Duration of life after discontinuing chemotherapy
February 13, 2018 7:01 AM   Subscribe

My mom has been fighting cancer for years and has just discontinued treatment. She is 75 years old and in excellent health except for the cancer. Any thoughts on the time-line between now and her death?

My mother was diagnosed with ovarian cancer in 2012 and kept it at bay successfully for many years. But the meds have stopped working and she now has metastases to the liver mainly, but essentially all over. Her (truly wonderful) oncologist has told her there's nothing more that they can do and that she'll just slowly get weaker and "fade away".

My mom deliberately did not ask for a time-line because she feels pretty good right now and would like to focus on the present. She's handling it incredibly well and is being very proactive about planning for her death which I am grateful for.

So my question is basically how long do people generally stay alive in this kind of situation, and what is the typical progression of "fading away". She doesn't want to have a time-line but it would be helpful to me to know if we're talking about months or years. I'm going to call her oncologist tomorrow to get his take on the situation, but I know there's a lot of variability with these things so I'd love to hear anecdotes that might help me build a sense of what to expect.
posted by anonymous to Health & Fitness (13 answers total) 4 users marked this as a favorite
(Background: my bestie is 5 years into ovarian cancer, not in remission.) Right now while she's feeling pretty good, try to pin down her oncologist on how to manage her pain going forward. This is absolutely essential and you will not believe how much our "war on opiods" is affecting people with serious/terminal illness. If she doesn't already have a pain specialist, she may need one, and you should get that moving right now so she's got an established relationship when the time comes that she'll be needing regular very high doses of very strong drugs.

I can't emphasize this too much -- it's sad enough that she is on the path toward death right now. And to compound that with high levels of pain is tragic.
posted by BlahLaLa at 7:24 AM on February 13, 2018 [20 favorites]

First, I'm so sorry your mother (and you) are going through this.

I suspect It's going to be very difficult for anyone to estimate how long your mother has. As you say, there's a lot of variability.

Five years after her initial diagnosis, a dear friend passed away less than 2 months after her chemo treatment was stopped. She was half your mom's age. But she'd also been through multiple surgeries and dealt with a lot of complications leading up to that point. In addition, she had not been initially diagnosed until Stage IV, which greatly affects outcomes.

At Stage IV, where the cancer has spread to her liver and other locations, in your place, I would move forward from the assumption she had only months, not years. Personally, this would help me keep a realistic expectation of what's to come. But I don't know how likely that assumption is. Her oncologist can help you here.
One more thing.... I second BlahLaLa's comment. If you haven't already, please speak with the oncologist about your mom's future pain management so you have a plan and drugs in place when the time comes. The last thing you want is to have her suffer needlessly.
posted by zarq at 7:29 AM on February 13, 2018 [1 favorite]

My mom went through this last year and died in July. Timelines are pretty difficult, some of it depends on where her cancer gets to, etc. For my mom the period between "We don't think the meds are working anymore" and when the cancer basically disabled her was a few months and from there things progressed quickly. Here are things that were helpful for us....

- pain management, obviously
- in line with that, making a few early decisions like "die at home or go to hospice?" I don't know if you are in the US but there are some pretty good palliative care and hospice options including a lot of stuff they can do for people in their homes (including stuff like helping with hygiene, delivering a hospital bed, etc)
- obviously the usual will/healthcare proxy/power of attorney - my mom had a "do not transport" option which meant when things very suddenly "took a turn" and we called the ambulance, they looked at her records and were like "We can make her comfortable but we're not taking her with us because that's not what she wants" she can make other wishes known like whether she wants aggressive pain management, IV fluids or not, etc.
- in-home care sorts of things. For us to sleep at night (we were all at her home for her last few weeks) it was useful to have someone else who was there and awake in case she needed the bathroom, pain management etc. If you have money for stuff like this (insurance doesn't usually cover it) it can be a blessing so you can spend time with your mom well-rested. If not, maybe working in shifts with other people if you have that options.

