My mom is dealing with being near the end of Stage IV cancer. Her liver is failing and she’s getting fluid drained pretty much weekly. Her last PET scan showed it’s worse. Fluid tests show it’s her liver failing.
At her doctor’s appt I point blank asked the doctor if there were better foods to eat or foods to stay away from to help her liver out. I got a blank stare for a moment or two, then the doctor said, “well, she’s low on protein, so it’d be helpful to eat more meat and eggs to try to up those numbers.” This was all last Friday.
At home my mom tries to eat meat/eggs, but after a bite they just don’t taste good to her. She can eat other things, but those just turn her off. Nonetheless, she was forcing herself to eat them in order to try to help. It’s what her doctor told her to do.
Sunday I asked the same question on google… Seems when one’s liver is failing it’s HARMFUL to eat meat/dairy because those are too difficult for the liver to use. Protein is needed, but plant based sources are better. Eating meat/eggs isn’t just neutral, it’s bad - as is salt. (Drinking and smoking are too, but my mom doesn’t do those.)
I wish the doctor had told my mom this back when things started going bad. I wish I had looked it up on google earlier. I know it’s not going to change much in the grand scheme of things, but there’s certainly been no need for my mom to try to eat things that her body was telling her not to eat.
My med school lad and I always share things going on (mainly because he loves his grandma and also is interested from the medical POV). He tells me they recently had a class on just this sort of thing - that doctors are generally not up to date on nutrition and should always refer their patients to nutritionists. I wish mom’s doctor had even said that instead of point blank telling her something wrong.
End of vent/PSA. If this can help someone else, at least there’s that. Google has value - at least if one stays on reputable sites.
Sorry about your mom. I’ve spent quite a few years googling medical info. There is so much info out there, so many possible scenarios that there is no way a doctor can keep up with it all.
I also believe in listening to a patient when they say "this side effect only showed up since I started doing “x”. My mom started a med once that she immediately said gave her leg cramps. The doc insisted (rudely in fact) that there wasn’t a possibility of that side effect. So I googled it–the internet was full of cases of leg cramps even though it wasn’t listed as a side effect. The prescribing package insert was later changed to reflect that. I wasn’t mad that the doc didn’t realize–I was mad that he dismissed out of hand a genuine concern (she quit the drug and the doctor).
I have used reliable websites to help me with getting information when my local providers didn’t have enough information for me and my loved ones. The information has been invaluable. It is important to sort “good” reliable information from all the “junk” stuff. .gov websites and reputable health information tends to be good. MedlinePlus also has some good information and includes clinical research information.
Just to clarify, I definitely don’t think doctors need to be superhuman and all-knowing. We’d all fail at that. I suspect none of us are that “good” at our own jobs no matter how well we do them.
I just wish that mom’s had admitted she wasn’t sure and suggested she see a nutritionist for the latest information to help her out given her specific circumstances - or even suggesting reliable sites on the internet. I’d have preferred either to giving her flat out incorrect information as her “best guess.”
The more I get involved medically (family members and my own), the more I personally think it all needs to be a team effort with everyone bringing info to the table and discussing things. Humans vary so much. What’s best changes as new information is gathered from studies. If one is sane enough to overlook sites akin to Aunt Zulu’s Snake Oil (I made that up, so hope it isn’t a real site!), google sure seems like it can provide updated info to fill in gaps when needed. It ought to be able to be part of the team in today’s generation. Too often I hear folks saying, “don’t google!” I think that does more harm than good - except perhaps when one is prone to anxiety health-wise.
I use reliable web sites and studies. But you certainly can’t (and shouldn’t) believe everything you see out there. Mayo Clinic. WebMD, CDC, etc. are sites I regularly use. But if there isn’t a reputable study linked from an article from sites I don’t know, I’d be wary.
The NYT Magazine has a regular feature each week about someone with odd, undiagnosed symptoms and the way that different doctors/specialists test, rule out, try things, finally get a diagnosis. Recently there was one where a new doc on the case, I think a resident, searched the symptoms and put together the diagnosis that all the preceding docs had missed. I was sort of appalled that none others had done this–just read the literature-- and mentioned this to my H, a former doctor. He reminded me that he used to be known as “House” (from the show) because he was so good at diagnosis in the hospital he worked out of. Even though a “lowly” pediatrician, he was often asked to take a look at difficult cases at all ages.
What did he do that made him so good at this? He read and researched, voraciously. He never assumed he knew everything on a topic or illness or diagnosis or treatment. He researched everything. He says it made him nuts that so many doctors did what is listed here–just answer as if they know everything they need to know on the topic.
The world lost a danged good doctor when he quit (though it gained a danged good HS bio teacher!)
It is very difficult emotionally to care and support seniors at end of life. It is somewhat like raising kids in that during the first go round you are hyper vigilant and try to do everything as perfect as possible to keep your senior thriving as long as possible and each time you go through it you relax alittle. Especially seniors as they can lurch from one crisis to another with periods of peace and status quo in between.
I will never forget one day when I was grilling the doc about meds and this and that for a senior family member y and he looked up from his note taking and said “you do realize she’s dying, right?” Op I feel for you but the best thing you can do is let her live this part of life the way she wants to starting with let her eat as much as she wants and what she wants, sleep when she wants etc. take your cues from her. Perhaps you caught your doc by surprise worrying about diet at this point in the progress of the disease.
