Looking for help with radiation cystitis management

[Carmen2]

Has anyone had hyperbolic oxygen therapy for radiation cystitis? My husband started bleeding 6 weeks ago and has been through a living hell since the bleeding started. Two hospital stays, 7 emergency room visits and 5 Foley catheters. He lost so much blood he has to have two transfusions. The radiation that did the damage is from 2014.

Does anyone know if medicare will cover hyperbaric oxygen therapy? He is also in the middle of chemo which had to be halted due to low hemoglobin. The chemo is working well so he wants to get back on it.

Would appreciate input

[tango65]

Medicare part B may cover hyperbaric oxygen therapy (soft tissue radionecrosis?):

medicare.gov/coverage/hyper...

[Carmen2 in reply to tango65]

Thanks for the link. My husband is also bleeder. He has Von Willebrans syndrome so the meds will not work for him as they thin the blood.

[tango65 in reply to Carmen2]

Best of luck!!

[Carmen2]

Thanks I will check them out. Since my husband is a bleeder his options are more limited. The three urologists he has seen don't have much to offer.

[marykg46]

Hi Carmen. After his prostrate removal and subsequent 33 days of radiation my husband bled incessantly for the best part of 18 months. I kept saying I think he's got radiation cystitis but only recently has his specialist concurred. I can't recall how many visits to Emergency Care we had (seven would have been good) and lots of admissions for him to have irrigation and pumping to get blood clots removed. He had a catheter numerous time and each time they took it out he'd get retention after a few days not to mention a number of times with infection. Our specialist thought hyperbaric therapy would be worth a try. We started a six week program but he lasted 3 days and had to return to emergency care with retention and serious bleeding. I know blood stains urine and looks really bad but actually in his catheter it was thick with clots and debris. The break through came when his heart specialist for AF said no more. She thought something had to be done to stop the bleeding. At the time he was in hospital with a serious infection. When he was well enough he had a Watchman inserted into his heart valve to enable him to go off blood thinners. After that he started hyperbaric and this time was able to finish the whole course. I don't know if it helped but he's had no trouble since and that is about eighteen months ago. Not quite a direct answer I know but I hope it gives some insight into how tricky this problem is....

[j-o-h-n in reply to marykg46]

WOW....A nightmare..... Glad he's been ok for the last 18 months. Give him a kiss and a hug for going through that nightmare...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 06/26/2019 6:24 PM DST

[marykg46 in reply to j-o-h-n]

Thanks for the good wishes. That was only half the story...the second half.... I didn't relate the first half.....clip left behind after the operation or the build up of calcium and stones plus 15 weeks of hospitalisation with infection straight after the prostrate op which actually went to his pelvic bones but not having had it he'd say nothing could compare with retention! You are right..definitely a nightmare but reading stuff on this site things could have been worse.

[Carmen2 in reply to marykg46]

The site is a blessing. When we are in "crisis mode" I turn to it for inspiration. So sorry to hear what you and your husband went through. He must be one tough guy.

We are being told 30 to 40 treatments so that is right in line with your treatments.

Hope all goes well for you moving forward.

[marykg46 in reply to Carmen2]

Yep he had 30 treatments...six weeks every week day. He coped well with those except it's a bit of a nightmare sometimes in that you have to have an empty bladder or they make you wait around until you bladder is empty. Wasn't too bad though. However, as his cancer's progressed reasonably rapidly since I guess it wasn't too successful. I try to keep across stuff but we're not experts like a lot of guys on this site and so we just do basically what the specialist tells us. I think you have to try everything that you can to delay the progress. Hope things going bit more smoothly for you now.

[j-o-h-n in reply to marykg46]

I'm cringing.....poor guy...

