I searched a lot for R-CHOP information before I started on it, and there was plenty here and elsewhere, but I’ve since had a few experiences/symptoms I didn’t see mention of anywhere. I thought I’d share those here in case they’re of help to anyone.

Please remember these are solely my experiences and, as we know, everyone reacts differently.

For background, I’m 41, male, previously healthy and have no history of non-Hodgkin lymphoma in my family. The cancer is in my upper chest and lower neck. I was on R-CHOP from October 2018 to February 2019, 6 doses over 12 weeks.

I’ll break it into sections, and start at the top. Sorry if it’s overlong.

Hair

Was told I’d lose it all, and I did. I cut it all very short before I started treatment, just to get used to it, and I’d recommend that for a man. Hair started coming out all over my body 13 days after my first dose of R-CHOP - got a handful in the shower. All gone by about 10 days after that, though I shaved my head bald first. Started to grow back slowly about 8 weeks after my final dose of R-CHOP (head hair grew back fluffy at first, but more normal after a couple more weeks).

Truthfully, I found the hair loss easy to deal with as a man - there are lots of bald men about and you don’t spend much time staring at them.

Eyes

Became quite sore during the treatment; they felt dry even though they were watering regularly. Was told this can happen, but there’s nothing other than over-the-counter drops to combat it. Found this very frustrating but once treatment stopped it went away.

Nose

Found breathing at night easier for some reason, having had dodgy sinuses for years. It has made my nose run a lot and that’s still the case a few weeks after my last dose. Use cloth handkerchiefs, washed often, to save money and spare the environment.

Mouth

The most pain of all was from the mouth and tongue sores. Always began about 5 days after a dose, and lasted for about 5-7 days. Definitely helped when I was given mouthwashes at the hospital - a green one and a pink one, and the pain was a lot less when I started on these.

Chest/cough

Cough gradually reduced as treatment went along, which I guess was the whole point! I was coughing up blood before treatment but that stopped almost immediately after treatment began (they said the steroids had likely reduced the swelling causing it).

Heart

Noticed a lot of heart fluctuations, and these were worrying at times - heart beating hard and irregularly, often at night. But it’s stopped since the treatment ended and no harm seems to have been done. Maybe it was the steroids, but that’s just my theory.

Stomach/diet/weight

Was told the steroids might cause me to put on weight, but the opposite happened and I lost a stone and a half. However, I was overweight (15 stone at 5 foot 11) and did use this period as an excuse to eat better and drink less. My assumption is it can go either way, you just have to manage it as best you can.

My digestive system as a whole feels better and more regular for it, though again that might be because I’ve forced a better diet on myself during this period (never had so much spinach and kale). I certainly feel better for having done so.

Hands

Had an awful problem with my hands being dry and peeling. At one point around my third dose of R-CHOP my palms got incredibly sore, a bit like a bad sunburn. A few days later they began peeling, which lasted the rest of the treatment and a few weeks after. They gave me some steroid cream specifically for my hands but it didn’t have much effect, and standard moisturiser did nothing (apart from easing the pain of dryness a little).

My fingertips became numb around four weeks into treatment and they’ve not yet fully recovered weeks later. The tips often looked wrinkled like I’d just got out of the bath.

Bladder

Sometimes needed up to four or five leaks during the night. I don’t know if that was due to the R-CHOP or the increased water take that they consistently recommended throughout.

Legs

Cramp in the calf muscles was a problem; increasing my water intake helped relieve it.

Nails

My fingernails were fine until just before my final dose, about 11 weeks in. Then they started turning yellow and deforming a little, and this was hard to take as it looks pretty nasty. They’re still like it now I’m sorry to say and I can offer no advice. My toenails were not affected at all.

Nausea

The thing I was most fearful of, but I got away with it. Didn’t feel sick during or straight after each dose, and wasn’t sick at all between doses (didn’t vomit once and was never in serious threat of doing so). Would often get a feeling of indigestion, a little like trapped wind - perhaps that was my version of the sickness. Took domperidone as instructed, but was also given ondansetron and didn’t have to take any of it.

Tiredness

From about 8 weeks in tiredness started to get slowly worse, but it was never enough to stop me getting around as necessary. I made sure I got 8-9 hours sleep a night and I think I’d have suffered a lot more without that.

But bodily weakness and low energy was an issue - a combination of (a) not being able to exercise, leading to a loss of fitness (I was of average fitness before, but no athlete), and (b) my red blood cell count dropping, leading to symptoms of anaemia from about 8 weeks in. I was given ferrous sulphate tablets for this, to supplement the daily injections, and I think they helped but not hugely. (Those tablets make your crap turn black, incidentally.) Head rushes were and remain a problem for me.

Avoiding infection

Happily I didn’t catch anything. I avoided rush hour travel completely, and any large group of people in a confined space. As examples, I stopped going to gigs in London but I continued going to the football, because it’s outdoors and seemed a tolerable risk, and it’s important to keep having a life. I carried on going to the pub with friends but made them tell me in advance if they were ill (one of us would have to not go). I got pretty good at spotting people with red noses and giving them a wide berth.

Alcohol

I was told that alcohol would have little impact on the treatment but to only drink in moderation. I’m a fan of a session, but more than a couple made me tired and I didn’t really feel like going overboard with it - just didn’t seem worth it. People will tell you to drink Guinness for the iron, but you’d need to drink 30 pints a day to get your recommended daily intake of iron, so I’d stick with the tablets.

Summary

Hair loss I quickly got used to; nail yellowing I still hate now. Mouth sores hurt badly but mouthwash helped a lot. Sore, dry hands painful and creams and gels did little. Increased sleep made tiredness manageable. Daily medication kept the nausea at bay. Weight changes required careful management. And cancer should be no barrier to a social life.