Deciding whether to continue with chemotherapy and immunotherapy
I have stage four colo-rectal cancer. It's not curable. It's not particularly treatable. I'm getting palliative care, but I'm not yet end of life. They're not offering surgery or radiotherapy (yet, that may change). They are giving me chemotherapy (capecitabine and irinotecan) and immunotherapy (cetuximab).
Prognosis is difficult, but if everything goes well I have about 18 months.
I've had 6 cycles of treatment. I had a re-staging PET CT scan and the results were very good.
But, here's the thing: chemo & immuno therapy suck. I don't just mean "I feel a bit bad sometimes", I mean "I feel awful most of the time."
We've just about got nausea under control, but those meds cause constipation and that's causing problems with my stoma. And because the nausea meds are only used for the first week it means the second week I have problems with fast output, and that's causing other problems with my stoma. My stoma team and my oncology team are not particularly joined up. In theory I can build in laxido for the first week and loperamide for the second week but that's complicated because side effects are so variable. And that's just stoma output -- there's a bunch of other stuff around pain, fatigue, skin toxicity (I'm not allowed in the sun, even on bright but overcast days. I have to use three different creams, but not too much of any of them, and they're not compatible with each other), loss of appetite, etc.
One example of how healthcare isn't joined up and I'm getting conflicting advice (there are lots of these): My stoma team want me to wear a hernia support belt to prevent my hernia getting worse, and to help my stoma work properly. But this is a tight broad elastic belt going round my lower abdomen, right where my diaphragm is, and so it makes it harder for me to breath. My physio doesn't want me to wear the belt because it's interfering with fatigue treatment (which is "do more stuff, but do it slowly, and build in breaks, and FOCUS ON YOUR BREATHING"). My oncology team have no opinion and are leaving it to the other teams.
I know some people just want more life, and they don't care about side effects. "Do anything you can to give me more life". But that's not me. I'd much rather have 3 months of mostly feeling okay and then a month of active death over a year of mostly feeling fucking lousy and then a few months of active death.
I don't know how to talk to my family about this. I have spoken to my care team and they're giving me all the options - (1) continue chemo and immuno therapy on 2 week cycles until I die or until it stops working, and try to buidl in better support meds. (2) continue chemo & immuno on 2 week cycles, but build in breaks (3) stop chemo & immuno and focus on pain relief.
Some tricky decisions to be made.
My wife and I have seen friends and family (and in my case, patients) go through much of the same that you are now. We have an understanding that above all quality of life, not length, is the most important thing to us. In your case, we would have already chosen option 3.
I would ensure all of my affairs are in order to make sure my wife has as easy a time after I'm gone, goodbyes said to those that need to hear them, etc. while on therapy, then go to option 3; as to me/us a few months of relatively easy life is better than 18 months of suffering.
Sorry to hear you're going through this DanBC, going to miss you around here.
Quality of life matters far more than length to me too. But quality of life can mean wildly different things to different people, everyone's endurance and tolerance for suffering varies, and there are all sorts of deeply personal/subjective factors that go into making end-of-life decisions like this. So IMO no matter which side a person lands on after making their decision, everyone should always just try their best to respect that person's decision, and support them as best they can in the time they have left, even if they may disagree with their decision.
Ditto. We've had some great conversations over the years, @DanBC, and we also seem to strongly agree on a lot of fundamental issues (politics, healthcare, LGBT+ rights, etc), so I am definitely going to miss you, miss seeing your comments around here, and miss our conversations. :(
Absolutely and I tried to word my response as a much of a this-is-what-I-would-do and not a this-is-what-you-should-do manner as possible. For us, easing the suffering of the one going through EOL is more important than the loss the survivor will have to endure as the dying individual has a limited amount of time with no chance of recovery, while the survivor has a comparatively infinite amount of time to heal. For some, every extra moment they can spend with their family/friends/children is worth it and I can absolutely understand that sentiment.
Whatever someone chooses is the right choice so long as it's what they wanted.
Oh, sorry I should have been more clear. I didn't read your comment in a 'this-is-what-you-should-do' way, and so my comment was not meant as a criticism of yours. I was just adding a bit of my own extra thoughts on the issue.
No worries, I didn't take it as criticism or that you meant/read it as such. Just agreeing that there's no wrong answer and clarifying that I wasn't trying to suggest one way or the other.
Just sharing thoughts and experiences is all.
Same here. My wife and I watched a close (50 yr old) family friend continue treatment at the behest of their elderly parents.
They spent their last few months in chronic pain and practically bedridden, instead of cruising around with their biker friends for one last roadtrip. The sadness in their eyes was palpable.
