Recommendations for how to feel slightly less awful during treatment
April 6, 2022 9:53 PM Subscribe
A relative is beginning chemo tomorrow as part of treatment for breast cancer. I think it's HER2+ and has spread to nearby lymph nodes, so I imagine the treatment may be quite aggressive. Does anyone have any suggestions to deal with the various unpleasant side effects which may arise during treatment?
From what I have read, things like eating small amounts of healthy foods and doing regular gentle exercise would be helpful for not only dealing with chemo side effects but also trying to foster good health. But between the fatigue, loss of appetite etc it may be difficult for relative to have the motivation for these things.
Seeking advice for little things which may make a big difference in getting through each day.
Added difficulty: we're heading into winter/cold and flu season here, so may not be seeing each other in person and it will make it more difficult to get outside for walks.
Thank you
From what I have read, things like eating small amounts of healthy foods and doing regular gentle exercise would be helpful for not only dealing with chemo side effects but also trying to foster good health. But between the fatigue, loss of appetite etc it may be difficult for relative to have the motivation for these things.
Seeking advice for little things which may make a big difference in getting through each day.
Added difficulty: we're heading into winter/cold and flu season here, so may not be seeing each other in person and it will make it more difficult to get outside for walks.
Thank you
Best answer: If the prescribed supportive medications (anti nausea, painkillers, etc) aren’t helping, contact her doctor’s office advice line. They may be able to adjust dosages or prescribe a different medication immediately, instead of waiting for her next office visit or infusion.
On a related note, one of the best things you can do is be her medical advocate. There’s so much information coming at you in the appointments, and with chemo brain it can be tough to remember what was said once you get home. Having someone act as note taker and asker of questions can be hugely helpful. The same goes for advocating for supportive medications or other comfort measures during infusions. Although by asking this question, I’d bet you’re already on top of it!
posted by bluloo at 11:17 PM on April 6, 2022 [3 favorites]
On a related note, one of the best things you can do is be her medical advocate. There’s so much information coming at you in the appointments, and with chemo brain it can be tough to remember what was said once you get home. Having someone act as note taker and asker of questions can be hugely helpful. The same goes for advocating for supportive medications or other comfort measures during infusions. Although by asking this question, I’d bet you’re already on top of it!
posted by bluloo at 11:17 PM on April 6, 2022 [3 favorites]
Best answer: black nail polish to keep her nails from falling off.
It's a thing. The black nail polish stops the sun from burning the nail bed. Plus it looks wicked and punk.
Added difficulty: we're heading into winter/cold and flu season here, so may not be seeing each other in person and it will make it more difficult to get outside for walks.
Hmm, if you can't actually assist physically, then the best thing you can do is love them strongly and remember 'comfort in, trouble out'. Don't push, don't load you worries about them onto them. Don't demand anything from them, even if 'for their own good'. Take all your cues from them.
One of the best things a friend did for me was call me in the afternoon the day after each chemo session and just check in. She would then describe what the birds were doing around her birdbath and tell me other light stories. She would always ask before she would raise a heavy topic like politics (which I love talking about usually) and she never whinged to me about anything at all, even though she had her own chronic issues. I had only a miniscule amount of bandwidth. The best people were the ones who worked with that. Short visits and nice teas.
The one thing I wish – I wish I had gone for a walk every day. Even to the end of the driveway and back. My comeback would have been a bit quicker and less joint-achey.
posted by Thella at 12:11 AM on April 7, 2022 [7 favorites]
It's a thing. The black nail polish stops the sun from burning the nail bed. Plus it looks wicked and punk.
Added difficulty: we're heading into winter/cold and flu season here, so may not be seeing each other in person and it will make it more difficult to get outside for walks.
Hmm, if you can't actually assist physically, then the best thing you can do is love them strongly and remember 'comfort in, trouble out'. Don't push, don't load you worries about them onto them. Don't demand anything from them, even if 'for their own good'. Take all your cues from them.
One of the best things a friend did for me was call me in the afternoon the day after each chemo session and just check in. She would then describe what the birds were doing around her birdbath and tell me other light stories. She would always ask before she would raise a heavy topic like politics (which I love talking about usually) and she never whinged to me about anything at all, even though she had her own chronic issues. I had only a miniscule amount of bandwidth. The best people were the ones who worked with that. Short visits and nice teas.
