Its been a crazy past few months with the transition to St. Louis, shoulder surgery, adjusting to new seizure meds, and starting physical therapy. On a positive note, my shoulder is continuing to heal and I began physical therapy at the end of December. Its also been over 3 months since my last seizure, which is by far the longest seizure-free period I’ve experienced since the seizures started nearly a year ago.
Despite all this good news the primary reason for this post is that after running a variety of tests we recently determined that my lung cancer has returned. I know this may sound crazy considering we stated that my scan in December showed stable results. So, I will elaborate further.
Over the past few scans we detected activity in my lymph
nodes. A July scan detected a few very slightly enlarged lymph nodes. They were
barely larger than normal so my oncologist decided to wait and rescan in
September. The September scan revealed the previously enlarged lymph nodes to
be shrunken back to normal size, but different lymph nodes were enlarged. In
most cases this does not represent cancerous activity, but the body struggling
to fight infection. The December scan revealed a similar type scenario, but
with more lymph nodes enlarged and larger in size than previous scans. Throughout
all these scans the tumor in my right lung remain unchanged, indicating stable
results. At the end of December, they biopsied one of the lymph nodes in which
they take actual tissue from the lymph nodes and test it to determine if the
cells are cancerous. This is by far the most conclusive test that can be done.
As you might expect, the test came back positive for cancer.
What Does This Mean?
The silver lining is that we did catch the cancer early. As of December, the cancer was characterized as slow growing. It also means that the tumor that we had been monitoring since discontinuing treatment in August 2017 most likely was not cancerous and simply left-over scar tissue from the golf ball size tumor that appeared at the initial diagnosis. If it was cancerous, it most likely would also be growing along with the lymph nodes.
The silver lining is that we did catch the cancer early. As of December, the cancer was characterized as slow growing. It also means that the tumor that we had been monitoring since discontinuing treatment in August 2017 most likely was not cancerous and simply left-over scar tissue from the golf ball size tumor that appeared at the initial diagnosis. If it was cancerous, it most likely would also be growing along with the lymph nodes.
My oncologist has now submitted the biopsy tissue for
genomic profiling of the cancer. This is the most advanced testing that can be
done on cancer cells today. This testing involves sequencing the DNA of the
cancer cells to identify what mutation(s) exist that are causing the cancer. There
are several mutations that can be treated with a “targeted therapy”. These
targeted therapies are a type of cancer treatment that can be given in pill
form to a patient and are designed to attack only the cancer, unlike
traditional chemotherapy which attacks all fast-growing cells. This results in
much better outcomes for the patient and less side effects than traditional
chemotherapy.
There is no guarantee that my cancer will test positive for
a targetable mutation, but that is what we are hoping and praying for. I hate
to get too much into hypotheticals, but I am also a planner and I like to
analyze so I’ve already broken down and ranked the potential treatment options
based on what the test results may be. I prefer to think of it as “drawing up
the battle plans” for the fight ahead.
1. Targeted Therapy – This is by far the best
treatment option offering the least amount of side effects, best chance of a
prolonged response, and least impact on daily life.
2. Clinical Trial of a Targeted Therapy – Its
possible that I may have a mutation in which there is no approved targeted
therapy. However, there are many clinical trials underway testing promising new
drugs for newly discovered mutations. If I have a mutation that aligns with a
clinical trial, this will be our course of action.
3. Immunotherapy / Chemotherapy – I’ve already
undergone immunotherapy which worked amazingly well, despite discontinuing
treatment early because of toxicity issues. There is no guarantee that it would
work again and there is the risk of experiencing toxicity issues again. Traditional
chemotherapy is always an option, but brings the most side effects and the least
chance of prolonged remission.
We have options and have caught the cancer early. This time
around its more complex, due to my seizure history and partially repaired
shoulder. Adding any type of cancer drug will increase my seizure risk and most
likely exacerbate the side effects of my seizure medication. There is a very
small chance that my oncologist may want to wait and monitor the cancer for a
few months, but I am by no means depending on that.
Next Steps
Maureen and I have an appointment later this week with our oncologist and hopefully we’ll receive the test results and decide on a course of action. Based on my lengthy explanation above we are definitely hoping that I am eligible for a targeted therapy. However, I am mentally and physically prepared for whatever course of action is needed.
Maureen and I have an appointment later this week with our oncologist and hopefully we’ll receive the test results and decide on a course of action. Based on my lengthy explanation above we are definitely hoping that I am eligible for a targeted therapy. However, I am mentally and physically prepared for whatever course of action is needed.
Reflection
I was initially surprised at this news, but being a stage 4 lung cancer patient, I always knew that the cancer was going to come back at some point in the future. It’s unfortunate that the majority of my progression free time was spent dealing with seizures, but nothing is going to change that now. I am very blessed for all the support that Maureen and I have received over the past two years. At times its been frustrating that I cannot drive anymore, but it does make life simpler not worrying about traffic or commuting. I expect that this will help as I begin whatever cancer treatment is decided upon. I will be posting again once we receive the test results and decide on a course of action.
I was initially surprised at this news, but being a stage 4 lung cancer patient, I always knew that the cancer was going to come back at some point in the future. It’s unfortunate that the majority of my progression free time was spent dealing with seizures, but nothing is going to change that now. I am very blessed for all the support that Maureen and I have received over the past two years. At times its been frustrating that I cannot drive anymore, but it does make life simpler not worrying about traffic or commuting. I expect that this will help as I begin whatever cancer treatment is decided upon. I will be posting again once we receive the test results and decide on a course of action.
