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Tkraft Asked May 2013

My 86 year old dad is facing chemo after BCG failure to kill his bladder cancer. What's ahead for him?

FedUpNow May 2013
I am glad chemo helped your father and grandfather. My Dad did well on experimental chemotherapy for stage 4 metastatic prostate cancer until his last two weeks when it caused CHF and renal shutdown due to MRSA. He died after 4 days in a hospital from the bedsore caused by excessive weight gain from the renal shutdown that was inevitable. Dad lived 11 years after stage 4 diagnosis and died at 91.

terrim May 2013
My 86 year old father in law had chemo after surgery for colon cancer and while it made his hair fall out and made him severely nauseated at first, his oncologist prescribed a relatively new drug that stops the nausea. He is now cancer free and doing a lot of travel and has a new girlfriend he lives with!! My grandfather did the same thing (pancreatic cancer). Chemo does a good job!!!

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FedUpNow May 2013
I am sorry for each and every one of you who are going through this kind of agony with your loved ones. Someone else said it best: Dying is not for sissies. Neither is caregiving. You are all in my thoughts and prayers for ongoing strength during this stressful time.

hispagirl May 2013
Dear tkraft, I'm so sorry to hear that your father is going through this; it is not something any one of us want to see our loved ones go through it. I can tell you from my experience from my beloved mother, may she rest in peace, that her chemo sessions were actually quite good. After a session she would feel tired and perhaps once in a while she was constipated, but all in all, she had no major side effects, except of course losing her hair. The one comfort she had was that when she was getting her chemo, she was amongst people going through the same thing, so she was able to talk to them and hear their stories while there. I think she actually enjoyed being there because she didn't feel so alone. My mother had cancer of the breast and lungs. I wish you all the best and may be God be with you and your father during these difficult times.

ChristineRector May 2013
My mother was diagnosed with stage 4 breast cancer August of last year and by the time it was detected it had metastasized. I guess we are going through with what you call palliative care. She gets small doses of chemo every 3 weeks, she gets fatigued and has had blood clots due to the chemo but she has never lost her appetite and rarely gets nauseated. We have a wonderful doctor who keeps a close eye on her and so far it appears that we have slowed the cancer down and that is wonderful. If she ever gets to point where she is sick all the time and can not eat or function normally we will stop the treatments. She is 80 and has had a good life and that is the most important part of all this. You do not want to put someone you love through intensive chemo, it will destroy the person you know and love and leave you with a lot of very sad memories. Live every minute like it is the last and do what is needed to keep them with you for a long as possible WITHOUT destroying their quality of life. My father died a few years back from multiple health issues but the cancer and treatments he endured destroyed the man I loved and grew up knowing, it was a nightmare and it destroyed his quality of life, all for nothing because we lost him anyway. I guess what I am trying to say is weigh all the options, sometimes it is just better to let nature take it's course and enjoy what time you have with your Dad. My mom could go at anytime but in the meantime we take regular trips to the casino so she can play slots, we go for long rides to look at the mountains and to flea markets and I am taking her to the beach for a week starting Saturday. I may not have her for long and want to make every moment count and if she was getting intensive treatment we would not be able to share these things, as she would be probably be in a assisted living facility by now. No one wants to spend their last few years or months surrounded by people they do not know being poked and prodded by doctors all the time. At least I know I do not want that for my Mom. I would love to have her with me for forever but we all know that is not possible so I hold onto the knowledge that I am doing what is best for her and keeping her quality of life at an optimum level while letting her go on her own terms, not in hospital bed deteriorating into someone I would be unable to recognize.It is hard road and I wish you all the best. I think I made the right decision and look forward to whatever time I have left with her.

Tkraft May 2013
Thank you for all your comments. We have my mother at home as she is fully gone with Alzheimers...so dad has been her care giver along with us. ( I am 66). now, we are facing the challenge to care for dad and his bladder cancer.....he wants mother at home, and it is hard to keep her calm..now with dad,I really don't know how we are going to do it all....

BarbBrooklyn May 2013
We were fortunate that in one of my mom's previous hospital stays, when she was having uncontrollable spikes of labile blood pressure, neurological issues and what looked to me like some hallucinations and paranoia, I got a psychiatric consult--I'm a psychologist, and I know that often, psychiatrists are the only docs in a hospital who actually get the "whole patient" picture. The psychiatrist determined the the issues my mom was having were not truly psychiatric in nature and told us that what we needed was a doctor who understood the "elder body, elder mind" issue. And he was so right! Since Mom has been treated exclusively by docs who are geriatrically oriented, her meds have been stabilized, no sudden changes to deal with minor fluctuations in bp, sodium etc, and conservative treatment of infections.. Overall, so much better that the "reacting to the symptom" treatment she was getting previously. So each time she has a crisis and ends up in house, we call in the geriatric guy to advise. So much better.!

PaulaK May 2013
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.

FedUpNow May 2013
My 92 year old father fought to live until his last breath. He had chemo up until 4 days before he died. On that day, he was rushed to the ER with MRSA and died four days later. His stage 4 metastatic cancer did not kill him but his doctor and I were about to discontinue chemo for him because it was causing heart and kidney failure. All together, he couldn't overcome these insults to his body. I would say the last two weeks of his life on chemo were not worth it in terms of quality. But he knew he would die if he discontinued. He would have died anyway. He fought the good fight. I miss him everyday. He did not crap on like my mother-in-law. Compared to all the sick people I take care of, her depression and refusal to go to therapy for it is exhausting to all stuck taking care of her. Her husband had Alzheimer's and he wasn't a complainer. He was a gentle soul who couldn't remember where he was and would get violent if woken up while sleeping (because he fell out of bed) but for the most part I have not seen the endless bitterness my MIL seems to spew on a daily basis.

BarbBrooklyn May 2013
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.

PaulaK May 2013
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.

ferris1 May 2013
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.

BarbBrooklyn May 2013
And ask yourself, or if it's your dad who is running the show here, is chemo what he wants. At 86, maybe he wants palliative care.

AlwaysMyDuty May 2013
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.

beecindy May 2013
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!

Lori1943 May 2013
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.

FedUpNow May 2013
PS In the middle of all this, my mother-in-law was crapping on about how she wasn't happy. No surprise I told her to shut the f--- up!

FedUpNow May 2013
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.

TIMGIG123 May 2013
my father died of cancer, chemo will make him lose his appitite. You should ask your doctor everything you can about feeding him. Medicare will cover home care.I do not know about that type of cancer. My father had cancer of the lungs. GOOD LUCK

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