The one thing I wish – I wish I had gone for a walk every day. Even to the end of the driveway and back. My comeback would have been a bit quicker and less joint-achey.
posted by Thella at 12:11 AM on April 7, 2022 [7 favorites]
Best answer: Just want to echo what armeowda said above regarding unsolicited advice during chemo treatment. A dear friend went through this and received a SHOCKING amount of advice that was ridiculous and which she felt she needed to wade through and respond to. Don't be this person.
She will also find that during her infusion she will likely be in a room with others who can give on the ground advice which may be more helpful than anything she can prepare for ahead of time. It's fine to do a lot of prep work to feel some level of control about this uncontrollable situation then throw it all out the window when going through the actual treatments.
posted by eleslie at 1:56 AM on April 7, 2022 [2 favorites]
She will also find that during her infusion she will likely be in a room with others who can give on the ground advice which may be more helpful than anything she can prepare for ahead of time. It's fine to do a lot of prep work to feel some level of control about this uncontrollable situation then throw it all out the window when going through the actual treatments.
posted by eleslie at 1:56 AM on April 7, 2022 [2 favorites]
Best answer: I went through chemo for BC a year ago (although mine was triple-negative). Everything tasted weird to me when I was on chemo, so +1 to “eat whatever she can, and what tastes good.
When we’re healthy, we forget that the act of eating takes effort/energy - and that can be in short supply. I grew to love smoothies made with frozen bananas, frozen berries, yogurt, protein powder, and sometimes ice cream. The calories were good for me, and I could bypass my tastebuds with a straw, so they tasted okay.
Lots of blankets, shawls, knit hats to keep warm. I completely lost my ability to regulate my body temp, and was freezing cold even in 90F!
Lastly, if you can get them, the candy called Ice Chips are great for dry mouth. They are sweetened with xylitol, which also helps prevent tooth decay. I loved these things.
Best of luck, I’m sure you’ll find the best path forward.
posted by dbmcd at 2:48 AM on April 7, 2022 [2 favorites]
When we’re healthy, we forget that the act of eating takes effort/energy - and that can be in short supply. I grew to love smoothies made with frozen bananas, frozen berries, yogurt, protein powder, and sometimes ice cream. The calories were good for me, and I could bypass my tastebuds with a straw, so they tasted okay.
Lots of blankets, shawls, knit hats to keep warm. I completely lost my ability to regulate my body temp, and was freezing cold even in 90F!
Lastly, if you can get them, the candy called Ice Chips are great for dry mouth. They are sweetened with xylitol, which also helps prevent tooth decay. I loved these things.
Best of luck, I’m sure you’ll find the best path forward.
posted by dbmcd at 2:48 AM on April 7, 2022 [2 favorites]
Best answer: very good weed was useful for my dear friend with a brain tumor. chemo + radiation, it was the only thing that settled nausea and improved appetite.
posted by j_curiouser at 4:01 AM on April 7, 2022 [4 favorites]
posted by j_curiouser at 4:01 AM on April 7, 2022 [4 favorites]
Best answer: Keep her favorite foods around. If she says she could eat something, feed her!
Also, Gatorade, Ensure, seltzer water. Also too, pot really does help.
I'm helping a friend go through chemo. He's on a short break right now and he's so hungry all the time! I give him anything he wants.
I'll remember your relative in my prayers.
One other thing: Carers can and do burn out. Remember to take care of yourself.
posted by james33 at 4:31 AM on April 7, 2022 [1 favorite]
Also, Gatorade, Ensure, seltzer water. Also too, pot really does help.
I'm helping a friend go through chemo. He's on a short break right now and he's so hungry all the time! I give him anything he wants.
I'll remember your relative in my prayers.
One other thing: Carers can and do burn out. Remember to take care of yourself.
posted by james33 at 4:31 AM on April 7, 2022 [1 favorite]
Best answer: When I get infusions, some of the drugs cause a gross taste in my mouth, so I always bring mint Lifesavers to the cancer center. The nurses may also have them on hand.
