Radiation Cystitis and Nattokinase/Serrapeptase

[cigafred]

I sometimes suffer bleeding from my bladder due to radiation cystitis. Sometimes it stops quidkly, sometimes not, once, after weeks of bleeding, I ended up in the hospital where amino caproic acid stopped it. Should I stop these supplements during the bleeding episodes? I am not requesting alternative treatments, just whether or not I should stop the supplements. Thanks.

[cujoe]

c'Fred - I was introduced to nattokinase and serrapeptase by the now-erased food chemist Nalakrats - and have been taking the Dr's Best combo supplement (Natto-Serra) for many years now. My interest was mostly due to bone/ct scans back in 2017 that indicated : atherosclerotic and joint calcification - with the expectation that nattokinase+serrapeptase would possibly help dissolve some of these deposits and help prevent future ones.

A major benefit of the Dr's Best formulation is that the K2 clotting factor is removed, so there is no concern for those taking a blood-thinner. (That would be especially true for warfarin, as it specifically blocks K2)

You may be well-informed about the effects of both natto and serrapeptase, but here are several papers and a Healthline article that may help you with your question about their use in your specific case.

Nattokinase: An Oral Antithrombotic Agent for the Prevention of Cardiovascular Disease, Int J Mol Sci., 2017 Mar; 18(3): 523, Published online 2017 Feb 28

ncbi.nlm.nih.gov/pmc/articl...

A single-dose of oral nattokinase potentiates thrombolysis and anti-coagulation profiles, nature, scientific reports, article, Open access, Published: 25 June 2015.

nature.com/articles/srep11601

What is Serrapeptase?, Healthline, Current Version, Aug 15, 2024.

healthline.com/nutrition/se...

Best of luck getting the rad-cystitis under control. I have a very good friend who is now forced to use a suprapubic catheter due to over-radiation of his prostate. He now wishes he had treated with surgery.

Ciao - cujoe

[cigafred in reply to cujoe]

Thanks, I will check out the articles, though the titles alone tell me I need to stop the supplements when gross hematuria pops up. Yes, I too got started by Nal and Patrick. I had salvage radiation and, later, radiation to the para-aortic and common iliac areas. It was the salvage radiation that gave me the cystitis, I believe, since the very old radiologist (this was in the days before I got involved much) never told me that rule number one is to have a full bladder. And, of course, with prostate problems, one becomes accustomed to never passing by an opportunity to empty the bladder, and there was a loo right beside the door to the radiation room, so . . . .

[cujoe in reply to cigafred]

Due to poor final biopsy, I asked for adjuvant IMRT (8 weeks) to be advanced to 3 mos post surgery vs.the standard 6 mos. Not sure what the SOC suggested post-prostatectomy heal time before RT is now, but back in 2014, I was willing to risk less recovery time vs hitting cancer that was out and about earlier. Looking back, I can't say I got much benefit from the RT,as I had BCR#1 in 2017 and about the same time had to have AUS implant surgery for severe incontinence. On the positive side, I'm still very much alive and kicking and having avoided extended use of ADT in favor of bical+5ARIs&low-dose tamox have high-normal T and an excellent QOL.

I had a PSMA scan after BCR#2 that showed para-aortic+ lymph node chains like you, but chose to refuse IMRT. There were too many tiny node to treat w/ SBRT and, lacking any clinical evidence that benefits would outweigh the risks of RT damage to surrounding organs and tissues, I opted out. My RO had refused RT when she was diagnosed with cancer as a med student, so she was completely neutral on my decision not to treat.

I sent the following video out of Yale Urology to my friend, as he lived in nearby MA. He had done hyperbaric O2 treatments, but claimed no noticeable benefit. I also suggested that he should contact Yale and schedule a consultation, but he never followed up with them. The presentation is not the smoothest I've ever seen, but it is very comprehensive and describes in detail the full range of treatment options available.

Management of Radiation-Induced Hemorrhagic Cystitis, Yale Urology, Katelyn Johnson, MD, PGY-2, 3,879 views Feb 7, 2020.

youtube.com/watch?v=WWlhgUV...(Not working as expected?)

BTW, I do remember the "full bladder" recommendation for my IMRT, but never got similar advice prior to my PSMA scan. Fortunately, I went to the Plarify site and found their recommendations for prior- and post-scan hydration to flush the PSMA ligand out of the blood/kidneys.

[cigafred in reply to cujoe]

Wow! Yes, her presentation is anything but professional, but the information sure is there. It is the first place I have seen amino caproic acid mentioned as a treatment. My urologist used it after a lot of investigation, irrigation, etc., and mentioned that it could not be used several times or it would cause the bladder to shrivel up like a walnut. I have also learned to self-catheterize to avoid ER trips, but only had to do it once during the last few years.

I have been having occasional hematuria, usually for just a few days a couple of times a month, for some years now. I have tried to pin down urologist as to why he is not recommending HBOT, but he wiggles free. I do not want to do it because of the time required. In the current case, the blood flow was looking a little lighter yesterday and I skipped my afternoon natto/serra. By evening there was no more hematuria, so I have restarted Natto/serra. Many thanks for bringing this information to my attention.

After many years on ADT I have made my peace with no T. When I experimented with BAT I did not see much difference in QOL, so maybe age is now the overriding influence.

[cujoe in reply to cigafred]

CIGAfred (now i "get it") - From the little I know from searching to help my friend several years back, HBOT is still considered to be the most-recommended frontline treatment for rad-cystitis. I am surprised that your uro doc has not strongly recommended it?

