How is your stage 4 lung cancer going?
February 4, 2018 8:55 AM Subscribe
Do you or a loved one have stage 4 lung cancer? Tell me about your journey.
How are things going? When did you get your diagnosis and what treatments are you or your loved one undergoing? What did they tell you about your prognosis? What are you doing/reading to help you cope with knowing about you or your loved one's sickness?
What do you wish you'd known when you first got the diagnosis? What mantras help you get through the day? My mom just got diagnosed last week and I'm grappling.
How are things going? When did you get your diagnosis and what treatments are you or your loved one undergoing? What did they tell you about your prognosis? What are you doing/reading to help you cope with knowing about you or your loved one's sickness?
What do you wish you'd known when you first got the diagnosis? What mantras help you get through the day? My mom just got diagnosed last week and I'm grappling.
My mother is a nearly 5-year survivor of a stage 4 lung cancer diagnosis.
My heart goes out to you. It's a devastating diagnosis, and it's a big shock to take in initially, and I believe you actually start the grieving process at the moment of diagnosis. Take deep breaths. Find support where you can. Plan for the worst, and hope for the best.
The first thing to know is that every individual, and every cancer, is different. What goes for one person will not be what goes for another. Lung cancer is a very broad category. Don't believe everything you read that generalises about the disease. There have been dramatic changes in treatment options in the last ten years, and the literature still hasn't caught up. Many things you will read online will not give you an accurate picture of today. Some things to find out now: is it small-cell or non-small-cell? Will she be tested for any mutations? (She should, as there are very targeted therapies that work for certain mutations.)
I find the Inspire lung cancer survivors site very useful for gathering anecdotal information about experiences other people are having. Warning: it can be pretty confronting at first, as many of the stories reveal the pain, loss and confusion experienced by patients and their caregivers. I found this site particularly useful in helping to understand what to expect with different treatments and symptoms, figure out what questions we should be asking my mother's doctors, and just generally getting better-educated about the disease.
When my mother was first diagnosed, her oncologist told her 6-12 months survival was likely. Because of the stage 4 diagnosis, she was eligible to join a clinical trial for Nivolumab. She chose to do this, but had to drop out after a couple of infusions, because of side effects. Nonetheless, a couple months later, the tumors had shrunk a bit, and 6 months later, shrunk still more. She went about 18 months with no progression, and then when the tumors started to grow again, had a round of traditional chemo. This again hit the pause button on the cancer, and she went another year without progression. Repeat again, but the second time back to the nivolumab + radiation.
Every three months is a scan where we all hold our breath about whether there will be any progression. That never really gets any easier. Life has carried on, pretty normally, all things considered, but the side effects of various treatments have accumulated over time. It wouldn't surprise me at this point if she died from one of the side effects, rather than the cancer itself.
I don't have any mantras, but I know that the first 3 months after diagnosis was very hard. I felt like my adrenaline was pumping all the time, and I had a lot of trouble sleeping. Once we started treatment, things at least started to feel a little more in control. My mother went through a period of getting her affairs in order, making sure wills and living wills were in place, and powers of attorney. She started to clear out her house to get ready for the inevitable. She has, in the process, changed oncologists 3 times. The first time was involuntary, due to a doctor leaving the practice. The other times were out of frustration at attitudes and treatment options. You do really have to advocate for yourself.
One thing worth noting is that my coping mechanisms are different from my mother's. I like to know as much as I can, read and research everything as much as possible (helps me feel more in control?), whereas my mother prefers to know a lot less.
Feel free to memail me if you have specific questions.
posted by amusebuche at 2:42 PM on February 4, 2018 [7 favorites]
My heart goes out to you. It's a devastating diagnosis, and it's a big shock to take in initially, and I believe you actually start the grieving process at the moment of diagnosis. Take deep breaths. Find support where you can. Plan for the worst, and hope for the best.
The first thing to know is that every individual, and every cancer, is different. What goes for one person will not be what goes for another. Lung cancer is a very broad category. Don't believe everything you read that generalises about the disease. There have been dramatic changes in treatment options in the last ten years, and the literature still hasn't caught up. Many things you will read online will not give you an accurate picture of today. Some things to find out now: is it small-cell or non-small-cell? Will she be tested for any mutations? (She should, as there are very targeted therapies that work for certain mutations.)
I find the Inspire lung cancer survivors site very useful for gathering anecdotal information about experiences other people are having. Warning: it can be pretty confronting at first, as many of the stories reveal the pain, loss and confusion experienced by patients and their caregivers. I found this site particularly useful in helping to understand what to expect with different treatments and symptoms, figure out what questions we should be asking my mother's doctors, and just generally getting better-educated about the disease.
When my mother was first diagnosed, her oncologist told her 6-12 months survival was likely. Because of the stage 4 diagnosis, she was eligible to join a clinical trial for Nivolumab. She chose to do this, but had to drop out after a couple of infusions, because of side effects. Nonetheless, a couple months later, the tumors had shrunk a bit, and 6 months later, shrunk still more. She went about 18 months with no progression, and then when the tumors started to grow again, had a round of traditional chemo. This again hit the pause button on the cancer, and she went another year without progression. Repeat again, but the second time back to the nivolumab + radiation.
