Hello! About to start treatment & Strata query.

Hi Ninka, welcome to the group. I am two years post treatment and during those two years I have experienced a couple or more hiccups but on the up and living a good life. I am glad you are soon to start your treatment as I only know too well the waiting after tests etc are a really anxious time. My first day I didn’t know what to expect and was really nervous but you soon get into a routine and count down the days which seem to pass really quickly. You really value the weekends that give a break from the hospital journey and before you know it another week starts. I used the StrataXRT from day one. I investigated online what kind of gels could be used to protect the skin and discovered Leeds hospital actually did a trial run of this gel with great success but unfortunately did not continue and I contacted a cancer nurse named in this trial and I think it was down to budget and we all know that the NHS prioritise but not not always in my opinion the right things. I purchased the larger tube which carried me through the six weeks and then I purchased the smaller to help the skin post treatment and still had some left over. You can do a search on their website which explains how to apply and what it does in more detail. I will shorten it down and after speaking to my oncologist who had never heard of it she conferred with the MDT and agreed I could use it. You apply this very thinly over the entire genitalia area (vulva, vagina, perinium and anus) in the morning after your shower and just use the right amount (I know it’s too expensive to waste) and after a few minutes it dries. If it’s sticky, you have applied too much. It can leave a residue on underwear which easily washes out but I used liners. This leaves a permeable film that DOES NOT affect the radiotherapy beams from doing there work, you must not wash it off. I would say the one downfall with the gel is when you go to the toilet you have to reapply but in your case with the stoma you will only have the urination to worry about. You apply the gel every 12 hours which basically means constant contact with the skin. This is because it leaves a film of constant protection and healing environment for skin healing. My skin did not have one blister and I didn’t start to get a little red until near ending my treatment. The nurses were amazed but I did get sore internally post treatment when you get a build up of side effects. When this happened they gave me a cream which contains silver I think but my skin totally reacted to this and anything with honey and even e45 stung. Everybody is different and it’s finding what suits us. Great you have the sitz bath. The side effects don’t always come at once and I have no experience with a stoma and glad you have found support with that. I wore loose cotton type shorts knickers and harem trousers which were great but since the end of treatment I couldn’t bear to wear them again. All the best for the 14th and keep in touch with any questions or just a moan really.

Julie

Hi Ninka ,

Firstly welcome to our little corner of the Macmillan online community although I’m really sorry that you’ve had the need to find us. 

I can’t advise on the StrataXRT gel as I didn’t become aware of this until I was through my treatment. I’m a little over 5 years post treatment, doing well & have recently been discharged from surveillance so now classed as ‘cured’. 

Following a bout of radiation cystitis towards the end of my second week of treatment I was advised by one of the radiotherapy ladies to wash with the QV cream that they provided for my skin, it’s an aqueous type cream, I’ve washed with this since that day & still do although I now use Aquamax which is the same kind of thing. My skin held up pretty well & healed quickly once the radiation had peaked. I also used water wipes (found in the baby aisle alongside the other baby wipes) for using after the toilet but found towards the end of treatment & the couple of weeks after it was more comfortable to wash rather than wipe! 

It would be worthwhile with living alone to try & stock up your freezer with meals you can just defrost etc., maybe batch cook a couple of your favourite meals as there will be days when you just can’t be bothered to cook or prepare food, I found the fatigue quite overwhelming some days especially after treatment was finished but if you’re prepared then at least you’ll know there’s something nutritious there that you can have with little to no effort involved. 

I see Julie has touched on clothing too, at least at this time of year  looser, cooler clothing doesn’t look out of place. 

Wishing you the very best of luck for Monday, keep in touch & let us know how you’re doing & if there’s anyway that we can help support you through this. 

Nicola

Hi Ninka,

So sorry you need to join us here, but glad you found us! You sound impressively researched and ready to begin your journey.

Sadly, Strata XRT isn't available in the States. My cancer team only had a single compounded cream to offer, and I had a terrible reaction to it so was on my own. It sounds like an incredible help.

I used (and keep at each toilet in case I need it again) a cleansing lotion called Balneol. And yup, a little blip on the toilet paper and gently pat. Bidets are a lifesaver, but a peri bottle does the same basic thing. 

I'm so very sorry about the loss of your dog. No one should have to deal with that along with this particularly horrid diagnosis.

Hugs

Suz

Hi again Ninka, can I just add, your query regarding the tattoos and application of the gel. My tattoos were one above the pubic bone and one on each hip the help the. Radiation beam be pinpointed to the actual target within the anus. I was not affected at all on the hip points or pubic bone as this beam goes through the skin. I don’t know about anyone else but that was my experience. The gel is completely harmless and presume applying just inside the labia is a good idea also.

