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Medical Forum / Diseases and Disorders / Prostate Cancer / February 2008Your input on trial options ...fast PSADT, recurrent PCA.
Greetings folks..... Hope this post finds you well. Unfortunately my lastest PSA of 1.12 now qualifies for a me for a Phase III clinical trial that my primary med onc at MSKCC is advocating. It's aimed at determining whether a ADT blockade , or ADT w/ Taxotere works better at slowing progression of PCa after biochemical recurrence .... http://clinicaltrials.gov/ct2/show/NCT00514917?term=sanofi&rank=8 During my November second opinion visit to Johns Hopkins, my med onc told me about Phase II copper chelator ATN224 trial and a antiangiogenesis/immunomodulator revlimid trial. I think for these my PSA might need to be at 2. Given my PSADT of <3 mo's and Gleason 8, I am not sure an experimental phase II trial is the way to go over a Phase III with ADT? Anyone out there have any experience with ATN224 or revlimid? Here are my stats: 6/03 - PSA 2.0 6/04 - PSA 2.5 8/05 - PSA 4.2 11/05 - PSA 5.89 BIOPSY 8/16/05 T2A, 3+5 = 8 RP 12/13/05 PATHOLOGY GLEASON 3+5=8 TERTIARY 4, SEMINAL & LYMPH - NEG EXTRACAPSULAR EXTENSION TO MARGIN POSITIVE MARGIN - RIGHT APEX PSA POST RP 1/26/06 = 0.5, 2/1/06 = 0.55 PSA on 3/27/06 = 0.95 START SALVAGE RT ON 3/27/06 FINISHED SRT 5/19/06 6-20-06 - PSA 0.24 7-08-06 - PSA 0.15 9-14-06 - PSA 0.10 12-19-06 - PSA 0.08 2/7/2007 - PSA = 0.09 08-17-07 - PSA = 0.31 10-02-07 - PSA = 0.48 11-06-07- PSA = 0.61 01-25-08 - PSA = 1.12 Dominic, Almost a third of all radiation patients have a PSA bounce. It usually occurs between the first and second years following radiation. One theory is that it takes that long for the radiation kill many cancer cells. As they die, they give off larger amounts of PSA. If I were you, I'd investigate this thoroughly. John > Greetings folks..... > [quoted text clipped - 43 lines] > 11-06-07- PSA = 0.61 > 01-25-08 - PSA = 1.12 John, I have never heard about PSA bounce after salvage radiation. I have checked Scardino and Strum books on this issue. It seems that they contemplate only primary RT when discussing PSA bounce. Maybe others will know (and advise) better. Just. >Dominic, > [quoted text clipped - 6 lines] > >John > John, > > I have never heard about PSA bounce after salvage radiation. ... I haven't heard of it either. Clearly Dominic's doctor is treating this as a recurrence. Also, Dominic reached a PSA nadir six months after radiation, then experienced five straight PSA rises. That too is not characteristic of bounce, which tends to go up and down. On the original question of what trial to join, here are a few thoughts: First of all, the ADT vs. ADT + chemo trial is more conservative in that both treatments are proven cancer suppressors. The other trial has finished Phase I, which established that it is safe to move on to Phase II, but presumably has not yet proven efficacy. Score 1 for the ADT trial I think. Secondly, ADT and chemo are both well understood. That's not to say they won't blast you with side effects, but rather you and the docs will know what side effects to expect and what to do about them if necessary. That may not be true for the investigational drug. Score 2 for the ADT trial I think. Thirdly, it looks like the ANT224 trial can be entered after ADT failure. If and when ADT plus chemo fails, if the ANT224 trial is still open, you could enter it then. If it completed successfully, there might be a Phase III trial available when you need it, by which time more will be known about its efficacy and side effects. Score 3 for the ADT trial I think. Of course it's always possible that ANT224 turns out to be a complete cure. But I'm hoping that the slow course of the disease plus the effect of the ADT with possible chemo will keep you alive long enough to benefit from it if that is the case. As for the question of whether to enter a clinical trial at all, based on my own experience, I'm in favor of it. You'll be dealing with doctors who are scientists as well as doctors and may be especially