As for your "occasional hematuria" (that usually is " just a few days a couple of times a month, for some years now"), I dealt with severe incontinence for 4 years after surgery and adjuvant-IMRT - and then again when the first implanted device failed in the middle COVID (spring of 2020). I had to wait 6 months due to the replacement surgery not being a "critical care" procedure under COVID restrictions. That allowed me to quickly become reacquainted with the QOL drag of severe leakage and daily 3-4 incontinence pad use.

Nothing medical healthcare has done for me (so far) has come close to the QOL improvement provided by the AMS 800 implant. From my own experience, I think it is very deserving of its characterization as the "Gold Standard for male incontinence". I mention this, because if HBOT could resolve your monthly episodes of hematuria, I expect, like me, the inconvenience of the treatment routine (in my case, 2 x a very invasive surgery) would be well worth the QOL improvement - of course, providing that it proved successful in resolving the hematuria. This is just an IMO-fellow-patient-parallel-experience for you to consider.

Best of luck with an eventual resolution, regardless of via an intervention or the healing effects of time.

Stay S&W, Ciao - cujoe

[cigafred in reply to cujoe]

Great that the implant solved the problem. If I were sure that HBOT would solve mine, I might. The Yale presentation you listed above was not negative on it, but, as my aged-brain seems to recall, the success rate was far from universal. For now the hematuria is not a big life-style problem. In a period of several years I have only had to self-catheterize once, and I have a supply of catheters should additional be required. And now I think the temporary cessation of natto and serra may make this no problem at all. [Brings back memories of the time I had a hemi-laminotomy for a lumbar radiculopathy. Woke up in intensive care--no back pain at all, ever after, but, down there and even though on a drip, intense pain. They could not find the urologist on call (it was now Friday evening) and finally the nurse got one on the phone and he instructed her on deflating the catheter balloon so urine could flow, then reflating it. Unfortunately, the original problem was that the balloon had been inflated in my urethra, as it was a second time. No sleep that night despite the pain drip. Saturday they punched a hole in my stomach to drain the bladder since my urethra was totally f'd, but great pain until Monday morning when a surgeon fixed everything. I assume the original problem was a result of a urethra affected by my prostatectomy, but the catheter insertion was done by the anesthesiologist who, in his former life in the Balkans (Serbia or Montenegro) had been a urologist.) Isn't this fun!

[cujoe in reply to cigafred]

Fred - "hemi-laminotomy for a lumbar radiculopathy" sounds like something Chrysler Corp might have had as an option for one of Richard Petty's NASCAR race vehicles back in the days of my youth. However, I see it has to do with a procedure to remove a troublesome part/all of a vertebral lamina. The Foley catheter is a niffy design, but it DOES require that the balloon be inside the bladder before it is inflated. I wear a medical bracelet that alerts medical personnel that I have the AUS implant and that it should be deactivated before catheterizing me in the event of an accident, etc.

I assume the NASCAR procedure solved your back pain issues?

[cigafred in reply to cujoe]

Yes, immediately, 100% pain free. 5 doctors puzzled about it and tried things like an epidural, this doctor saw the MRI, in 15 seconds said "there's your problem," and it seems he was right. Took off a small piece of the vertebra--an arthritic growth he said--that had impinged on a nerve. There are some great docs out there.

[Boacan in reply to cujoe]

Whatever happened to Nalakrats? He seems to have disappeared from this forum.

[cigafred in reply to Boacan]

He was disappeared.

[NPfisherman in reply to cigafred]

Disappeared... what a term... maybe it should be our code word...

[cujoe in reply to Boacan]

He had a run-in with the powers-that-be and, as cigafred said, was "disappeared". Kicking him off of a partcular forum may have been justified, but erasing his years of valuable contributions to HU's patient knowledgebase was not.

[cigafred in reply to cujoe]

Well said.

[NPfisherman in reply to cigafred]

see my comment...while it is there....fortunately, I have proof of my statement...

[NPfisherman in reply to cujoe]

Dog Wonder,

Maybe our other code term might be vanished without a trace...

DD

[NPfisherman in reply to Boacan]

Like many posters that were here, they just disappear like magic... poof....gone... it's all part of the moderated, yet unmoderated FPC... They direct people from this site claiming unmoderated, so other sites increase numbers, provide more donations, and get you to believe what their posters, or one particular poster believes. Write something offensive to a poster, and see what happens...Sounds like moderated to me, and perhaps, too heavily.

Offers to be a moderator, even to allow this site to vote on a panel of moderators is ignored... Self rule... not for you and me... Where you can make comments to HU about this site is unmoderated is no longer available... there is no replying--they turned it off--see below:

healthunlocked.com/fight-pr...

Oh, you can express your sentiments (they wish you would)... Possibly, under those circumstances, the powers that be can utilize your unhappy expression to take over the site for moderation, boot anyone that disagrees with them (like us), and take full control...

The Supreme Court ruled that HU can not remove this site for lack of moderation-- freedom of speech, but they can moderate speech.

The dog wonder and I swam to this island years ago, after having all our privileges removed on another site.... Neither of us can message anyone, unless we first get a message from them... Freedom of speech?? Not so much...

Just one posters view--IMHO...

DD

[NPfisherman]

Fred,

Thanks for posting....Sorry to hear about your issues.... Terror Dog offers sound advice and information...

DD

[cigafred in reply to NPfisherman]

Is it ever otherwise?

[NPfisherman in reply to cigafred]

Maybe, I am just partial to that old dog... but, no....he is usually spot on...