HT/RT/Proctopathy Observations

User

Posted 04 Mar 2023 at 00:07

Nick, you could try the pelvic radiation disease association , www.prda.org.uk. There is a link to their Facebook site on there.

They did point me in the right direction with my radiation cystitis.

Thanks Chris

Edited by member 04 Mar 2023 at 00:08 | Reason: Not specified

User

Posted 04 Mar 2023 at 06:48

Hi Chris, looks promising, many thanks!

User

Posted 28 Jul 2023 at 23:49

Its been a while so ....

Last 2 blood tests - PSA undetectable ...... One more Prostrap 3 injection to go in October to complete my 3 years of HT .....

Sucralfate Enema's ....... at a high level its basically 'self service' with a syringe (and a funnel) you make up of 10ml Sucralfate and 20ml water ... you are then supposed to lie in 4 different positions (for 5 mins each) whilst retaining the liquid in the rectum ..... not easy (I've dropped the water content down a bit ); It was a bit of a challenge at first but after a few adjustments I'm managing OK(ish). Things have improved a bit but still getting the odd bowel movement with a lot of blood....however, will continue to persevere!

User

Posted 20 Oct 2023 at 12:11

Had final Prostrap 3 injection yesterday...nigh on 3 years gone just like that... Wow....the last 12 to 18 months has been pretty tolerable bar a quite intense period of hot flushes, definitely not so many random aches and pains though.

Had a 6 monthly review with my marvellous CNS last week... PSA Untraceable... Haemoglobin continues to hover around 114...bit low! Due to the ongoing rectal bleeding...

.... Discussed next steps w/rgd to the bleeding as sucralfate not showing much benefit, she recommended trying the formalin treatment so being referred.

Next blood test March 24, next CNS review April 24.

Best of Luck to all!!

User

Posted 20 Oct 2023 at 16:17

Yes time does fly when you're enjoying yourself. It took me nearly a year to recover testosterone after my last injection. I'm glad your PSA tests have been good so far.

Dave

User

Posted 20 Oct 2023 at 18:41

Cheers Dave, might treat myself to a Deuchars ale tonight 🍺 Love reading your posts, many thanks for taking the time! 👏

Ps if anyone has experience of Formalin treatment would love to hear your thoughts... I've also asked via the PRDA website but nothing back yet... Thanks.

User

Posted 11 May 2024 at 21:04

So, nearly 7 months on from the last Prostrap 3 injection... No hot flushes, no strange aches and pains, FLW no doubt!, and the return of some functionality! Decho, if you read this there is hope! :)

Had a blood test done 1/3/24, so circa 4 and a half months post HT... PSA Still untraceable...haemoglobin at 120, so +6 from the last blood test, surprising given the amount of blood I'm still passing. .. Have heard nothing yet ref the Formalin treatment mentioned previously so a reminder will be sent....

Next blood test due circa 1/9/24 then a CNS check-in. ..where I guess we might see a PSA rise? Is it circa 6 months post the last injection or more random?

Cheers and good luck to all.

User

Posted 26 Sep 2024 at 09:05

6 monthly checks completed (blood test circa 10 months on from the end of 3 year [Prostrap] HT) :

PSA 0.04 (in line with expectations)

Haemoglobin 117 (down from 120 at last CNS review, so continuing to bounce around due to the ongoing rectal bleeding...)

Another referral to be made for the Formalin treatment (now 12 months since the first referral !)

If anyone out there has experience of Formalin treatment please get in touch , it would be much appreciated.....thanks!

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