Update 6

 

Date: Saturday, September 12, 2020, at 5:57 PM

 

Dear Family and Friends,

 

Two months ago was the last update we sent. The cancer was getting worse, my lung was still susceptible to fluid build-up, and I was transitioning from an unsuccessful targeted therapy to immunotherapy + chemotherapy infusions.

 

I had my first chemo infusion on Tuesday 7/14. Boy, those are long days. They start with blood draws for labs, then a visit with my oncologist, then I get admitted to the infusion center, then the meds have to get mixed, then two-and-a-half hours of infusion. They'll get a little shorter in a month when I get to drop one of the chemo drugs.

 

After the CT scan in early July that showed my lung wasn't expanding, the pulmonologists decided to perform a procedure called pleurodesis. They use talc as an abrasive to cause the lung and chest wall to scratch and eventually bond together with scar tissue in the fully expanded position. I was admitted into the hospital on Friday 7/24. The pleurodesis was performed by the Interventional Pulmonologist using a camera inserted into the pleural space. As part of the procedure, a chest tube was inserted, as well as a long-term catheter called a PleurX. The PleurX would allow me to drain the pleural fluid at home, if the pleurodesis wasn't successful. Finally, I had a port put in to make receiving the chemo infusions easier. Fortunately, we were able to coordinate getting both surgical teams to do their respective procedures back-to-back during one OR case. Steven spent a few days choreographing the procedures and doctors, making sure everyone would be in place. Unfortunately, the pleurodesis took longer than planned, but the port surgeon was patient and everything wrapped up nicely. I remained in the hospital with suction on the chest tube to help expand the lung. The chest tube was removed Tuesday afternoon, and I was discharged Wednesday morning 7/29.

 

A week later I went back to see the pulmonologists. They looked at my lung and determined the pleurodesis was successful: my lung appeared to be fully expanded, and there was very little room for fluid to reaccumulate. We did some at-home drains with the PleurX system, but very little fluid came out. With the lung in place and insignificant fluid drains, it was determined the PleurX was no longer needed! It was removed on Friday 8/14. So great to be free of tubes!

 

Before my third infusion on Thursday 8/27, I had a CT scan and met with my oncologist. The radiologist report wasn't ready, but Dr Riaz was able to view the CT images and determined the tumors are shrinking and responding to treatment. He even used the magical "R" word - remission - could be possible! He didn't explain what that would look like (how often we monitor, keep treating, etc), but we’re thrilled the treatment is working and can continue looking forward with hope and optimism.

 

My fourth infusion is this coming Thursday. It’s the last one with carboplatin, then the infusions will switch to just pemetrexed and Keytruda - and be an hour shorter! I'll have another CT scan on or near the date of my fifth infusion in October.

 

Like I learned from Kristina, I'm trying to not look too far ahead and am taking things one day at a time. We decided to make a last-minute long-weekend getaway to the Biltmore Estate in Asheville, NC, which is where I'm writing this. We're taking a break from reality to enjoy some quiet time and live like a Vanderbilt for a few days!

 

With continued love and gratitude,

Matt and Steven

 

 

Update 5

 

Date: Friday, Jul 10, 2020, at 8:48 AM

 

Dear Family and Friends,

 

It's been a few weeks since our last email. Matt had been feeling much better after the fluid was drained on 6/13/2020. His breathing was strong, side effects were minimal, and life has almost felt normal. We were able to resume our 3 mile walks. At the end of June we flew to California to meet with Dr. Wakelee at the Stanford Cancer Center.

 

As a teaching institution, Stanford has fellows who are oncologists in training. Matt met first with Dr. Roy, and then Dr. Wakelee joined them. Unfortunately due to ongoing COVID-19 restrictions, visitors weren't allowed. Steven joined the visit remotely from outside the building via FaceTime, but it was great that he was able to participate. The doctors spent about 1.5 hours with Matt. They were pleased with how well he was doing physically, and felt that either the targeted therapy he was already on (Dabrafenib + Trametinib) or chemo+immune therapy were appropriate treatments.

 

Because the BRAF mutation is so rare (1-2% of all non-small cell lung cancers), there isn't very much data from clinical trials to compare between the two treatment regimens. Since he had already started on targeted therapy, Dr. Wakelee recommended continuing it. She also recommended getting a repeat CT scan after returning to Cincinnati at the 6 week mark to see if the treatment was having an effect on the tumors. The primary goal of the trip was to establish care with Dr. Wakelee. We were happy to get to spend the rest of the week enjoying friends and family, sunshine, and moderate temperatures.

