Chemoradiation & steroid advice

Hi PrettyPinktoes yes I am 10 days post chemoradiotherapy and will tell you where I am at. I am suffering from moist desquamation which is weeping radiation burns around the anus and vaginal area. Before treatment I read about the StrataXRT and spoke to my oncologist about using it and she had never heard of it but said she would look into seeing if the radiotherapists would be happy for me to use it. It is expensive and the nhs will not provide this. I went ahead an bought it and you can put it on after your shower and can be left on even during treatment. The one disadvantage I found was as I developed radiation cystitis which meant I frequented the toilet more often and you have to clean and reapply. I got into my fourth week of treatment and my skin was holding up pretty well and going into the fourth week the area was starting to turn red. I contacted the company I purchased it from as the large tube is supposed to cover the five and a half weeks and beyond. You are supposed to apply it twice a day and leave on for twelve hours then reapply but I think the genital area is awkward because of toileting needs and you have to keep applying it. I found it didn’t sting and easy to apply but I had to purchase another tube. The area they say it covers to do so many days is not enough in one tube. If it was the neck then it would probably last. That said, I asked my oncologist if she thought that the strataXRT held my skin together better than the products they reluctantly provide I will add, and she said she couldn’t say as everyone is different and not all get it.  From finishing my treatment and continued using the strataXRT has not prevented me from getting very sore burns that weeps pus which I am told is normal. They then gave me a gel called flaminal forte which is for desquamation of the skin. So I think it is convenient and non stinging and hopefully held my skin together for longer but did not prevent the breakdown. It cost over £200 to cover probably seven to eight weeks due to the constant reapplying. I hope this helps with your query.

Thank you so much for your detailed reply. I thought one tube might not be enough as I imagine the need to rinse with water when going to the loo etc will all have an affect on reapplication. I’ve found a UK based distributor for £116 for. 50g tube so will purchase 2 to cover the 5 and half weeks. Better safe than sorry! 

I’ve seen two versions of the Flamigel mentioned so I’ll also look into those. My treatment is all private so having to pay for all this anyway. 

i really do appreciate your prompt reply and I wish you all the best with your recovery. 

Hi Prettypinkroses Jaycee12  has given you some good advice about radiotherapy. Just to add  that you can get a sitz bath/bidet bowel, which is a special bowel filled with water that you can put in the toilet to relieve the pain of going to the toilet during your treatment.  You may suffer diarrhoea or constipation but there are medications to help with that.  In relation to the chemo, it seems to be mostly pretty well tolerated. I felt sick a couple of days after the mitomycin infusion and that lasted for about 1 week. I took anti-sickness tablets and they really helped. Apart from that there were no other side effects of the chemo. Just make sure that if you do have any side effects that you let your treating team know. There are also lots of different anti nausea medications so if one doesn't work so well there are also others you can try.  Bev 

Thank you Jaycee for your reply, so appreciated! I’ve ordered a sitz bath and a bottle for when using the loo. 

My oncology team are ready with all the various sickness meds as I get nauseous really easily. 

Hopefuliy we’ve got this covered! 

thank you!!!!

Hi Prettypinkroses, it’s great that you’re occupying your mind with prep rather than worries!

It’s useful to have a thermometer while you’re on chemo since if you’re unlucky enough to get a high temperature, you’d need to let your team know immediately.  Here’s the one I bought…

https://www.amazon.co.uk/gp/aw/d/B08DFGD4P7/ref=ya_aw_od_pi?ie=UTF8&psc=1

Also nice to have sweets - I bought so many trebor strong mints that it caused a local shortage lol.  Others recommend boiled sweets.  And I think Nikki65 already suggested batch cooking simple easy-to-eat meals for your freezer for days you don’t feel like cooking.  I’ve never had so many cans of lentil soup lol, amazing I still like the stuff  x  toni

Hi Prettypinkroses,

You've had some great responses already, I personally haven’t had any experience with the strataXRT but I was supplied with aqueous & flaminal cream during treatment & Flamazine cream to use once my radiotherapy was finished, Flamazine contains silver apparently therefore can’t be used whilst going through radiotherapy. The only thing I could wash with during & after treatment was aqueous cream, one of my radiotherapy team advised this when I had radiation cystitis & I found afterwards & now that even perfume & chemical free products can cause some irritation, the aqueous cream cleans & moisturises all in one so it’s a win win in my eyes. 

Good luck this week with your planning scans. 

Nicola 

Toni8776

yes have a digital thermometer at the ready!  And a bumper pack of extra strong mints and Werthers Originals (really am getting old ). Got a packed freezer. Stocked up the larder. Made lists. Play dates for the girls. Hair trim for the dog  

Thank you so much my lovely! 

Nikki65 Got a bumper Aqueaous cream order! Think that’s a good idea to stick to just that for washing. 