Every three months is a scan where we all hold our breath about whether there will be any progression. That never really gets any easier. Life has carried on, pretty normally, all things considered, but the side effects of various treatments have accumulated over time. It wouldn't surprise me at this point if she died from one of the side effects, rather than the cancer itself.
I don't have any mantras, but I know that the first 3 months after diagnosis was very hard. I felt like my adrenaline was pumping all the time, and I had a lot of trouble sleeping. Once we started treatment, things at least started to feel a little more in control. My mother went through a period of getting her affairs in order, making sure wills and living wills were in place, and powers of attorney. She started to clear out her house to get ready for the inevitable. She has, in the process, changed oncologists 3 times. The first time was involuntary, due to a doctor leaving the practice. The other times were out of frustration at attitudes and treatment options. You do really have to advocate for yourself.
One thing worth noting is that my coping mechanisms are different from my mother's. I like to know as much as I can, read and research everything as much as possible (helps me feel more in control?), whereas my mother prefers to know a lot less.
Feel free to memail me if you have specific questions.
posted by amusebuche at 2:42 PM on February 4, 2018 [7 favorites]
My father was diagnosed with Mesothelioma two years ago, and he died nine months later. He worked himself through college on the railroad. He refurbished box cars. Dirty, dangerous work. They burned the old asbestos brake pads in the rail yard.
Dad fought hard. He did chemo, surgery, radiation, and experimental forms of medication. He traveled to MD Anderson in Houston on a monthly basis.
In the end, nothing worked. The surgery was incredibly painful, and the radiation reduced him to nothing. (The chemo was okay, I guess.)
I guess I wished Dad had fought a little less hard. That’s terrible to say, but true. I wished he would have focused on pain management. He suffered, a lot, seeking a cure.
posted by Don.Kinsayder at 2:53 PM on February 4, 2018 [5 favorites]
Dad fought hard. He did chemo, surgery, radiation, and experimental forms of medication. He traveled to MD Anderson in Houston on a monthly basis.
In the end, nothing worked. The surgery was incredibly painful, and the radiation reduced him to nothing. (The chemo was okay, I guess.)
I guess I wished Dad had fought a little less hard. That’s terrible to say, but true. I wished he would have focused on pain management. He suffered, a lot, seeking a cure.
posted by Don.Kinsayder at 2:53 PM on February 4, 2018 [5 favorites]
I am sorry that your mother and you and your family are going through this.
My mother lived about 12 months after her diagnosis. She started heavy chemo immediately, and to be honest, while I think it bought us all some time to move beyond shock and into acceptance, it was a rough year for her and imo she suffered a lot. She was hospitalized 8 times in that year. She became addicted to morphine. She wasted away physically, which was very tough for her to grasp. She reached a goal that she had set her mind to reach, but immediately after that date she stopped eating, and passed a couple of weeks later.
My mother's journey in life was such that she'd already been through quite a lot already. She wasn't a quitter, but I think on top of everything else she was a bit defeated to get her diagnosis.
I think she chose to do chemo because she wanted everyone to think she was a fighter, but deep down she already didn't have much fight left in her. I understand why she chose the chemo route. At that point in time I probably would have been angry if she hadn't. With the benefit of time and life experience, I believe I would have forgiven her if she'd forgone treatment and let nature take it's course.
The best thing you can do is listen to your mother, and honor whatever she decides to do.
Again, I'm sorry.
posted by vignettist at 3:28 PM on February 4, 2018 [5 favorites]
My mother lived about 12 months after her diagnosis. She started heavy chemo immediately, and to be honest, while I think it bought us all some time to move beyond shock and into acceptance, it was a rough year for her and imo she suffered a lot. She was hospitalized 8 times in that year. She became addicted to morphine. She wasted away physically, which was very tough for her to grasp. She reached a goal that she had set her mind to reach, but immediately after that date she stopped eating, and passed a couple of weeks later.
My mother's journey in life was such that she'd already been through quite a lot already. She wasn't a quitter, but I think on top of everything else she was a bit defeated to get her diagnosis.
I think she chose to do chemo because she wanted everyone to think she was a fighter, but deep down she already didn't have much fight left in her. I understand why she chose the chemo route. At that point in time I probably would have been angry if she hadn't. With the benefit of time and life experience, I believe I would have forgiven her if she'd forgone treatment and let nature take it's course.
The best thing you can do is listen to your mother, and honor whatever she decides to do.
Again, I'm sorry.
posted by vignettist at 3:28 PM on February 4, 2018 [5 favorites]
amusebuche is my partner and she's given a great overview of her and my M-I-L's experience.
One thing I noticed was that people do different things to get control back into their lives. My partner did a lot of research and understood many of the facets of the problem and opportunities. This worked well.
Her mother began a process of giving away a bunch of stuff. This really impacted her kids, as it looked and felt like she had given up. But from her mother's point of view (and I could see it too), it was her way of having some control.