For my mom, fading away meant she just dropped weight sort of quickly but was mostly doing okay. She lost some movement of her mouth/jaw which made eating a little difficult and eventually, in the last few weeks, impossible. She had trouble getting out of bed just because of weakness (which we suspect was mainly nutrition based but that was her choice). One day she woke up and just wasn't "all there" didn't really recognize us, was a little bewildered. From that point she faded in and out of alertness and was easily tired for another few weeks. She went to hospice for her last week (her choice) and was basically alert but not very communicative for her last few days and sort of alarmingly thin.

Hospice was sort of great in that we could be with her as much as we wanted (literally round the clock if we wished) but did not have to worry about her as her caretakers. They also told us what to expect in terms of the progression in her last few days. They've been through this so many times, they basically know when to call you and say "You might want to be here" and were also helpful in helping resolve some family issues that came up.

The hardest challenge for my sister and I was dealing with a lot of other people's raw emotions around this time. Her longtime friends, her other family, etc. There's a lot of people management you have to do and not everyone has read "Comfort in, dump out" and is appropriate. Some people wanted to see her when she was in no shape to be receiving visitors. Some people wanted to tell us things about her we didn't want to know.I was so lucky to have a sister who is an ally and a very good friend, maintaining your own support networks is so important, it's easy to just lose yourself in someone else's care.

And lastly, the dying often pull away from their life and get more introspective. This is normal and it can seem weird from the outside. She may stop caring about her pets, plants, house, friends, whatever. Or she may not. My mother became somewhat concerned about her cat (which had a home planned and it was all going to be fine) Try to follow her lead on this stuff but be ready for her to just ... stop doing email or watching TV or whatever the thing is. It can be confusing and challenging to deal with.

I wish you strength getting through this, it's hard but ultimately an important part of life. Feel free to email if you want to talk more.
posted by jessamyn at 7:40 AM on February 13, 2018 [17 favorites]

As others said, it will vary. For my mom (who had stage 4 lung cancer), once she stopped chemo she was pretty active for about one to two months. Then she started to decline. She was still moderately active for a little over a month, and then the last two weeks before she died was very tired/disinterested.

If you can connect yourselves with palliative care, they were very helpful.
posted by statsgirl at 7:44 AM on February 13, 2018

I'm so sorry that your mom is going through this. The oncologist hopefully will give you more of an idea of how much it's possible to know, at least. When my mother was dying of cancer, we had a hospice nurse who came to the house, and she was our best source of ongoing information.

From what doctors and nurses have told me, there's a lot of variation in how "proactive" (to borrow a phrase from a nurse) your medical program is with painkillers. My mom's illness was before the recent publicity about the opioid crisis, but what I read now suggests that some professionals, at least, continue to regard terminal illness as a whole special category in regards to pain medicine and they will tell patients to take as much as they need, to the point where it may in fact hasten the end of their life.

My mom ultimately "faded way" much like others have described above. She got really tired and expressed that she felt she was detaching from life (or similar words). It seemed like she was very consciously using that time to wrap things up, to say things she needed to say and so on. We had experiences like jessamyn describes, of having to run interference with people. And we didn't always treat each other well. (At one point I suggested to my father that we all give each other a blanket pass for dumb things we did during that period.) But having that time together was really valuable for us, and I hope it will be for you, too.
posted by BibiRose at 8:05 AM on February 13, 2018

My dad died of metastatic prostate cancer. He went from doing ok to dead in a month. We had hospice at Home and a companion (who was an angel for all of us) for overnight care so my mom could get some rest. He was in a lot of pain at the end. He lost his appetite and was generally not himself when he started to decline. When he was slipping away , the hospice nurse came and someone was there until he passed. Before that the nurse would come a few times a week.

I’m really sorry that you are facing this and I wish you, and her, peace.
posted by FergieBelle at 9:10 AM on February 13, 2018

I'm so sorry that you and your mom are going through this.

I agree on seeking out hospice care for the palliative aspects - it often prolongs life and makes it more enjoyable since they will help her focus on what's important to her and strategies to maximize her ability to do those things. And, a good hospice will support her family as well. Hospice is too often thought of as end of life care, but it's really quality of life care. Generally you will find better care at nonprofits than for profits.

If she wants, she can look into clinical trials. There is some truly astounding work being done at major research centers.

