Anyone had the PAE procedure?

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I've had the Urolift but with disappointing results. Have been reading about PAE and it sounds promising. If you've had it I would like to know your opinion. Also, can it be done after the Urolift (do the implants have to be removed)? Thanks,

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  • Posted

    I had a PAE with Dr Nutting in May - he did not cauterize me, but did enter via the femoral artery. I also had an enlarged median lobe, and so far am doing fairly well. I used to get up 5 to 6 times a night and now I get up twice a night. I have no illusions that this treatment will last my lifetime, but it was the best treatment for me at this point in my life and has bought me some time. I'm undergoing active surveillance for Pca, so my situation is a little more complicated in terms of bph treatment options.

    • Posted

      I too am undergoing active surveillance. I was diagnosed in July of 2015 and have done nothing but watch it. Had 4.4 PSA in 2015, now at 6.2. The Gleason was 3+3 at the time. I recently underwent REZUM for BPH but the results have not been satisfactory. After withstanding the treatment and two weeks on Foley catheter, I am disappointed at the results of the REZUM at this six week mark. I understand that three months is the full benefit time frame and I admit I am the impatient type but come on. Nothing has changed so far. Still get up numerous times at night, stream is very weak, starts and stops, only hold 100mil of urine before needing to pee and I get dribble at the end of the streams. I am considering HoLEP instead of TURP if REZUM does not relieve the BPH symptoms but finding a doctor that is good at doing that has been difficult because I live in a rural area of Arizona. I hear so many stories about guys like DaveCanPee, etc. who have had great success with simply prostatectomy but I just don't want to undergo such an invasive procedure and under anesthesia for two hours or more. I will be seventy in January of 2020 so I don't have much time left anyway. One thing that did improve after REZUM is that when I get up at night, I don't have to spend five minutes at the toilet before any stream at all starts. At least now, it will come out but all the other symptoms are still there.

    • Posted

      If the REZUM ends up a failure have you considered FLA with Dr Karamanian in Houston?

    • Posted

      Vernon,

      Check out the Aurolase procedure. The company is nanospectra. Their website has a good video of the procedure.

    • Posted

      Vernon,

      Sorry to hear you are on AS. I was on it for a year and a half but the emotional strain was too much for me. My second 12 core biopsy showed "progression" but still Gleason 6. I decided on treatment - radiation. This was in 2014 and my prostate cancer is now cured with PSA at 0.2. I now wish I had gone for RRP (robotic removal) because that would have cured both the cancer AND any future BPH symptoms. So, I have been tormented for several years with a variety of BPH issues, most of which were solved this year after a bipolar TURP. When I had the radiation I had two HD Brachytherapy treatment sessions, each with a spinal. My bipolar TURP was under a general. No issues. I was 68 with I had my radiation and 72 when I had my TURP. When you say you don't have much time left, perhaps you have some other health issues that are a factor, but I would say that at 70 you should have a LOT of time left.

      I wish you all the best and hope you have many, many happy years of life...

      Tom

    • Posted

      Tom:

      This is going to sound awful defeatist I know but I don't think I will do radiation or Chemo . I just don't like the percentage of quality of life reduction with either. I also feel the same way about Radical Prostatectomy. Just don't want to go through all the incontinence, erectile dysfunction, etc. etc. I have considered Tulsa Pro at UCLA Medical Center but have not yet had an appointment, since I live in Arizona. I will pursue after the first of the year. Until then, I just hope things don't go south. I'm 70 so I have to say I had a good run and I'm happy with my life. I couldn't have asked for a better one. Hoping for many more years of course but ready for whatever comes my way.

      Vern

    • Posted

      Vern,

      As suggested by Carlos, do google about Aurolase by Nanospectra. I just did. Blew me away. It appears chemo and radiation is being replaced. Try and get on a study.

      Also, while you're at it, google Aquablation for the latest most precise way to resect the prostate. Minimal chance of sexual side effects and incontinence. Might be an option.

      Marty

    • Posted

      Marty:

      Good of you to make suggestions. Thanks for your concern. Thanks so much.

      Vern

    • Posted

      Thank you Tom and the very same to you and yours. Merry Christmas and a Happy and Healthy New Year.

