First, let me say how sorry I am that your dad is having to face this. It's a challenge--I'm a breast cancer survivor, age 70; I spent most of 2011 undergoing treatment, including 16 rounds of chemo. Different chemo concoctions are used for different things, so side effects may vary. Not everyone experiences the same side effects every time, but there are a number of them that most people are not aware of, in addition to nausea and fatigue, so it's important to understand what they and can be, and stay on the lookout for them. As just one example, I had a nasty infection under my fingernails and toenails--not that common, but I wasn't told about that possibility, so it had really progressed before I reported it and was prescribed massive antibiotics. Another very common side effect is constipation and/or diarreha; I was not sufficiently informed about that in advance either. Make sure you have effective over-the-counter remedies available for this, and be on the lookout for it. Chemo really does a number on the immune system, so I would avoid "crowds" even in places like movies and grocery stores, and do lots of handwashing to avoid various secondary infections. The first few treatments were fairly tolerable for me; I had two different drugs to take on a strict schedule to combat nausea for a few days after each treatment, and big doses of steroids were given with each chemo treatment as well, to help minimize the possibility of allergic reactions, and it also helped with the nausea. As a result of the steroid treatments, I actually gained weight while on chemo. But as the chemo builds up in your system it still really affects your appetite despite the drugs for it; in my case it got to the point that even plain water made me nauseous. Staying hydrated is an absolute must, so a little creativity is in order. I drank a lot of lemonade--real lemons and real suger--and iced tea was somewhat palatable as well; I also ate a lot of jello--again with real sugar; artificial sweeteners in anything triggered nausea, at least for me. I ate a lot of Stouffer's frozen macaroni--for me that was very palatable, but it's different for everyone. I was also able to tolerate the bottled "booster" drinks such as Ensure. That particular brand was not my favorite, but there is quite a big variety of these products, especially in health food stores. These drinks add protein, which is extremely important during chemo; read labels, because protein content in these products varies greatly. One has to be creative and patient; there are a lot of articles and even books about "healthy eating" and cancer--most, I'm convinced, are not written by anyone who has ever undergone chemo. Things like broccoli, for example, are just out of the question; the goal of balanced meals was unattainable, at least for me. The only criteria was just what would stay down, and that list became shorter and shorter as the chemo progressed. The other main challenge is fatigue. As I discovered, this is not the "Gee I'm really tired" variety--think of the most tired you have ever been and multiply that by about 50. There are sites online that are helpful, but be choosy; the American Cancer Society, Livestrong, and WebMD are a few good ones. I lived alone during treatment, but with lots of help from family and friends, and I was generally healthy when this started. So living arrangements may be an issue for your dad; if he lives alone he will still need a lot of support. God bless you both as you embark on this "adventure." It does pass, thank God, and remembering that was the only thing that pulled me through on some days. Try to stay positive, and line up as much help as you can get.
My husband had bladder cancer and survived. He may have to urinate every fifteen minutes and he will be exhausted from that. He will be exhausted anyway from the chemo. Blood tests will determine how much chemo he can withstand. His white cell count will be low, hence his immunity. Keep him from people with colds, stay out of crowds if he goes with you to the supermarket, wash all fruit especially grapes with a fruit detergent 5 minute wash, including cucumbers. Peel any fruit he eats: apples, oranges and watch for mouth sores. He will need to watch acidic foods like ketchup and tomato sauce. Bland foods will help as stomach ulcers can develop. Plus a lot of food will have a metallic taste so he won't want to eat. Fluids are more important than solids. He will want to sleep a lot--sometimes 24/7 and he may have a hair trigger temper. He can't help all of this so try to live with it. Good luck. After all this, my husband had to have his bladder removed, more surgery and an ileal conduit plus more chemo. Very hard on him and me. My thoughts and prayers are with you.
Ba8alou what great insight! My husband is 86 with declining dementia, but he does not want another thing done to him, on him, for him, and I will respect that request. Men in this age range do not like to wear Depends, leak, vomit (from chemo) and basically want to remain out of hospitals. Let him decide Tkraft.