Some foods I used to like no longer taste good to me, so be prepared for that.
The book The Cancer Fighting Kitchen includes information on how to adjust recipes for different issues with taste that may come up. (I did not love the book in general, but that's because the recipes are too complicated for people who don't have caretakers - you may find recipes that you can make for your relative.)
posted by FencingGal at 5:13 AM on April 7, 2022 [1 favorite]
Some foods I used to like no longer taste good to me, so be prepared for that.
The book The Cancer Fighting Kitchen includes information on how to adjust recipes for different issues with taste that may come up. (I did not love the book in general, but that's because the recipes are too complicated for people who don't have caretakers - you may find recipes that you can make for your relative.)
posted by FencingGal at 5:13 AM on April 7, 2022 [1 favorite]
Best answer: Does your state have legal marijuana? If not, take a trip to a state that does and get some edibles. It might be dicey to get a lot; make a plan and recruit help from anybody you know who uses weed.
When my Mom had radiation therapy, it took a while for her to feel really bad. When I was with her, I didn't ask if she was hungry; I'd just make a piece of cinnamon toast and take it to her, or a dish of applesauce. She'd eat tiny amounts frequently and she really needed the calories. I'd make foods I knew she'd like, and I stocked the freezer with small containers.
And start getting ideas for movies and shows to stream, audiobooks if she likes them, books, magazines, music. There's so much waiting around time, and them bone-exhausted time, when even movies require too much energy and half-watching a favorite tv show is just the thing.
posted by theora55 at 5:44 AM on April 7, 2022 [1 favorite]
When my Mom had radiation therapy, it took a while for her to feel really bad. When I was with her, I didn't ask if she was hungry; I'd just make a piece of cinnamon toast and take it to her, or a dish of applesauce. She'd eat tiny amounts frequently and she really needed the calories. I'd make foods I knew she'd like, and I stocked the freezer with small containers.
And start getting ideas for movies and shows to stream, audiobooks if she likes them, books, magazines, music. There's so much waiting around time, and them bone-exhausted time, when even movies require too much energy and half-watching a favorite tv show is just the thing.
posted by theora55 at 5:44 AM on April 7, 2022 [1 favorite]
Best answer: When I was on chemo I pretended I was in a foreign country and couldn't get my usual food. For a start I didn't want to eat the stuff I loved the most in case I ended up associating chemo nausea with that food and developed an aversion. So chocolate, for example, was strictly off limits.
When I did eat some of my regular menu items, they tasted off. Sometimes they had lost most of their taste altogether, sometimes they had developed some peculiar additional flavours. Hone, for example, turned impossibly bitter. But that was fine, because while I was visiting Chemotopia I understood that the wheat flour was probably mixed with millet and buckwheat or with powdered Martian sand crab bone, because in Chemotopia they don't produce flour the same way we do. It's a foreign country.
It was time to try all that stuff that I almost never ate and normally would only ever try if I was feeling really bored and adventurous. Did canned stuffed vine leaves taste weird or not? I have no idea what they were supposed to taste like, but for about three weeks off and on they worked very well. Interesting Asian snack mix? I dunno what the spices were and I think the starch might have been corn, but anyway it was okay, if not great. I wasn't bored during chemo, but I experimented anyway. Oranges were a huge disappointment because of the lost flavour, so I didn't want 'em. Peculiar fruit cocktail that was a mysterious off brand wasn't something I expected to be good, but it was fruit, it was vaguely sweet, and it was good for my digestion. Rice noodles were never something I liked much, but they didn't lose anything during chemo because there wasn't anything to lose.
As a very stingy person it went against the grain to throw food out, but that inhibition went by the board. Frozen wonton worked really well for almost a week, until one day in the middle of the second mouthful it didn't. But I still craved the broth and that worked very well after the slimy noodles that triggered my gag reflex were taken out with a slotted spoon, as it served as a base to cook frozen spinach. If I made a bowl of something to eat and had one mouthful and thought nope, I noped right out and looked for something else. Tiny amounts and much variety was good. If I had had more than one baby carrot I would have noticed that it wasn't so great. But I had already eaten the carrot and now I could try the two bite butter tart, the slice of Russian sausage, the olives, the half tablespoon of cottage cheese, the cracker, the slice of pear, or the two bite frozen quiche appetizer. If none of them worked, it still counted as quite a decent meal in the process of finding out that they didn't.