    • Posted

      Vernon,

      When you say you don't want your prostate cancer treated due to the "percentage of quality of life reduction" all I can say, from my own experience, is that my quality of life was being severely compromised by the constant anxiety knowing I had cancer growing in me, and it might escape the prostate. Once I got treated the anxiety went away - especially when my PSA fell to almost zero. I did have some prostate swelling after the second radiation session, and had Foleys in and out for 6 weeks until the swelling went down (I wasn't expecting this). With RRP there is a small statistical chance of permanent incontinence, but in almost all cases, continence is restored. I would take this any day rather than to go through the constant thoughts that I had active cancer cells untreated in my body. Maybe you can do it, but I didn't last very long. Now, I am looking forward to a long and healthy life. I exercise, eat healthy foods and keep my weight down, so I am doing what I can and trying to be positive about life. But, not treating the prostate cancer - no way!!!

      Tom

    • Posted

      Vernon,

      My reply to you got truncated to almost nothing - so here it does again (shortened version). My quality of life was being severely compromised knowing I had the cancer in me - so being treated relieved that anxiety, especially when my PSA fell to almost zero. Yes, there is a slight statistical chance of incontinence with RRP, and after radiation the prostate is still there causing BPH issues. But, my cancer is gone - five years of 0.1 to 0.2 PSA. NO WAY would I or could I have lasted NOT having treatment. Whatever reduction in quality of life comes from treatment, it's much better than NOT being treated. Just my experience. My best advice - get that cancer out of you and live a long and happy life!!

      Tom

    • Posted

      Vernon,

      It's wrong I have two friend who underwent Robotic or simple prostatectomy with minimal side effect, except RE. The preserve potency in their 70th and don't have incontinence. Search for a good surgeon with many operations. REgarding the golden nanoshells cancer treatment it's promising in some localized cases but is long way to FDA approval.Firstly nanoshells can penetrate the spine-brain barrier and accumulate in brain. Nobody know long term results. Not every cancer cell attracts nanoshell particles, even when they are coated by a specific enzyme. Most results are on mice and only 14 on men. Don't bet on it. BTW it has nothing to do with doctors, it was invented by Texas physicists, is known for last 15 years, but production of effective nanoshells which respond to the same laser wavelength selectively is expensive and challenging. I have published widely in that field and know what I'm talking about. It's a revolutionary mean to treat cancers but with limited scope and generates a lot of heat in the organ. If I were you I would chose FLA with Dr. Karimian.

    • Posted

      Gene: I was wondering where Dr. Karimian is located? I live in Arizona.

    • Posted

      Tom: Thank you for your input. I have taken it to heart and will consider Focal Laser Ablation if nothing else. I am also interested in the TULSA Pro treatment that is offered at UCLA Medical Center. It has been five years since my diagnosis of T2a with Gleason 3+3 and a PSA now of 6.2, initially 4.4. I have not had and dread another biopsy so I will push for parametric MRI to establish size and location of the lesion prior to further treatment or continuation of Active Surveillance. Some of the trouble is locating a good doctor in my Northern Arizona area that does the type of treatment I am after. I recently had REZUM therapy for BPH but not that successful. On minimal relief so I am fighting two battles. I am hopeful that I will be able to get control of these issues before they get control of me. Again, I appreciate and thank you for your input.

      Vern

    • Posted

      This is Michael did you see my message from 2 days ago? Dr Karamanian is the correct spelling. Houston

    • Posted

      I am not as informed you, Gene, as I just read about this technology yesterday that has been in development by cancer doctors and non medical doctors for a number of years. But, reading the NanoSpectra website, only 2 of those 14 men in that trial you referenced were not cancer free after one year. Im not sure how to respond to your blood brain barrier concerns. SINCE I am over my head, Ill just quote the website, as they seem to deal with it:

      "AuroShells are delivered intravenously and due to their small size they are able to accumulate in the tumor through its leaky vasculature. The particles are unable to access normal vasculature and therefore do not accumulate in healthy tissue. Once the particles accumulate in the tumor, the area is illuminated with a near-infrared laser at wavelengths chosen to allow the maximum penetration of light through tissue. The AuroShells are designed to absorb this wavelength and convert the photonic laser energy into heat sufficient to ablate the tumor.

      AuroLase for the Ablation

      of Prostate Cancer Tissue

      AuroLase Therapy for prostate disease is the first and only ultra-focal tissue ablation therapy designed to maximize treatment efficacy while minimizing side effects typically associated with surgery, radiation, and traditional focal therapies. The company is currently conducting a multi-site clinical trial for prostate disease."

      It is not FDA approved. Yet. Sometimes that is not a deal killer. I had my PAE years ago when it was not FDA approved. My Aquablation earlier this month was only approved earlier this year. Many men enjoyed its substantial benefits over Rezum and other procedures before it was approved. The success of the very small initial trial of Aurolase would put it on my radar, but I respect that many would wait for more trials to be completed.

