Multiple PAEs

Thanks Alan for the good wishes and of course I wish you good health and happiness for 2019 and the remainder of 2018. My best gift this season will be to hear that my recent MRI is clear of any suspicious regions!

Take care

Howard

Hi rdemyan,

I am 69. I think this recent UTI has thrown me for a loop. It is my first one in over 3000 self-caths . I had hoped that doing CIC would be temporary until a new truly minimal BPH "cure" was found. There are 2 companies that have been working on novel, once-a-year injections into the prostate that seemed to reduce BPH symptoms in clinical studies. But both companies are now failing financially so it looks like CIC forever.

I am not a big fan of PAE for many reasons but since I had it there have been some advances in how it is administered. Also it is now covered by insurance. The main problem with PAE is that it cannot target directly the blood supply to the peri-urethral region where much of the BPH lives. But if advances in technique have improved this capability then it might be worth a second look before trying something more invasive. Hence my new thread here to see if its effectiveness and durability have improved.

Hi Howard:

Yeah, I think I know the drugs you are talking about. One of them is fexapotide triflutate. I had high hopes for it as well. I did some internet research on it and found a blurb in an FDA posting that it was shown to reduce the size of the prostate by 20 to 25% after a month. However, it's produced by a startup company, and as you note, they are close to bankruptcy. Plus who can trust the self-reporting of results when the company's survival is on the line.

Can I ask why you don't want to have one of the BPA surgeries intended for large prostates. If it were me, my main concern would be a procedure that has the lowest probability of incontinence. RE is something I think a guy can readily learn to live with. Impotence, is more undesirable, but you have to weigh the risks versus the rewards. I know I'm not telling you anything new, but it just seems like with a 300 gram prostate you have to do something more "radical" than PAE. A 40% reduction still leaves a 180 gram prostate.

Whatever you decide to do, best of luck and may your MRI show no issues.

Thanks for your good wishes. I am very nervous.

I agree with you. But the only surgical procedure offered to me locally is an open simple prostatectomy which the urologist said is risky for my size due to bleeding. To get the other procedures I would have to travel and be away from home for a few weeks while I recover in a hotel room, assuming no complications. This is very undesirable but if that is my only option I would have no choice. The nice thing about PAE is that I could be home in just a few days. FLA is in between but the cost including hotel and travel would be over $30,000 as it is not covered.

Howard,

Have you considered Finasteride to shrink your prostate?

There has been controversy over Finasteride and increased G7+ cancer (see Prostate Cancer Prevention Trial, which began in 1994). Recent studies seem to overturn the earlier findings that implicate Finasteride in more aggressive cancers.

Finasteride has a long list of potential adverse side effects including gynecomastia (male breast enlargement), depression, loss of libido, reduction in semen production, ED, etc. Nasty side effects to be sure.

But if it can shrink your prostate by 30%, say from 300 cc to 210 cc, you might have a better outcome with either a traditional open partial prostatectomy or a robotic prostatectomy. Granted, that is major surgery.

I recently talked with my urologist, who is one of the top prostate surgeons in the world at one of the top urology centers in the US, and he said if he did a partial prostatectomy on me (my prostate, depending on source of measurement, is 150-175 cc), it would not grow back in my lifetime (I am 60, so I have another 10-20 year life expectancy).

Of course, you can look into HoLEP at places like Indiana University Hospital, Vanderbilt, Mayo, etc.

I want to avoid intra-urethral procedures. I'm not a candidate for TURP - and frankly, would never consider if even if my prostate were small enough.

I'm sorry to hear you need to repeat PAE. I know there are many success stories with patients of Drs. Bagla, Bhatia, Isaacson and others, but there are many failures as well.

As I try to tell my wife, there are no sure things when it comes to the prostate. All procedures carry certain risks and different outcomes, with wide variation from man to man. Even the process of trying to detect cancer is difficult, as many men and their urologists "chase cancers" for years, repeating biopsies and PSA tests, MRIs, etc. trying to find the cause of elevated PSA in the face of repeated negative biopsies.

I do wish you the best, Howard.

Michael

Hi Tom:

I hear what you're saying and a guy should understand all of the issues to make sure that a BPH surgery is the right way to go. But when you're prostate is 300 grams, it would seem to me that a reduction in size is absolutely necessary even if it is ultimately only a component of the overall treatment needed. In other words, it's hard to imagine that the symptoms are not at least partially due to a prostate this large in size.

