What do you wish you'd known about chemotherapy?

May 3, 2018 9:57 AM

I'm starting chemotherapy for non-Hodgkin's lymphoma tomorrow. Beyond the standard medical guidance, what should I know about going through chemo?

I have non-Hodgkin's lymphoma and am starting the first of six courses of chemotherapy tomorrow. The chemo is R-CHOP at three-week intervals. Please tell me anything you can think of that might make the next few months easier!

I work part-time and am hoping to be able to continue working through the chemo, but obviously I have no idea how my body will respond. My employers are aware of the situation and have a fall-back plan in case there are days I can't work. I'm working with a nutritionist I trust who has put together a diet and supplement plan to reduce side effects.

In terms of support, my mother and sister are both nearby and will be my main circle of support. I don't have a broad social circle and am worried about feeling isolated. Some of my friends know of the situation and want to help, others I haven't told. I'm not sure what to ask for from people who'd like to help because I don't know what kinds of support I'll be needing. I've thought of making some kind of sign-up sheet for various kinds of support (food, transport, going for walks, just hanging out...) -- what else should I put on it?

Most generally I'm concerned about unknown unknowns. If I had a better sense of what to expect, I could prepare better. Help?

posted by zeri to Health & Fitness (18 answers total)

Go for walks every day, especially when you're tired and crabby and really don't want to. Exercise is so, so important in how well you tolerate chemo. I was often a huge giant baby about it, but my husband almost always made me get up off the couch and go for a nice slow walk with him and I'm very grateful in retrospect.

I also sent you a memail with more info.
posted by something something at 10:03 AM on May 3, 2018 [3 favorites]

A couple folks I know swore that they felt much better when they fasted for about 24 hours before chemo.
posted by Urban Winter at 10:21 AM on May 3, 2018 [1 favorite]

The one thing they didn't warn us about when my son went through chemo is that it can affect your taste buds in weird ways - so afterwards he stopped liking a lot of his favorite foods because he associated them with how they tasted "off" to him. If you have any favorite flavors that you don't want to develop an aversion to, you might want to keep from eating them too often during your treatment.
posted by Mchelly at 10:51 AM on May 3, 2018 [1 favorite]

Eat well, and plan your meals, but avoid your favorite foods...chemo can cause taste changes, and you don't want to suddenly hate foods you love. Hopefully you have an iPad/book/puzzle/visitors/something to keep you amused, because the hours can be long during infusion. If you don't have a port, have them try your non-dominant arm so you have use of the other; they should always start low on your arm (like the back of your hand) first. Pack a lunch and snacks. Some of the drugs might make you sleepy, so try to get rides to/from. Emend is awesome and will help with nausea if it occurs; ask for a script (and maybe Zofran) and fill them if your insurance is decent. I was suuuuuper tired and slept a lot, but agree taking a walk is great advice. Tell your docs about the supplements you are taking as some can interact with chemo drugs. If you find an infusion nurse you like (or one you don't), it's ok to say I do or don't want him/her again if possible. Be nice to the healthcare providers. Do what they advise in terms of hydration/eating. Memail me if you want to chat in more detail/feel isolated.
posted by OneSmartMonkey at 10:53 AM on May 3, 2018 [2 favorites]

I was going to suggest a naturopath to find out about supplements to reduce side effects, but looks like you have that covered. (I know this sounds woo, but I researched everything he recommended, and it was all backed by peer-reviewed studies).

Nobody told me that drinking green tea would keep my chemo from working - I only found out because I googled green tea with my type of cancer. It turns out my oncologist did know, so maybe ask if there’s anything that might interfere. (I’m kind of incensed that no one mentioned it. If I’d gone out for Japanese food, the tea would have rendered the chemo worthless. And lots of cancer patients drink green tea for its cancer-fighting properties.) Memorial Sloan Kettering has a great website on herbs and supplements, including green tea, that tells you any contraindications. I always check it now. It’s here.

Also, some oncologists say diet doesn’t matter, and they give out candy at my cancer center. Radically changing my diet really helped with side effects. I had lots of neuropathy and my feet were so swollen, I had to buy new shoes. My doctor suggested compression stockings - I really, really hate even normal socks - I live in sandals unless there’s snow on the ground. Switching to a mostly whole foods vegan diet (so not Oreos and Coke) completely eliminated the swelling and I rarely have neuropathy symptoms now. Not saying you have to go vegan - just don’t underestimate the effect of eating healthfully.

