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Medical Forum / Diseases and Disorders / Prostate Cancer / March 2008HIFU report- new phase needs help please.
Because HIFU (High Intensity Focused Ultrasound- info URL's at end)) is so new for Pca treatment I promised to keep my HIFU developments updated for the NG. Here's the latest, and as it's at a turning point, with a request please for help in difficult decisions I have now to take and which I'm really a bit befuddled about. First the developments. I have had two HIFU operations, described as salvage. They have successfully ablated my prostate and seminal vesicle. I was out in two days (one day is usual), I have had virtually no pain from the ops, no blood, no cuts, and the only side effects were several months painful self-cathetering after the first op from an almost total urethral stricture not noticed early enough (I suppose because no other patients I have spoken to have had the same problem), and cured with dilation and a five minutes op bladder incision. Urge and stress incontinence, gradually diminished. Some small dribbles still occur at intervals. I was the first G9 to have the HIFU on the prostate and the first on the seminal vesicle. I was always confident in the skill of the surgeon who is a leader in this field and never had doubts it would work. And I've never liked what I read here about some of the side effects of the alternatives, radical prostatectomy, radiation, homone therapy and the rest. Brrr.....Argghh...etc. So I'm just about home and dry on those counts! Sorry guys, I really do feel, almost, guilty! I think anyone must be barmy not to go the HIFU route on the primary if it's possible, especially if lower Gleason indicates micro-mets unlikely to have started. I do get lots of fatigue, heavy legs but I'm an oldish bloke and very stressed as after 56 years of marriage my wife is now in a nursing home with severe dementia but still asking me to take her home every time I see her. So I don't ascribe those symptoms to HIFU. They're not a patch anyway on the severe symptoms guys contributing here have suffered for years - including broken backs (IPF), and just about everything nobody wants with our very own gourmet, 'kh' - among very many. These many brave guys are noticeably still with us - and contributing from experience and detailed research how the rest of us might jump a few hurdles that tripped them. Because of my G9 I have always recognised from my earliest research that micro nasties could already be lurking to make themselves a nuisance however successful the immediate aims of the procedures. And sure enough, an MRI from last December shows two nodes in the lymph gland. So I am now, it would appear, at age 80, (81 November) G9 T4 N1 M0 and PSA rising quite fast. Due for hormonal therapy. And needing all the suggestions and prognostications I can get to arm me when treatment is next proposed (May is my next appointment). This is in no disrespect towards my own consultant. But we all know that the PCa specialists, as between urologists, radiation this, radiation that oncologists, hormonal oncologists and medical oncologists are all ready to acknowledge that they find it difficult to agree - sometimes on the time of day. This was presented very humorously in the DVD at URL http://tinyurl.com/266q9u posted a few days ago by Steve Jordan (for which thanks) a brilliant discussion of great value. One of the participants -who also has Pca, (apologies I don't know his name) discovered 4,000 published researches on Pca in the past year alone - adding to his, and everyone's confusion (but also encouraging my belief that one of them is going to be the magic bullet arriving at lightspeed!). I assume I can't be in for salvage radiation as I understand it's only recommended for local recurrence and it's no use with PSA above 1.0. So hormones or nothing. In the DVD they were talking of PSA's of 80 or 90 before starting chemo. So presumably not that either yet. As regards HT, I have participated in a number of recent discussions here on the subject. Nobody in HT research either can agree what's best. I am arriving at the conclusion that my thoughts are nearer to IP Freely's but not to his total opposition. My conclusion is that the question is not, "does hormone therapy work?", but - for who might it have some value and who might be worse off with it ? The answer is to be found via the question: What PCA diagnosis, and other medical conditions, do you have, and how old are you? Note I say 'some' value. Because the recent researches on Nestin, Stat 5 et al all posted here recently, have raised the new, and highly complicating prospect that when a patient becomes hormone refractory, more deadly paths for the cancer to spread may have been opened up by the therapy. HOWEVER (the word dreaded by we dice throwers trying to assess the odds) : if a man is a doddery old 80 year old, like me, and the refractory stuff only sets in after, what, say ten years - should he care??? In the meantime he could be relatively free of pain? I think there are two