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Our whole pelvis radiotherapy journey

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User
Posted 06 Jan 2023 at 21:38

Up to now, my OH has had 6 of 23fr whole pelvis RT. Last night he was unable to sleep due to pain in his ear, so he took himself to A&E at 4am, where they gave him antibiotics intravenously, and told him he has cellulitis in his ear caused by eczema, (which he hasn't had before), and erythema of the tragus. The doctor also gave him a 7 day course of antibiotics to take at home, and told him to phone The Christie and ask if he should still attend his 5pm appointment. To which he was told, yes, he could go as normal. So after being up all night, then being in A & E for 5 hours, being unable to nap this afternoon due to the pain in his ear, and then the 60 mile round trip to hospital, he's thankfully, now knocking some much needed zeds out.

User
Posted 07 Jan 2023 at 13:03

This is very unlikely to be a radiotherapy problem. You have mentioned eczema and now a rash. My suggestion is only vaguely likely but quite easy to test for.

I believe HT can change blood sugar, and this increases the sugar on the skin. Natural yeasts and fungus which are always on the skin then become more active, so you can get itchy rashes as a result.

I myself am not diabetic but about once a year I buy a finger prick test kit over the counter from any large chemist and check my blood sugar.

For the sake of £25 it might be worth doing that test. I suspect you will just waste £25 but at least you might rule out one possibility. BTW it says on the side of the packet: This is to monitor blood sugar not to diagnose diabetes. Always see a doctor if you have a medical problem, not some random guy on the internet.

Dave

User
Posted 07 Jan 2023 at 15:38

He was finally home by 3. Blood tests & 2 ECG results were fine. Turns out he's allergic to penicillin. So a change of antibiotics, and the redness is slowly fading. Now he's looking forward to having some good food later, for our son's 15th birthday celebration. Followed by a good sleep (hopefully).

User
Posted 08 Jan 2023 at 22:00
Glad you sorted that out, and he is OK. Allergies can be much worse on a second time round, so he needs to be sure to tell doctors about his penicillin allergy if he has any future infection.

And Happy Birthday to Jay Junior.

User
Posted 16 Jan 2023 at 14:07

Elle Jay,

I am starting this next Monday after a delay of a week because their computer got it wrong! Having 39 sessions so will continue to follow your journey with interest.

Derek

User
Posted 24 Jan 2023 at 17:26

18 of 23 fr done. Feeling a lot more tired in the late afternoon & evening. Noticed some blood in his stools yesterday, though nothing today. Only 5 more to go. He says when he done his last one, he's going to leave the hospital doing a dance like the guy in the orange shorts from the we buy any car advert πŸ˜‚πŸŽ‰

User
Posted 27 Jan 2023 at 12:16

I had 37 fractions off radiotherapy and had blood when I wiped. for a period whilst having the treatment all cleared up a couple off weeks after the radiotherapy and 2 years on all good took a year for bowels to get back to normal gaz πŸ‘

User
Posted 31 Jan 2023 at 18:36

I had similar treatment was sent for a psa test 3months from the end off radiotherapy  πŸ‘

User
Posted 31 Jan 2023 at 19:06

Originally Posted by: Online Community Member

All 23 fractions done. Still feeling ok. Can anyone tell us what happens next? He said the radiologist mentioned something about a scan, and that nothing could be seen on one right away, as RT inflames your insides, so it would be in a couple of weeks. He didn't question it, so I thought I'd ask on here to find out if it's normal procedure. 

It might be that your hospital does a scan but it isn't common practice. A PSA test a few weeks or months after would be normal. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Jan 2023 at 20:49

Well I had almost exactly the same treatment as you OH and at the same hospital. A scan is very unlikely. My experience is that in about three months to six months they will call him in for a review. He will almost certainly be told to get a PSA test done at the GP a week before. 

I would assume the PSA will be <0.1 as he is on HT. If he has any side effects he can discuss them. They will then arrange another review every six months, assuming nothing exciting happens after five years they will say "just keep having PSA tests and if it looks suspicious get your GP to refer you back to us".