Some kind people cooked for me. You know what 0ther People's Food is like - they use the wrong proportions, they don't use the right spices. I ate "goulash" which was made from hamburger and had neither paprika nor sour cream in it. In Chemotopia they make very strange goulash, but what do you expect? And it actually wasn't bad at all. It was protein and calories and something that had once been a vegetable. It worked.
Strong flavours were a good bet at the point that my sense of taste was mostly gone. Olives, an ounce of well aged cheese, a bit of curry - the delicate flavours went down to nothing leaving me with only the most basic flavours, sweet, bitter, sour, salty, umami. If I could definitely taste those then it was enough to give me the saliva to swallow.
I ended up with the chemo aversion to only three things I ate. During infusions I had to have Popsicles or ice chips in my mouth to prevent mouth sores. I had to hold them in the frozen state as long as possible while miserably conscious that I was going to feel ghastly once the ice was gone. It was a bad association. I never did like ice to begin with though. The other thing was tums fruit flavoured tablets - I took those to ease some of the digestive discomfort during chemp. I stuck to just the fruit flavour which meant that lemon and lime and orange and cherry all still make my throat close, but fortunately for me I can still manage the wild berry flavours, which is good, because my doctor wants me to take them as a calcium supplement now.
During the worst days of malaise and misery I got into clicker games. Sounds would irritate, keeping my eyes open took effort and I couldn't sleep through it. I sat at my computer for hours, in the days after my last few infusions, clicking my mouse button. I can't say it was fun, but with the sound turned off, it gave me something to do that didn't make me feel worse. Every few minutes I would open my eyes and see if I could afford another hero or an upgrade to their fighting equipment, and then I would go back to clicking. It worked for me because it showed me that time was very steadily passing, bringing me closer to when I would not feel so bad, it was entirely low stakes, and took no skill. Indeed, if my finger fell off the mouse I would still be gaining points thanks to my reprehensibly drawn henchmen with the swords that were bigger than they were. Click, click, click, click, click, click.... Even when I logged back in after lying down for awhile I would see progress. Click, click, click, click, click... Click. Click. Click. I will get to the other side of this. I only have to be here for awhile. Click. Click. Click, click, click, click...
posted by Jane the Brown at 7:51 AM on April 7, 2022 [10 favorites]
When I did eat some of my regular menu items, they tasted off. Sometimes they had lost most of their taste altogether, sometimes they had developed some peculiar additional flavours. Hone, for example, turned impossibly bitter. But that was fine, because while I was visiting Chemotopia I understood that the wheat flour was probably mixed with millet and buckwheat or with powdered Martian sand crab bone, because in Chemotopia they don't produce flour the same way we do. It's a foreign country.
It was time to try all that stuff that I almost never ate and normally would only ever try if I was feeling really bored and adventurous. Did canned stuffed vine leaves taste weird or not? I have no idea what they were supposed to taste like, but for about three weeks off and on they worked very well. Interesting Asian snack mix? I dunno what the spices were and I think the starch might have been corn, but anyway it was okay, if not great. I wasn't bored during chemo, but I experimented anyway. Oranges were a huge disappointment because of the lost flavour, so I didn't want 'em. Peculiar fruit cocktail that was a mysterious off brand wasn't something I expected to be good, but it was fruit, it was vaguely sweet, and it was good for my digestion. Rice noodles were never something I liked much, but they didn't lose anything during chemo because there wasn't anything to lose.
As a very stingy person it went against the grain to throw food out, but that inhibition went by the board. Frozen wonton worked really well for almost a week, until one day in the middle of the second mouthful it didn't. But I still craved the broth and that worked very well after the slimy noodles that triggered my gag reflex were taken out with a slotted spoon, as it served as a base to cook frozen spinach. If I made a bowl of something to eat and had one mouthful and thought nope, I noped right out and looked for something else. Tiny amounts and much variety was good. If I had had more than one baby carrot I would have noticed that it wasn't so great. But I had already eaten the carrot and now I could try the two bite butter tart, the slice of Russian sausage, the olives, the half tablespoon of cottage cheese, the cracker, the slice of pear, or the two bite frozen quiche appetizer. If none of them worked, it still counted as quite a decent meal in the process of finding out that they didn't.