complications in looking at my case. HIFU is new in dealing with the primary. In arriving at T4 I have not previously had hormone therapy either adjuvant or neoadjuvant, nor radiation nor RP, all factors in research. Also I have a heart problem, 'bifascicular block and borderline PR interval' - and for Casodex 150 - my favoured mono treatment, heart problems can be a risk. Maybe that's why three months only was suggested as a possibility by my consultant. Hence also my befuddlement - where does my case figure in all this stuff? And here perhaps is the crux of why my case might be a bit different. In an earlier post I mentioned some brilliant podcasts by PCA specialists at www.ProstateCancerUpdate. Has anybody listened to 'Case 6 with Mary-Ellen Taplin', please? It refers to a '50 year old, sem.ves involvement, lymph nodes missed later showing positive.....etc . In brief, he had the same as me, virtually; RP in his case dealing satisfactorily with prostate, - but PSA rising -in his case, rocketing,15 post RP to 30 in weeks. Most rare. His specialists can't explain it. But hormone or chemotherapy, maybe with radiation now considered as solution, and essential. Panel told that patient said he'd rather die than have hormone therapy, to which another participant comments, 'Really? Well, you know what......?' (I found this hilarious as I love black humour.) They discussed CAB (I definitely don't want that, I'd rather.....er, h'm, well.....) .Casodex 150 seemed to be some sort of final agreement for that gentleman - or as they described him, a priest, who'd heard more than enough from his flock about side effects. Question - my PSA is rising quite fast. It's nothing so steep as his - but how similar am I to him? After his case was described, the comment was, 'This guy's in real trouble'. My consultant said metastasis is quite slow to develop. So I'm looking forward to being around quite a bit more for my wife. I would be grateful for opinions which may help to arm me with information when I arrive for my next appointment to make a significant decision on treatment proposed. If it's relevant, blunt assessments and language most welcome. As I've posted before I'm quite fatalistic, but get fed up only when I'm in a bit of a Pca fog. I'm quite happy with the doc who I'm told has an important message for me, so I rush there and ask '"What's the message", and he says, "You're gonna die tomorrow": although it gets a bit much if he goes on to say, "I've been trying to tell you that since yesterday." Kindest regards and best wishes to all here. DETAILS Now 80yrs. DIAGNOSED 2005. T2b-T3b NO MO Gleason 4+5, PSA 17 (up from 14.11 when first diagnosed) HIFU APRIL 2006.... PROSTATE - ABLATED March 2007 biopsy confirms seminal vesicle involvement (July 2005 biopsy had reported negative) HIFU AUGUST 2007.... SEM VES - ABLATED (but PSA rising after). MRI (Dec 24 2007) shows two nodules in lymph nodes 2005 PSA 14.11 October 25 2005 (HIFU op, prostate, April 2006) PSA Post HIFU 2006 June 30 0.681 July 25 0.812 Aug 2 0.95 October 23 2.6 * November 21 3.0 2007 26th February 4.9 5th July 6.0 * PSADT Octr to July 0.58yrs (HIFU 2 on Sem.Ves Aug 21 2007) August 29 4.39 2008 January 23 6.0 Aug-Jan PSADT 0.9yrs HIFU info refs: http://www.drmarc.co.uk/Prostate%20cancer/HIFU.htm http://www.prostate-cancer.org/education/novelthr/Chinn_TransrectalHIFU.html Well Mike, I'm no doctor, and no expert of any kind. There's a lot of conflicting information about how long a man will live with advanced disease, but the only conclusion I'm able to draw from what I've read is that longevity is extremely variable and can be from one or two to many years after recurrence after treatment. I think much depends on the extent of the tumors, extent and location of metastases, age of the patient, Gleason score, PSA doubling time, and perhaps other, unknown factors. You've got at least two strikes against you - high Gleason and relatively advanced age. On the other hand you've got at least one factor in your favor - your cancer has not yet metastasized to a great extent. I think if I were you I'd want to get on hormone therapy. The sooner the better. The reason is that the cancer has not yet spread all over your body and developed into large tumors. If the HT can keep it small, it seems to me you're going to live longer. I read the posts on Nestin and P53, but my personal, non-expert, totally unqualified feeling is, bio-markers be damned, studies show that men taking early HT live longer than men waiting until much later. The bio-marker that most impresses me is not number of Nestin molecules, or number of P53 molecules, but number of years of life. Another study someone posted here showed that, in a mouse experiment, the researchers were able to cut back lung metastases 96% in mice that had been fed genistein, but the biomarkers for metasis increased! They cautioned that biomarkers for tumors are not the same thing as tumors and a treatment that reduced tumors actually increased certain biomarkers for them. I was on Lupron for a short period. I didn't like it, but I didn't