sadly, the reason of the return of the blog is that my nasopharyngeal cancer (NPC) has also returned. The tumor was confirmed in late February and it’s been an emotional roller coaster since then. The early weeks were especially challenging, as the shock of the cancer recurrence, combined with uncertain treatment plans and more pessimistic prognosis, took a toll on us. Throughout March, we visited doctors from Northwestern Medicine (NM), University of Chicago Medicine (UCM), Stanford Medicine, and MD Anderson Cancer Center (MDACC), and got opinions from leading Asian doctors, where this form of cancer is more common.
Today, we are feeling more hopeful, but still know there is a long and challenging road ahead. Treatment has started and we have a plan in place, one that is all the experts agree is the right approach.
The first few weeks in March was challenging. The anxiety around getting test results without context and the fear that the cancer had spread was tough. I started some research into treatment of recurrent NPC, but had to stop because it was too depressing. It was also especially hard for us to hear doctors tell us that the cure rate was 5% for recurrent cancer after concurrent chemo/radiation (what I had done in 2018) or that we need to start thinking about end of life planning.
But as we’ve talked to more doctors, we are feeling more optimistic. The type of NPC cancer I have (EBV positive Asian strain), my relative youth and health, recent advances in drug and radiation therapy all tip the scales in my favor. So we are looking to stay positive.
Since my last blog post in July 2019, there have a great deal of positive life changes. I actually found posts drafted for a trip to Peru. Since then, Aiday and I have gotten married (at the Milwaukee Art Museum), took a honeymoon to South Africa and became proud parents to baby Charles, who was born in September 2020. I’ll try to capture some highlights in future posts.
This blog post will be especially lengthy (as I’m chronicling this for myself) and focused on medical issues. Future posts will include both health updates as well as topics of interest, namely dining and travel. One positive outcome from this diagnosis is that we are in more of an “enjoy it now” mode vs. waiting to savor something. So I’ve had some very good dining and wine experiences, which I’ll share later.
Throughout all of this, I have incredible support from family and friends. It is very much appreciated. My amazing wife Aiday has been by my side the entire time, coming to each doctor’s visit and being strong and caring for both me and our son. It goes without saying that Aiday and Charles are the inspirations that keep me going and bring me the most joy.
Synopsis & Treatment Plan
After being clear of cancer since November 2018 (last time I had scans), the return was quite unexpected. Throughout my follow up visits, there was no indication that the cancer would return, as the EBV blood tests and the endoscopies did not reveal anything abnormal. However, I started feeling ear pain in January 2022. At my regularly scheduled follow up visit, my radiation oncologist ordered an MRI, and in late February, the tumor was confirmed. The tumor is about the same size as the one that was discovered in 2018 - roughly the side of a plum - and is located in the middle of my head, on the right side between my ears and nose. Fortunately, the tumor is still localized (no spread), so we are pursuing curative treatments. The MRI in February 2022 was the first image since November 2018, so it’s not clear whether the tumor was persistent vs. recurrent or how fast the tumor is growing.
The treatment plan is a systemic approach, starting with induction chemotherapy + immunotherapy. The ideal case would be that the drug therapy completely kills the cancer, and there is no need for additional treatment - just immunotherapy for the rest of my life. In the more likely case that the tumor shrinks but is not completely gone, the options for the next phase includes surgery, and various forms of radiation. Surgery is not an option at this time - too much risk with potentially severe quality of life impact.
Since the tumor returned in the epicenter of the 2018 radiation field, it has shown to be resistant the treatment I had before, so we must try something new. I had previously undergone concurrent chemo and radiation followed by additional chemotherapy. The drug combination and the order of treatment are different this time.
I started treatment at University of Chicago Medicine on 12 April 2022. The plan is to do 3-6 cycles of treatment, with each cycle lasting 3 weeks. I’ll be taking a combination of gemcitabine, carboplatin and pembrolizumab (Keytruda). This combination has shown promising results in recently published studies. As far as the treatment itself, I’ll get infusions of all 3 drugs (plus a 4th infusion of anti-nausea medication) on day 1 of each cycle, then will get an infusion of gemcitabine on day 8 (no infusions the 3rd week of each cycle). According to the doctors and the literature, this is a “fairly well tolerated” chemo regiment, with less severe side effects. I’ll be chronicling how I feel in subsequent posts.
In a way, I’m relieved to be starting with the chemo/immuno treatments. I’m relatively healthy, so I hope my body can handle this course of treatment. When I first found out about the recurrence, and before getting additional opinions, I was worried that I’d have to do another round of radiation to my head and mouth. Radiation was pretty rough the first time (lost ~20% of my body weight or 35 lbs, couldn’t eat or drink much at the end), so the prospects of doing it again are daunting. It may still need to happen, but at least it’s not for right now.
