Chemo Side Effects - Hints & Tips

Feeling like a pro after 4 cycles of Docetaxel, Carboplatin, Herceptin and Pertuzumab, I thought I'd share a few things I wish I'd known before chemo started to help me manage it more effectively from the start. My first piece of advice is - Don't Panic!   When my oncologist told me about chemo side effects I decided this was worse than the cancer itself, but it's really been very manageable for me.

The IV Treatment Itself

Honestly, mine takes 6-7 hours and it's boring!  Bring stuff to do whilst you're sitting, but remember that one hand is likely to be out of action as the cannula for the drip needs to stay relatively still.  And wear leggings....you end up going to the loo a lot, whilst still attached to the drip, so managing one handed is a challenge with zips and buttons.

General Preparation

• Invest in a good quality ear thermometer as watching your temperature for infection is key
• Keep a diary of symptoms, not only to share with your oncologist as they will ask, but as the side effects do seem to follow a pattern and it's really useful to check back on what happened last time
• Note down when you take your meds. For me my menopause memory means by 11am I have no clue if I took my morning tablets or not!
• Exercise, and I really mean walking not running a marathon, helps me. Even when I have felt tired, a 15 minute walk has left me feeling better, which is counter intuitive but seems to work so I will take it
• I've had a fair few nights of restless sleep, not found any magic solutions to that yet, sorry!
• Distractions work for me. I have continued to work through treatment and I have definitely found when I am focussed at work by default I manage my side effects better as I am simply not thinking about them
• The first few days after treatment tend to be ok for me, a bit of a false sense of security. Days 4-6 are my worst and by Day 13 everything is really normal again.  Now when I say my worst days, I am still working full time and fully functional, so truly nowhere near as debilitating as I thought it would be 
• I find I am generally quite cold now, which is unusual for me, so something to be prepared for

Sickness

• So, I made the mistake of following the instructions on my anti sickness meds as they said “take when necessary” so I waited until I felt sick!  Big mistake!  Now I take these from the evening of Day 1 as a precaution and whilst I have a little nausea, I take the tablets for 5-6 days until I am sure I don't feel nauseous at all.  
• Also, I keep them by my bed so I can pop the first one of the day as soon as I waken
• I also spread out the times, so rather than with each meal, I take first thing, around 3pm and bedtime, so I have a better chance of getting through the night without feeling sick
• Finally, there are different types and brands of anti sick meds, so try different ones if the first set aren’t working as people do respond differently 

Indigestion and Heartburn 

• I take Gavison from time to time as indigestion is a minor problem
• During cycle 1 I had horrendous heartburn, I mean “call the emergency doctor on a Saturday as this pain in my chest is killing me” heartburn!  Anyway, turns out I wasn't having a heart attack and a simple daily Omeprazole tablet, throughout my entire treatment, has magically solved this
• I take Omeprazole twice a day for a few days after each treatment just to mitigate this 

Hair Loss

• I found when clumps fell out (Cycle 1; Day 10) it was quite distressing. I persevered for a week or so but then so my lovely hairdresser came to my house and shaved it for me
• It's worth booking an appointment for a wig fitting, my hospital cancer dept gave me a contact for this and the ladies who own the small wig company were brilliant. I tried lots of types and styles and had my daughter on FaceTime for the whole thing to help.  It was actually a lot of fun and I went for a very different look
• It is worth thinking about what to say when someone comments on your new hairstyle. I was caught out by a colleague who didn’t know about my diagnosis, leaving me a little flustered and him quite apologetic.  Now I either accept the comment and move on or, if I want the person to know, I tackle it up front myself
• On the plus side, I haven't had to shave my legs or underarms for weeks

Sensitive Mouth and Weird Taste

• Each cycle I suffer for about 10 days or so. It is hard to describe, but my taste buds respond more sensitively, so food tastes extra spicy, or extra strong.  Wine becomes hideous with an overly strong tannin taste and mild chilli is too hot to even contemplate. My mouth also gets very dry and chalky.
• Pineapple was recommended to me and pineapple juice tastes ok and flavoured tonic water works quite well 
• I have avoided everything except really bland food for this period
• Salivax Plus pastilles ease the dry mouth, especially at night and boiled fruit sweets are quite good during the day
• I bought some ultra sensitive toothbrushes on Amazon and Listerine Coolmint mild mouthwash (but even that tastes really peppery)
• i use mouthwash during this time and so far have only had a couple of mouth ulcers, nothing more serious thankfully 

Poop (sorry, but I can't avoid it)

• My particular cocktail chemical causes both constipation and diarrhoea (see blog post A Balancing Act) so watching and managing both is critical for me
• I keep a note of each time I poo, and if it's loose or not
• I drink lots of water, I mean lots!
• When I sense it's getting too loose and too frequent, I start Imodium morning and night, and also after each loose poop and then if I don't go for 24 hours, or if it gets stiff, I stop the Imodium 
• I also have a stock of laxido in case it goes the other way
• The cancer nurse (bless them, I think 90% of their daily conversations are about poop) told me to watch for overflow, so just a leakage which is a sign of constipation, but I have not experienced that (yet)

The Nose - it runs and it clots

• Stock up on tissues (or buy shares in Kleenex) as hair loss means nose hair loss, so mine runs constantly 
• A daily antihistamine helps to some extent
• Vaseline at night has helped mean it doesn't become too crusty and sore

I hope my experience helps anyone else be a little more prepared and feel a little less scared than I did a few months ago before it all started!