Chemotherapy for newbies

Welcome! In this episode I'll go over my experience of receiving chemotherapy for breast cancer treatment. Chemotherapy differs from other treatments in that it is highly personal - while there are similarities in the drugs taken, each treatment is calibrated to the individual patient, and everybody responds differently to the drugs. So I'll focus less on my reactions to the treatment and more on outlining some general steps to inform you as you travel this path as a patient or supporter.

Note: I live in New Zealand, and treatments differ from region to region, as well as being different in different countries. Your medical team are the ones to ask about your treatment plan, not randoms on the internet like me! 🙂

How did I decide to have chemotherapy?

In my case I wasn't a clear yes for chemotherapy's benefits outweighing the risks, so I opted to pay for Oncotype DX testing, to know for sure if chemotherapy would be helpful to me. (Currently this isn't publicly funded in NZ, although apparently that is on the way). This testing is helpful for early-stage breast cancer patients with estrogen-receptor positive, HER-2 negative tumours to conclusively determine chemotherapy usefulness. Unfortunately the results showed that the cancer was a high risk one, but that chemotherapy would be very effective. So, I opted to do the chemotherapy.

What is chemotherapy?

Essentially, treatment with chemicals - a.k.a. drugs. In the case of cancer treatment, chemotherapy targets and kills cancer cells. Depending on the individual's treatment plan, chemotherapy may be done before other treatments (neoadjuvant) or after (adjuvant). As much as I hate to encourage you to visit WebMD, this page actually explains things really clearly. In my case, I had surgery first to remove the tumour, and so now I'm having adjuvant chemotherapy to "mop up" any rogue cancer cells in my breast or elsewhere in my body before they can grow into tumours and spread.

How does chemotherapy work?

Essentially, chemotherapy targets cells that are dividing - which is what cancer cells do ceaselessly. Most cells in our bodies don't divide unless they need to repair damage, whereas cancer cells are busy wee bees, constantly dividing and growing into tumours. So by targeting this behaviour the cancer cells can be identified and wiped out. However, there are some cells in our bodies that do quickly divide - like hair and the lining of the digestive tract. Chemotherapy can unintentionally affect these cells, which may lead to the commonly-known side effects like hair loss and nausea.

Cell division in action

Oh yeah, side effects...

There are myriad of chemotherapy drugs, used in endless combinations and delivery methods. Not all people who receive chemotherapy will lose their hair or feel sick. It is impossible to predict exactly how someone will react to chemotherapy but there are really good supporting drugs these days to keep nausea and other side effects at bay. In my case the drugs are pretty much guaranteed to cause hair loss, but we are well supported in NZ with subsidies from the government to pay for a wig, if you choose to take that option.

So far I've only had one round of chemotherapy and while it wasn't great and I definitely knew something HUGE had happened to my body, I tolerated the anti-nausea drugs well enough that I didn't feel sick, so that was a relief. Hopefully this means I'll continue to tolerate treatment well, and I'm expecting to be able to work a few days here and there.

How long will this last?

My treatment plan is as follows. Please be aware that this is specific to me and not an indication of any one else's treatment plan or drug combination.

• 3 months of 3-weekly infusions - this is the drug combination known as "AC Chemotherapy", then I'll switch to:
• 3 months of weekly infusions - this is the drug called "Paclitaxel"

How is it administered?

It can be given either intravenously or by taking tablets. In my case I'm having intravenous "infusions" which I need to go to the hospital for. It's all very chill there, everyone is friendly and caring, and I sit in a lovely comfy chair and read and eat sandwiches one-handedly. Before I start I meet with my SUPER LOVELY oncologist who goes over blood test results and any side-effects and makes sure everything is as expected. Then through to the infusion room with about 6 of us patients plus support people. Blood pressure and other readings are taken then an IV line is put in to my hand and the drugs are dripped in.

The red-coloured Doxorubicin meandering into my vein

How do you prepare?

Prior to the Oncotype testing I met with my oncologist twice, and after the testing showed we needed to proceed with chemotherapy we talked on the phone to tee up arrangements. A prescription was sent to my pharmacy for all the supporting drugs, and I must admit to a few tears when picking them up. I was expecting to pop in and grab the bag, but one of the drugs is an injection that needs to be stored in the fridge, so my very caring pharmacist came out to talk me through it. It was the day after I'd learned I needed to do chemo and I was obviously still a bit wobbly so ended up in a bit of a puddle. Oh well, they were very nice about it and I'm learning to embrace public tears now.

I had a home visit from the local cancer nurse who went through everything we needed to be aware of and outlined the most common side-effects and how to handle them. She was excellent, and we felt really well-informed after her visit - and not freaked out. It's a hard balance to prepare people without frightening them and she did it brilliantly. We arranged for her to visit the day after my infusion to give me the fridge-dwelling injection - this needs to be given 24 hours after the infusion to help stimulate white blood cell production.

Chemotherapy affects the white blood cells and the immune system so we need to be aware of my temperature as any infections can become serious with a lowered immune system. There are good systems in place to deal with this 24/7 and I have a special card that'll get us priority treatment at the A&E - so fancy!

I started a notebook with checklists, drug tables, info, and space to write notes about each day. The medical team need to know about any side-effects so they can adjust drugs accordingly. They made it very clear that nausea need not be tolerated, and I didn't feel sick at all. I felt very ODD, and I could feel a ghost of nausea. It was like I could feel I was nauseous but I wasn't experiencing the sensation of it. Or something. Like I said, odd.