That was the moment we both resolved to have minimal treatment if its determined to be terminal, and focus on enjoying the last time best we can.
A very tough spot.
Do you have an idea of how quickly death would follow if you stopped treatments and received only palliative care? I ask because my grandfather died of colon cancer, refusing all treatment except pain medication. It didn't go fast, and it was very difficult for him symptom-wise. From the outside, it's a question of whether the untreated phase is truly more comfortable than treated. That and just how ready you are to go--and I mean both practically and interpersonally.
Is there a palliative care person or hospice counselor you could talk to about what they have learned having worked with many people in your situation? That might help get you the right information.
We will miss you. I admire the dignity you are keeping in this situation, though I'm sure it feels like indignity being heaped on you at times.
I don't know, and it's the unknowns that make things really tricky!
I hope this doesn't come across as morbid, but is there anything that you want to try to be around for? Maybe a summer family reunion, a movie or game or concert you're excited for, or what have you. Maybe being healthy enough to see the upcoming eclipse if it's within travel range for you if you're in the Americas.
May be something to think about when deciding your path forward.
Regardless, thank you for sharing this, I feel this kind of thing is important to talk about and you're brave for standing up and sharing it.
I wish you (and everyone else reading this) all the happiness, satisfaction, and enjoyment that you can get with your time here.
❤️
You might want to talk with your doctor about whether there's been any good studies on QALY (quality-adjusted life years) for the various treatment options that have been presented to you. This is a way to more objectively quantify things like pain and nausea and other nuisances that can make living life a lot less bearable. This might help you come to a decision for what feels like the right path for you.
With regards to talking about it with your loved ones, I think the best you can do is to explain whatever your reasoning is for whatever choice you make and to give them space to grieve. Hopefully they have enough emotional intelligence to realize that it's your decision and that you're doing your best to keep everyone you love involved but ultimately if they have issues with your decision they shouldn't be taking it out on you.
This is an extremely difficult space to be in. The fact that you're reaching out to others on how to proceed shows that you're a really compassionate and caring person and I really hope the people that you love recognize this. I wish you the best of luck on your upcoming trials. 💜
I'm so sorry to hear about this. Have watched family members suffer from prolonged terminal illness and if they had chosen to be more comfortable for a few months rather than suffering for longer, I would've totally understood and it would've been my choice for them as well if it were up to me. I hope you get to choose the best for yourself, wishing you and your loved ones well.
I can't give you any medical or practical advice. I only have some thoughts that you have probably already thought yourself, and feelings you have probably also felt.
I've talked before about my childhood trauma and the depression and anguish that stemmed from it. What I don't think I've ever talked about here is the physical effects it had on me. There were times I felt it as acute paroxysmal pain throughout my whole body, anxiety that got so bad that I got rashes all over my body, and a constant, day-after-day loss of strength that made my body feel like I was carrying around a 100 pound weight and made it difficult to breathe. The pain I felt then is in no way equivalent to the kind of pain you're feeling now, but I wanted you to know that I understand how you feel because those pains over time had a synergistic effect that really degraded my will to live.
You didn't mention depression, though it would not surprise me to hear if you were. You're going through some tough shit and it's not getting any better. When I was in my worst times, I would get people telling me to "choose life", but people don't understand that when you're at this point you're having trouble figuring out what that actually means. After all, a life of misery is no life at all. So with that being said, my advice to you is to be as selfish as you possibly can. Try not to consider other people's feelings over your own. You're the one with cancer. You have a limited budget to spend on the rest of your life and the only one who should be responsible for how it gets spent is you.
I know this doesn't answer any of your questions. Nobody can, except for you. I just hope that these thoughts help you get to an answer you can be comfortable with. I don't know you all that well, but please believe me when I say that hearing this from you is causing my heart to ache, and that you will be missed when you are gone. I personally want you to spend your time pursuing whatever things that you find the most fulfilling, even if that means leaving all of us here behind prematurely.
I'm sorry to hear that Dan. Everything about cancer fucking sucks. The treatment sucks. Not only does it physically suck, you're also stuck on a chemo leash and can't go far (not like you can get insurance anyways). I can empathize with anyone that doesn't want to live like that.
We thought my mom beat cancer, but it came back this year. Her diagnosis is also terminal. She's in the "Do anything you can to give me more life" camp. She feels like she has 'unfinished business' with her grandkids and wants as much time with them as she can get. Which I understand, and selfishly I'm glad for. But I would 100% have been supportive of any decision she made and I would hope that's all your family wants as well -- we're just trying to be there for the people we care about for as long as we have them. My mom's not palliative yet either, so I know the hardest part of this is still yet to come.