Hi Suz the gel is manufactured in Switzerland and in the UK it can only be purchased online unless it’s changed in the passed two years. I certainly agree about the bidet spray and the bottle spray was good when you were out and about.

Hello Ninka

Welcome to the forum, I am so pleased you have already taken on board some of the coping strategies shared on here.  This is the only place you will find almost every single person has been through the course of treatment and REALLY know what it is like.  I am sorry that you have to gain experience in this through your diagnosis, but I am sure you are pleased that treatment is about to start, after the countless appointments, investigations and scans.

I was one who had quite a severe reaction to the radiotherapy, but I truly can't fault the care I received at the hospital.  I saw the tissue viability nurse and a doctor every week and they kept on top of everything; from additional pain meds to a quick change of dressings should something not be effective.  So please don't soldier on if you are finding things difficult; keep your team informed.  The side effects don't all happen at one and it is a very gradual thing, more towards the end of treatment and for a couple of weeks afterwards and not everyone is affected as badly as I was.

I am so sorry you lost your dog; we are also a dog family and I know only too well the utter heartbreak of that empty space where once your little companion would wait and watch you with loving eyes.  It is a pain like no other.

Thanking of you and sending huge hugs

Irene xx  

Ladies thank you all for a lovely welcome. I’m on the hoof making the most of freedom till Monday & won’t be able to reply to each of you til tomorrow. I didn’t want to read & run however & really appreciate the advice & support. Hoping wherever you are today is as good as it can be

Spk then xx

Hi Julie 

That’s really encouraging you’re 2 yrs post treatment & finding that life is good again -  after no doubt your share of challenges on the way. That’s amazing. 

Thanks for the info re the Strata gel. If I could have anything like your reaction -I know it’s treatment but feels more like a form of torture a so anything that can minimise the pain or burn would be good.

That’s really helped me know where to apply so tthank you - was a bit wary at first be aide of the location - but you’ve reassured me. I have read their literature & will def try to ensure it maintains constant contact. It does highlight though how little I understand how & where the beam is going & the extent to which it penetrates. Like if it’s going through to the anus don’t your bottom crack, sacral area & section of cheeks get burned too?? 

My tattoos are on each hip & the one above my pubic bone is more in my lower pelvis/tummy  (below bellybutton) than yours by sound of it. 

I’ll ask on Monday - I might have a greater pelvic area marked up because I’ve got common iliac node involvement which the registrar did say were higher up & that they were going to include in my radiotherapy as per Stage 3 treatment. 

Those nodes are slightly higher up now that I think of it - so I might put the gel on there as well anyway & then it’s covered at least. 

That’s good your team accepted you using it - I’m expecting mine to not have heard of it so plan on showing them the clinician printout so they can hopefully agree.

Yes it doesn’t surprise it not being funded by the NHS which is a real shame as it would save money in the long run & make the patient experience so much better potentially. 

Fingers crossed & thanks again xx

Hi Ninka, 

would just like to wish you well for the start of your treatment tomorrow and would just like to share my experience / tips with you. 

I to ended up with a stoma, which I’m so glad that I did it definitely helped as regards to not being painful trying to go to the toilet, in fact I’m up for a reversal but I’m not actually sure I want one!!

I was one of the lucky ones that never really had any skin problems thank god. Towards the end of the second week I had  the radiotherapy cystitis, I was told to take antihistamines which worked well, I had the browning and peeling of the groin skin but wasn’t sore in any way, and at the end of my treatment I had a sore that came at the top of my bum was very sore and itchy, I was given some plaster type padding as hurt when I was sitting, I don’t know if you use the stoma powder but I ended up putting that on it to dry it out and took antihistamines which cleared it up in no time after a good week of being beside myself.

I bathed everyday in Epsom salt baths which I think was the key to the good health of my skin and wiped myself with E45 every time  I went to the toilet I did not use anything else no wipes or siltz baths. 

The only big issue I had was 4 days in to  my treatment I started having chest pains, I was rushed to hospital with suspected heart attack after 6 days in the cardiac care unit with all the tests, X-rays angiogram it’s turns out the it was the chemo that caused it, so chemo stopped and I just continued with the radiotherapy. 

im 16 months post treatment in remission I was advanced stage 4 N1 I’m 55. 

Good luck with your treatment and we are all here tips and support big hugs 

Laura x

Hello Laura, great to hear other people’s experiences which shows how different we all are and how we can react to the treatment and the aftermath which some experience minimal effects which is promising for those worried about how it could effect them. I wonder if age also has an element to it as I’m 68 and my oncologist said I am young! and hopefully will escape most side effects.