Immediate side effects from radiotherapy

User

Posted 25 Aug 2022 at 20:24

I am in my last week of salvage RT and finding it tough. I thought I would ask to see whether others had experience of ways to ease the symptoms, and advice about how it will play out over the next few weeks.

The first 3 weeks were largely trouble-free, up to fraction 14 (last Friday) I was cycling to the hospital each day. The only thing was finding myself getting very tired in the evenings, easily solved with early nights.

But now I feel totally drained all the time, despite even earlier nights and afternoon naps as necessary. Plus bowel problems: I assume the rectum lining is getting sore and creating a feeling of urgency even with minimal contents. The hospital staff suggested paracetamol, which has helped, and provided a gel for external use which prevents soreness there adding to the problem. I am told the symptoms are likely to continue after RT ends, and indeed may worsen. I am not looking forwards to that.

Any advice? Or reassurance from experience?

User

Posted 26 Aug 2022 at 06:56

This is entirely normal. Side-effects generally peak about 10-14 days after treatment ends, but you should then see a rapid improvement. Bowel problems take longer to sort out, but I saw a considerable improvement after three months, although returning to a form of normality took 6-12 months.

Best wishes for the remainder of your treatment,

Chris

User

Posted 26 Aug 2022 at 08:02

Like Chris said it's normal to have the side effects you are having 14 months since I finished 37 fractions still have occasional mucus based discharge still settling down after all this time gaz 👍

User

Posted 26 Aug 2022 at 09:46

Hi J-B,

I had my last of 20 SRT sessions just over three weeks ago and your experience mirrors mine. Loose bowel and some diarrhoea from day 13, I was having to go three times before leaving the house, pretty much back to normal in the last couple of days though. I'm still getting some urinary urgency though, which can be held by clenching my pelvic floor.

I drove to my sessions but like you I kept the exercise going.. week 3 I rode my bike to the swimming pool and really felt it on the way back.

One other thing to consider.. could you have picked up covid at the hospital? Having said that though.. I wouldn't want to know in case they postpone treatment.

Anyway, at 4 weeks, you're almost there so just have to keep those plates spinning until the last session.

As Chris says, it's normal.

Good luck with your recovery.

Kev.

Edited by member 26 Aug 2022 at 09:47 | Reason: Typo

User

Posted 26 Aug 2022 at 11:06

Thanks all, it is reassuring to know I am not alone! The idea of "rapid improvement" after 14 days post-treatment is particularly alluring.

With bowel symptoms including mucus continuing for months, how soon does it stabilise enough to risk long trips out of reach of toilet facilities? I am particularly thinking of walks or cycle rides, although my wife and I are hoping we will be able to go away for a break some time in the autumn having been tied to the hospital for all of August.

And I hope my problem isn't Covid, I have been testing regularly throughout and always been negative.

User

Posted 26 Aug 2022 at 13:42

It's quite possible you could be anemic. Both the HT and the pelvic RT can cause this. You will recover from the RT anemia in around 6 weeks, but it may be worth asking your GP for a blood test for full blood count, Vitamin B12, and iron levels, so they can prescribe anything that might help speed that up.

User

Posted 26 Aug 2022 at 16:01

J-B, like others I suffered with loose motions and mucus but nothing to drastic. I had retired by the time I had SRT so it did not have much of an impact. Strangely my bowels are better now than pre SRT.

Quite rare, less than 5 percent, was the severe damage to the bladder. A few weeks post SRT I started passing lots of blood clots and debris. The RT department blamed urology and urology blamed RT. By the time I got diagnosed the bladder was beyond help. As I said it is quite rare.

As regards getting COVID , I have recently finished a second course of RT, the instructions were that if I did get COVID, my appointments would continue, but they would be moved to the end of the day.

Hope all goes well.