I remember from previous threads that you're a father and my heart is breaking for your family. How is(are) your kid(s) doing? Do they have lots of videos of you? One thing my friends who have lost parents have told me is that to make sure I have lots of videos with my mom because it's apparently easy to forget someone's voice. One silver lining in a terminal disease is that there is a lot of time for goodbyes. It's not much, but it's what we have. <3
Good luck, hoping the rest of your journey is spent with people you care about in a fashion you care for.
Dan, the only part I can empathise with really is having two medical teams fight over my care and not agree, with my primary physician saying 'well, let them sort it out.'
There was a crucial difference in my case, though. It was being paid for by the state, and their end goal was to get me out of hospital, and back to work. If not in the job I was previously doing (active), then in an office. They were fighting to try and extract labour from me. It made me feel bad. I had no agency there. I felt helpless.
I am really hoping you have agency in your situation. I am hoping you aren't beholden by medical debt or the pressures of working an extra six months to provide to your family.
I am a simple person, and I often think about problems in terms of figuring out what the centre of gravity is. A problem's, if I want to 'attack' it, or my own, if I want to 'defend' some part of myself - making decisions about my heath is often about what is most important to defend, what is 'the hub of all power and movement, on which everything depends.'
From reading your writing, it sounds like it is very much quality of life and having agency in your death. From reading only the limited words you have here, that sounds like your centre of gravity. Defending that sounds very much like you have a guiding strategy for how you want to approach this.
I have a feeling from observing family members in similar situations you might be overwhelmed by decision making with a lot of uncertainty. This is just presented as a suggestion, not as a dictation, but I have always found the concept of the OODA Loop very helpful when I need to make decisions in uncertainty and take action to advocate for what I want and need.
I might be an indoctrinated hammer, and I might approach every problem like a nail, but using this framework has worked very well for me in life: to keep moving one has so many fast decisions to make without enough information and time. Here's some more info if you are interested.
Lastly, I will miss you greatly. I have enjoyed reading what you have to write and though I am neither friend nor family, having strangers miss you because of your positive qualities I think is a mark of a well-lived life. I don't know what happens when we die, but I know that people will miss you. If there is something after this, I hope to see you there.
/u/DanBC, I'm sorry you're at such a painful place in your life. It's not just the physical suffering, but facing so many healthcare frustrations and uncertainties sounds unbearable. I won't say I miss your graciousness and wisdom, because you're still here until you're not.
I hope it might help you to understand that we're awash in mythologies about what medicine can and can't do. There's a lot of "hold on, new medical miracles are happening everyday". There's the myth of personal courage in "fighting" cancer. I've heard over and over again, "I'm just holding on to see {insert someone else's life event here}".
Above all else, reject myths. There is no evidence that courage ever abated a terminal condition. There is no glory or honor in enduring extended suffering to delay others' grief. Ask your doctors and caregivers to tell you what they would personally do in your situation. They're not likely to say they'd hold on for the next drug discovery. You're the expert in how you feel and how you'd prefer to spend your days. With all the honesty you can muster, talk with your family about what you feel is the right decision.
If you fear burdening your family and friends with your choice, I can speak from experience in saying that it's far better to be brutally blunt than to leave those you care about watching your condition diverge from what you say.
Since you must depart, go in peace knowing that you've had the courage to speak truthfully, spend your time as you've wished to, and love with all the passion you can muster.
This is an incredibly tough situation. As a doctor, I would recommend talking to your palliative care doctor about this as soon as you can. If they are a certified palliative care MD, your quality of life is their specialty. As far as I'm concerned (and this is quite a bit reductionist) oncologists seem to be so focused on the extending lifespan number they will throw on incredibly toxic therapies willy nilly. To be clear, I suspect your oncologist is a great doctor and doing the right things, but they simply aren't trained nearly as much as your palliative care doc is in quality of life.
I am coming around to accepting that option 3 is probably the best option most of the time for people with terminal disease. Maybe the medical community will naturally cycle between not treating, seeing many patients succumb to disease quickly, then back to aggressively treating people in your position.
I would send a message to your palliative care doc today. Don't wait, you have your whole life ahead of you and it would be best to have it be as comfortable as possible. The palliative care doctor's entire training revolves around how to convince the other doctors that your quality of life is the most important thing.
Edit: spelling errors (sorry, sent from my phone)
Damn, this is heavy.
I have no advice or guidance for you but I wish you the best and least painful path forward that makes you the most happy, and that gives you the ability to spend your time as you would like to on your own terms.