Oh, and I have cancer. Stage IV adenocarcinoma, a non-small-cell lung cancer to be exact. I was diagnosed November 9, 2017. No biggie. It's just an incurable (for now) disease with a low rate of survival.
Now to answer the question that EVERYONE asks: Are you a smoker? My response: Why do you ask? Would you ask the same question of someone with bladder cancer (in which smoking can be a factor)? Or would you ask someone with diabetes how much sugar they consumed? My point here is that while smoking can cause lung cancer, it can cause other cancers and other health problems too. The problem is that people with lung cancer are stigmatized as assumed smokers and are "blamed" for being victims of this disease. In other words, lung cancer patients are often regarded as people who probably smoked and therefore "deserve" to get cancer. No one "deserves' this disease. And we should not limit treatment or compassion for people who have lung cancer, regardless of smoking history.
My particular cancer is marked by a rare genetic condition known as a ROS1 rearrangement. The good news is that there is treatment; there are several treatments, actually, even though this condition is rare. None of the treatments, though, is a cure. Rather, they keep the cancer in check, but the effect of treatment is only temporary; the cancer almost always returns.
I began my treatment with an oral targeted therapy called crizotinib (brand name Xalkori) in December of 2017. The drug is a tyrosine kinase inhibitor (TKI), which means it interferes with the enzymatic processes of cancer cells at the molecular level so that they can't continue to grow. Unfortunately, crizotinib was not the solution for me; though I responded well initially, the cancer became resistant to treatment after only a few months and metastasized to my brain. In May of 2018, I entered a clinical trial for a new TKI called lorlatinib that addresses resistance and also treats metastasis to the brain, and I had to make regular trips from Nashville to Boston each month to participate. I traveled regularly to Boston until November 2018, when the drug received FDA approval and was named Lorbrena. We had hoped that I would get a year or two or maybe even longer on this therapy before I'd have to seek other treatment. Initially, I had a complete response; the methods we use to spot tumors and cancer growth (scans and blood tests) didn't detect anything. But in May of 2019, a metastatic growth was found in a retroperitoneal lymph node, and while I was waiting to get approvals for radiation treatment, it progressed to my brain. So in the summer and autumn of 2019 I had radiation treatments for both sites of progression, followed up with a combination therapy of infusion chemo and Lorbrena. More brain mets were discovered in October 2019, and they've been treated with radiation as well. If I am faced with further progression, I may have the opportunity to enter another clinical trial eventually.
The science of cancer treatment is amazing, and I wish I could explain it better. I am deeply grateful for the researchers and the other clinical trial patients and even the lab mice who have contributed to the creation of targeted therapies. The hope for people living with lung cancer is that the science will outpace the disease, that new treatments will continue to be discovered to keep the cancer in check, and that someday, in the best of all possible scenarios, cancer will be completely curable. Until that time comes, I am doing my best to live each day I have as well as I can with the knowledge that this disease is currently incurable and might even kill me, if something else doesn't get me first. Still, I hope I get to stick around for awhile; I've got things to do and people to see.
I began my treatment with an oral targeted therapy called crizotinib (brand name Xalkori) in December of 2017. The drug is a tyrosine kinase inhibitor (TKI), which means it interferes with the enzymatic processes of cancer cells at the molecular level so that they can't continue to grow. Unfortunately, crizotinib was not the solution for me; though I responded well initially, the cancer became resistant to treatment after only a few months and metastasized to my brain. In May of 2018, I entered a clinical trial for a new TKI called lorlatinib that addresses resistance and also treats metastasis to the brain, and I had to make regular trips from Nashville to Boston each month to participate. I traveled regularly to Boston until November 2018, when the drug received FDA approval and was named Lorbrena. We had hoped that I would get a year or two or maybe even longer on this therapy before I'd have to seek other treatment. Initially, I had a complete response; the methods we use to spot tumors and cancer growth (scans and blood tests) didn't detect anything. But in May of 2019, a metastatic growth was found in a retroperitoneal lymph node, and while I was waiting to get approvals for radiation treatment, it progressed to my brain. So in the summer and autumn of 2019 I had radiation treatments for both sites of progression, followed up with a combination therapy of infusion chemo and Lorbrena. More brain mets were discovered in October 2019, and they've been treated with radiation as well. If I am faced with further progression, I may have the opportunity to enter another clinical trial eventually.