Hi Tom,

Thanks for your comments. I am a disciple of jimjames (and miss him very much on this forum ) and he always advocated for what you say here. I do know that I do not have a median lobe at all from a recent cystoscopy.

But here is an interesting test I do from time to time. Every six months I take one prednisone tablet (20mg). This is a potent anti-inflammatory. So if all my peeing problems are due to my large prostate, which is mostly caused by hyper-inflammation then I should be able to pee better. And in fact that is what happens. For about 2 days I pee like proverbial race horse with just a minimum residual. But then when the prednisone wears off I am back in the stall again ( literally). So I know my BPH causes all my problems. Prednisone is a dangerous drug taken over time so it is not the solution.

CIC has literally saved my bladder and kidneys these past 2 years and in fact has allowed my bladder muscles to regain their strength.

The nice thing about FLA is that it targets just the offending tissue around the urethra that is compressing it. So even though FLA may only take out 20% or less tissue it is very effective in reducing BPH symptoms. PAE on the other hand tends to target tissue in the outer regions of the prostate which is where my 40% volume came from and none of the offending tissue was removed. PAE can be more aggressive in getting in closer to the urethra but then it runs the risk of embolzing the urethra or rectum or bladder!

Howard,

As you stated, prednisone is a dangerous drug, and 20 mg is a high dosage. Are you consulting with your doctor when using prednisone in this way?

Your results are interesting and certainly suggest the inflammation component that is causing your urinary symptoms.

Others on here have tried Serrapeptase. It attacks inflammation. Completely natural and might be worth a try. Note: it positively must be taken on an empty stomach in order to have any effect.

I also believe in natural anti-microbials, and so I eat a lot of onion and garlic - in guacamole, in soups, with roasted vegetables (all organic, by the way) - to get the health benefits of these. Also, large doses of Vitamin D (30,000 IU per day) to help the immune system.

I attack the problem this way because I suspect some of the inflammation I have is due to a chronic infection I received from my biopsy in 2015.

And Howard, please read up on estrogen mimicking chemicals and estrogenic foods. Avoid these. Try to eliminate all dairy products, or only consume 100% organic dairy. Eat only grass-fed and grass-finished beef. Avoid plastic containers (BPA is an estrogen mimicker). Men's bodies are being devastated by the xenoestrogens in the environment - and this is leading to the meteoric rise in prostate cancer and debilitating prostate enlargement.

If you give these a try, please let us know if you experience any improvement in symptoms.

Michael

Howard,

From what I have read on this forum, Dr. Bagla is able to target the median lobe using PAE. I believe this was a problem when PAE was first introduced. I am not 100% certain of this, but I have read it here several times.

Dr. K can target BPH nodules near the urethra, with about 2 mm precision. He is not concerned so much about the overall prostate volume as he is the effectiveness of targeting adenomas (non-cancerous nodules) that compress the urethra. He had to refocus my thinking as I was centered on prostate reduction - i.e., quantity of tissue removed, not quality (effective targeting) of tissue removed.

Michael

PS - what happened to JimJames? I know he was a huge advocate of CIC and saw him on this forum numerous times.

Thanks Michael for this wealth of information. Did you have FLA with Dr. K?

I have been on Avodart for 15 years now. Initially it did reduce my prostate volume by half and my BPH symptoms. But over the years it has lost its effectiveness and my prostate regrew and continues to grow. But I cannot get off this terrible drug due to "dudasteride syndrome" where the prostate then makes massive amounts of DHT which grows the prostate at an accelerating level.

Thanks for your other comments and advice. I try to limit hormone containing foods but it is difficult. I am mostly a vegetarian now but do eat eggs and biologic yoghurt.

I will look up some of the other items you mention. I don't do the prednisone as much now but it sure gives the illusion of the fountain of youth.

All the best to you and thanks again. Howard

You're welcome, Howard.

I never head of dutasteride syndrome.......makes me leery of going back on Finasteride. I was on it somewhere around 8, 9, maybe 10 years ago. Didn't like the side effects but it dropped by PSA. My prostate was smaller then so my LUTS were much less bothersome.

I have not had a procedure done. I did consult w/ Dr K. Of all the options, FLA performed by him is my preferred treatment. It comes down to $$ for me.

To protect my bladder and kidneys I may consider open prostatectomy. I know it has risks and a longer convalescence, but if it will keep me "open" for the reminder of my life, then maybe it's time to do something major.