If you’re up to it, read as much as you can on ways to help yourself. Oncologists are great at dispensing drugs, but there’s a lot they don’t really tell you about. I really like Life Over Cancer and Anti-Cancer: A New Way of Life. There’s a newer book sort of based on the latter that I’m reading now. It’s called Anti-Cancer Living and seems really good. It’s written by an integrative oncologist at MD Anderson.

The book The Cancer-Fighting Kitchen has suggestions for eating well when chemo messes up your sense of taste.

Plan to spend a ridiculous amount of time at your infusion center. I was told it would always be a minimum of an hour just in the waiting room because they don’t get the chemo ready until they weigh you.

I’m also finding the forum for my type of cancer at Smart Patients really useful for questions specific to my treatment.

Good luck!
posted by FencingGal at 11:02 AM on May 3, 2018 [5 favorites]

Lots of good info above. One of the specific taste changes that can happen is to make you (temporarily) very sensitive to sour/acidic foods -- so for things like orange juice, tomato sauce, etc., you may want to taste these carefully at first, till you find out whether this is an effect for you.
posted by the return of the thin white sock at 11:12 AM on May 3, 2018

Bring a blanket or quilt. I've heard a lot of people feel cold during the sessions.
posted by evilmonk at 11:20 AM on May 3, 2018 [1 favorite]

A nice warm blanket and/or robe. You don't want to have to rely on infusion center linens.
posted by praemunire at 11:33 AM on May 3, 2018 [1 favorite]

I went through chemo last year for breast cancer. What everyone said above about food is true. With the first cocktail I was on, I experienced a lot of nausea. I could handle only bland foods for a while (crackers, plain chicken, applesauce, rice).

If friends or family members offer to come sit with you during your infusions, take them up on it. I felt weird about it at first, but it was tremendously comforting to me to have people close to me there with me. They were more than happy to do it.

Also, take snacks and reading material or something to do with you. My cancer center had someone who came around and offered beverages and snacks, but not all will have that.
posted by smich at 11:50 AM on May 3, 2018 [1 favorite]

Sounds like my husband had the same regimen that you did -- six courses of once-every-three-weeks RCHOP for non-Hodgkins lymphoma. It saved his life. Here are a lot of thoughts:

- You mention transportation, but specifically, how are you going home after your chemo sessions? My husband is fanatical about public transit, but he was Not In A State to do that after the eight hour sessions, even if he'd been cleared to be in crowds (see immune system issues below.) So you will want to have either have transport lined up, or be ready to call an Uber or Lyft.

- You may end up having to get booster shots if your immune system takes it tough. My husband needed to be taken back to the clinic 24 hours after each chemo session. You'll want to line up transport for that, too, and plan on not being in crowds of more than ___ number of people.

- Have you had your port installed yet? If not, that's almost certainly coming with RCHOP. You may also need to arrange transportation for that, because you typically get sedated/local anesthesia, and they do not want to release you on your own power afterwards.

- If your sessions are eight hours long, I strongly recommend having a big-ass battery pack. Chemo places frequently have lots of extension cords/charging stations, but it can be hard to curl up while having your phone/tablet plugged into one of those.

- Also, a comfy blankets, good slippers that you can shuffle off to pee in, possibly an eye mask because the lights can be quite bright, a water bottle, unscented chapstick and lotion (chemo does funny things to the nose), and good over-the-ear headphones, all in a bag you can keep in a closet or somewhere else. I would not use the family heirlooms or your faves for any of these, because that way, you don't mind throwing everything away at the end of the chemo sessions if you start to associate it with chemo/have the PTSD-style flashbacks that are very common.

- If your sessions will be eight hours long (which it sounds like it might be if it's exactly the same flavor of R-CHOP that my husband had), bring food with you to snack on or have someone bring you lunch. There's a very real chance, though, that you may develop a very strong aversion to whatever you end up eating -- it's been two years, but my husband still does not want to eat trail mix or Dunkin Donuts. For about a year afterwards, he couldn't walk by a Dunkin Donuts without feeling ill. He can't eat croissant sandwiches anymore, and there are even people who plan their chemo-related aversions to be junk food that they don't eat/encounter a lot.

- After the third session, my husband's eyebrows fell out. Also the rest of his body hair, but nobody expects the eyebrows. Or the pubes.