Thanks Chris

Edited by member 26 Aug 2022 at 16:02 | Reason: Not specified

User

Posted 26 Aug 2022 at 16:57

Thanks Andy, I hadn't thought of anaemia. I need a blood test sometime anyway, last time I had a (phone) appointment with the GP he wanted to check cholesterol and HbA1c but I held off booking it because I reckoned the RT and associated change of diet might make any numbers unrepresentative.

And Chris, yes I was told they would deal with patients with Covid if necessary but time them to minimise interactions with others and allow time to clean surfaces after. I will look out for bladder symptoms over the next few weeks, to be honest I was slightly surprised I hadn't had any given the target area is so close and surrounding the urethra.

One question for those who have been here before - do the continuing problems mean that I should carry on being careful with my diet after finishing RT, or can I return to normal? (They may tell me, apparently there is aftercare information provided at the final session).

User

Posted 26 Aug 2022 at 17:36

Originally Posted by: Online Community Member

With bowel symptoms including mucus continuing for months, how soon does it stabilise enough to risk long trips out of reach of toilet facilities?

I'm a keen walker with my local Ramblers' group, and I was back out doing their "Easy" walks (which last about 3h) within about 6 weeks of finishing RT, by which time my bladder issues (which were troublesome for me) had returned to normal. I took an Imodium tablet before setting off for the walk and it was fine. I did put a spare pair of undies and a roll of loo paper in my backpack "just in case", but fortunately never needed them.

I'm now three and a half years after RT (my treatment finished in March 2019) and everything's fine. My bowels are different to what they were pre-treatment, and I still get an occasional mucus "event" (perhaps once in 3 or 4 months), but nothing troublesome. I always carry a strip of Imodium tablets in my wallet for emergencies.

Cheers,

Chris

User

Posted 26 Aug 2022 at 18:27

Originally Posted by: Online Community Member

I had to switch to a very low fibre diet during RT.

I continued this for about 4 weeks afterwards to get over peak side effects (which are 2-3 weeks afterwards), but then very slowly started reintroducing fibre and see how it went. I recall starting with a slice of brown toast which was OK. I didn't push things quickly, and it was about 5 months to get back to mostly normal, although broccoli remained a no-go until about 9 months. From about 12 months, I started moving back to a high fibre diet.

It's possible I could have pushed things faster.

User

Posted 26 Aug 2022 at 21:31

More useful information, thanks Chris and Andy.

To be fair, I have kept eating a modest amount of fibre though quite a lot less than my normal diet where I try to achieve the recommended "5 fruit and vag". So I guess I will introduce more cautiously and see how that goes.

And bowels recovering to allow 3 hour activities allows quite a lot of options which is encouraging. My wife is keen to go away somewhere in September so I just need to encourage a shift to mid-October (the 6 week point for me). Meanwhile we can do more ambitious local activities once I gain a bit more stamina.

Thinking about it, I haven't had any broccoli since starting RT (I was given a particularly severe warning about green veg) so I will need to be cautious over that. And helpful to be reminded that Imodium can be used once it stops as well.

User

Posted 08 Sep 2022 at 13:14

I thought I would update my situation, really for the benefit of those on a similar pathway who might be reading the forum to know what to expect.

It is now over a week since the last radiotherapy session, and my situation is starting to get much better. While my stamina remains limited for physical activity it is improving, and I no longer end up desparate for bed quite so early in the evening. Bowels are calming down too, I do get occasional discomfort which needs relieving but nothing like the previous cramps and intense urgency.

Still haven't had any broccoli, but I would have thought the runner beans we had a couple of nights ago would have found me out if anything did.

User

Posted 09 Sep 2022 at 08:11

Glad to hear that things are improving for you. Hope your recovery continues to go well.

All the best,

Chris

Edited by member 11 Sep 2022 at 08:17 | Reason: Not specified

User

Posted 09 Sep 2022 at 19:22

Mi husband went through a similar situation. He was feeling poorly. One month now from last RT sesión and no urgency or trouble with bowels now. I hope you go the same way.

Good luck

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Immediate side effects from radiotherapy

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