A little back story here, mom will be 90 next month, has mild chf and is in independent living at a nice facility. Last year, she had a pulmonary effusion and they found a few abnormal cells. The oncologist wanted to do a bone marrow biopsy. We called in a geriatric consult, who agreed that any treatment they might contemplate would substantislly worsen mom's quality of life . And he advised, if you're not going to do the treatment, doing an invasive and painful test is worse than useless.
My sister-in-law has just finished her last round of chemo. There's no hope for her. She has experienced nausea, depression, dangerously low blood pressure, extreme fatigue, bowel blockage, and loss of appetite or can't get enough to eat depending on her medication. Describing it as a roller coaster ride doesn't do it justice. She is sad and angry, has very few good days and my heart is breaking watching this happen to someone I love and have known for 50 years. Please ask the doctor what to expect and hope they'll be honest. Inform yourself also. You can be a tremendous help to your dad as he travels this road. I wish you both the best.
I'm so sorry to hear your father is struggling with bladder cancer. My mother fought and lost a battle with aggressive breast cancer at 67, and I know how hard the chemo and radiation were on her. Is your Dad otherwise healthy, physically and mentally? I ask because so many caretakers on this site (I am one) are trying to care for loved ones with some form of dementia. I have asked myself what I will do if my 74-year-old father with progressive frontal temporal dementia develops a cancer at a point when I must make health care/treatment decisions for him. I don't know 100% what choice I would make under those circumstances, but to be candid, having seen what my mother went through, I doubt I would sign him up for chemo or radiation. (And fortunately for me, he many times expressed a disinclination to choose chemo if he developed cancer back when he had more control of his mental faculties, so I feel that I do know what he would want in any event.)
I agree with ba8alou ... if your father is still capable of choosing for himself, my instinct would be to listen carefully to what he says he wants and be as supportive as you can, whether his choice is to treat or to forgo treatment. I read a study last year that revealed that many oncologists would themselves (or do themselves) forgo the cancer-fighting treatments they prescribe to their patients, because they know firsthand what an impact these can have on the quality of the individual's remaining life. The questions you and your father have to ask here are, what is the probability of cure in this case? If a cure is not possible but additional time can be purchased at the expense of harsh treatments, how much time is he likely to gain -- and will it be "good time," or will it be largely unbearable for him because of the side effects of the treatment? If the answer is that the treatment will be rough, but he is likely to gain many months or years of cancer-free (and treatment pain-free) time afterwards, then that is a different gamble from just trying to buy an extra few months or a year if that time will be spent with him feeling nauseous, unwilling to eat, unable to sleep well, unable to think clearly, and unable to focus on the things he normally enjoys.
Please don't misunderstand me. I'm not advising that your father not fight his cancer, if that's what he wants to do and if he's in a mental position to make an informed choice. But if you're in the unenviable position of having to decide what treatment to pursue on his behalf, talk frankly with his doctors about what to expect, and what results (and side effects) are likely. An unfortunate reality of modern health care is that doctors don't often have conversations with patients or loved ones about whether it makes sense to pursue a treatment ... they assume that we want to try any and all measures, even if they are largely futile, terribly expensive, and will increase misery in the remaining time. Sometimes, they are right ... but sometimes not, and people feel swept along into "what they're supposed to do" rather than what they would really choose for themselves.
You and your Dad are in a tough place, and my heart goes out to you both. My best advice is to give yourselves space to think about what you want to do, and to resist the pressure to just get pulled along by the tide. If chemo is what your Dad wants, then go for it! But if it isn't ... palliative care is a very valid alternate choice.
Good luck, and a big hug to you. I know this is very hard.
Call the American Cancer Society or cancer.org any time 24/7. They will help in so many many ways, info, help with rides to and from treatment, lodging if necessary, help with insurance papers, almost anything you need. I work alot with ACS and the Relay For Life event. I lost my dad to cancer in 2003, prostate cancer. But I have many success stories and ACS is a huge part in why. Seriously, they can do so much for you and your dad!
ba8alou, I'm impressed that you all thought to call in a geriatric consult, and that he was willing to address the quality-of-life issues. I've heard and read some real horror stories about doctors not wanting to tread anywhere near such discussions, and it makes me feel sad and frustrated. People who are frightened for themselves or their loved ones often tend to move in whatever direction an "authority figure" points them, because they're not typically in the best frame of mind to think things through clearly, or because they're terrified to ask the very questions that would help to clarify the situation -- or both. Sadly, this contributes to unnecessary misery and spiraling out-of-control health care costs.