I bring this up because someone with a terminal diagnosis may react in behaviours that seem rash or out of sorts. I believe it's important to give them some leeway and encourage them to have something in their world that is in their control. Be patient and understanding while they search for a way to get some power back into their lives.
posted by qwip at 8:23 PM on February 4, 2018 [5 favorites]
One thing I noticed was that people do different things to get control back into their lives. My partner did a lot of research and understood many of the facets of the problem and opportunities. This worked well.
Her mother began a process of giving away a bunch of stuff. This really impacted her kids, as it looked and felt like she had given up. But from her mother's point of view (and I could see it too), it was her way of having some control.
I bring this up because someone with a terminal diagnosis may react in behaviours that seem rash or out of sorts. I believe it's important to give them some leeway and encourage them to have something in their world that is in their control. Be patient and understanding while they search for a way to get some power back into their lives.
posted by qwip at 8:23 PM on February 4, 2018 [5 favorites]
My mom was a super outsider in this regard. She lived about 12 years after her diagnosis (her stage 4 diagnosis) after they found a spot during a random scan keeping an eye on her DCIS (ductal carcinoma in situ, basically a slow-to-no growing breast cancer). So! She had a lung resection early on and then the doc said "Hooray we got it" and then it turned out they didn't get it after all. Her quality of life was mostly good. She was on Tarceva most of the time and they added a few more things on and off when it seems to be spreading or not spreading. She had radiation after the surgery (so losing hair, feeling awful, the whole dea) but then not again afterwards. She sometimes had chemo if her cancer counts were up. Your whole life revolves around PET scans and what they tell you.
Other than some neuropathy in her feet (and attendant unsteadiness) and some digestive issues, she had a pretty high quality of life right up until the last six months. When things progressed it was quick. She went from "Hmmm your cancer counts are up and it's spreading" to "This medication isn't working any more" (a day we knew would come) to her decision to stop treatment and she died maybe a month later? She had the death she wanted and we were happy we could help her with that.
My mom really wasn't into all the pink ribbon crap but she was really into having the fact that she had cancer basically be the trump card for any disagrement she'd get into. She maybe had some anxiety and possibly some untreated mental health issues. So it was a SLOG of a twelve years where she basically held "I could die any day" over our heads when most of the time she was living with a terminal disease but not very sick, if that makes sense? I am only mentioning this because the disease is really only part of it. How the person decides to be as a patient is really a lot of it. My mom finally decided to retire (which was great) and really enjoy her life once she realized it would be shorter. She made all her final arrangements and made sure we knew them.
I am very black and white in my thinking (she's going to die soon, she's not going to die now, I have some choices I can make, here is what I am thinking) and I had very little time for other people's cancer talk. Many people are not like this and they like talking about it and sharing (horror, positive, happy, sad, etc) stories. It's worth thinking about what sort of person you are so you can set up your own boundaries around how you decide to deal with this stuff. I have a sibling I am already pretty close with and we grew even closer dealing with my mom and her twelve years of having stage four lung cancer. I wish you luck going through this.
posted by jessamyn at 8:31 PM on February 4, 2018 [6 favorites]
Other than some neuropathy in her feet (and attendant unsteadiness) and some digestive issues, she had a pretty high quality of life right up until the last six months. When things progressed it was quick. She went from "Hmmm your cancer counts are up and it's spreading" to "This medication isn't working any more" (a day we knew would come) to her decision to stop treatment and she died maybe a month later? She had the death she wanted and we were happy we could help her with that.
My mom really wasn't into all the pink ribbon crap but she was really into having the fact that she had cancer basically be the trump card for any disagrement she'd get into. She maybe had some anxiety and possibly some untreated mental health issues. So it was a SLOG of a twelve years where she basically held "I could die any day" over our heads when most of the time she was living with a terminal disease but not very sick, if that makes sense? I am only mentioning this because the disease is really only part of it. How the person decides to be as a patient is really a lot of it. My mom finally decided to retire (which was great) and really enjoy her life once she realized it would be shorter. She made all her final arrangements and made sure we knew them.
I am very black and white in my thinking (she's going to die soon, she's not going to die now, I have some choices I can make, here is what I am thinking) and I had very little time for other people's cancer talk. Many people are not like this and they like talking about it and sharing (horror, positive, happy, sad, etc) stories. It's worth thinking about what sort of person you are so you can set up your own boundaries around how you decide to deal with this stuff. I have a sibling I am already pretty close with and we grew even closer dealing with my mom and her twelve years of having stage four lung cancer. I wish you luck going through this.
posted by jessamyn at 8:31 PM on February 4, 2018 [6 favorites]
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One thing that I learned was that life expectancy is at best a guess. She never asked her first doctor, but when she was in the end stages and had switched doctors (due to a move), he said that he was surprised she survived longer than 4-6 months.
I’m sorry that you’re both having to go through this. And feel free to Memail me if you want someone to talk with.
posted by statsgirl at 12:04 PM on February 4, 2018 [3 favorites]