radiation cystitis after SRT?

[ken12491]

Has anyone developed radiation cystitis after SRT? If so, what did you do to relieve the pain? This showed up 4-5 months after RT --- MRI, and cystotomy have been done, all looked normal. Tramadol provides relief - the pain is not constant - mostly during the waking hours of the day. thanks

[ken12491]

hey - worth a try --- thanks

[Tall_Allen]

Talk to your urologist about a medicine for bladder spasms - there are many: Myrbetriq, oxybutynin, tofranil, Vesicare, Toviaz. etc. (ask your uro if he has samples so you can see which works best for you)

Avoid cranberry juice, any fruit juices, caffeinated beverages and alcohol. They stimulate the kidneys and irritate the bladder make the problem worse. In fact, try to limit fluid intake, especially at night. Avoid any more cystoscopies.

[ken12491 in reply to Tall_Allen]

will do - wish i could take u to my next appt with my MO ...smile...

why no cystoscopies? was kind of reassuring to see it was clear - i actually saw the bladder on the screen...

man- avoiding a glass of wine at dinner will be difficult. but all good advice.thanks, TA.

[Tall_Allen in reply to ken12491]

The tissue is friable and easily torn after radiation. It's best to avoid inserting any instrumentation if you can.

Hopefully, one of the medicines will make it better so you can go back to your wine.

[ken12491 in reply to Tall_Allen]

TY again - much appreciated - having someone with your knowledge here helps many. Hope so about the wine.

[Pguenette]

Sorry Ken. Radiation cystitis if the bladder is a side effect of RT. Mine hit 6 years afterwards. Hematuria first, then hospitalized for 2 wks to stop bladder wall bleeding. 3 surgeries and increasingly aggressive treatments. I’m still on meds while I rehab my poor bladder. Heavy pads. But happy bleeding from penus has stopped.

[ken12491 in reply to Pguenette]

thanks, Pguenette - I ve had this pain a long time - before RT --- a just bit different now --- never bleeding and the dx is only mine. The dr have said it stems from nerve pain ( pudendal ) - I use to ride a bike a lot. We ll see, I'm having a nerve block tomorrow in NYC to that area. They also said it could be coming from over nerves damaged areas in my lower back - I have had back issue since I was 17 --- sports injuries and cars accidents. It's not a serve pain more of an annoyance - but I ( we ) have enough on our minds to be distracted by almost anything. Happy for u as well with the bleeds stopping - best to u and TY for ur comments. Ken

[patandemma]

I had have radiation cystitis---bleeding,pain,frequency,incontinence,nocturia every 1-2hrs.

Did google search--hyperbaric oxygen treatments had the most proven benefit

Did hyperbaric oxygen--worked like a charm for a while then came back with a vengeance. Tried it again---no benefit.

Consulted 3 urologists (all at major cancer centers)--all I got was sad faces.

Did my google search again--found a number of treatments w/potential complications worse than my disease. but did find a suggested treatment that seemed tolerable,w/o significant side effects--see the citation/url below

A randomised prospective study of extended tocopherol and pentoxifylline therapy, in addition to carbogen, in the treatment of radiation late effects

ecancer.org/journal/2/81.php

After 2-3 months I noted tremendous efficacy (for me) Stopped taking iron supplements (bc I was getting anemic from blood loss). Vastly decreased pain, frequency,incontinence. Nocturia down to 1x/night. Even my residual urine volume dropped dramatically

Authors kept patients on for12 months for the study, I'll stay on it for as long as it keeps working.I've been on it for 6+ months now.

The 2 drugs are ridiculously cheap. The pentoxifylline does require a prescription.Tocopherol is just OTC vit.E.

BTW,I noted in my google search on clinicaltrials.gov,that they are beginning to look at pentoxifylline as treatment for a wide variety of post radiation inflammatory conditions.

[ken12491]

Thanks Patandemma - No bleeding or incontinence and the dx of radiation cystitis is mine only --- do get up several times at night to pee but able to leave with that - do I have a choice, no. Great info and will use it if needed - I 'm having a nerve block tomorrow in NYC to that area. They also said it could be coming from over nerves damaged areas in my lower back - I have had back issue since I was 17 --- sports injuries and cars accidents. It's not a serve pain more of an annoyance - but I ( we ) have enough on our minds to be distracted by almost anything. Happy for u as well with the bleeds stopping - best to u and TY for ur comments.

Great advice and will revisit your suggestions should tomorrow's block fail me...

Ken

btw -- how did they make your dx?

[patandemma in reply to ken12491]

CYSTOSCOPY X 3--that's gold standard for dx