I am moisturising the whole area with Hylauronic Acid, Fractionated Coconut Oil and Weleda Skin Food which is the most fantastically nourishing natural cream. So that my skin should be in good condition prior to treatment. Got both the Flam creams on my list for when I need them. I’ve heard good things about colloidal silver for healing so maybe that’s what’s in the Flamazine? 

Do you know if the Mitomycin is just an initial infusion or is it more often? Wasn’t clear in my plan. Of course I will check when I go to my planning scan. 

Also what are your thoughts on Dexamethasone? Did you have it? If so, how often and what were side effects? 

Thank you!!!

Hi Prettypinkroses

It sounds like you really are being very sensible stocking up and making sure that you have everything in place for your treatment. You have had some amazing advice here and I can definitely recommend the sitz bath too.

I had Mitomycin only on day one. It’s a blue colour, and is administered fairly quickly. I got to lay in a nice comfy chair with I could control using a remote. It was all pretty painless and over very quickly 

I have just completed five weeks of treatment and have been moisturising throughout as well as several weeks before. Pre treatment I used sudocream but this does have metal in, so cannot be used during treatment. I have used medi honey throughout treatment and apply this each time I use the toilet and all over the area several times a day. They supply this at my hospital but the stocks are limited so I have bought my own. You don’t have to wash this off before radiotherapy. I have also been taking collagen supplements for over three months. 

My skin has held up extremely well apparently, according to my oncologist. When she examined me on Thursday she noticed that the skin was just starting to break around my anus. I wasn’t even aware of this. I have slightly red skin and a slight burning feeling but so far the skin side hasn’t been too bad. They have just given me some morphine gel which you can apply directly onto the affected areas which does help.

I have got a few sweets in but have found that I keep wanting to have drinks that I would not normally touch, such as Horlicks and hot chocolate.

This last week I have suffered with severe pain when passing a BM, but I was not taking any painkillers. So I would advise that you make sure you have these in place, if things start to get painful. They gave me morphine in liquid form with with a syringe to measure and administer. This has been a godsend. I now have my syringe ready by the side of the toilet and just shoot it into my mouth at the point when I need to go. The pain relief is instant and this has made such a difference to how I am feeling the last few days. I take it with me when I go to the hospital and this makes me feel reassured in case I need to go.

Make sure you have loose comfortable clothes, especially if it’s hot. I have found long dresses really effective. I made a bit of an elastic waistband, which I carry in my bag. I put this around me to hitch up my dress so I don’t have to remove it before radiotherapy. This may sound strange but it makes the changing so much quicker for me and gives me bit of cover up.

Maybe stock up with a few good books, as the wait time at the hospital can be quite long. These last few days my son has accompanied me and carried my laptop as we go by train. I have been able to get on with a few things and this really does help pass the time and stop you thinking about how you feel.

Finally try not to stress if you can. Focus on preparation, which I know you are doing and try to enjoy life. It does goes on once you start treatment and time really does speed up once it starts. Just take things day by day.

I managed to get an eye test done on Saturday, choose new glasses, do a bit of shopping in Asda, as well as attend my sisters Birthday celebration for a couple of hours. Yes I was in discomfort and had a bit of pain, but I took things one step at a time, knowing that I could just go home if it got too much. I felt good afterwards and was able to sleep.

We are all different and cope in different ways, and you will find your own way of dealing with this. Before  I started treatment I really was so very stressed and worried about everything. Now I am so much calmer and actually feel much stronger and able to cope. Like you, I am stage 3 and am having exactly the same treatment.

Not long to go for you now and I sure it will all fall into place, once treatment starts

Best wishes, Serena

Prettypinkroses I use all paraben, sls free  skin care products , make-up etc., aside from the aqueous cream & I’ve used weleda products in the past, they’re lovely. I also wondered if when told that the Flamazine contained silver whether it was colloidal silver too. 

The mitomycin infusion takes a couple of minutes at most & with the standard protocol it’s a one off on your first day of treatment. I sat with a saline infusion running for possibly 45 minutes whilst the mitomycin was made up in the pharmacy then an oncology nurse brought it over, disconnected the saline & I was gobsmacked when there was only an inch or two of the mitomycin in the syringe, I’m not sure what I was expecting! It took a couple of minutes for her to administer it into the cannula & that was it. I was given some anti-sickness tablets to take whilst on the saline drip & some to take home & also my supply of capecitabine & instructions on how & when to take them, I used the anti-sickness meds until the packet was finished but didn’t feel I needed them so I didn’t renew the prescription after that first pack. 

I wasn’t offered Dexamethasone, I understand it’s a steroid medication isn’t it? Have you been offered it as part of your treatment? I was prescribed the creams mentioned & I alternated paracetamol & ibuprofen 2 hourly when needed for pain relief, I was offered oromorph & codeine but both caused constipation with me & that wasn’t good! Other than these I didn’t need any other meds. 

Nicola