Hi, 

i am 17 days post treatment and still using flamigel on my bottom but e45 everywhere else ..I used a tiny bit of instilligel after going to the toilet …

best wishes 

Chrissie xx

Hi I remember the discomfort/pain when undergoing chemo/radio. I was given Cetraben at early stages and yellow paraffin gel as things g ot worse by my nurses and found I was able to manage with those. Not sure if it's worth asking about them at your appointment tomorrow?

The rest of the treatment will hopefully pass quickly,  I was surprised how quickly the 6 weeks past for me.

Sending hugs, you'll get through this.

Andrea

Thank you Chrissie, it is good to know that you can actually use Instilligel with the Radiotherapy as well as with the Flamigel xx

Thank you for the hug Andrea need some of them right now bless you. I will ask the question ...fingers crossed!! 

Wishing you a speedy recovery..thank you for your positivity it really helps xx

Hello Woo2024

I am sure you can use anything that soothes except when you are actually having radiotherapy, there shouldn't be any sort of barrier between the radiotherapy and the area that you are having treated.  To keep on top of your sore bits, please let your treating team know if the creams you have aren't working, they are generally very responsive and will try something different.  In the later days of treatment I couldn't use Instilgel as it stung far too much as I had lost skin but they tried other creams and one that particularly helped me was Flaminal Forte.  Also make sure that they keep you supplied with painkillers too, if you have opioid-based painkillers, please take with a stool softener alongside, constipation is a side effect and not something you want when everything is so sore.

Sorry, I don't know anything about Epaderm, I hope someone comes along and can help.

And count off those days - in a couple of days you will be half-way through.

Irene xx

Thank you Irene, yes I am on Morphine and Gabapentine. I did ask a doctor, pharmacist and the radiology team about Instilligel but they could not give me an answer which was a bit worrying which is why I have not used it yet. I have just read about the Epaderm and you can bathe in it so that sounds good. I have been constipated since January 2023, before the medication I am on so I have been on Laxido since then although I do try and eat to help but food does not seem to help me. Thank you again...take care xxx

It's surprising how much we/they DON'T know about this awful disease, isn't it?

I asked before treatment started if it was okay to use Estradiol vaginal cream during the cancer treatment. I still haven't got an answer. It became a moot point during treatment, but when I was healed up enough to begin again I did.

But I'm nervous about just ploughing ahead without a medical okay. I'm really glad you've got some good answers here.

Hugs

Suz

Hi Woo2024, is your flamigel the radiotherapy type. It will have the RT at the side of the name. I’m very much with Irene, any cream around your genitalia after treatment that soothes is fine. Even Vaseline which my specialist nurse swore by. I was slightly different with creams as from day one I used a gel called StrataXRT which I had to buy privately online. This gel was used in a trial at Leeds hospital very successfully but unfortunately at the end of the trial they didn’t continue to use due to the cost. It is quite expensive but this gel you apply very thinly over all genitalia and does NOT need removing during radiotherapy and stays in contact with the skin for 12 hours and then replaced after showering and left on for another 12 hours so basically you leave it on and it forms an invisible membrane protecting and allowing your skin to heal. The only drawbacks are when you go to the toilet and clean yourself and you have to replace it. My skin did not break down at all but I did get sore inside my anus and vagina but none on the outside. My medical team had never heard of it so I got the specialist at Leeds hospital to send me the information to confirm it stays on the skin and the radiotherapy team were happy after that reassurance. This gel I used also right through post treatment for a further three weeks and it does not sting at all! I believe I used the flaminal hydro for just inside the labia. Tell your team you are sore and want to try other creams. Sometimes the radiotherapy nurses are not well informed about anal cancer and the impact on our skin probably due to the rarity. You may find you don’t suit all creams, I couldn’t use anything with honey in it, silver, aloe Vera and even e45. Good luck

Julie

Thank you for the hugs Suz and sending them back to you. I am really shocked that there are no answers from the people who should know! I have just received a call from my surgery pharmacist to say the doctor has prescribed Timodine. When looking at the instructions I see that it is a steroid and for external use only so that is not going to work either as I need it for my vagina!!

Take care 

Wendy x 

That is interesting Julie thank you. Yes the Flamigel is RT, I did ask one of the team at today's session if I could use home grown Aloe Vera gel and she said yes but I would still have to use a moisturizer with it, so back to square one!

Take care

Wendy x