think it was wrecking my life. For the first month or so, it had no ill effects at all. Then gradually I began to get the side effects. If you don't like them and want to take your chances, you can always stop the treatments. But I think you should at least try it. HT is not thought to be great for your heart. That can be bad, but maybe not too bad. Personally, if I had a choice of living two years and then dying of cancer, or living three years and getting a fatal heart attack, I'd go for the heart attack. For that matter, I would definitely prefer the heart attack after two years, and maybe after only a year and a half or even less. Meanwhile, you've done the right thing to move your wife to a nursing home. It's the only way to keep her safe. One morning you're going to have trouble getting out of bed, and the last thing you'd need is to have your wife wandering around the house, unable to care for you or herself, and you needing an immediate solution to her problem with no time or energy to investigate one. I know she asks you to go home every time you see her. I've been there and done that with my mother and my mother-in-law. I remember we drove her home once and she said, What is this place? I want to go home! It's heartbreaking, but there's nothing that can be done about it. You're a good man Mike. Best of luck to you. Alan >Well Mike, I'm no doctor, and no expert of any kind. Maybe you're not, Alan, But you're always among the first up, and your analysis and answer of the question is always as clear, reasoned and informed as I would hope to hear from any doctor, with the added benefit of personal experience. That certainly goes for the following. >There's a lot of conflicting information about how long a man >will live with advanced disease, but the only conclusion I'm able [quoted text clipped - 9 lines] >one factor in your favor - your cancer has not yet metastasized >to a great extent. >I think if I were you I'd want to get on hormone therapy. The >sooner the better. The reason is that the cancer has not yet [quoted text clipped - 15 lines] >not the same thing as tumors and a treatment that reduced tumors >actually increased certain biomarkers for them. The genistein v. Nestin/ P53 biomarkers is very impressive: it's a factor wasn't in my mind before. >I was on Lupron for a short period. I didn't like it, but I >didn't think it was wrecking my life. For the first month or so, [quoted text clipped - 4 lines] > >HT is not thought to be great for your heart. Casodex 150 was actually withdrawn in Canada as I'm sure you know. But OK for older men apparently. (But Alan, that can't apply to me? As you note above in the two strikes against me I'm, quote*relatively* advanced age unquote. I'll remind my doc to be sure to bear that in mind when prescribing :-) > That can be bad, >but maybe not too bad. Personally, if I had a choice of living [quoted text clipped - 16 lines] >I want to go home! It's heartbreaking, but there's nothing that >can be done about it. I did exactly the same thing and got precisely the same reaction. Also in the few hours at home my theories how to handle her by myself went out the window - she can't walk or stand - that was caused by hospital negligence leg-breaking, not a story for here, but cause of great bitterness. She was walking fine with a stick when with me. >You're a good man Mike. Best of luck to you. >Alan You have a kind as well as informed pen. I've done nothing except get Pca with the only advantage of finding genuinely good, and even great hearts developed out of true suffering on this NG. My kindest regards to you Alan, I'm thinking about all the above: and very best wishes to everybody. > I was the first G9 to have the HIFU on the prostate and the first on > the seminal vesicle. I was always confident in the skill of the > surgeon who is a leader in this field and never had doubts it would > work. And I've never liked what I read here about some of the side > effects of the alternatives, radical prostatectomy, radiation, homone > therapy and the rest. Brrr.....Argghh...etc. HIFU certainly seemed at the time to be an excellent attempt at killing the beast in side you. Nothing known now would indicate otherwise. With a G9, you had almost no chance with any currently available primary treatment. You had to go with your best shot. > Because of my G9 I have always recognised from my earliest research > that micro nasties could already be lurking to make themselves a > nuisance however successful the immediate aims of the procedures. And > sure enough, an MRI from last December shows two nodes in the lymph > gland. Damn! > So I am now, it would appear, at age 80, (81 November) G9 T4 N1 M0 > and PSA rising quite fast. Due for hormonal therapy. And needing all [quoted text clipped - 5 lines] > ready to acknowledge that they find it difficult to agree - sometimes > on the time of day. As I recall, you started with Casodex before HIFU. I assume this was merely to reduce the mass and that you have long since been off Casodex. God, can it be two years already? If so, I would imagine