HoLEP is still on the table, but again, I don't like the procedures that go through the penis.

It's a little disheartening to read of failed PAEs. I had hoped it would have a higher success rate.

Look into DIM supplementation. Research how it may/may not reduce DHT conversion.

I think this ultimately becomes a multi-faceted approach for men who don't do surgery: diet, supplements, rule out infection, attack causes of inflammation.

I'm still considering Dr Bagla because PAE is covered by my insurance.

Thank you,

Michael

Google "HolEp vs open prostatectomy". Everything favors HolEp.

Thanks Michael. Why not consider also CIC? If I can learn it anyone can and it protects the bladder and kidneys. I've been able to integrate it into my life ok. This was my first UTI in over 3000 catheters so that is a good record.

Also there is the robotic simple prostatectomy which is much less invasive than the open one. I am also considering that too.

All the best

Howard

Oh and also please stay away from proscar/avodart - they are poisons! They ruined big parts of my life.

Hi Howard:

I've been taking dutasteride for five months along with alfuzosin. Would you mind elaborating on the detrimental effects of dutasteride that you have experienced.

Thanks.

Howard,

Probably because the thought of it makes me squeamish. I can't comprehend doing that.

I truly thank God that despite having a prostate that is very big (150-175 cc), I can urinate pretty well most days. Some nights are difficult and it takes 10-12 minutes to partially empty my bladder.

Last week, as an example, I voided 420 cc, then 3 hours later voided another 420 cc.

One day last week, after I left home for work, I went 8 hours without urinating. The next day I went 6 hours.

I take 0.4 mg Flomax between 7 pm and 8 pm most nights. Some nights I take 0.8 mg. I am trying to reduce my dependence on Flomax.

Some nights I get up to pee only once, and I am so happy in the morning. Other nights, I get up four times and sometimes have to stand in the shower and lean against the wall while it takes 12 minutes to do what should take under 30 seconds.

Sometimes I feel like I emptied myself; other times like there's a lot left in my bladder.

I was afraid of a urodynamics study because of the catheter.

My PSA density is under 0.035 and my % free PSA is 31%. My 4K score is 3%. My PHI is 50% - the only indicator that is not good. My MRIs are negative. My problem is cancer has not been ruled out and I probably am dealing with a chronic infection after my biopsy to go along with BPH.

I'm only considering Finasteride to maybe get my prostate down to 120 cc before I have something done.

JimJames suggested CIC. I think you and Jim have much stronger stomachs than I do. I wish I had the courage. I've had some uncomfortable medical and dental procedures, but CIC seems scarier than anything.

Michael

Thanks Hank,

I've read up on Dr Lindemann at IU in Indianapolis - the father of HoLEP in the US. He might be my doc if I do that.

HoLEP pretty much ensures RE. Then again, partial prostatectomy probably does also. Also, open or robotic PP can run the risk of excessive bleeding and urinary incontinence, the latter is more a risk with a less skilled surgeon. The doctor I spoke with is world renown. I like him a lot. Still not sure open PP is what I want to do, but in this surgeon's hands I think the outcome will be good. Obviously, on the degree of invasiveness scale, PAE and open surgery are on opposite ends, and HoLEP is in the middle somewhere.

My concern is potential trauma to the urethra from any procedure that enters through the penis, including TURP, TUIP, Greenlight, etc.

HoLEP produces perhaps the quickest results, and PAE might lag behind FLA and TURP by several months, but it is the least invasive and does not require a catheter afterward.

Michael

Michael:

I recently had a serious UTI that led to an ugly episode one evening from which I emerged, thankfully, with no organ damage. The next day, I learned CIC from a urology nurse. But I only will do CIC in an emergency situation. I absolutely hate the idea of sticking something up my urethra; but I hate the idea of kidney and bladder damage more. Something to consider if one of those 12 minute showers doesn't do the trick.

With regards to the infection, I mentioned biofilm dfense (misspelled to avoid moderation) to Howard in another thread. Might be worth a try. It seems to work well for people who have UTIs and Lyme disease. I wasn't able to find much on the internet, except for Amazon reviews (if you're not familiar with biofilms, there is a fair amount of info about them on the web). I've been taking the substance and I do think it has helped my bladder. But I have a combination of things that I am trying so it's hard to know. But I did add the substance recently and I have noticed improved voided volumes, less trips to the bathroom and I can't remember the last time that my perineum felt uncomfortable. But before you try it, I strongly suggest you read the Amazon reviews. If you happen to find any other information, please let us know. Yes, they did have a recall about five years ago but there doesn't seem to have been a problem since. I have had no issues, that I'm aware of, with it.