Some kind people cooked for me. You know what 0ther People's Food is like - they use the wrong proportions, they don't use the right spices. I ate "goulash" which was made from hamburger and had neither paprika nor sour cream in it. In Chemotopia they make very strange goulash, but what do you expect? And it actually wasn't bad at all. It was protein and calories and something that had once been a vegetable. It worked.
Strong flavours were a good bet at the point that my sense of taste was mostly gone. Olives, an ounce of well aged cheese, a bit of curry - the delicate flavours went down to nothing leaving me with only the most basic flavours, sweet, bitter, sour, salty, umami. If I could definitely taste those then it was enough to give me the saliva to swallow.
I ended up with the chemo aversion to only three things I ate. During infusions I had to have Popsicles or ice chips in my mouth to prevent mouth sores. I had to hold them in the frozen state as long as possible while miserably conscious that I was going to feel ghastly once the ice was gone. It was a bad association. I never did like ice to begin with though. The other thing was tums fruit flavoured tablets - I took those to ease some of the digestive discomfort during chemp. I stuck to just the fruit flavour which meant that lemon and lime and orange and cherry all still make my throat close, but fortunately for me I can still manage the wild berry flavours, which is good, because my doctor wants me to take them as a calcium supplement now.
During the worst days of malaise and misery I got into clicker games. Sounds would irritate, keeping my eyes open took effort and I couldn't sleep through it. I sat at my computer for hours, in the days after my last few infusions, clicking my mouse button. I can't say it was fun, but with the sound turned off, it gave me something to do that didn't make me feel worse. Every few minutes I would open my eyes and see if I could afford another hero or an upgrade to their fighting equipment, and then I would go back to clicking. It worked for me because it showed me that time was very steadily passing, bringing me closer to when I would not feel so bad, it was entirely low stakes, and took no skill. Indeed, if my finger fell off the mouse I would still be gaining points thanks to my reprehensibly drawn henchmen with the swords that were bigger than they were. Click, click, click, click, click, click.... Even when I logged back in after lying down for awhile I would see progress. Click, click, click, click, click... Click. Click. Click. I will get to the other side of this. I only have to be here for awhile. Click. Click. Click, click, click, click...
posted by Jane the Brown at 7:51 AM on April 7, 2022 [10 favorites]
Best answer: Everyone is going to have their own chemo experiences. Me, I had steroid mania (I got a megablast of them with my infusions) that would give way to absolutely crushing fatigue, but my tummy was okay for the most part and I didn't lose any hair (folic acid being the key here)
Here are my pro tips for getting through my chemo:
1. if you have friends dropping off meals, make a google sheet that they can claim a week or a day on, so you don't get a crush of food one week and nothing the next.
2. Youtube was absolutely wonderful during the sleepy half-awake parts of chemo. Its algorithm has me pegged pretty well and doesn't try to redpill me. This meant I had a novel thing to look at whenever I was conscious enough to care and discovered some new favorites. Any autoplaying video source would work here I guess, but the variety of stuff that Youtube would throw up was kinda better than just marathoning some show.
3. Walking. Sometimes it was just to the end of the block and sometimes I didn't make it, but I walked more days than not. My spouse sheepdogged me really well here and is in tune enough with me to understand that some days the walking was just not going to happen.
4. Getting into a rhythm. After an infusion I had 2-3 days of steroid mania, 7-10 days of sleeping 18-20 hours, and then a slow recovery to functional just in time for the next infusion. The last 3-4 days of the slow recovery phase, I could actually do useful stuff, so all that stuff got scheduled in there.
5. Being super careful about immunocompromization and covid. I stayed home pretty much 24/7.
6. No plans except to get to the other side. I wanted to do some fun little hobby projects and a full program of PT while I was on chemo. Didn't happen.