    • Posted

      Correction: My aquablation was NOV 5th

    • Posted

      Vernon,

      Focal treatment would be a good idea as long as it's financially possible for you - may not be covered under your insurance. I had two 12 core biopsies - not fun, but for the second one I took two Tylenol tablets before and the pain was greatly reduced. MRI will show the lesions, but can't tell you the staging, so, unfortunately, in order to really know what's going on you need a tissue sample. Anyway, just to repeat myself in a different way, once I was treated my quality of life improved dramatically as the constant low level anxiety melted away. After my bipolar TURP in April the tissue samples were sent to the lab and the results came back with no cancer, so this was a double confirmation that the radiation worked ( in 2014).

      Tom

    • Posted

      Tom: Thank you again for the information. This is a daunting condition and I would like to be done with it if possible. I hate the thought of another biopsy. So much initial pain, so much subsequent pain (like sitting on a golf ball. So much blood in urine and ejaculate and then there's the procedure. I suppose I should think of the alternative and just do it.

      Vern

    • Posted

      Vernon,

      3T MRI currently i replacing Biopsies. It’s expensive and not always covered by insurance , but if you insist you can get it covered.

    • Posted

      Vernon,

      I was in exactly your position, and just went and did it anyway. Once the cancer is treated, no more biopsies! Many suggest a 3T MRI as an alternative, but that only shows the lesions, but can't give you a Gleason score. You should also look into the Oncytype DX test - a genomic test to find out how aggressive the cancer is. This was new when I had my treatment and I couldn't get my insurance to cover it, but it does give very important information that might help you in your decision process.

      Tom

    • Posted

      Gene,

      Aurolase ClinicalTrials.gov Identifier: NCT02680535

      Completed clinical trial was 45 participants, (not 14 as you have listed)

      Another clinical trial is coming soon (more participants too).

      Please fee free to contact David Jorden CEO, he responds quickly.

      Art Rastinehad, D.O. is currently an Associate Professor of Radiology; Associate Professor of Urology and the Director of Focal Therapy and Interventional Urologic Oncology at the Icahn School of Medicine at Mt. Sinai. Dr. Rastinehad is an amazing Doctor and participating in the clinical trial.

      Naomi Halas at Rice University is one of the main researchers, first publishing

      this subject in 1997.

      Naomi J. Halas

      Stanley C. Moore Professor, Electrical and Computer Engineering

      Professor, Biomedical Engineering

      Professor, Chemistry

      Professor, Physics and Astronomy

      Director, Smalley-Curl Institute

      Director, Laboratory for Nanophotonics

      Education:

      1980 B.A. Chemistry, La Salle College

      1984 M.A. Physics, Bryn Mawr College

      1987 Ph.D. Physics, Bryn Mawr College

      2007 D.Sc. La Salle University

      The effects from certain Mri contrasts have also crossed the blood brain barrier. This was proven in cadaver studies.

    • Posted

      Marty02,

      Please youtube an actual patient of the clinical trial. There is also a guy on theInspire site from Aurolase trial . He is doing well and mentioned possible 100 participants in upcoming trial.

      Youtube

      Nanoparticles developed at Rice reach clinical trials for prostate cancer

    • Posted

      Marty02,

      The guy on the Us TOO inspire site goes by the name of Microdude.

      He was a participant in the first 45 of clinical trial.

    • Posted

      Carlos,

      I know Naomi very well personally. She is a pioneer of nanoshell research and preposition to use them in cancer treatment. I have published myself extensively from at least 2006 in major physical magazines on the topic of nanoplasmonics and gave numerous presentations regarding the heat generation in them. That's why I contradicted your statement about "brilliant doctors" . Doctors were used as a tool to implement the technology of goldnanoshells (size 50-100 nm) in photodynamic cancer treatment. Everything was developed by physicists. Naomi is not the only one and not even the first one, but probably the most persistent. I was present to may presentation of Naomi and other researchers and know all the unique features and pitfall of nanoshells used to deliver heat or special genetic material to cancer cells. Things are not as simple and bright as you try to present them, albeit the technology has a future.

      I described very clearly in my previous posting the difficulties of nanoshell technologies. I'm not a pro in medical application firsthand but was present to may presentations and read dozens of papers. If things were so simple it won't take 22 years to get to clinical trials. Don't you think so? Photodynamic therapy of cancers is almost 30 years old. First, doctors used dyes molecules attached to cancer cells through special genetic markers, now there nanoshells, a subproduct of relatively new science called plasmonics, although nanoscale metal particles were used 1000 years ago to make stained glass. The advantage of naoshells is they they have relatively narrow absorption spectrum and can absorb light effectively (75% efficiency) if constructed as "Russian doll". Gold shells absorb only 15%.