You might also look into palliative care depending on where she is and the prognosis and alleviate some stress and anxiety for you.
^^^ I’d buy her a filet mignon if she wanted one. In the past it was one of her favorite foods. My only “beef” (pun intended) is that she’s had difficulty wanting to eat meat and eggs - they turn her off taste-wise, but has been forcing herself to do so because she thought it was better. Doctor said so…
I totally agree with all the rest of your post, though I never grill doctors (or her) about her meds. I figure they know better than I do about that.
I was doing the grilling lol because there were so many prescriptions and I was concerned that every new issue was related to all the meds interacting . Ooh boy. It was my “first” end of life as primary caregiver and I was quite young, only in my late twenties. I am much better at it now!
When my brother was dying of liver failure, I went and got him whatever he wanted to eat. No amount of “healthy food” was going to help him at that point, so if he was hungry, I made sure to get him what would make him happy. Which, as it turned out, was KFC and pizza.
I have stage 4 cancer that has metastasized to my liver. And I agree with you - online research can be valuable! Finding reputable sites is the hard part - the best ones always cite their sources for information. On a personal note, I found that taking digestive enzymes (at drug stores, health food stores and Amazon) with every meal helps tremendously. They help the body absorb carbs, fat and protein. A soft-boiled or poached egg is extremely nutritious without much fat and relatively easy to digest. Also, milk thistle tea with a spoonful of honey is a soothing beverage which is very helpful to the liver. Unsweetened applesauce still works when I don’t feel like eating anything.
I know how your mom feels exactly. She’s very lucky to have such an attentive caregiver and I’m sure she knows it:). Make sure she has a lot of water within reach (she might be very thirsty all the time) and perhaps find a TV program to watch or binge together. I did that with my high-school age daughter and it’s one of my happiest memories. Even silly shows generate good conversation when you watch them together. Sending hugs to you both.
Toward the end of her life, my SisIL mainly wanted and could eat small cups of custard that a friend lovingly made and delivered. It was fairly easy for her to swallow and digest.
The National Institutes of Health are a good starting place for reliable medical info, as are major medical centers—Mayo, Cleveland Clinic, National Jewish (for lung health), Sloan Kettering, MD Anderson, etc.
I think this is probably right, and it probably doesn’t matter what she eats. But this is really hard @Creekland when your doctor has no good answer and you are working so hard to find solutions for your mom in order to help with her quality of life. I agree with @momofthreeboys that a palliative care consult may be useful. With palliative care, you don’t stop treatment, but you have professionals to help maximize quality of life.
Good personal advice @srlilly I wish you the best with your treatments. Hugs to you and your daughter.
When I found what turned out to be a pretty rare Phyllodes tumor in my breast, I’m very thankful that I chose NOT to google anything remotely related to breast cancer.
I knew very well that there were a billion different things to be found online, all of them terrifying, and maybe 2% that would actually apply to me.
And I was right. I got all the info I wanted from my doctors (as well as a great forum on, of all places, a Disney World board. Those women kept me sane.) But I was terrified enough; I didn’t need any dire predictions that would scare me without reason. And I wasn’t knowledgeable enough to sort the wheat from the chaff.
So, yes, the internet is wonderful for some things-- like the dietary advice you mention.
But for me, it was absolutely the right choice NOT to hit google.
PS-- that was in 2008. As you can see, all the dire predictions I would have found online didn’t apply. I had a mastectomy and radiation. Ten years later I’m healthy as a horse.
Watermelon and cucumber are good for liver function and natural diuretics - and refreshing with tons of hydrating effects. Best eaten with the seeds actually. I would force them on your mom but if they appeal to her, they would be worth eating. I often find our bodies crave what we need so it doesn’t surprise me that your mom doesn’t want meat right now.
I’m sorry your mom is going through this. I’m sure your care and concern is a great comfort to her.
I suspect the blank stare was because you phrased the question in terms of “help her liver out.” If you had phrased it in terms of her comfort at this stage of her illness, the doctor might have been better prepared to answer.
Well, googling or not is sometimes based on knowing your own psychological tendencies. If you know answers will make you obsessed and anxious, sometimes it is better to not google. I have friends on all ends of this spectrum. For myself, I would google and be on boards for the disease. It can be so hard to separate fact from fiction at times.
FWIW, as an old RN I knew this doctors answer on the protein in liver disease was wrong as soon as I read it, though in general protein is good for healing and maintaining energy.
One site that I turn to frequently is The People’s Pharmacy. Run by two pharmacists with a public radio show, they accumulate information on drug side effects and alternative remedies with a research orientation.
Yes and don’t get me wrong…it ain’t easy and I have literally fought tooth and nail for all three seniors I have been responsible for at end of life and feel huge empathy for anyone in that position. My mental thinking has shifted from what do I think should be done to what do the seniors want that is reasonable and can be accomplished. It has been a huge learning curve both in terms of what my mind thinks and what their minds are thinking and what the field of medicine thinks. Honestly I think the medical field has cone a long way in the right direction regarding long term illness and end of life since 1988 when I went through this the first time and I have shifted my thinking to a less cynical position to a more team approach view where we all contribute to the welfare of the senior.