All the above is based on my personal experience, and I am now discharged from the Christie. Of course things could be different for your OH, but if you're lucky you can now put cancer on the back burner for decades.

I now cheerfully tell people, I am more likely to die on the motorbike than of cancer.

Dave

User
Posted 15 Feb 2023 at 13:23

All sounding very positive. Great update.

Ido4

User
Posted 02 Mar 2023 at 11:12

Good to here all is going ok. I suspect those little aches and pains are just things which he would not have noticed pre diagnosis. Personally I would ignore them unless they are getting in the way of life. When he next meets the onco I would mention them, just in case.

Dave

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User
Posted 06 Jan 2023 at 22:15

Well I'm glad he is still having the RT it is very important to try and get them all in on the right schedule. I'm sure RT could be moved a day one way or the other by using up a weekend day if it can be scheduled, but ideally you just keep everything as planned.

Another week and he will be half way through.

Dave

User
Posted 06 Jan 2023 at 23:54

Yes, this came up in a support group, and the consultant radiographer there said the important thing is not to significantly extend the total duration of the treatment because that changes the dosing which would have been required. Apparently prostate is not as bad as some other tumor targets in this respect. IIRC, he said if you miss a lung radiotherapy session, you have to have two to compensate.

User
Posted 07 Jan 2023 at 01:03

I confess to missing one session when the pressure  was too much. They simply added one at the end of my treatment. Given they deliver RT 5 times per week, missing two days [as in a weekend, even with the hospital being open on a Saturday], a gap can't be disasterous. The weekend recovery time was vital though.

Are there any cancers that have to be treated without any breaks?

Jules

User
Posted 07 Jan 2023 at 01:14
Some hospitals continue the 20 / 37 sessions even on bank holidays - others don't seem to worry about the 3 day break in treatment πŸ€·β€β™€οΈ The weekend break is common to other cancers such as breast / pancreatic cancer and brain tumours; important that patients have some recovery time.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Jan 2023 at 08:44

 

My plan in 2017 was to have 33 sessions and that is what I had. From the first session to the last session was fifty days. Some missed sessions due to bank holidays were rescheduled on Saturdays. My treatment was over the Easter and May day period so there were some public holidays in there. Over the Easter holiday I had one session on Thursday and the next one was Tuesday.

There was the odd machine breakdown that resulted in a few hours delay, but I was told if necessary I could have two doses in one day.

My Salvage treatment was not 100 percent successful,but I had salvage treatment based on the "educated guess", five years later a tumor was found outside the prostate bed.

Thanks Chris 

 

User
Posted 07 Jan 2023 at 12:11

Well, a further update this morning. He managed to have a few good hours sleep, but when he woke at 1.30am, all his skin was red, from his neck to his ankles. Is it the radiotherapy? Is it the antibiotics? Is it both? He googled it for a while, decided he felt ok, apart from his skin feeling warmish, so tried to go back to sleep. He managed a few more hours, then when he woke again at 7, he still felt ok, but was feeling anxious about the redness. So he's taken himself to A & E (at 8am) again, and is currently waiting to see a doctor and have a blood test. The blood test he had yesterday came back fine. He messaged two hours ago (10.15am) to say they had given him steroids and an antihistamine. It feels like things are never ending. 

Edited by member 07 Jan 2023 at 12:14  | Reason: Not specified

User
Posted 07 Jan 2023 at 13:03

This is very unlikely to be a radiotherapy problem. You have mentioned eczema and now a rash. My suggestion is only vaguely likely but quite easy to test for.

I believe HT can change blood sugar, and this increases the sugar on the skin. Natural yeasts and fungus which are always on the skin then become more active, so you can get itchy rashes as a result.

I myself am not diabetic but about once a year I buy a finger prick test kit over the counter from any large chemist and check my blood sugar.