 

After returning to Cincinnati, Matt started having night sweats and fevers, and his cough started to worsen. He had an appointment with pulmonology on Tuesday of this week, and then the CT scan the following day. Dr. Riaz called us Wednesday night to go over the results of the scan. Unfortunately, the targeted therapy did not appear to have been working. The tumors are growing and more lymph nodes are involved. After much discussion, he recommended stopping the current therapy, and transitioning to chemotherapy and immunotherapy infusions. This will be a 3 drug combination of carboplatin, pemetrexed, and pembrolizumab (also called Keytruda) given by infusion every 3 weeks. We are hoping for his first infusion to start on Monday 7/13/2020.

 

We initially chose the targeted therapy option because it has fewer side effects and is easier to manage than infusions. However, this chemo regimen is well tolerated and generally effective. We are hopeful that it will reduce Matt's cough, pleural effusion, and other symptoms.

 

Since Matt's diagnosis, there have been good days, and a handful of pretty bad ones. So, we're always appreciative of good ones like yesterday. We went to the Evendale Eagles swim meet. It was wonderful to catch up with so many friends and neighbors, and of course to see Nolan swim. Here's to many more good days ahead.

 

With Love and Gratitude,

Matt and Steven

 

 

After the Swim Meet on 7/9/2020 (photo by Carolyn Carmody)

 

 

 

Update 4

 

Date: Monday, June 15, 2020, at 10:43 PM

 

Dear Family and Friends,

 

In our last update we said we were going to be watching for side-effects from the medication. I just began my fourth week of treatment and the medication seems to be treating me well, I've exhibited no side effects.

 

However, last week was really rough for a different reason: I had lots of coughing and shortness of breath. I tried to get through the week but by Friday I couldn't get up the stairs at work without closing myself off in my office for 30 seconds to cough and hack and catch my breath. Dr Riaz sent me in for a chest x-ray which revealed another effusion. I was admitted to the hospital that night, and underwent thoracentesis to remove another 2.5 L of fluid from around my right lung on Saturday. Thankfully the procedure had no complications and I was discharged Sun.

 

There were almost 7 weeks between the two thoracentesis procedures, and the first 4 weeks were before I started treatment while we were waiting for the testing to be completed. So, it isn't entirely unexpected that the fluid would re-accumulate in that amount of time. We are hoping that the medication will start to shrink the tumors and that the fluid won't return.

 

In two weeks we are traveling to Stanford to meet with Dr. Heather Wakelee, whom Dr. Riaz described as excellent, and a thought leader. He is excited for us to meet with her, and then we'll follow up with him later in the week. After we return home I meet with the Interventional Pulmonary clinic at UC who will monitor my lungs and make a plan should the fluid continue accumulating.

 

For the moment I’m breathing well again, I’m trying to keep moving, and as always, doing my best to stay positive.

 

With love and gratitude,

Matt and Steven

 

 

Update 3

 

Date: Sunday, May 24, 2020 11:05 PM

 

Dear Family and Friends,

 

After what seemed like an endless wait, on Thursday evening we received the final molecular analysis from Matt’s biopsy. We had discovered the previous week that tumor cells have a high expression of PD-L1, which meant that he would not need platinum-based chemotherapy. The final report also identified that a “driver mutation” (specifically V600E in the BRAF gene). This is a relatively rare mutation that is found in about 1-2% of patients with non-small cell lung cancer.

 

Fortunately, in 2017 the FDA approved a new combination drug therapy that targets this specific gene mutation. The medications, dabrafenib (Tafinlar) and trametinib (Mekinist), are taken orally, so Matt won’t need to undergo infusion treatments. These medications are very new, and the overall outcomes are still being studied. One challenge is that there can be extensive side effects that make some patients unable to continue treatment. We are hopeful that Matt’s age and otherwise good health will help him tolerate the regimen well. This treatment is by no means a “cure,” but the hope is that it can delay progression of the disease.

 

We will be meeting with Matt’s oncologist this week to discuss the plan of care and overall prognosis. Because this mutation is so uncommon, the outcomes are difficult to predict. The first rule for patients is to avoid Google searches of symptoms and diagnoses. However, we’ve never been the best at following instructions. The latest data from this drug regimen show that about one-third of patients survive to 5 years (if interested, the study is available from the New England Journal of Medicine). We hope that Dr. Riaz will be able to provide more information and put these findings into context later this week.

 

After receiving the pathology report Thursday evening, Friday was a blur of activity. The team at the University of Cincinnati Specialty Pharmacy leapt into action to help Matt get the medications before the start of the long weekend. They worked quickly with Matt’s insurance company to get the medications approved and shipped out that afternoon. They arrived Saturday morning, and he was able to start treatment right away.