Consider all options if she beings to have pain, and talk to her physicians about this. Make sure her wishes are clear.
posted by OneSmartMonkey at 9:21 AM on February 13, 2018 [1 favorite]

Something I know my father now regrets after chosing palliative care/hospice upon being diagnosed with stage IV bladder cancer with metastasis to the liver is that he didn't immediately do the thing he loved the most - travel. He booked a trip for about 6 weeks after he got home, but by then he was too weak and exhausted to leave the house for all but the shortest excursions. He actually, amazingly, doesn't have pain, but he just has no energy and had lost his appetite and weight. He'd always been so vigorous and never looked his age, but all of the sudden he looked old, old, old. It really progressed astonishingly quickly in terms of his energy. So I'd say if your mom has any last things she wants to do, just do them. My dad is still living, but the end is not far away.

And my mom had ovarian cancer and died about a decade ago. She didn't die of cancer - she had an aortic aneurysm that ruptured. So you really never know what will happen.

I'm so sorry you and she are facing this! Sending love and support your way.
posted by citygirl at 1:06 PM on February 13, 2018 [1 favorite]

My 91-year-old grandmother was diagnosed with Stage IV metastatic breast cancer almost two years ago, and chose not to do chemotherapy. She is diabetic. She is on very strong pain management drugs, and the cancer has metastasized to her lymph nodes.

I am grateful and amazed that she is still alive. She is in South Asia where medical care is excellent, but sometimes I can't help but wonder if her diagnosis was wrong, because (and this sounds horrible to say but is true) she should be dead by now. She is alert, but very very weak and feeble. Her short term memory is shot, and she gets frequently disoriented, but she is stable.

It's really hard to tell how much time your mother has, but like almost everyone here has said, once the deterioration in physical ability begins, the end comes fast. Except, again, my grandmother has been hanging on for at least ten months longer than her oncologist gave her. On her bad days, she asks for my mom to sit with her and talk to her about me and my son. It's heartbreaking for her, but also physically and emotionally exhausting for my mom. They have a paid helper and a day nurse come in every day, and this is a lifesaver for my mom. I'm so sorry you're going through this.
posted by Everydayville at 3:56 PM on February 13, 2018

At some point things will change very quickly, in a way that is impossible to predict accurately looking forward from a time when she's still completely herself. it could be years away but will seem sooner and faster than you think. Hospice nurses can give you guesses in confidence, so she doesn't have to hear, but they will be guesses.

there is nothing really to gain by dwelling on this, for either you or her, but it's important to know. because: if you have to have specific conversations or put specific things in order, do it now. I don't mean just legal stuff; anything and everything. don't say to yourself, well, it won't get bad overnight so waiting until next week can't matter. things start off gradually but do not stay that way and you can't predict it. eventually, things will change overnight. just do not wait, if there are any conversations you've been waiting on.

I should also say, I found the end-of-life hospice pamphlet deeply distressing and wholly unhelpful; it is true what it says, that people close to death can suddenly seem to be on their way up again, full of energy, just before the end. but it is also true that people go up and down many, many times as their illness progresses, and it serves no purpose to frighten yourself every time your mother's suddenly in a good mood or feels ok. try to enjoy what is possible to enjoy.

and advocate for her when she's in pain. before that, if you can. better to have meds she doesn't need than need and not have them.
posted by queenofbithynia at 6:11 PM on February 13, 2018 [1 favorite]

My grandparents’ cancer deaths were the long, slow kind, and the end still seemed sudden. My mom was the other kind, and the one I saw in the most detail.

Mom was only beginning to hear alarms about breast cancer metastases in her lungs, and only taking a “break” from her new chemo cocktail to make sure she wasn’t reacting badly to it...when suddenly she wound up in ICU, where doctors found metastasic tissue everywhere her onc team had thought it wasn’t. That overnight scare was immediately followed by home hospice. She was given a prognosis of about two months...and lasted three days. We think it was a stroke. We were not ready for anything.

We thought we had time for things like: putting her advance directive where everyone could find it; asking where she wanted us to scatter her ashes; telling other family members to call the hospice instead of 911 if she was unresponsive; binge-watching a few more episodes of The Good Wife. The doctors, the experts, made it sound like we would have time. We didn’t have any time. We didn’t have any lucid dialogue at all after she came home. Her hospice team seemed like a fifth-rate clown school in disguise, and we didn’t know how to deal with them because our own Queen of Swear Words and Scary Looks was totally obtunded. The emergency crews on the night of her death shouldn’t even have been there. Nothing seemed under control until the weekend was over, and then so was it.