For the sake of £25 it might be worth doing that test. I suspect you will just waste £25 but at least you might rule out one possibility. BTW it says on the side of the packet: This is to monitor blood sugar not to diagnose diabetes. Always see a doctor if you have a medical problem, not some random guy on the internet.

Dave

User
Posted 07 Jan 2023 at 15:38

He was finally home by 3. Blood tests & 2 ECG results were fine. Turns out he's allergic to penicillin. So a change of antibiotics, and the redness is slowly fading. Now he's looking forward to having some good food later, for our son's 15th birthday celebration. Followed by a good sleep (hopefully).

User
Posted 08 Jan 2023 at 22:00
Glad you sorted that out, and he is OK. Allergies can be much worse on a second time round, so he needs to be sure to tell doctors about his penicillin allergy if he has any future infection.

And Happy Birthday to Jay Junior.

User
Posted 16 Jan 2023 at 13:41

11 of 23 fr done, and other than the hot flashes in the evening, he's feeling fine so far, just a little tired in the late afternoon. Today's appointment is 5pm, tomorrow's is 8am, and then Wednesday's is 3pm, meaning three lots within 48 hours. Hopefully the strike action won't affect his appointments later in the week.

Edited by member 19 Jan 2023 at 11:45  | Reason: More info added

User
Posted 16 Jan 2023 at 14:07

Elle Jay,

I am starting this next Monday after a delay of a week because their computer got it wrong! Having 39 sessions so will continue to follow your journey with interest.

Derek

User
Posted 24 Jan 2023 at 17:26

18 of 23 fr done. Feeling a lot more tired in the late afternoon & evening. Noticed some blood in his stools yesterday, though nothing today. Only 5 more to go. He says when he done his last one, he's going to leave the hospital doing a dance like the guy in the orange shorts from the we buy any car advert πŸ˜‚πŸŽ‰

User
Posted 24 Jan 2023 at 18:49

so funny Elle Jay.    Great advert🀣🀣🀣

User
Posted 27 Jan 2023 at 08:53

20 of 23 fr done. A small amount of blood in his stools again this morning and yesterday morning. He says there's no sign in the bowl, just on the toilet paper, and it's only a small amount. He also says it only happens first thing in the morning, and though his new routine is to empty his bowels twice with 2 hours of waking, there hasn't, yet, been any sign of blood in the second one. Is this a normal occurrence with whole pelvis radiotherapy? He's not in any discomfort or pain so far, and his stools are soft, so no forcing. Does he need to tell them this afternoon when he goes for his RT? Or is it just par for the course?

User
Posted 27 Jan 2023 at 12:16

I had 37 fractions off radiotherapy and had blood when I wiped. for a period whilst having the treatment all cleared up a couple off weeks after the radiotherapy and 2 years on all good took a year for bowels to get back to normal gaz πŸ‘

User
Posted 27 Jan 2023 at 21:45

Hey Elle jay πŸ™‚

your post is very interesting as I am due to start this in April

how is OH doing in other ways such as energy general health etc?


N

User
Posted 29 Jan 2023 at 21:29

He says he feels very well, all things considered. He has a few hot flashes a day, and his emotions are, as he says, heightened. But no change in energy levels so far. He goes for a long walk every morning, and drinks two and a half litres of water a day. He noticed the fatigue half way through week three, and the blood in his stools at the start of week four. But they aren't causing him any problems and he's still functioning as normal. Only two more to go!

Edited by member 31 Jan 2023 at 09:10  | Reason: Not specified

User
Posted 31 Jan 2023 at 18:28

All 23 fractions done. Still feeling ok. Can anyone tell us what happens next? He said the radiographer mentioned something about a scan, and that nothing could be seen on one right away, as RT inflames your insides, so it would be in a couple of weeks. He didn't question it, so I thought I'd ask on here to find out if it's normal procedure. 

Edited by member 01 Feb 2023 at 09:15  | Reason: Not specified

User
Posted 31 Jan 2023 at 18:36

I had similar treatment was sent for a psa test 3months from the end off radiotherapy  πŸ‘

 
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