since September 19, my husband has been in the ER or admitted 8 times from cystitis: can’t urinate, lots of blood clots necessitating catheterizations. He has had 3 cystoscopes, a blood transfusion, developed lung clots and had to be taken off Eliquis because it counteracted the cystitis problem. So a filter was put in to catch future clots. He was scheduled to start hyperbaric oxygen today - the car was packed and we were an hr away from heading to the location (over an hour drive). But he couldn’t urinate again. Back to ER: two attempts to catheterize failed. His urologist was called down from surgery and he finally had to use a guided wire to get the catheter in. But he was so clotted nothing came out. Off to surgery again. His urine returned to clear and flowing.
now we have to get him sent home and back on HBO schedule to get started.
looking for success stories. His chemo has been halted because of this. I’m nervous as to cancer spread since he will not be able to resume until after the 8 week HBO treatments end. But he has had no quality of life these past two months with cystitis.
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I am surprised that no one suggested a supra pubic catheter. I also have radiation cystitis with all sorts of urinary complications. One day i pee just fine and the next need to self cath.
One of my urologists keeps pushing the supra pubic but i am avoiding it as long as I can. Every good day i say "I'm fine' but then there is a bad day with catheterizing and or pain from annoying to severs. I just deal with it one day at a time.
Ask about the supra pubic. If you are near a decent health care facility they can put one in and maintain it. I live far from decent care so maintenance would be a problem.
I have heard of the benefits of hyperbaric oxygen. I hope it works for you.
I know they are talking about another surgery to block off the artery and try to stop this bleeding. When it’s not bleeding he pees fine. Then those clots back him up.
I went the Supra pubic catheter route after several trips to emergency room like your husband. Generally, I like it much better than regular Foley catheter, much more comfortable.. I do have to have it changed by a urologic nurse every six weeks and occasionally it does get clogged, but I can fix that myself with a large syringe that I use like a plunger attached to catheter. Anyway, good luck urinary problems aren’t fun.
I too am suffering from radiation cystitis. I have had 3 different radiations. 1 in 2018 and 2 in 2023. For 2 months, I have been going down the same road as your husband. The pain from the blockage and the bladder spasms are unbearable.
I have had 5 visits to the ER with temporary relief. On Sept. 26 I had a fulguration of the bladder. It worked for a while and then another blockage. I have had this catheter for about 3 weeks. I have had 9 HBO treatment at 2.0 ATA (dive of 33 feet). It seems to be working. I am scheduled for another fulguration on Nov. 7.
I have 30 HBO treatments scheduled. I am currently on ADT and Lynparza. My oncologist temporarily took me off the Lynparza because of the low platelets and hemoglobin which may restrict the bladder from healing.
So, for the last 3 weeks I have had very little blood in my urine and no blood clots. But the anxiety and anticipation of future clots is driving me crazy.
I am a Registered Respiratory Therapist and I can tell you that HBOT should help with your husband's radiation cystitis. My husband completed radiation also in August of this year and we had bought a mild HBOT to use at home. HBOT has helped with his pelvic pain and burning and has had a few occasions of mild bleeding that is resolving. His CBC along with RBCs, WBCs counts are excellent after radiation. He did HBOT throughout radiation and still continues a few days a week.
They say it works if we can only start! Orientation is tomorrow and treatment #1 is Friday. But now sounds he won’t be discharged from the hospital until late tomorrow. We are over an hour’s drive from the wound center
I hope he feels better soon. My husband tried Chemo also last Nov 2023. He stopped after 1 infusion. Just didn't tolerate it. Turns out he has a hard time with methylation. If he has to do it again he will do low dose. But that 1 session seemed to help with the lymph node mets because they are gone now. Hope your husband heals and recovers soon so he start HBOT treatments.
I had the same problem but not as bad, I bled a lot when i had stents. ER 3 times, had 30 HBO treatments two years ago so far so good, but I'm always worried every time I go kind of like my PTSD from Vietnam it's always in the back ground, anyway good luck with the HBO I've heard a lot of good things about it.
Start HBOT as quickly as you can - and be sure to get at least 40 -50 sessions. I had 20 sessions at first, all was good, but the clots etc returned a few months later and I was hospitalized once per month for 4 months. Blockage as you can imagine. Had a wonderful urologist at the hospital who advised me to get a supra pubic catheter. I had trouble for months urinating, self cath was not ideal - my sphincter was not working well. With the SP 'tube" - all was great during the 50 more sessions of HBOT. I have the SP tube nearly 2 years with no more clots! Have been traveling - 2000 mile car trip, plane, cruise - all with no issue. I use a urine collection bag on my leg, and an overnight bag for bedtime. No more bladder spasms from overactive bladder, no urgency, - it has been trouble free! There are some articles that say remission or cure is more likely when HBOT is started within I think 6 months. The SP tube is a reversible procedure so if at some point you stop developing clots etc it can be simply removed. The hole closes in a few minutes. I visit the urologist about every 4-5 weeks to have it changed. One can change it yourself - or have a nurse do it. My uro does it.
We are scheduled for 40. Will hopefully do orientation on Friday and start Monday. But today there has been new bleeding so he’s still in hospital. I asked about that SP catheter but was told not until they can get bleeding under control. And can’t have a catheter while doing HBOT each day. This is exhausting for us both
I am currently undergoing HBOT for hemorrhagic radiation cystitis, 15 sessions in out of 40 ordered. When I started, I still had a foley catheter (removed after the first week), and I still have two nephrostomy tubes with collection bags. This has not presented any issues re HBOT. You may want to verify the 'no catheter' requirement with your urologist and the HBOT doctor.
the never send him home with a catheter anymore. He had a cystoscope last Monday and an embolization on Thursday. He p’d clear after and was released Friday. We are planning to travel for orientation tomorrow. He’s had some blood but is P’ing some every hour or so which was the problem all 8 ER tripes - couldn’t pee for several hours because of blockages. We hope to start HBO on Tuesday. I hope it works as we are both exhausted but I’m not too sure we won’t be back in the ER. We are staying in a hotel each week to be close to the wound center and the hospital if needed.
I had slight bleeding, no clots, with SP tube while doing HBOT. also had to have ear tubes put in as I could not tolerate the pressure. A pleasure with them. Only some ENT doctors do it in the office. Easier to schedule.
My hubby had to have tubes put in after Covid. He just had so much fluid buildup. Our doctor did it in the office. (Tubes fell out about 8 months after)
Sorry to hear of his troubles. It is important for men with prostate cancer to know all the risks associated with the various treatment options. I read too many accounts like this and it scared me away from the radiation treatments they steered me towards. I chose a different path. I hope he finds effective treatment and relief very soon.
The sad part is he probably didn’t need the prostate removal or radiation. We didn’t know in 2016 to ask for a scan. After both were done, his PSA was unchanged so we got a scan, bone Mets all in the spine, stage IV
Radiation, 35 rounds, was done in 2017 after prostate removal. His urologist said he sees this cystitis up to 20 years later. The oxygen chamber pumps in pure oxygen, used for burn victims and others with wounds. It’s done in a wound clinic, not a cancer center (at least here in N Illinois)
Same here, in a wound center. When you get to 30 sessions discuss adding 10 more if husband is tolerating it. More the better, and those extra might help avoid radiation proctitis. That's what my urologist recommended. And I did.
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