7. Canned soup for days when I can't handle solid food. I love soup, and you can just eat the broth if you're not feeling right enough to eat the solid bits. Sriacha and hoisen were helpful here too, especially because I had gnarly breathing tube inflammation from my surgery and the sriacha was the only thing that relieved it. Sriacha is a great anti-inflammatory.
8. Ensure, for days when I couldn't face soup.
all the hearts to your relative.
posted by Sauce Trough at 12:17 PM on April 7, 2022 [1 favorite]
Here are my pro tips for getting through my chemo:
1. if you have friends dropping off meals, make a google sheet that they can claim a week or a day on, so you don't get a crush of food one week and nothing the next.
2. Youtube was absolutely wonderful during the sleepy half-awake parts of chemo. Its algorithm has me pegged pretty well and doesn't try to redpill me. This meant I had a novel thing to look at whenever I was conscious enough to care and discovered some new favorites. Any autoplaying video source would work here I guess, but the variety of stuff that Youtube would throw up was kinda better than just marathoning some show.
3. Walking. Sometimes it was just to the end of the block and sometimes I didn't make it, but I walked more days than not. My spouse sheepdogged me really well here and is in tune enough with me to understand that some days the walking was just not going to happen.
4. Getting into a rhythm. After an infusion I had 2-3 days of steroid mania, 7-10 days of sleeping 18-20 hours, and then a slow recovery to functional just in time for the next infusion. The last 3-4 days of the slow recovery phase, I could actually do useful stuff, so all that stuff got scheduled in there.
5. Being super careful about immunocompromization and covid. I stayed home pretty much 24/7.
6. No plans except to get to the other side. I wanted to do some fun little hobby projects and a full program of PT while I was on chemo. Didn't happen.
7. Canned soup for days when I can't handle solid food. I love soup, and you can just eat the broth if you're not feeling right enough to eat the solid bits. Sriacha and hoisen were helpful here too, especially because I had gnarly breathing tube inflammation from my surgery and the sriacha was the only thing that relieved it. Sriacha is a great anti-inflammatory.
8. Ensure, for days when I couldn't face soup.
all the hearts to your relative.
posted by Sauce Trough at 12:17 PM on April 7, 2022 [1 favorite]
Response by poster: Thank you everyone for sharing your experiences.
posted by kinddieserzeit at 4:04 AM on April 16, 2022
posted by kinddieserzeit at 4:04 AM on April 16, 2022
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I’m sure treatment has evolved in the several years since, but my strongest memory of what helped Mom was
A) eating whatever actually sounded/tasted good in the days following treatment, regardless of how “healthy” it was, and
B) getting home for a nap under a VERY warm blanket as soon as possible after infusions. Sometimes we would try to sneak in a grocery run as I drove her home, and it was never a good idea; the fog and fatigue would hit all at once, right before we got to checkout.
In short, now is the time to be as kind and gentle with herself as possible. If she wanted a cheeseburger and 3-5 hours of Netflix instead of a smoothie and a brisk walk, she was getting the cheeseburger and Netflix.
Everybody and their dog has advice for breast cancer patients in re: nutrition, exercise, positive attitude, etc., but if it’s spread to the lymph nodes, the patient is exhausted — even before you factor in treatment. (If you can offer some gatekeeping against the people advising “one weird trick” from the cheap seats, even better! Tell the friend pushing crystals and essential oils to stuff it. Tell the salesperson asking nosy questions about the lymphedema sleeve that it’s none of their damn business.)
Speaking from years of experience as the not-patient in this situation: Let your relative call the shots, here. Help facilitate whatever she says will feel best. Can you send grocery/prepared food deliveries of whatever she says doesn’t taste like metal this week? Can you run interference on the family rubberneckers and the neighborhood looky-lous? Can you help arrange transport to/from chemo, without any “quick” stops en route? Can you send an electric throw blanket with an auto-off feature?
This is hard, I know. You’re good to be thinking about her needs. My heart is with you both.
Mom also swore by cheap Canadian whiskey for the sore throats, and black nail polish to keep her nails from falling off. YMMV
posted by armeowda at 11:01 PM on April 6, 2022 [11 favorites]