Has anyone had hyperbaric treatment for chronic bleeding from PCa radiation treatment to pelvic area? My husband's bladder seems to keep producing clots (prostatectomy 2014), IMRT (2016); many cystoscopies, etc., Foley 24/7 recently, incontinent upon its removal, cathing 1/day now but clots & blood keep forming with intermittent complete blockage. Uro prescribed PT Kegels, I don't think it's enough.
Hyperbaric treatment for radio-damage... - Advanced Prostate...
Hyperbaric treatment for radio-damage to bladder
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Lyubov
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I know 2 guys who have - 1 had good results, one had no improvement.
As far as I can determine, Medicare covers hyperbaric for: "Soft tissue radionecrosis as an adjunct to conventional treatment." But I also read 80 sessions are required! Haven't discussed any of this with uro and/or med onc. But if it continues will do so. Personally I believe it's so badly damaged simply will not heal on its own.
It would seem logical.
Is he also taking Trental for radiation damage? Plus maybe a little daily low dose viagra?
Both are no brainers with basically no side effects.
Not taking Viagra. Don't know anything about Trental. But thanks for the input.
The viagra is called sildenafil in small daily 20mg doses.
The both improve cellular access to oxygen.
Stopped it because insurance covers only 6/day! Also, at his age (77+) & incontinence issues, etc., he thought no use anyway. . . Uro hasn't ever said to take for "circulation" reasons. . . Thanks for response, though.
Is your husband's radiation cystitis been documented by cystoscopy?
If so,then HBT is the only humane treatment for it (as opposed to formalin treatment of bladder mucosa)
Had HBT done at Arcadia Methodist Hospital in Arcadia,California. Very rapid symptomatic improvement and marked reduction of gross hematuria/clots.
No, the uro hasn't come to that point / decision, but I think that's what's going on. Hubby has had these issues for at least 3 years now, initially cystoscopies provided relief. But I believe too much damage has occurred for natural healing to take place.
There is some recent double atmospheric pressure hyperbaric trial in Israel that apparently extends life expectancy by regenerating telomeres.
I went thru it about 10 years ago, it helped for about a year then I developed constant forming of bladder stones. I then had my bladder removed I can still say today, what a relief best thing I ever did ( along with a section of colon) it’s been 6 years now and still active!
Worked for me. Scheduled 60 treatments, completed 30 so far. Bleeding stopped, no more clots either. Damage was to lower bladder from a kaiser radiation over 10 years agol
• in reply toabmicro
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Hey Lyubov!
You can buy your own hyperbaric chamber. They are relatively inexpensive today and with COVID19 --??? One of the lower priced units on the site below.
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Hyperbaric Chamber $3995 | Quality at an Affordable Price
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I did LIVE O2 for about two years. At first I was on high O2 for 1 minute and low O2 for two minutes. Then we switched around. The Doctor used this setup himself as LIVE 02 training promotes soft tissue healing. It took some getting used to. The Doc upgraded the first bike which I think may have been what the LIVE O2 folks sold at the time. He bought a LifeFitness LifeCycle --oh yeah! Nice! I used a resistance level of 8 with this unit. There is a large bag which an O2 generator fills with 99% O2 to prepare for a session. The Doc had the best O2 generator, the high volume unit. Competitive cyclists would come in for LIVE O2 training in the beginning. The Doc charged $65 a session. I pushed hard. I was always a competitive man and that hasn't changed. A pulse/ox on a finger to monitor those vitals and a 1 minute warmup to get my heart rate into the 3 digits. 2 minutes high O2, (99%), followed by 1 minute of low O2, (15%)--there is a switch that changes from low to high at your finger tips. When switching from high to ow and low to high you do a burst on the cycle. I would hit around 160 rpms at the peak and then of course drop right off back to a comfortable rpm above 3 digits. I did 7 cycles and would begin to sweat about half way through. I was weighed before and I weighed myself after the session ended--but I was still sweating-- would usually lose a lb. although the heavy cotton T-shirt would be holding some sweat. The pulse ox would indicate that at the lowest point my O2 level would be in the low 70's. Once switched back to high O2 my O2 level would recover quickly to about 99%. About a 5 minute cool down, cycling moderately, the O2 bag would be empty and my tissue flooded with O2 because all I was breathing was 99% O2. As for getting my O2 down as far as I did I had often done underwater swimming when younger and had been able to swim underwater for about two minutes. I thought that was sort of unheard and then I read about free diving records!