Four and a half years later, her ashes are unscattered. I never did start watching that show again, either.

I tell you this wishing you the exact opposite experience in every possible way, but please: expect the unexpected. Don’t wait to discuss anything important, especially about her care and her wishes. This is hard enough with anyone, harder still when someone is getting increasingly tired. Rather paradoxically, your urgency has to have some delicate patience wrapped up inside it.

Even a more gradual decline will feel slow at some hours and impossibly fast at others. Caring for yourself is essential, too, and you have to separate it from guilt, somehow. (If you can’t manage that, you are among friends.)

My heart goes out to you. I hope the road ahead is gentle as it can be for everyone, whatever that looks like.
posted by armeowda at 10:28 PM on February 13, 2018 [4 favorites]

Coming back in to endorse armeowda above. Though this has not been my dad's experience, it is very common that hospice is sought too late. too often because doctors wait until the end is overwhelmingly glaring everyone in the face. Families can be willfully unknowing, too, when they want a cure soooo much. Your mom made the choice herself to stop treatment, but many are guided by oncologists who don't want to stop. Shifting gears so abruptly after hoping so hard is overwhelming for many families.

My dad is on long-term coumadin to prevent blood clots because he has a metal heart valve. Since he's got cancer now all through his liver this has obviously messed up his blood clotting (clotting factors are made in the liver). Some weeks his clotting is too little, sometimes way too much. Regulating it is near impossible, and he is understandably fearful of strokes. He had one last week, we think, during a bout of some stomach bug that messed up his fluid balance and made him dehydrated. Now he is having trouble swallowing. Because he's in hospice, there's no doctor visits, no attempt to diagnose: It's all about comfort and alleviating symptoms. The nurse is OK, but we have a new nurse who while technically OK but is that warm or confident to show his own emotion. I think because my dad isn't in pain, he doesn't quite know how else to help. He chose this nurse because he's a big guy, and the male nurse was physically strong. The aides that come 3 times a week are much better at interacting and comfort. So I'd recommend getting to know several of the nurses, who will come less frequently while your mom is doing well. If there's one you grow to like and have confidence fits well, you can request that he or she becomes your mom's primary nurse.
posted by citygirl at 7:07 AM on February 14, 2018 [1 favorite]

I am so sorry that you're being faced with this. My dad had Hodgkin lymphoma for 7 years before it became overwhelming and eventually turned into leukemia (AML).

He decided to end treatment in early October 2014 - he was going through heavy chemo at the time to shrink a large tumor but the tumor was not responding and he then was diagnosed with leukemia despite treatment. That same month he called me and asked if I could come visit him soon - he lived across the US from me. My uncle, his closest relative and best friend, suggested it was more serious than he had let on, and suggested we go the next day.

My dad wasn't sure how long he might hang on. A couple months, maybe, he thought. I initiated FMLA coverage from work. He died two weeks later. It went by very quickly. He was already quite weak because his platelet counts were severely low, and had several blood transfusions, so I'm sure he was already closer to death than he thought.

About a week in, he told me no more hospitals, no more leaving the house. He wanted to die at home without machines and unfamiliar places. He didn't want hospice care at first (machines, wires, etc) but I needed the help and he eventually agreed to a minimal approach. He had hospice care for 2 days only, and then passed away. I wish I had convinced him to do it earlier - he would've been more comfortable.

The first few days I was there he was still in a clear state of mind and wanted to discuss estate-related matters. It was clear he was preparing for his death - he had cleared out many of his possessions, sold things, cleaned up the house as best he could. He had all his papers in order and a will and testament signed and ready. I was very thankful for this. Try and get as much of this straightened out as you can, earlier than later.

I hope you have the support you need during this time. Don't be afraid to ask for help. Enjoy the time you have with your mom. Take recordings of her talking and laughing. They will be even more valuable and comforting than photos, after she goes.

I wish you the best. You're welcome to contact me anytime if you need someone to talk to.
posted by rachaelfaith at 10:09 AM on February 14, 2018 [1 favorite]

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