I bet he's your hero.....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 06/27/2019 4:42 PM DST

[Carmen2 in reply to j-o-h-n]

Thanks for your kind words John. You are right about the hero part

[Carmen2 in reply to marykg46]

Thanks for your reply. It does help a lot. We have a shot at getting the hyperbaric therapy. There is only one facility in the state of Hawaii in honolulu but I think as long as we can get medicare to cover we can get it done. I can only imagine what it was like to live with the bleeding 18 months. I am at my wits end after 6 weeks. On top of being life threatening, it is demoralizing. My husband's quality of life has taken a nosedive. Unfortunately, my husband was hospitalized again yesterday. A urinary tract infection that has gotten into his blood. He's pretty sick.

How many sessions did your husband have?

[marykg46 in reply to Carmen2]

He had six weeks every day of treatment. I really feel for you. It's just so demoralising. Sorry he's back in hospital each time I know is so demoralising and depressing. One thing they told us at hyperbaric was that at first the bleeding gets worse and so it did with Ron's first go (lasted only 3 days). By the time he went and survived the second lot he wasn't bleeding anymore so you couldn't really tell if it helped. But now apart from his prostrate cancer showing up in bones & lymph system he's really well with no pain and no noticeable effects much from the hormone treatment. Anything is worth a shot I think. Treatment was free in Australia so that was good. I do hope things improve for you both.

[Hidden]

My husband had radiation in 2011 and developed radiation cystitis during treatment with Jevtana. What chemo is your husband doing? It started after the 2nd cycle. He did one more and then quit chemo. It totally went away after he stopped. Chemo did not seem to be doing much for him. His PSA was still rising though at a slower rate.

[Carmen2 in reply to Hidden]

My husband started bleeding after his 3rd dose of Jevtana. He had a 4th dose while he was bleeding. Our oncologist said that the jevtana was not the cause but this is an interesting coincidence. The Jevtana is working well for him. PSA down to 4.7 from 22. Thanks for your response. Hope all is going well for you.

[Hidden]

It was reading accounts like this that caused me great worry about radiation treatments that were recommended for me. I chose HIFU instead. I hope your husband does OK with his a-fib too. I take meds for a-fib but was averaging an occurrence every five or six weeks. I switched from magnesium oxide to magnesium citrate. I haven't had an episode in 10 weeks and counting.

[pilot52]

I had hyperbaric O2 in 2015 for another condition ...head and neck cancer and medicare covered...no problem

[MBOY1 in reply to pilot52]

I came across your post regarding Hyperbaric Oxygen for Head and Neck Cancer. I had same cancer 5+ years ago. Doing relatively well except for extreme difficulty swallowing solid food and the dry mouth, of course. I’m wondering what your treatment was (guessing radiation) and if HBOT helped and if so, how.

Separately I’ve been been related for prostate cancer in last year, proton beam radiation, and also had TURP to improve urinary functions. As a likely result of both the surgery and radiation, I have had strictures keep recurring in my urethra. I will have another cystoscope tomorrow and likely more strictures cut. I’m running out of options thus looking strongly at HBOT. Thanks.

[pilot52 in reply to MBOY1]

My hyperbaric.. was for ORN which developed in my jaw...I do not want to be short but this case of head and neck is currently in litigation. We will go to trial in the next year and I cannot at this time comment on Tx and Dx....thank you for understanding....After the decision to reelection my jaw I saw Bob Marx in Miami....Good Luck....

[MBOY1 in reply to pilot52]

Thanks for quick reply and hope you’re managing ok....

[MBOY1 in reply to MBOY1]

UPDATE 2/14/20

Strictures seem to be under control after self dilation weekly with catheter for 10 months. Then stones developed in prostate which were removed early November. 6 weeks later while exercising aggressively I felt something wrong and started bleeding. Diagnosed by 3 docs as radiation cystitis. The clots and bleeding were accompanied by high frequency, up to 45x day! Doc put me on Myrbetriq 25mg. No help upped to 50 mg and started to see frequency go down. Now at around 12x daily.

Clots and blood didn’t stop so finally started HBOT. After around 15 sessions I noticed improvement so am continuing to the prescribed 30, all covered by Medicare B. Also stopped aspirin during that time.