My tissue, my flesh would stay a rosy color for rest of the day after one of these sessions. I guess it was the O2 in the tissue. I had more than one person say that I looked very well or had good color. I believe that as the cells are starved of O2 on the low cycles that when switched to high O2 my body, starved for O2 just sucked in the oxygen and the 5 minutes or so cool down was all on high O2, flooding tissues that wanted O2 while my blood was circulating hard from the exercise and trying to maintain homeostasis, my body temp--by getting core temp to the surface by using blood as the body's coolant and the skin as the radiator.
The Doc decided to go with a small chamber as some patients really wouldn't be able to do the cycle. I got a call from the office one day. Because of space the LIVE O2 unit was going! I was offered the entire set up including the LifeFitness Cycle for -- $750. I didn't take it. We all have regrets don't we! Oh well!
The Doc and I took the unit he had in a sort of athletic way as he had played football at one time.
The oxygen level we breathe at sea level is 20.9%. The low O2 setting at 15%, while the body is under demand for O2 while cycling, quickly puts one's body into an O2 deficit. Once those cells sense O2 again they suck it right in.
I was a first responder at a pharmaceutical company where I worked for 14 years, HAZ MAT and Confined Space Rescue. I was also the chief of the Emergency Response Team, an elected position, for 4 years. Being on the ERT was just a part of the expected requirement of an employee.
At 19% to 15% the body's ability to work strenuously is reduced--Mile High Stadium?
At 14% to 12% coordination perception and judgement are impaired. As the body tries to get more O2 respiration and pulse rates increase.
A link to the LIVE O2 site.
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LiveO2 – Breathe Deep. Be Well.
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Another interesting thing that started as a way to increase bone density for the elderly--hmm--hmm--how dare they! The new 70 is the old 45?? The vibration plates! Those who can't walk or exercise stand on them to mimic the "Form Follows Function" that exercise provides for skeletal health. Imagine when it was found that standing on these plates accelerated soft tissue healing! The NFL teams began using them and found that standing on the plates also speeded recovery from hard workouts. Many of the players bought their own vibration plates. They can be found at GYM SOURCE or Amazon and many other vendors.
Currumpaw
I went thru 30 sessions of HBOT last winter at my local hospital. I had several complications resulting from proton beam therapy for PCa. Radiation cystitis and other radiation induced issues are fully covered by Medicare. While you may be in chamber with a few other people, you will be wearing an airtight plastic hood so I don’t think Covid is any issue. My results were incredible, beyond any expectations. The healing of various issues has continued months post treatment. By the way at my hospital they typically only do 30 sessions believing that if it didn’t work by then it probably won’t. I do have some post oxygen issues such as cataracts worsening faster and high blood pressure which I’ve never had. Now using meds to control. You can discuss these with the doctor. This is a tedious program. Mine was 5 days a week for the 30 sessions. You are in the chamber about 2 1/2 hours a day with 3 30 minute dives as they call them. My uro said it might not help but couldn’t hurt. I am thrilled with my results, beyond my best hope. Good luck and let me know if you would like further info.
I appreciate your sharing your experience. We'll first have to discuss with uro. Just not sure hubby could withstand this rigorous a regimen. Also somewhat claustrophobic. Just wish he didn't have this horrible problem . . . and of course he maybe having another recurrence. We'll learn when he gets PSA next month!
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hi I see it’s been awhile since you posted this but how is it going for you? I have had 40 rounds of Hbot for radiation cystitis and started bleeding again just 2 days after my last treatment. My dives were in a mono place chamber at 1.5 ata for 90 minutes. I’m very disappointed.
My hubs completed 40 HBOT sessions--5/week. Don't know the technical details of the chamber. No relief achieved throughout the sessions. They coincided, unfortunately, with a tumultuous time in that we had to move from permanent dwelling (sprinkler failed causing lots of water damage) to temporary place for almost 2 months. Just returned home.
Following his last Foley change nearly 2 weeks ago, for the first time in years his urine has been free of hematuria. This morning, however, I noticed some specks. So, again, I can't be terribly optimistic since that's how it starts -- a few small specks then bigger + clots. I'm hoping against hope it won't happen & if it does, we'd probably consider more HBOT if insurance covers.
My husband has been miserably suffering with this for 4 years, the last two exceedingly so. Much worse than the RP. If we had to do over again, we'd skip the IMRT he had in 2016 & try something else -- ADT combinations with other drugs, perhaps.
If we would have known, we'd have looked for the top-notch experienced urologist/radiologist/oncologist team to deal with the issue from the very beginning. E.g, my understanding is that the sooner the HBOT is administered the better success chances. My husband is going on 80, which doesn't help in terms of healing, strength building, etc. It has been very, very tough.