Timeline
Mid January 2022: I noticed some right ear and jaw discomfort. It took the form of intermittent, sharp pain that would last just a moment or two at a time. I thought it was an infection or a long-term side effect; the thought of cancer recurrence did not cross my mind
31 January 2022: pre-scheduled follow up visit with Dr. Mittal, my radiation oncologist at Northwestern Medicine (NM). An endoscopy did not reveal anything concerning but he ordered an MRI. This was not available at NM until the end of February
17 February 2022: appointment with Dr. Tan, my ENT at NM. The ear/jaw pain had not resolved, so I wanted to get another opinion. He also performed an endoscopy and did not see any abnormalities. I took some antibiotics for a potential infection but that did not help
25 February 2022 (Fri): MRI of my head and neck at NM. This was the first imaging done at NM since my treatment ended. The results of the MRI was released via MyChart on Sunday morning, though I did not speak to a doctor until Mon afternoon. This was a period of great anxiety, as I did not know how to interpret the results
3 March 2022: biospy to confirm that the tumor in the MRI was cancerous. Fortunately, this was done as an outpatient procedure by Dr. Tan. Since the tumor was in a hard-to -each area, we weren’t sure if I’d need general anesthesia in an OR to get the biospy. Dr. Tan was able to rip it out, with no pain or side effects to me. We also meet with Dr. Lorch, the new head & neck medical oncologist at NM
11 March 2022 (Fri): PET scan to assess spread. The results showed no distant spread (i.e. nothing in my lungs) but did show two “suspicious” lymph nodes under my chin. We got word of this on Friday evening. We spoke briefly to Dr. Lorch, but again, this was a weekend of great anxiety, as what we thought was a local case was no longer something we could be sure of
14 March 2022: biopsy (fine needle aspiration) of the suspicious lymph nodes. To our great relief, these looked to be normal, non-cancerous cells. Thus, it did not appear the cancer had spread and was still considered localized
15 March 2022: initial visit to University of Chicago medicine. Met with Dr. Haraf (radiation oncology) and Dr. Gooi (ENT)
16-22 March 2022: visit family in the Bay Area
18 March 2022: appointment with Dr. Colevas, a medical oncologist, at Stanford Medicine. He sees 100+ new NPC cases a year and is considered one of the foremost US experts for this type of cancer. For comparison, NM and UCM see ~8-12 cases a year; Asian doctors see thousands of NPC each year
23 March 2022: full day of appointments at both Northwestern Medicine and University of Chicago Medicine. The visit to UCM included meeting with Dr. Rosenberg, a medical oncologist, as well as Dr. Roxbury, an ENT specializing in surgery, and Dr. Polster, a neurosurgeon. These two took time to go through the images in detail, explain how they might approach surgery, and the risks involved with each part of the procedure
28-31 March 2022: a week in Houston to visit MD Anderson. We had appointments with a number of their head and neck cancer specialists, including Dr. Hanna, a surgeon; Dr. Gillison, a medical oncologist; Dr. Phan, a radiation oncologist; and Dr. Aponte Wesson, an oral oncologist, as well as their PAs and nurses. I got an additional MRI, as it was now 4 weeks past the first one and the doctors needed a higher resolution image
12 April 2022: start treatment at UCM
More Detail
Why is surgery NOT an option?
The size and location of the tumor make surgery not a viable option. The tumor is slightly larger than the original tumor. It is located too close to too many critical structures, including the carotid artery and the cranial nerve. There is not sufficient surgical margin (space between cancerous and non-cancerous cells). Since the likelihood of removing all the cancer is low, I’d have to do all the other treatments post-surgery, so there are better options tan surgery as the front-line treatment. Removing the cancer would require a lot of decisions regarding quality of life, as some of the structures may need to be sacrificed to remove the tumor. No doctor we consulted with recommended surgery as the first option.
However, if the tumor shrinks after drug therapy, then surgery may be an option if there is enough space between the tumor and the other structures.
Where are you getting treated? Why did you switch?
We have started treatment at University of Chicago. The treatment plan recommended by all the doctors converged on the systemic treatment. For us, staying in Chicago was the least disruptive approach, as we have our support network here. The drugs are all the same, so as long as the administration and monitoring of the side effects is done well, we felt comfortable doing it in Chicago.
UCM took an approach that better matched our approach, at least compared to NM. At UCM, the doctors took time to review the images, explain their approach and candidly discuss the risks. Further, their follow up protocol is more rigorous, with regular imaging to look for the return of cancer and catch it early. While we like the doctors and care team at NM, the follow up protocol was lacking, as we could (and perhaps should) have caught this earlier.
What is the treatment plan, especially after chemo/immune?
I am hoping that the chemo/immuno course will run up to 6 cycles, because that would indicate that the tumor is shrinking and responding to the drugs. The plan is to get imaging every 2 cycles to assess response. In the best case, the drugs would completely kill the cancer and I would not need additional treatment - just the immunotherapy afterwards.
