I’m starting radiotherapy next week .

Hi Kat.46 Ive attached a link to a post from a while ago about chemoradiotherapy which may be of interest.and I’m also going to tag Arsey and Mags56  (hope you don’t mind ladies) who’ve both been through it recently.

 Radiotherapy care top tips ! 

The side effects can build up over time so you might feel more tired as the treatment progresses but I found it to be pretty tolerable. They will give you a cream to use on the area being treated and check that you have no soreness. I was 53 when diagnosed so might have already been in the menopause - I’m not sure if I’m honest. 

Great idea to focus on each stage at a time and we can link you in to our chemo top tips page nearer the time.

Hope it all goes well

Take care

Karen x

Hi Kat
Happy to try and answer any questions you have using my own experience, but I did 25 days RT with capecitabine tablets, then 6 rounds of Capox chemo. 

The RT was tolerable, I did what I was told, moisturised the area and beyond, using products that were recommended, so I used Aveeno.  For any very sore areas, the RT team gave me prescription gels and products and pain relief and anti sickness pills if I needed them.  I didn't need the anti sickness pills or the painkillers, but I guess we are all different and if you are doing 5 days, then perhaps you are getting a higher dose. I did use the RT burns cream though.

The actual procedure was pretty easy, the worst bit was the wait each day as there were always delays and you need to hold a certain amount of water in your bladder.

Keep hydrated. Pee lots.  SHout if you think you get cistitis and take a wee sample with you if you have discomfort weeing, they can dip test and sort you out.  Only happened to me once and it was clear and sorted itself out.

Don't eat fibre in the five days or for the planning scan as you need to be free from gas or they can't do it - you'll be sent to walk the corridors and fart it out.   Not eating fibre, this was very hard for a vegetarian who grows their own veg and it was all cropping while I couldn't eat it.   Windeeze tablets help if it is a thing for you or if you just don't want to take the chance of any gas build ups. 

I had regular reviews with the team during my 25 days, so I'm not sure how that will work with you doing the 5 days. 
The effects are cumulative, you will probably feel tired.  If you feel sore, then a sitz bath that fits over the toilet is great for sitting in (fill with warm water).  My RT peeps had some that they could lend out, but I'd already got one in preparation, I only needed it a handful of times though, but it did sooth.

After about the first week, I started to poo out bits of tumour as my reviewer had told me.  He also said that those that had issues with bleeding before they started RT, often found the RT stopped that.  It did after a few days - that was such a relief!   Those that don't have bleeding often start to get it during RT.  Now I doubt that is written down anywhere as a fact, but it came from an experienced RT person. 

57 at diagnosis and firmly menopausal, so this wasn't a thing that was flagged for me. 

Great attitude to have with taking it one step at a time.  That will get you through. 

I hope all goes well,

Zx

Hi

thanks you so much for the reply it’s great to hear from you about your experience. Very helpful for me. I’m not sure why only 5 days of radiotherapy was recommended for me at the time I didn’t know anything about this and didn’t ask my doctor. But I have a date 15/7/24 - 19/7/24 my radiotherapy then my first chemotherapy appointment is on 5/8/24. As well today I revive the letter that I have appointment on 2/8/24 to insert PICC line and it will be around 2-3 hours. Did you get yours inserted as well? Is it for the IV chemo to be placed ? Thank you very much.

Hi

thanks you so much for the reply it’s great to hear from you about your experience. Very helpful for me. I’m not sure why only 5 days of radiotherapy was recommended for me at the time I didn’t know anything about this and didn’t ask my doctor. But I have a date 15/7/24 - 19/7/24 my radiotherapy then my first chemotherapy appointment is on 5/8/24. As well today I revive the letter that I have appointment on 2/8/24 to insert PICC line and it will be around 2-3 hours. Did you get yours inserted as well? Is it for the IV chemo to be placed ? Thank you very much.

Hi

thank you very much for all the tips I will be asking the team about the cream and dialiators hopefully it will go fine. All my appointments are in the afternoon so I’m expecting to be late home after the procedure. Thank you very much again such a big help.x

Hi Kat.46 You’re very welcome. Yes the picc line is for the iv side of the capox. The fitting is a painless procedure - they numb your arm, make a tiny nick and insert the tube. I then had to go for an X-ray to make sure it was correctly in place. It’s then taped down really well and then another dressing is put on over the cannula bit which is then removed and redressed at each session.

You cannot get it wet so they will hopefully give you a prescription for a limbo arm which is a plastic sleeve with a rubber seal at each end so you can shower. 

For me the worst part of the iv was the tingly arm which got worse after each session and reduced me to tears - like being thrashed with stinging nettles. The picc line solved this and bloods can be taken out too - it was a game changer for me

Take care

Karen x