 

We are so grateful to have your love and support, and all of the well wishes. While we haven’t been able to respond to all of them yet, your messages have brightened our spirits during a scary and uncertain time.

 

With love and gratitude,

Matt and Steven

 

Treatment day 2, with post Corona haircuts!

 

 

Update 2

 

Date: Thursday, May 7, 2020 8:14 PM

 

Today we met my oncologist, Dr. Riaz, by video chat. He practices at University of Cincinnati and specializes in head and neck and lung cancers. We really liked him, and Steven knows him from residency.

 

Dr. Riaz went through the various treatment options, which are entirely dependent on the reason that the cancerous cells are malfunctioning. He explained that all cancer cells divide and reproduce uncontrollably, but that there are a number of different causes. The biopsy that was performed on 5/1/2020 was processed by UC Pathology and sent to a specialty lab in Arizona for testing. Full analysis won't be complete for at least 10 days. Therefore, the treatment plan is still a few days away.  In the meantime, he is encouraging me to keep moving, eating well, and paying close attention to symptoms. Healthy and strong patients tolerate treatment better, regardless of the type of treatment.

 

Overall, Dr. Riaz was somewhat optimistic. He felt that it is a good sign that the pleural effusion (fluid) has not returned yet, and that my age, non-smoking status, and good health are working in my favor.

 

Dr. Riaz outlined three scenarios for treatment based on the lab analysis.

 

Driver mutations prevent the normal cell replication checkpoints from functioning correctly, which results in uncontrolled division of cells. For some mutations there are specific “targeted therapies” (typically oral medication). This would be taken indefinitely to continually target those cancer cells. Of non-smokers, about 25-30% of patients have cancers linked to these driver mutations.

 

If a driver mutation is not present, the cells could exhibit high PD-L1 expression. This receptor is how the immune system targets cancerous cells. Treatment for high PD-L1 cells is an immunotherapy drug (you might have heard ads for Keytruda, which is one type). This would be delivered via infusion every three weeks for at least two years. Approximately 25% of patients have high PD-L1 expression.

 

If neither a driver mutation or high PDL-1 expression are present, the standard treatment is a combination of chemotherapy and immunotherapy. The most likely regimen would be carboplatin and pemetrexed as the chemotherapy agents, and pembrolizumab (Keytruda) for immunotherapy. Dr. Riaz reports that this regimen is generally well tolerated for patients.

 

I won't lie, these past few days were pretty gloomy. Because cancerous cells were found in the pleural fluid and lymph nodes, it is considered stage IV metastatic cancer. While there will be difficult times ahead, there is reason to be cautiously optimistic today. Thank you for all of your emails and kind words. They have lifted our spirits and helped us cope with a very difficult week.

 

With love and gratitude,

Matt and Steven

 

 

Update 1

 

Date: Saturday, May 02, 2020 11:14 PM

 

Dear Family and Friends,

 

We have some unexpected and sad news to share. Under ideal circumstances we would not be sharing this news by email, but we felt that getting information to you quickly was paramount.

 

Last week Matt started to have some shortness of breath and a cough. Given the current Coronavirus outbreak, his PCP sent him for an x-ray on Monday, which revealed a plural effusion (fluid collection) in his right lung.

 

Matt was admitted to University of Cincinnati Medical Center on Monday evening. The effusion was drained on Tuesday, and he felt much better. However, the analysis of the fluid was concerning. He underwent a CT scan, which showed nodules in his lung and enlarged lymph nodes. Early Friday morning Matt had a lymph node biopsy performed via bronchoscopy, which unfortunately revealed malignant cells consistent with non-small cell lung cancer. Because these cells were also found in the pleural fluid, it is considered advanced stage, and surgical management is not an option.

Matt was discharged from the hospital on Friday afternoon, and is doing very well at home. He isn't having any pain, and the only symptom he is having now is a mild cough from the bronchoscopy procedure.

 

We are currently waiting for genetic analysis of cells from the biopsy, which takes several days to complete. Hopefully this will reveal a genetic mutation that could be managed with targeted therapy. We are hopeful that he will respond well to treatment, especially given his young age and otherwise excellent health.

 

While we greatly appreciate all of your well wishes and support, we are still in a bit of shock over the diagnosis. As you can imagine, this has been an exhausting and emotionally draining time for us. We ask for some space and quiet time to work through our thoughts and plan the next steps. We will send updates as we get more information. If you'd like to send thoughts or wishes, please email them to mg@gardnernetwork.com.

 

With love and gratitude,

Matt and Steven