More likely, the tumor will shrink and then we’ll have to assess options and revisit the treatment options. Surgical resection is the preferred option if possible. Radiation is also a curative option, but carries potentially greater side effects. In our discussions, we got a sense that UCM is more likely to indicate a surgical option vs. MDACC. But we’ll have to see when the time comes.
The decision of where and which treatment to get for this second phase is critical. Unlike the drug treatment, which uses the same drugs, the skills and experience of the surgeon and radiation team has a greater impact on the outcome.
If the tumor does not respond to the drugs, then we will have to make some difficult decisions. This is not an expected outcome, though.
How does MD Anderson fit into the options?
MDACC is a very impressive center. All off their staff were top notch and the quality of their facilities is state-of-the-art. We felt more hopeful after the visit, as their expertise and technology seem to enable options that other centers cannot provide, at least didn’t discuss with us. If radiation is part of the treatment plan, it is highly likely that we would move to Houston and do it at MD Anderson.
Dr. Phan, the radiation oncologist, is a specialist in re-irradiation of the head and neck. His experience, along with cutting edge technology, gave us more hope that radiation could cure this cancer and without severe side effects. He mentioned and explained some radiation treatment options that we hadn’t encountered before. These included stereotactic and volumetric modulated arc therapy (VMAT). Stereotactic uses precise high dose radiation that is targets the tumor in 5-7 treatments, given every other day. He said the side effects are much less than for photon therapy and the near-term outcomes are as good, if not better. There is just not enough long-term data, as he’s been doing this for only 6 years. VMAT is another method that precisely targets the tumor to reduce side effects. MD Anderson also has proton therapy options, which is also highly targeted. Dr. Phan said that we would take multiple images (e.g. MRI, PET, CT scans), then do simulations to compare all the treatment methodologies in order to choose the radiation method that could achieve the best results with the least side effects. We felt comfortable and confident with his approach.
What drugs are you taking now and why?
My cancer drug regiment includes two chemotherapy drugs - gemcitabine and carboplatin - and one immunotherapy drug - pembrolizumab (Keytruda). Recently published studies for patients with recurrent NPC taking a drug combinations very similar to this showed encouraging results. The chemo drugs act to slow the growth of fast growing cells (both cancerous and non-cancerous) while the immuno drug acts to enable my body to fight the cancer.
I am taking carboplatin instead of cisplatin, which is the drug used in the studies. I had taken cisplatin as part of treatment before, but it resulted in tinnitus and high frequency hearing loss. Carboplatin is less toxic and since there isn’t strong data to show that cisplatin works better in this specific case, it was decided that carboplatin is the better option for me. Gemcitabine was not part of my first treatment plan, so hopefully this will be effective on the tumor.
Despite Keytruda advertising all the time, I never paid attention to those commercials until now. This is a checkpoint inhibitor, also known as a monoclonal antibody. They remove barrier so that my own immune system can attack the cancer cells.
What are the expected side effects of chemo/immuno? Do you have to change your daily routine?
These drugs are said to have less severe side effects, and the side effects can be managed (with more drugs…). The key expected side effects are flu-like symptoms, nausea and fatigue, as well as low white blood cell counts. While side effects such as hair loss, loss of appetite, mouth sores, and taste changes (for carboplatin) are listed as potential, they occur less frequently. For pembro, one key concern is that my body will “overreact” and attack healthy organs. Let’s hope that doesn’t happen.
While on chemo, the doctors said that I should try to remain active and pursue a healthy lifestyle. So I don’t need to be self-isolating in a bubble, but I do need to take precautions against getting sick, as I’ll have less ability to fight an infection. I plan to be masked whenever I’m around people, but otherwise, I can still travel, go the gym, be outside, visit friends and family, etc.
Are you able to eat and enjoy food?
This course of treatment shouldn’t impact my ability to eat and enjoy food the way that radiation make it very difficult. I should also be able to maintain my weight.
We did ask the doctors if any dietary changes could increase the odds of success. They just said to continue to eat healthy, which includes a more Mediterranean diet. Right now, there aren’t restrictions on raw/undercooked foods (unlike last time), either.
The only restriction is that I can’t drink alcohol, as they want to eliminate any factors that could cause the liver function test results to fluctuate. As a result, we did open up some nice wines from the library and enjoyed those before starting treatment.
How is work?
Both of our employers have been extremely supportive and we are very grateful for that. We were able to step away from work to do all the testing and get the additional opinions in the Bay Area and Houston. We are returning to work now that treatment has started and the path forward is a little more clear. We will both continue to work from home primarily.
Is there anything we can do to help?
We appreciate all the offers of help and support. At this time, I don’t think there is anything we need - we just have to hope the drugs will work and the tumor response. We are trying to return a more normal routine. Knowing that we are in your thoughts and prayers is more than enough.
Thank you for making it all the way through. If you have any questions or comments, please free to post or send me a message directly. Hopefully will have some more interesting content coming up.