Sorry to be so down -- perhaps I'm giving you the absolutely worse case outcome of post radiation therapy (36 IMRTs) radiation cystitis. (Also now has radiation proctitis -- lower bowel/rectum difficulties.)
I did not have any improvement of symptoms until around 6 months after HBOT ended. Be patient and I will be thinking of you. A week after I finished thirty treatments I couldn’t pee and ended up in ER in middle of night. The body heals slowly though the HBOT speeds it up.
I've done quite a bit of research regarding Hyperbaric Oxygen treatments when my husband developed radiation cystitis that was confirmed with a cystoscope. He had radiation treatments 5 years ago and began bleeding and passing clots in his urine last year. We inquired about Hyperbaric O2 and found that it was covered by his insurance (BCBS). We treat the condition by having him drink copious amounts of water, lying on his back for several hours, taking stool softeners, eliminating tight clothes that cinched his waist and avoiding spicy foods. So far, so good.There are other treatments for radiation cystitis, but the Oxygen appears to have other beneficial effects along with treating the bladder issue.
Personally, I could never be in a hyperbaric chamber without being heavily sedated, but my hubs says that the chamber "closeness" wouldn't bother him at all.
Glad you mentioned the "closeness" in chamber. My husband gets claustrophobic even when he gets an MRI. Although the newer more open ones don't bother him so much. Thanks for your input.
I also have radiation cystitis and pee blood clots. I always have to have a catheter because clots won’t pass. I just completed 40 rounds of Hbot in a mono place chamber at 1.5 ata. I started bleeding again 2 days after my 40th treatment. I’m very disappointed and wonder if 1.5ata is enough? why does he drink a lot of water and avoid tight fitting clothes?
Sorry, I wrote long reply to your other comment & didn't fully understand your situation. Sounds pretty tough, too.
Hi J555jh. Perhaps you should ask your doctor about cauterizing the "bleeders" in your bladder. My husband had that done about 8 weeks prior to starting the HBO treatment because he had been bleeding so badly and passing large clots. Basically, the doctor performs a cystoscopy with a cautery that has a light and a camera attached. The doctor goes into the bladder and cauterizes any bleeders he might see. The procedure was done under general anesthesia and took about 25 minutes. My husband stopped peeing clots and blood very quickly after having it done. (outpatient treatment) He had a day or two of rest and has never had a bleeding problem since and that was almost 2 years ago. Of course there are no guarantees that the bleeding won't start at some point in the future and at that time, we would probably choose the same route. After the cauterization, he had his HBO treatments. Although they were time consuming, he sort of "enjoyed" the sessions and we feel that they were beneficial. As far as the drinking lots of water - that flushes out the bladder andlightens the color of the urine so it doesn't look so scary! We found that constrictive clothing around his waist seemed to exacerbate the bleeding, so that's the reason for the loose clothing. Good luck to you and please let me know if you have any questions and also to let me know how you're doing.
thank you for your quick response. I had that done initially and I had already stopped bleeding. I will go in again in a week for a Cystoscopy. We like to travel (driving mostly) but I can’t see driving more than a couple of hours from the house, and since this is a lifetime condition that can occur without warning, I feel this is for the rest of my life. How do y’all handle this?
Not so well and getting more & more discouraged that there is anything that can realistically be done. Following the last Foley change out, he had 9 days of regular looking urine. This morning it was red (bloody) again! He's been drinking lots & lots of water, but as soon as he does even light activity, the bleeding starts up. The scar tissue clearly just will not heal. Because of AGE (80 almost) the surgical options that remain to the best of my knowledge would be far more than he could endure.
In short, we don't expect any improvement. . .and feel as though we're nearing the end of the line
We monitor the urine color and have our urologist on speed dial. We know that cystitis is a lifetime issue of radiation, so we take one day at a time. We also do the PSA tests every 90 days or so. Watching that like a hawk. Take care and best wishes for a good outcome.
How very kind you are. Thank you. At our age of almost 80 and having been dealing with this (on top of the dx, RALP (2014), IMRT (2016) & then the hematuria / radiation cystitis since 2018, we struggle to get the energy & motivation to keep up the fight. But we will do our best and appreciate your thoughtfulness & encouragement.
Echo..... echo..... echo......
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 12/7/2020 1:48 PM EST - Honoring those lost on 12/07/1941
Sorry you and husband are here. Chronic bleeding, from anywhere, just doesn't sound good. Hope you find something that works. I have to admit it, I first read it as "Hyperbarbaric."
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