The science of cancer treatment is amazing, and I wish I could explain it better. I am deeply grateful for the researchers and the other clinical trial patients and even the lab mice who have contributed to the creation of targeted therapies. The hope for people living with lung cancer is that the science will outpace the disease, that new treatments will continue to be discovered to keep the cancer in check, and that someday, in the best of all possible scenarios, cancer will be completely curable. Until that time comes, I am doing my best to live each day I have as well as I can with the knowledge that this disease is currently incurable and might even kill me, if something else doesn't get me first. Still, I hope I get to stick around for awhile; I've got things to do and people to see.
Hi- I found you on a website as a "patient advocate and researcher". I appreciate the very personal voice your writing has.
ReplyDeleteMy husband has stage 4 nsclc. The chemo has taken him from someone who appeared and felt healthy except for a bad cough to someone emaciated, horribly weak and feeling so awful the chemo is worse than dying. Unfortunately he has something like a 1% "amount" of the protein or genetic material tht makes one an ideal canidiate for the targeted gene therapies. He is getting immunotherapy along with the nasty chemos that are now standard treatment.
What is a patient advocate and researcher? I am trying to find any other treatment we can do so we do not have to do nothing. How can I find sonone to help me research this? Or find an oncologist who has other therapies even if not the mainstream? The prognosis WITH this chemo is not good anyway, so how do we find something else to try that at least has a chance of slowing the cancer growth and will not make him feel so awful? How do I find out HOW to look? Are there people who know what's going on in cancer research who could help me before time runs out?
I worry- since the cancer centers make so much money on this new but fda approved (INSURANCE MONEY!) chemotherapy, what's the incentive to put him on another treatment? Our oncologist is not interested. "She is only trained in this therapy."
I see no way to send you a personal message. My email is wt (dot) katherine (at) gmail (dot) com.
If you have even the smallest breadcrumb trail of a direction to which you could direct me, I would be so incredibly grateful. Thanks very much and much good luck to you.
To say someone is a research advocate can mean a few different things. In my case, it means that I lobby members of Congress to better fund lung cancer research efforts at the federal government level. I ask them to increase funds for research at different federal agencies that conduct cutting-edge cancer research. I also do fundraising for patient organizations that do cancer research, like Lungevity and The GO2 Foundation. I'm not a scientist or a medical professional, but as a person living with lung cancer, I also try to help other lung cancer patients to advocate for themselves and to benefit from ongoing clinical trials and research. I entered a clinical trial and am still getting the benefit of that trial medication for a targeted therapy, so helping other patients advocate for themselves is my way of supporting their quest for better, more effective treatment.
DeleteIf you don't know about these patient organizations already, you may want to contact The GO2 Foundation for Lung Cancer and connect with an advocate there who can help you find out if there is a better treatment match for your husband. Check out their LungMatch program here: https://go2foundation.org/resources-and-support/general-support/lungmatch/. The GO2 Foundation also has Nurse-Navigators available to discuss treatment options. Depending on where you live, they can even come see you in person, but are also available by phone. I worked with one of the Nurse Navigators in Nashville when I was first diagnosed, and she was super helpful when I needed to talk over treatment decisions with someone knowledgeable about lung cancer. And also just explore their website to learn more about their options. Another good resource to learn about possible treatments is The Lungevity Foundation.https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options-for-lung-cancer.
If you want to be brave and try to find a clinical trial match for your husband on your own, you could have a look at https://clinicaltrials.gov/. All FDA-approved clinical trials have to be listed here publicly. If you have academic cancer centers in driving distance, you could also just search their websites for available trials to see if your husband might qualify for one, then either ask your doc for a referral or just set up your own appointment, which is what I did to get into the lorlatinib trial at Mass General. Here's the story I wrote about getting into the clinical trial with Dr. Shaw: https://sojournandstardust.blogspot.com/2018/05/go-ask-alice.html One thing you should know about clinical trials is that if you are receiving an experimental therapy, that treatment is free. You may have to cover your travel expenses though sometimes grants are available for that. Your insurance might be billed for any diagnostic work, scans, bloodwork, etc. that is done during the trial.
You mentioned trying to find treatments outside of cancer centers, outside of the mainstream. I'm sorry I can't be of much help to you there because I don't have any experience with that. I follow the science and look for studies with hard, empirical evidence to back them up, and I try to avoid offers of "miracle cures" "vitamin therapies" "alternative therapies," etc., when it comes to treating the cancer specifically. However, I do use what some consider "alternative medicine" to deal with symptoms from side-effects. I use cannabis and acupuncture to relieve neuropathy in my hands and feet and brain fog in my head, and I practice yoga and get massages to deal with lymphatic swelling throughout my body. I can say these "alternative" practices have really helped with symptom relief.