I bought things I thought might be useful to have on hand and I'll list them below. I was doing the Couch to 5 km programme and managed to do the final 5km run the morning of my first infusion. It felt great to get that under my belt, and I'm doing yoga and walking most days to keep my physical and mental health on track. Even if I feel really tired I appreciate getting outside for a slow wander around the garden, and sometimes "doing yoga" means five minutes doing cat-cow and no more.

We tend to eat pretty well generally, but I've been really aware of getting as much whole-food nutrition in as possible. I'm a bit of a chocolate fiend so am keeping my quantities low and quality high. My main job for these six months is to get good food in, get good rest, get exercise when I can, and keep my outlook healthy. I was going to say "positive" but I'm honouring the fact that I do get angry at this situation, and I get down too. I try and express and work through these emotions when they come rather than force myself into a positive state. Generally I tend to look for the joy in things, but that's not always possible at the moment, and that's ok.

Not our actual pantry

For subsequent infusions I'll need a blood test a few days beforehand, so we can keep an eye on what's happening and adjust the drugs accordingly. I also need to get repeats of two of the supporting drugs, as they don't hand them all out at once. And that's it really - I'm feeling well two weeks after the first infusion and am pretty much living as normal, except I'm avoiding crowds and sick people plus being careful not to injure myself as my immunity is low. Also I go to bed waaaay earlier than I used to and I get tired easily. But I love a good nap so that's ok.

I've seen you talk about "Round 1 Day 3" on Instagram - what's that all about?

For this first three months I'll have 4 infusions - which I'm calling "Rounds". As I have an infusion every three weeks, there is 21 days in each round. In the first week the day number really matters, as I have to take specific drugs at specific times on specific days. I also have to be super careful of my bodily, umm, excretions, as they can contain chemotherapy drugs and are toxic for the people and pets around me. Day 1 is the day of the infusion, Day 2 the next day and so on.

Ok, that's a lot... anything else?

There's weird stuff to be aware of:

• I have to blow my nose carefully so as not to cause a nosebleed as blood clotting ability can be affected
• I have to close the lid and double-flush, then wipe down the seat EVERY TIME for the first week - this is so excreted chemotherapy drugs aren't flying around the bathroom
• I can't take Panadol as that reduces temperature, and temperature is a super-important marker of infection
• With low immunity, people often don't show normal signs of infection - hence the obsession with temperature
• The Doxorubicin drug has the nickname "The Red Devil", but the medical folks don't like me calling it that!
• I was suuuuuper brain-foggy the first week - although I wasn't sick there was no way I could work or drive
• In the first week I was incredibly thirsty and hungry - I drank gallons of ginger tea and ate 6-8 small meals a day
• I have to avoid the sun FOR A YEAR as it can cause a reaction and a rash😞
• Avoiding spicy, crunchy, and very hot or very cold foods is recommended for at least the first week so as not to cause damage that can lead to a mouth ulcer
• I had cravings for things like creamed corn and fruit salad (not together!), and my partner got up at 6am to prepare tea and (not crunchy) toast to shove into my face as soon as I woke up as my tummy felt Decidedly Odd without food in it at all times

Needful Things to have on hand

Remember, everyone is different so you'll probably not need all of these, but if you can afford to purchase beforehand you'll be sorted for many eventualities. Also gift ideas for any chemo-receiving friends.

• Lip balm - dry lips are common and lip balm is awesome
• Bonjela - good for mouth problems and reportedly also good for sore scalp once my hair falls out
• Rescue Remedy I was pretty anxious leading up to the first infusion and found this helped
• Electrolytes - in week 1 I had a tablet in a glass of water as soon as I woke up as I felt dehydrated
• GinGins - good for settling the stomach in week 1. Also I LOVE ginger so these are amazing for me
• Ginger tea - as above - I also add chopped up fresh ginger root
• Peppermint tea also good for tummies - I add fresh peppermint leaves as it grows like a weed outside
• Coconut water - helps to keep things moving but gentle on the stomach - it's not good to be constipated as you need to move the chemo residue out of your body asap
• Salt and baking soda mix - make up a 1:1 mix and mix a tsp in a glass of water to gargle with 4 times a day for mouth health in at least the first week - update: I kept this up the whole time and never had a problem with ulcers.
  
• Lypo-spheric Vitamin C - this is supposed to be the shizzle for Vitamin C but is spendy - shop around or just buy normal Vitamin C - powder or liquid might be easier on an unsteady stomach
• Lavender and Frankincense oil - I had these going in my diffuser most days - calming and cleansing
  
• Fragrance-free moisturiser for face and body
• Sunscreen, hat, all the sun-avoiding things - a sun rash is the last thing I need right now
• Magnesium with lavender cream - I rub a little onto the soles of my feet at night to help me sleep - the soles of our feet are good places to put medicated creams for quick absorption, plus it's nice to give our amazing feet some love!
• Acidophilus yoghurt good gut bacteria plus helpful if you get oral thrush
• Eno / Quickeze - I found I had an acid stomach once I started eating normal sized meals less frequently in week 2

Thanks for reading along!

I hope this was informative, and don't forget that everyone's treatment is different, everyone's dosage is different, and everyone's reaction is different. What worked for me may not work for you, and your medical team are the absolute best people to give you advice.

Go easy on yourself, rest, ask for help, accept help when it arrives, and you have my permission to be rude to people who tell you to "stay positive!" 🙂. Public Service Announcement: please don't tell cancer patients to "stay positive!", just support them in whatever mood and state they are in at that moment. If you are supporting someone through chemotherapy, know that moods and physical symptoms can change on an hourly basis and you just need to ride that rollercoaster with them.

For all those wonderful folks supporting me and others through chemotherapy THANK YOU AND WE LOVE YOU. Now bring me more toast. xx