- He got steroids after each chemo session. When he got them after his first session, he woke me up at 6 am the next day, saying, no joke, "Is this what it feels like to be Napoleon! I slept four hours, and I feel GREAT!" But the steroids did less and less each time. It's hard, which leads to . . .

- . . . My husband is a rule follower extraordinaire, and he was also really committed to chemo because I was wildly pregnant and he wanted to be around to meet our kid. Even with all that, he said that getting himself together to go to chemo for the fourth time was very, very hard. Apparently, he sat on the floor by the door for half an hour, unable to put his shoes on because he didn't want to go so much. So that's something to be ready for.

- In my husband's experience, the day of chemo, you felt generally OK, but not-great. The second day is worse. The third day is the absolute balls. As he progressed through the cycles, the absolute balls feeling went on for longer and longer, until by the end, he was basically just starting to feel like himself when it was time for another chemo session.

- If you are in the US, There Will Be Bills. If you feel comfortable doing so, see if you can get - your mother and sister to help keep track of them -- health insurance folks might not talk to them, but if they can even help organize bills/write checks/keep an eye on what has been paid and what hasn't, that can be a help.

- Food is tricky. My husband basically lived for three months on oatmeal. Every day before leaving for work, I'd make him a double-portion of oatmeal with honey and fruit, and sometimes he'd eat it and sometimes he wouldn't. I could sometimes coax him into eating super-fancy delicious yogurt made from the milk of very, very happy cows. I'm glad you have a nutritionist lined up now.

- Especially in the later rounds of chemo, my husband did not have the energy to talk to people, but he would also be miserably lonely and isolated. So sometimes, he would just lie on the couch while a friend came over and we would chat while I made dinner, and he'd just listen and Not Be Alone.

- My husband was on Zofran and a lot of other anti-nausea meds, but the only thing that would really help sometimes is to get two glasses, one filled with very hot water, and the other filled with super cold water. He'd take big alternating gulps, and the big temperature change/brain confusion helped blot out the nausea for a little while.

- Consider therapy after finishing chemo/whatever follow-up regimen is involved. For months afterwards, my husband had vivid PTSD-style flashbacks that would be triggered by seeing a food he ate a lot during chemo, or smelling hospital disinfectant.

Good luck, and may RCHOP be as effective for you as it was for my husband. If you ever want to talk to someone who also went through it, just drop me a memail, and I'll put you in contact with him.
posted by joyceanmachine at 12:14 PM on May 3, 2018 [12 favorites]

I helped my father through this a few years ago. The overall experience was much less dreadful than we had expected, and the results were good, so keep cheer.

There's one mistake I'd avoid if facing this again: his first chemo session was on a Thursday, so by the time he was experiencing some WTF? side effects it was Friday afternoon, and the whole medical system was in weekend mode. Everything would have been easy if only we could have talked by phone to one of the actual people who were involved with his treatment. But, being the weekend, the only advice we could get was "well, if you think it's an emergency go to the emergency room," which was worse than not-helpful. So, be sure to schedule the first round for a day early in the week, or get a phone number with a promise that someone useful (not just an emergency cover service) will be easily available to talk to you if needed.
posted by Corvid at 1:43 PM on May 3, 2018 [4 favorites]

It’s really true that you may end up associating something you love with chemo. I wore my favorite comfy shirt to every infusion, and when that part of my treatment ended, I had to donate it. I also brought a specific series of books to read, and I never want to see them again.
posted by FencingGal at 3:32 PM on May 3, 2018

I do not know chemotherapy from firsthand experience. From watching my dad on a real benign version of chemotherapy I saw it as a social experience. There were a lot of people that drove themselves, sat down, chatted with the person next to them - or did a crossword - or watched a movie. The people knew eachother and it sort of felt like a diner counter.

The other story I have witnessed is from the opposite end of the spectrum. Merrill Dubrow a former NFL player spoke at a corporate event a few years back. He was on am extreme treatment nicknamed Red Death... which generally wracks the body. One of the ways he could withstand the effects was he continued to train his body physically hard and drink a ton of water. Effectively you sweat out the painful parts of the chemotherapy. Since he trained, he did just that along with drinking a metric ton of water. This allowed his body to recover quicker from an individual treatment and increase the frequency of treatments... which while insane - given the pain he was in - he credited with saving his life.
posted by Nanukthedog at 5:58 PM on May 3, 2018 [1 favorite]