Yesterday decided I needed to resume some activities so played golf, only from 100 yards in so little strain. By evening the bleeding had increased significantly. I’m wondering if anyone else has experienced similar symptoms along with HBOT and how successful you would say your experience was. I was encouraged that I was on a slow albeit straight line of improvement. Now m wondering.....

Any help please...thanks.

[monte1111]

Good luck. After reading posts like this I wonder why I'm whining about my side effects. I do hope someone has a solution for you, and real soon.

[lrgalla]

Carmen2 this is a copy of my original post that I submitted when joining this forum. My memories of the period I had dealing with the Radiation cystitis was horrific.. it was my good luck to find a very experienced urologist who was able to guide me through it all as described below. I am now back on ADT due to rising PSA but my QOL is pretty good. I send this to you in the hope it will give you some positive feelings that there may be some silver lining waiting for you.

My Name is Lee Gallagher and I live in the state of Queensland Australia. I am 68 years old and was diagnosed with advanced prostate cancer in January 2012 after becoming symptomatic with painful and increasing urination events. My Gleason score was 5+4 =9 in all eighteen segments, my PSA at the time was 4.5. I underwent a TURP to ease my symptoms and began 4 monthly Eligard injections, I then completed external beam radiation in December 2012 and my PSA dropped to 0.008 in 2013.

In late 2013 I began to experience urinary bleeding that slowly progressed to blockages with clot formation and was diagnosed with radiation bladder cystitis. I underwent hyperbaric oxygen treatment for two months in Townsville general hospital during 2014. The treatment failed and the blockages became more frequent and severe resulting in frequent emergency medical flights back to Townsville hospital. I underwent another TURP and a series of green light laser treatments to try and seal the blood vessels within the prostate bed and bladder without success. In October of 2014 I had an MRI done on a brand new type of MRI imaging machine that became available in Townsville. It was the now well known 3 tesla multi parametric MRI which pinpointed not only the exact damage and necrotic condition of the bladder and surroundings but identified and graded active cancer tumours still present in the bladder neck and remains of the prostate gland.

The imaging was so good it allowed my very experienced and skillful urologist to see that my original radiation treatment had not fused tissue and would allow a segregation of the prostate gland from the rectum making salvage surgery possible. As a result I underwent a radical prostatectomy and cystectomy (bladder removal) along with lymph nodes and my appendix. The surgery took over 11 hours to perform and required the creation of a stoma (urostomy) using part of my small bowel for urination purposes.

The surgery has given me a new lease on life and allowed me much more freedom and good health. I ceased androgen treatment in 2014 and apart from managing my stoma ( I call it my "wee sporran") I have had few issues apart from fatigue and mental slowness. My PSA remained at 0.008 right through from 2014 to July 2015 when it has started to rise to my latest test in February 2016 to 0.043. We are monitoring the rise every three months which is a bit concerning at the moment as my cancer has never produced high levels of PSA in its history. I am happy to provide any further information if anyone has any questions I may be able to assist with.

[Carmen2]

Thank you for your post. It's sounds like you had some truly great doctors. So far we have not gotten a lot of hope from our doctors. He can't take Emeril because it is a blood thinner. The other option is to cauterize his bladder lining under sedation it is apparently extremely painful and does not solve the problem in the long term. The only other option that was offered was hyperbaric oxygen. Right now he is back in the hospital with another urinary tract infection that has gotten into his bloodstream

We just have to hang in there and pray for a good outcome. Thanks for sharing you knowledge and experience with us. It is a testament to keeping up the search for a solution. My heart goes out to you as to what you went through the the bleeding and clotting. We live on Maui but are only an hour from the hospital. Having to take a plane must have been tough. I will definitely check out the MRI you mentioned.

[lrgalla]

Carmen 2:

I will keep you both in my thoughts and my best wishes for a successful outcome for you. I look forward to a positive post from you in the near future. Best of luck guys.

Lee