that your doctor's or doctors' recommendation will be ADT. I really don't think it will matter which type of doc it is at this point in your progress. Now, whether or not you want ADT is another matter. Personally, I would absolutely recommend you try it. I have kept my cancer at bay for years with it ADT1 (Lupron) and then ADT2 (Lupron + Casodex). But, ADT causes SEs. Virtually every man who undergoes treatment involving current ADT meds will experience some issues that they have never dealt with in their lives. Some will be mild. Some will be moderate but might be made mild with other meds. Some will be serious but might be made moderate. Some will be so strong that a few will stop using them though they may die sooner. But, nobody knows how many or which SEs he will experience or how severe they will be or how easily they can be mitigated by other medications or activities. And, if they are too severe, you can always quit. > 2008 January 23 6.0 Aug-Jan PSADT 0.9yrs Certainly, that's not dreadful news. We've seen 0.9 months in some cases here. I'd still try the ADT. It may last you the rest of your life. On Fri, 28 Mar 2008 02:17:00 -0400, "Steve Kramer" <skramer@cinci.rr.com> wrote: / big snip.... >....................... is it really two years? It's nearer three Steve (June 05 diagnosis)! Tempus certainly fugits like crazy in this business! >........... I would imagine that your doctors' recommendation will be >ADT. I really don't think it will matter which type of doc it is at this >point in your progress. Agreed. >Now, whether or not you want ADT is another matter. Personally, I would >absolutely recommend you try it. I have kept my cancer at bay for years >with it ADT1 (Lupron) and then ADT2 (Lupron + Casodex). I think what's in my doc's mind is Casodex 150 and then, I suppose, if PSA doesn't go well, to be followed by ADT2. >> 2008 January 23 6.0 Aug-Jan PSADT 0.9yrs > >Certainly, that's not dreadful news. We've seen 0.9 months in some cases >here. I'd still try the ADT. It may last you the rest of your life. Your PSADT verdict would support my consultant's approach, which I've already agreed with, which is to watch my PSA into the mid teens, and its doubling time, before starting HT.(I think mid-teens might be the actual starting gun). That also fits I think with my other marker, Peter Scardino's conclusion, which is - (I've very frustratingly lost his precise quote) wait till you know you're going to get mets, then start HT while it's still asymptomatic. If the timing seems OK then I suppose I'm down to this: Isn't Casodex 150 monotherapy now seen to be one standard of HT which could be effective on its own? And it has fewer S/E's than Lupron. (Always acknowledging variation patient to patient). I think an initial short period (three months) of Casodex might also be suggested. In all I just need a few weeks to let the thoughts waft about up top so's I'm prepared for a decision. Thank you Steve for your whole piece which like Alan's is so helpful. My best wishes to all. > Isn't Casodex 150 monotherapy now seen to be one standard of > HT which could be effective on its own? And it has fewer S/E's than > Lupron. (Always acknowledging variation patient to patient). I think > an initial short period (three months) of Casodex might also be > suggested. I've not heard of it used as a monotherapy. I've heard it used just before some other primary treatment to shrink the cancer. And, if ADT2 is indicated, they will start Casodex first to mitigate the worst side effects at the start of Lupron. But, that's not to say it isn't used as monotherapy and I've just forgotten.  SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08 Non Illegitimi Carborundum > <Mik...@anon.co.uk> wrote in message > [quoted text clipped - 12 lines] > that's not to say it isn't used as monotherapy and I've just > forgotten. I've heard of Casodex 150 given as a monotherapy in England, but I don't think it's used that way in the U.S. I don't know exactly why that would be so. I had thought that the Lupron like drugs were thought, at least in the U.S., to be more effective. I had also thought that they actually had LESS side effects than high dose Casodex. But I don't know if that's true. I can't help wondering (perhaps I'm being too cynical), if it's a cost issue. Maybe Casodex is cheaper than the LHRH agonist (Lupron etc.) drugs. As Steve said, Casodex is given in the U.S. before the start of Lupron therapy, but usually it's only for a couple of weeks. The reason for it is that LHRH agonists actually increase the amount of testosterone for a week or so after they're given. It's only after that that testosterone production begins to shut down. The Casodex blocks (at least somewhat) cancer cell uptake of testosterone during that period. I seem to recall one fellow on this newsgroup saying he alternated Lupron and Casodex. His idea was to recover from the side effects of one while on the other, then vice versa. I don't remember who he was or what the outcome of his treatment was. Alan
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