Starting chemo

Good Afternoon PMT. 

I am sorry you are going through this but it is doable. 

I had 16 rounds last year, 4 EC (3 weekly) and 12 PC (weekly). The actual Chemo day I found was very relaxed and routine, the nurses were great, stay very close to you are will take good care of you. EC gives you pink pee that’s a bit odd to see straight away. You will be given a goody bag of drugs to take home that help with the side effects. Personally I had no sickness, I did have some tummy issues but mostly fatigue, Chemo brain and restless sleep. I was given steroids for the first few days after, these help with the side effects and you should feel fine for the first few days, my side effects kicked in after this, although I did have restless sleep and mood swings and flushes from them. I also cold capped so kept a good lot if my hair, although it thinner and I had my long hair cut short. 

What Chemo are you having? 

Hi Pmt

Welcome to the forum and sorry to hear that you have been diagnosed with breast cancer and need chemo.

Make sure to bring something to keep yourself occupied while you are on the chemo ward as you can be waiting for a while to start.  Chemo can take three to four hours depending on whether you are cold capping to prevent hair loss.  Make sure that you drink plenty of liquids as it can help prevent side effects.  If at anytime you feel unwell while you are receiving chemo on the ward don't hesitate to let your chemo nurses know as they can adjust things for you.  To help prevent mouth sores use a mouth wash that doesn't contain alcohol or make up a solution of warm water and salt everyday and rinse out your mouth with after every meal.  Also make sure you have a soft toothbrush to brush your teeth with after every meal.  Try and get out in the fresh air at least once a day as exercise can help prevent side effects.  Take your anti-sickness tablets at least once a day for a few days to help prevent sickness.

Wishing you the best of luck with your treatment.

Best wishes

Daisy53

hi Harrigoose, 

thank you for your reply. I hope you’re feeling better now. Well done for getting through it!! I’m having the EC x4 every 2/3 weeks then Pactilaxel x4 cycles. I was also thinking to have the cold cap but I’m not sure how great the results are. Did you hair thin in patches? Was it painful and was the process worth going through? I’m thinking of getting a wig.

Hi Daisy thank you for your reply. I will take notes of your advice I’m really dreading chemo but knowing these things will help . Thank you for your best wishes. 

I had 4 cycles of EC and 12 weeks of Paclitaxel last year (May to October). Everyone reacts differently but once you have been through one cycle, you get a good understanding of what will happen and are better placed to anticipate it. It’s definitely worth keeping a symptom diary. Biggest issues for me were stopping them loading me up with too much anti-sickness drugs (I had no sickness but the drugs caused constipation); not sleeping when on steroids, loss of taste for some of each cycle, and aches when using Filgrastim injections. I found EC easier than Paclitaxel but a lot of people are the other way round. I tried cold capping but my hair came out anyway. My top tip would be to buy some Polybalm to protect your nail beds, and if you start to get peripheral neuropathy, tell the team about it. If you let it go too far it can become permanent. 

Hi Coddfish

thank you for taking the time to reply and well done for getting through your treatment. I hope you are feeling better now.it looks like hearing from yourself and others that side effects vary so I will have to wait and see how I react and I think that’s what’s worrying me I have children and I don’t want them to see me so unwell. I’ve been thinking about the cold cap too and have requested it but I’m not too sure it’s with going through the extra hours in hospital and the pain and side effects. I’m thinking of getting a wig . 

Hi, 

I found EC harder in reflection but had more time to recover from treatments, I personally didn’t take any anti sickness and I only felt slight nausea once. But listen to your body and your nursing team, they have your back.  I cold capped throughout, it’s not easy, adds a little time to treatment but I am glad I did it. I took a paracetamol before going. I lost about 60 % volume of hair but apart from bald patches behind my ears it was even. It started shedding about 2 weeks after my first EC, that was hard to go through but it did slow down. Cold capping enabled me to go longer after starting before I needed a head covering and I either a bandana or beanie with some hair to frame my face. I almost gave up as it was quite thin however it started to grow back when I was on pc. So I stuck with it and had my long hair cut into a pixie cut when the roots thickened up. Im now 4 months out of chemo and have a thick head of hair, short with some curls but probably 6 months ahead of what it would have been had I shaved it. I did have a few wigs but with the summer heat and not much confidence I never wore one out of the house. I may have felt differently had I been bald though. I really did want to play with styles but never embraced it. 

You do lose hair everywhere and my eyebrows and lashes were last to go but came back shortly after finishing. 

I am left with side effects now, but hopefully they’ll all subside over time. One hurdle at a time. 

I felt in safe hands with my Chemo team and once treatment was underway felt much better and more like I was fighting back. You will do this. Xx 

What is peripheral neuropathy? Thanks just curious just in case. X

Its numbness and tingling in fingers and toes due to nerve damage from the paclitaxel. It can also make your nails feel sore. You can use cold gloves and mittens to limit it. You need 3 sets of ice packs per paclitaxel chemo and a good cool bag with ice blocks to keep them frozen. You have to change the ice pack every hour as the gel packs melt quite quickly.

I agree with everyone else -the anticipation is worse than the reality. You will know how it works for you after your first one. Everyone is different but someone will have had whichever side effects you have, so there is plenty of advice here. If you are bothered a lot by something call the chemo nurses who can help you now rather than waiting for your next chemo.

The main thing that surprised me was just how much I slept, but at random times of day or night! Drink plenty of water in the two days before chemo, on the day and after in order to flush out the chemo and avoid headaches. And use plenty of unscented moisturiser as chemo can make your skin dry. Other than that, I really hope it is OK for you on Monday. The chemo nurses are lovely and really put you at ease.

Hi @Pmt   I was given a leaflet when I started chemo which included a table on the effectiveness of cold capping by chemo drug and hair type. I knew before I tried that I would struggle with very fine, straight hair and EC. I hated the period when it was falling out but I was trying to preserve it. Not able to wash it properly, it looked a mess anyway. I felt much better once I had clippered it short. I found wigs ok for special occasions but not normal life - much too hot and itchy. I generally used a headscarf. It started to grow again once I switched to Paclitaxel but it’s gone completely white. My son (aged 33) says it’s a strong look.