Best of luck to you.

Hi rdemyan,

I have been taking the same 2 drugs you mention here for about 15 years now. I think alfuzosin is a great drug and works quickly with little side effects for me.

I was ok for a few years on finasteride and was then switched to dutatsteride probably because of the drug salesman visiting my uro. After about 3 years or so my libido dropped way off and has never recovered. Also the volume of sperm upon ejaculation dropped way off and the color was brownish. I think there is an element of RE. Also my overall energy levels dropped a lot and I had to give up some sports. My endurance levels dropped off.

Then after about 5 years I started to lose my body hair, chest, back, pubic, arm pits and grow man boobs!! Meanwhile my head hair mushroomed out!! I also lost a lot of muscle mass and could not recover it by workouts. ,, pretty ugly picture.

To make things worse my prostate started to grow again and yet i could not stop this drug because it would lead to aggressive growth of my prostate. I was never told of these side effects and would never have started this drug had I known. The only way I could get off of it now would be to have much of my prostate removed by a procedure like holep, robotic/open sp. From what I have gleamed, even men who have FLA cannot get off of avodart after the procedure because not that much tissue is removed. This is am evil drug and you must be warned that you will reach the point of no return after a year or so of use. Do yourself a favor and throw it away NOW!! Howard

Hi Michael,

Do you get your kidney functions regularly checked for hydronephrosis and other issues? Ultrasounds are good for this. Also cystoscopy is important to check for bladder wall thickening and trabeculation.

It is really important to empty your bladder completely every day as bladder stones can form if the trigone region in concentrated urine that is not drained out.

I understand better than anyone what you are saying about CIC. The nurse who tried to teach it to me was a monster and I actually fainted during the ordeal. I thought PAE would save me but when it didn't I had only 2 options: undergo major surgery and face incontinence or learn CIC. I searched the Internet and found this forum and jimjames and others. We can only learn CIC from men who have done it and not from nurses.

Jimjames walked me through it, step by step and I memorized each step. I was determined to master it as if my life depended on it and it did!! Over time I added my own little details and now it is no big deal. All we are doing is putting a straw into our bladder to drain some pee. So what is the big deal??

I had bad hydronephrosis on my left kidney and it healed after 6 months of CIC. Also my bladder wall muscles have strengthened to where I can natural void about 250ml whereas before I could count the drops.

Anyway I view it as a stopgap solution until something better comes along. I can still NV because I do not have a median lobe and I suspect you do not have one either from your description.

I have helped a few men get over the hump of the learning curve and would help you too. It gives us back control of our bladders! Take care Howard

Howard:

Thanks for the response. Yes, I am aware of these side effects and they do concern me. However, my research seems to indicate that these side effects occur primarily because of estrogen dominance that occurs when dutasteride is taken. Prior to starting, I wanted my GP and uro to schedule me for a hormone blood test but they refused. I decided, however, to try and take natural supplements to suppress the amount of estradiol in my body. After about 4 months on dutasteride, I decided to pay for a test on my own (spit test purchased off of Amazon). The results showed that I have a relatively high amount of testosterone for someone in their early sixties. It also showed that the level of estradiol is at almost the very bottom of what is considered a normal range. Unfortunately, I don't have a baseline to compare these numbers against.

I shared these results with my uro and he was glad to see that my testosterone level was where it is (not so glad, however, that he was willing to approve lab work which would have been free). He doesn't know that I am trying to suppress estrogen dominance.

At any rate, the dutasteride seems to be working and as you said earlier, it significantly decreased the size of your prostate. How was that reduction determined, btw? Also, a 50% reduction is about twice what the literature says to expect. I will be keeping an eye out for these side effects and hopefully I'll realize they are happening, if they happen, before it is too late.

M y prostate size is determined by a simple abdominal ultrasound which also looks at my bladder and kidneys. That is an interesting experiment you are trying to suppress estradiol to reduce the side effects of dutasteride. I wasn't aware they were related.

I am trying to recall what were the side effects I first started to experience. I think it was a general malaise and gradual loss of libido and sperm production and ejaculation force. The hair loss came later and gradually.

Please let us know how you do as you may have an easy solution to a bad problem.