      I don't understand why are trying always to challenge my statements. I'm 72 years old and a Professor of Physics with widely known reputation. I don't make capricious statements. I was right that Foley catheter is not used to locate arteries for embolization and was right about it.

      Somebody noted on this forum that only 2 patients were cancer free after one year. The number 14 I took from the video that you referred me to. Can verify one way or another. Do you know how many patients out of 45 were cancer free after one year. Do you understand why nanoshells attach themselves to cancerous cells only?

      There always a bit of hype around start-ups with breakthrough technologies. What are you trying to prove? That you know the subject better? No, you don't.

      I don't need to contact the CEO of Aurolase because I'm fortunate not to have an active prostate cancer (but cn have it in the future). After PAE my PSA dropped from 4.5 ng/dl to 1.2 ng/dl. As of yesterday (my yearly physical) it was 1.4 ng/dL. Of course it guarantees nothing in my future life. Most men after age 70 have cancerous cells in their prostate.

      When time will come I will decide what is best for me. Nanoshells work best for well localized tumors of specific type. Probably not a panacea, but definitely innovative and damn expensive technology. You have no idea what it takes to produce enough of these gold nanoshells with multilayer structure, not to mention that gold is not cheap by itself. You will need an ounce per person at least, probably much more. Nanoshells tend to accumulate in other organs and nos so easy excreted by the human body.

      There are problems to solve, yet.

      Be well. Gene.

    • Posted

      Thanks Carlos,

      I find it very encouraging to see clinical trials. Something must have happened to make clinical trials viable, notwithstanding the many years this technology hadn't reached this point. There must have been a lot of happy mice. I also find it impressive that 12 of 14 patients in one trial were cancer free after a year.

      It would be wrong to discourage anyone with PC from looking at the latest data, especially if you haven't looked at it yourself. If, in fact, the new spheres have no meaningful side effects (as the website claims) and the cost is affordable, why not pursue this? I certainly dont want those spheres remaining in my body - that would turn me off this procedure. Im thinking that if that were the case with the spheres presently being used, there would be no clinical trials. But thats just a hunch. Needs to be verified.

      Furthermore, the days of medical doctors being at the forefront of all the best medical technology is behind us. My aquablation procedure was not developed by an MD. That is no reason to put down that great procedure or Aurolase!

      I cant tell you how many knowledgeable doctors told me that PAE was dangerous when I had mine done years ago. My head spins just thinking about the damage they did telling people to stay away from PAE! IMO.

    • Posted

      Marty:

      Since the spheres in the Aurolase procedure are 50 time smaller than a red blood cell and they are made of gold, I doubt that they would cause any kind of future problem by staying in the body. Actually, it was 14 out of 16 that were

      cancer free after one year. There is a paper on this that I could send if you are interested.

      Vern

    • Posted

      If those percentages (87%) hold up on the larger trials, sounds like quite a game changer. Especially since there is no high degree of surgeon skill involved. Please PM me the link. Thanks.

    • Posted

      If the trial was closer to where I live, I'd be all over it like jelly on bread. When I couple the fact that I don't like to travel with the fact that the cost of traveling to Texas is prohibitive for me, I simply can't afford to get well.

    • Posted

      What are the terms of the trial? By some miracle do they pay for travel costs? The cost of procedure? Worth checking out. Also, if you call them, they may have info on upcoming trials more convenient.

      Of course, as this forum displays, there are other procedures.

    • Posted

      Marty,

      I appreciate you very optimistic and weighted response to a sharp polemical exchange. I never meant to depreciate the value of nanoshell photodynamic therapies. The goal of my long posting was very different. Firstly, I tried to explain that the technique was developed and pushed by physicists, rather than by " brilliant" doctors. It took 25-30 years to make it successful in mice, and eventually in men with prostate cancers and women with breast cancers.

      of human cells.The goal of my posting was to post a warning for 1M PC sufferers. The technique is in a very experimental stage, probably, years till FDA approval. Clinical trials are not necessarily free for participants, more likely, expensive. My bills for PAE was $110K under auspices of a clinical trial at UCSD with 15 participants. Yes, I was advised strongly against it by my PCP and URo, who criticized even three months after, when all the objective test data (PVR, PSA, etc.) weer excellent. He threatened me with possible complications and predicted a total mess in my sexual organs, colon, and neighboring organs. Definitely nothing had happened in reality, except for some fading effects, which were expected. I'm not trying to discourage anybody, except that recent publication in the journal of "Applied Toxicology" doesn't claim that toxicity of nanoshells, which had nothing to do with their small size in comparison with blood cells, but rather their ability to penetrate mitochondria of human cells.