My mother had four good months following eight very miserable months of treatment for her very aggressive breast cancers ... if she'd known how things would turn out, I believe she would have made the choice to forgo treatment. Of course, we don't generally know in advance how things will turn out ... but in her case, it was clear statistically that her chances were very poor from the beginning, given the advanced stage of her cancer and the level of lymph involvement by the time of her surgery. She was determined to try, so we supported her choice. To this day, though, I wonder if she fought because she thought she'd somehow be letting us down if she didn't, even though the odds were so heavily against treatment making a long-term difference?
This is the horrible position many patients facing a terminal (or likely terminal) disease find themselves in ... thinking that if they don't do everything that's possible to "win," they're basically saying to their loved ones that they don't care enough about them to want to stay. It's so, SO important for families to talk this all through as frankly and honestly as possible ... the worst situation is when the loved ones don't want to see the cancer patient struggling with futile, misery-inducing treatments, but don't say anything because they want to be "supportive," while the cancer patient endures hell because he or she doesn't want to "let down" the family.
Please ask the doctor what to expect and hope they'll be honest. Inform yourself also. You can be a tremendous help to your dad as he travels this road. I wish you both the best.
I agree with ba8alou ... if your father is still capable of choosing for himself, my instinct would be to listen carefully to what he says he wants and be as supportive as you can, whether his choice is to treat or to forgo treatment. I read a study last year that revealed that many oncologists would themselves (or do themselves) forgo the cancer-fighting treatments they prescribe to their patients, because they know firsthand what an impact these can have on the quality of the individual's remaining life. The questions you and your father have to ask here are, what is the probability of cure in this case? If a cure is not possible but additional time can be purchased at the expense of harsh treatments, how much time is he likely to gain -- and will it be "good time," or will it be largely unbearable for him because of the side effects of the treatment? If the answer is that the treatment will be rough, but he is likely to gain many months or years of cancer-free (and treatment pain-free) time afterwards, then that is a different gamble from just trying to buy an extra few months or a year if that time will be spent with him feeling nauseous, unwilling to eat, unable to sleep well, unable to think clearly, and unable to focus on the things he normally enjoys.
Please don't misunderstand me. I'm not advising that your father not fight his cancer, if that's what he wants to do and if he's in a mental position to make an informed choice. But if you're in the unenviable position of having to decide what treatment to pursue on his behalf, talk frankly with his doctors about what to expect, and what results (and side effects) are likely. An unfortunate reality of modern health care is that doctors don't often have conversations with patients or loved ones about whether it makes sense to pursue a treatment ... they assume that we want to try any and all measures, even if they are largely futile, terribly expensive, and will increase misery in the remaining time. Sometimes, they are right ... but sometimes not, and people feel swept along into "what they're supposed to do" rather than what they would really choose for themselves.
You and your Dad are in a tough place, and my heart goes out to you both. My best advice is to give yourselves space to think about what you want to do, and to resist the pressure to just get pulled along by the tide. If chemo is what your Dad wants, then go for it! But if it isn't ... palliative care is a very valid alternate choice.
Good luck, and a big hug to you. I know this is very hard.
My mother had four good months following eight very miserable months of treatment for her very aggressive breast cancers ... if she'd known how things would turn out, I believe she would have made the choice to forgo treatment. Of course, we don't generally know in advance how things will turn out ... but in her case, it was clear statistically that her chances were very poor from the beginning, given the advanced stage of her cancer and the level of lymph involvement by the time of her surgery. She was determined to try, so we supported her choice. To this day, though, I wonder if she fought because she thought she'd somehow be letting us down if she didn't, even though the odds were so heavily against treatment making a long-term difference?
This is the horrible position many patients facing a terminal (or likely terminal) disease find themselves in ... thinking that if they don't do everything that's possible to "win," they're basically saying to their loved ones that they don't care enough about them to want to stay. It's so, SO important for families to talk this all through as frankly and honestly as possible ... the worst situation is when the loved ones don't want to see the cancer patient struggling with futile, misery-inducing treatments, but don't say anything because they want to be "supportive," while the cancer patient endures hell because he or she doesn't want to "let down" the family.
See All Answers