When my dad went through chemo, the thing that really surprised me was the depression that set in after it was over and he was declared cancer free. I think he felt extremely run down after and it shook him in a way he had never experienced. He had bad problems with having cold and numb extremities from the chemo and, since it was colon cancer, he was left with digestive issues. He was all geared up for the chemo and the fight and had a lot of support through it. When the chemo was over, he found that he still had a recovery to do and it was rough. I think he kind of wasn't himself for a year or so after. Be prepared to keep working on your health after your chemo is done. But my dad did it and I believe in you, too. Good luck.
posted by Foam Pants at 10:27 PM on May 3, 2018

My dad underwent chemo in his late 70s, and overall we found chemotherapy a fairly positive experience and less grim than we had expected from our (till then) limited exposure to the reality of living with cancer. My dad's quality of life was pretty good. He was retired by that point but had a lot of projects he was still working on which he still did, except largely via email and not face to face meetings etc. He watched a lot of TV and read a lot. He experienced some brain fog which meant that he couldn't really focus on the literary books he enjoyed reading: I remember he was trying to read A Brief History of Seven Killings at the beginning of his treatment and had to set it aside. He did a lot of light reading and finished much of the Song of Ice and Fire series during his treatment.

He was given anti-nausea and anti-emetic drugs to counteract nausea, and I don't remember nausea ever being a thing for him, although his appetite was affected. On the subject of foods that counteract chemotherapy, he was told to avoid grapefruit, Here is a link from Cancer Research UK which confirms this.

We instituted a no-shoes-indoors policy, had hand sanitiser in every room, and the rule was you had to wash your hands the second you came into the house. His doctor told us to wear face masks and give them to guests, but my dad hated his and never wore it. But everyone else in the house did!

I think what we as a family found somewhat difficult was the increased vigilance we had to pay to temperature (our doctor said even a slight temperature needed to be reported to the dr and could indicate that hospitalisation was necessary). I know dad found that kind of stressful.

Chemotherapy days were kind of nice actually. I would sit with my dad and work, or read, while he had his infusions, read, watched the news and napped. His were done as an inpatient, over 3 days, If possible, get someone to sit with you to chat with, take your mind off things, etc.

Best of luck to you!
posted by Ziggy500 at 3:06 AM on May 4, 2018

I helped a dear friend through a similar regimen several years ago so reading these posts was a walk down memory lane. One thing I didn't see mentioned was that my friend got an extraordinary amount of stupid advice from well meaning friends. It took her awhile to develop a standard non-committal response. You should prepare one now. "Oh thanks for the input. We are focused right now on following the doctor's instructions." Then don't give their comments another thought. Kombucha, crystals, positive thoughts, etc, are not going to save your life. Following the treatment team's instructions is going to do it.
posted by eleslie at 6:24 AM on May 4, 2018 [1 favorite]

My love is going through this now for a different type of Cancer. He's about to start the second round of chemo. Things that I expect to come back again this session.
Food issues. As everyone has noted, your tastebuds change. It was a struggle to keep him eating and drinking. He said everything tasted dull. He complained that his mouth tasted like metal. Cinnamon gum helped

Tiredness. About 2 treatments in, he started getting exhausted. He did continue to work but everyday came home and napped.

Depression. Besides the whole "I have cancer" thing, He lost the ability to do the things he loved and things he felt responsible for. He could not mow the grass, fix the little things around the house. Go out to dinner, Go shopping with me, etc. and he felt guilty for the load it placed on me and some days he was just a cranky asshat.

The smell. Chemo did weird things with his body odor, he also sweated when sleeping. soak the sheets type sweating.

Skin- Lotion. He hated lotion but we needed to keep the skin barrier healthy. We used Shea Butter. He never grew to like it but he tolerated it well.

Restlessness. His sleep schedule went off at the end of the last round. He would get maybe 2 hours of deep sleep a night, he would get up, pace, mess with his ipad, and catnap in 30min bursts.

I love him tons and I consider everyday with him a blessing. It is a rough road but so very worth it.
posted by ReiFlinx at 7:30 AM on May 4, 2018 [2 favorites]

Also, I'm not familiar with your type of chemo, but if you are having a port put in, there is a numbing cream they can prescribe you (I think it's actually over the counter) that you put over the port area about a half hour before they insert the IV (we used a plastic bandage overtop so it wouldn't rub off). It makes the IV insertion pain-free.
posted by Mchelly at 7:55 AM on May 4, 2018