Update & some chemo / radiation Q's!

Hi Em44, sorry you have had your treatment delayed but I’m sure it will soon fly and give you some time to get organised with any help you might need. One question I can definitely answer is regarding the StrataXRT as I used this throughout my treatment. This gel it’s advised you put on your skin  24/7 as its healing membrane protects the skin. From the very first day of your radiation treatment after your morning shower you spread a small amount all around your groin area. I spread it all over my vulva, labia and anus and basically spread it all over. It forms a protective layer that does NOT prevent the radiation treatment so you don’t wash it off and put it on and around the anus. I would then at my bedtime routine re-apply again over the same areas. It’s invisible but not waterproof so that I would say is the only disadvantage using the gel for somewhere that gets regularly used for toileting but simply reapply. My skin held up really well right up to around the end of the fourth week when I started to get a bit sore internally but the external skin was really good with no blisters or burns. When the treatment finished they recommend continuing using the gel for at least four weeks after. It’s expensive but I think it’s worth it. The answer to your son’s question is all I can say is it’s seen as the best treatment and many of us on here are here to tell the tale. I was given dilators after treatment finished when I was attending my first follow up appointment with the oncologist. Some hospitals do give them earlier. Sorry I can’t answer the question about tampons as I am way past that but sure someone will come forward with the information on that. When I got my tattoo done they are used to line you up on the bed ready for the radiation treatment and I was in the same position right through the end. This will be explained to you on your first session and also I was given a amount of water to drink to inflate the bladder helping to protect it. I only had the first and last session of intravenous chemo and during the six weeks I had oral chemo and just was extra careful about being to near strangers but we were still all wearing masks when I finished. I had family and friends visit but if they had colds they stayed away. Hope this helps

Julie

Hi Em,

So glad the tooth is sorted, and you're spending your pre-treatment time wisely by getting ready and asking questions!

I had a port installed for my chemo, so I think my conversation is different. I couldn't shower when the port was engaged, but I could still take my baths, and shower using the handheld. 

It's definintely smart to be careful about picking up bugs while you're in treatment. I was lucky that all my drivers (and after the first week I had drivers every day, the cancer center is about an hour from my house) all wore masks without being asked. You should strongly consider wearing one when you're around people and not at home. I still put one on in the shop where I work when people come in.

They were careful to tattoo me in the exact same position that I was in for radiology. Not sure about the checking but that would be a great question for your nurse.

Not sure about the menstruation question either, although I know I've read discussions on it here. One of the younger members will chime in with that info!

I wasn't allowed to use any cream or unguent, period, for the actual radiation therapy, but you guys have a lot of creams and ointments we don't have in the US.

No one ever discussed dilators with me. Still haven't. The only thing that will help me cope with the ongoing pain of anoscopies is (according to my gastro doc) more anoscopies. I believe you have better answers in Britain.

The percentages are hard to read. Those of us who get through the first 5 years with no recurrence have fabulous numbers. The odds go down if we contract a secondary or recurring cancer, but I haven't been able to nail down what percentage of us make up THAT group. Maybe someone can read the data better than I.

The good thing about treatment is that you don't even have the focus or time to overthink any more. It's a weird sort of relief.

Hugs

suz

Hello Emm I did reply to this yesterday but don’t know what happened to it? I also used the StrataXRT gel from day one of my treatment. This is applied all over your genitalia and anal area, don’t miss a bit. Applied thinly and LEFT ON consistently. Applied every twelve hours and as it’s not waterproof you can reapply after your toileting routine. You do NOT have to remove it as it does not block the radiation rays during treatment. My oncologist also looked into it and confirmed that it was okay. You can even apply cream on top but always have the StrataXRT on first. This helped keep my external skin free from blisters but did experience some internal soreness around the end of the fourth week of treatment to which I was given creams on top of the gel.  They always said my skin looked great and my oncologist said Leeds hospital did a trial using this gel with great success but of course it’s expensive so that was the deciding factor on whether they should continue. The tampon issue I am sorry I am well past that stage. I was given dilators on my first follow up appointment after treatment. I only knew about these from this site as I wasn’t told about possible complications but I did have inflammation in that area post treatment but now that is history for me. As far as success rates just as Suz has said it’s risk is if it spreads but this is quite effective treatment and post treatment you are checked regularly and I like to think we have a chance of not getting cancer again just like anyone else. I like to think my priority is to get healthy, eating well and getting fit to give us the best chance. Your treatment start will come round soon enough and it’s an opportunity to prepare with help and support. Of course I would say get a sitz bath if you have not got one yet. Cotton loose knickers and I bought a couple of pairs of harem trousers which are loose and very comfortable. Ask away any other questions as you will find someone who knows usually.

Julie

Hi Jaycee12 

I’m so sorry-I think I might have your post by complete accident when I knocked my iPad. I wasn’t sure if I had but it seems I did. The moderators will see that and put it back on today. My apologies for you having to type it out again. 

Sarah xx

Hi Em

Glad your tooth sorted!!

I was told success for 5 years was 85% and they were very positive about this.   Yes position will be same for the RT as when tatts done. Dilators I was told are at the end.

I've had no examination since I met the consultant at first meet.  It is avoided as too painful once treatment gets underway. A radiotherapy nurse examined me externally only when I mentioned discomfort and it turns out my piles had just got worse from the treatment and she gave me creams for the area.  The radiotherapy nurses give you a weekly review when you can discuss all your concerns.  One week she sat talking with me for 45 minutes!

I would recommend lifts as I find the daily journey tiring and the stress of  trying to find a parking spot too much for me.  The appointments are so short that mostly my lift waits in the car park and I ring as I come out. 

Regarding the sleeve - you can buy from shop at hospital in Bristol or online.  Cost around 15-£20. I didn't bother as first week I had chemo and couldn't take pump in shower so I just got used to having a bath with the pump sitting on a chair next to bath.  I find soaking in the water therapeutic anyway.

Hope that helps but ask more if you have questions.

Carole x

Hello Em

I am pleased that you finally had that tooth seen to, the last thing you needed in the coming weeks is toothache as well.  You have had really helpful replies which I can't add to, I just wanted to wish you all the best in your treatment and please check in and let us know how you are getting on.  You may bring up something that we have missed and that is the beauty of when the treatment is over; you don't ever forget but it becomes a distant memory and hopefully it will be that way for you.

Irene xx

Thank you all so much and sorry for my delay! been a hectic couple of weeks. 

This is exactly what I wanted to know Julie , really appreciate it.  When I apply the gel it doesn't feel like it dries, I'm only putting on small amounts, spreading it out but still feels tacky, is that normal?  I'm also wondering if I'll need another tube, I have a 50g.

For anyone that may want to know, no tampons or similar allowed, but just tell the ladies & a pad gets put down.

I'll update properly soon, quite exhausted after first week!

Hi Em44, you apply the gel on thinly and rapidly. It takes about five minutes to dry and should not feel sticky. If it’s sticky you probably put too much on. It took me a few goes just to get it right and I was conscious of the waste due to the cost! I purchased the largest tube which I think was 50g which is supposed to see you through the 5 and a half weeks but half way through using it and due to having to reapply slightly after going to the toilet I did worry about running out. I then purchased the smaller tube as they recommend using it for a further few weeks after treatment stops as the radiation on the skin builds up.  I found I still had some left and continued until it was all gone. There is a websites called hope cancer care that gives you more information on how to use the gel which is very useful. Take care. Julie

That's great, many thanks Julie...I'll have a look at the website & practice more with getting technique right over weekend.  Yes I may get a little more too! x

Hi Em44 https://hopecancercare.com.au is the website under product Julie