      Below is quite optimistic excerpt from that paper:

      In summary, it was shown that gold nanoparticles were taken

      up by human prostate cancer cells but do not cause severe toxicity. The uptake of gold nanoparticles was size dependent.

      Particles with core diameter 30 and 50 nm were taken up by

      the cells to a higher extent compared with larger particles.

      PEGylation or protein adsorption on the surface of GNPs diminished their interaction with cell membranes, resulting in a drastic

      reduction in uptake. Plain gold nanoparticles appeared to be

      uptaken by adsorptive endocytosis. Successful utility of gold

      nanoconstructs in tumor therapy requires additional systematic

      studies of the influence of physicochemical properties (size,

      charge, geometry, etc.) on biodistribution, tumor localization,

      cellular uptake and subcellular location. Such behavior will

      depend on route of exposure (oral, inhalation, intravenous, etc.),

      type and stage of tumor, among other factors. PEGylated gold

      nanorods show promise for targeted tumor ablation while spherical gold nanoparticles can be utilized for targeted drug delivery

      to tumors. By tailor-making their dimensions, extent of PEGylation

      and attachment of targeting moieties, their biodistribution and

      cellular uptake can be varied for optimal delivery to cellular and

      subcellular compartments.

      My posting was just a sober reminder that clinical studies are limited can't absorb many participants, are very restrictive in their choice of qualified participants and in most cases can predict long term effects. So, don't bet on it if you don't live in Houston, TX.

      PC is complicated, multifaceted disease and is know to create metastasis in lungs and other organs.

      Currently, in my non-professional view, radiotherapy or Robotic prostatectomy is a safer option for long term cancer free success.

      On the other hand I'm strongly against "chemical castration" or testosterone deprivation therapy which gives temporary relief but usually returns as a more aggressive cancer.

      There are many forms of PC and I'm not sure that all of them can be treated by nanoshell technology.

      So, the whole purpose of my posting was to tell everybody to be considerate and not to believe misleading claims that a panacea was found by some "brilliant" people. The same is pertinent to PAE. It's much safer in short run, but not is much less durable than TURP or many invasive therapies and sexual side effects like RE do happen after PAE, but with less frequency than after TURP.

      Aquaablation sounds like a new promising therapy, but is poorly covered by insurances, hardly could be called noninvasive, takes relatively long recovery time in some patients and is less durable than other methods. My idea was that choice is upon you, but some methods are still immature or hard to get without paying out of pocket substantial sums, that most of the participants of this forum cannot afford.

      I hope that everybody will find their best doctor, and the best method that suits their needs and state of their health best.

      Stay put and well.

    • Posted

      Gene,

      Study results for 16 participants are posted at Proceeding of the National Academy of Sciences. The doctors involved with the procedure I would consider Brilliant. I'm sorry if you disagree.

      Not all clinical trials charge $$ to participate. I know guys that traveled to Lisbon and Dr. Pisco performed the Pae for 16k?

      I also will agree to disagree. I am correct regarding the foley catheter for Dr's new to PAE.

      Best,

      Carlos Z

    • Posted

      Thanks much for your clarification Gene. Your PAE experience is a classic; your extensive knowledge about Aurolase and other procedures is appreciated.

      Of course, my experience with Aquablation is just mine. After one month, Im pretty much through my recovery - as was true after 9 days - less some minor issues. The NICE study, Water studies and others reflect very positive experiences both recovery wise and side effect wise when compared with other options such as TURP and Rezum.

      Because it is FDA approved and the studies are so compelling, Procept (the Mfr) is often successful getting insurers to cover it as a TURP alternative. I only know four people who have had the procedure - all similar results to mine. All were covered ultimately by insurance.

      Most urologists do not have access to the Aquabeam robot, so they don’t tell their patients about aquablations. I encourage all to consider it, and as you say, make their own choice. As with all new procedures, there is a lot of misinformation, all should do their homework.

      My mission here is just to keep the Aquablation option in the view of men looking for good procedures and to expand my own knowledge about other procedures. And maybe be a little supportive to some guy going through hell!

      I wish I found this forum before my procedure. It got very lonely at times.

    • Posted

      I've had 3 prostate biopsies. The first with just local anesthesia was very, very painful. I insisted on twilight sedation for the second, and it was pain free. For the third, they didn't offer twilight sedation, but provided a powerful pain killer (I don't remember the name) along with valium. It was uncomfortable but not awful.

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