good at understanding your condition and treating it. You'll also get more medical tests than would otherwise be the case. While I'm not in favor of overboard testing, the tests will give you and the doctors a lot of information about your specific disease. Best of luck to you. Alan Quoting "Just" (I wonder what is his/her name): >> I have never heard about PSA bounce after salvage radiation. Alan wrote > I haven't heard of it either. Clearly Dominic's doctor is treating > this as a recurrence. > > Also, Dominic reached a PSA nadir six months after radiation, > then experienced five straight PSA rises. That too is not > characteristic of bounce, which tends to go up and down. Here's a clinical study: Horwitz EM, et al., Biochemical and clinical significance of the posttreatment prostate-specific antigen bounce for prostate cancer patients treated with external beam radiation therapy alone: a multiinstitutional pooled analysis. Department of Radiation Oncology, Fox Chase Cancer Center It begins, "The posttreatment prostate-specific antigen (PSA) bounce phenomenon has been recognized in at least 20% of all patients treated with radiation." And concludes "Patients treated with external beam radiation therapy alone who experience a posttreatment PSA bounce have increased risk of BF (biochemical failure). However, this did not translate into a difference in clinical failure with the available follow-up in the current study. Comment: Typical turgid language. Medics are rarely trained to express themselves in plain English. Or mebbe I'm just stupid. How would I know? Anyhow, the PubMed ID is 16944536. PubMed is a service of the US National Library of Medicine. And, finally, here's what Mark Scholz, MD has to say about it on the website of the Prostate Cancer Research Institute: ".. Another potential side-effect of brachytherapy, indeed all forms of radiation, is called the PSA “bump” phenomenon. The PSA “bump” is a delayed PSA rise occurring after the radiation finishes. Although the exact cause of PSA “bump” is not known with certainty, it is believed to result from irritation of the residual prostate gland by radiation. The “bump” follows a benign clinical course and usually resolves itself within a year. The main danger of the PSA “bump” comes when physicians mistakenly conclude that the rising PSA represents recurrent cancer and decide to start ADT when no cancer is present." BTW, "bump" = "bounce." And why should it not occur during salvage tx? Anyone know? As for the rest, I'm fascinated by Alan's reference to SEs of ADT + chemo (undefined) as "...*blast* you with side effects..." I wonder whether Alan is a journalist, trained to present incidents in as exciting a manner as possible. Eg: "the airplane engine failed (who sez?) and it *plunged* to the earth." Well, Allen is a good guy and I should not needle him. Regards, Steve J > As for the rest, I'm fascinated by Alan's reference to SEs of ADT + > chemo (undefined) as "...*blast* you with side effects..." I wonder > whether Alan is a journalist, trained to present incidents in as > exciting a manner as possible. You mean my stint reporting on alien abductions in the National Enquirer doesn't qualify me to write good English prose? > Well, Allen is a good guy and I should not needle him. Needle away. I have a thick rhinoceros hide, toughened by aliens who blasted me with ADT and chemo. Alan >Quoting "Just" (I wonder what is his/her name): Hi Alan! It's a he... The real name is immaterial. A long, long time ago I have learned never to use the real name on any Usenet forum. Just On January 29, "Immaterial" wrote: >> Quoting "Just" (I wonder what is his/her name): > > Hi Alan! Ackshully, the inquiry was mine, not Alan's. > It's a he... > > The real name is immaterial. A long, long time ago I have learned > never to use the real name on any Usenet forum. Well, I use my real name and have never had a problem. Maybe it's 'cuz the vandals know how cranky I can be. I was only playing around in the salutary line, above. Won't do it again. Probably. ;-) Regards, Steve J Really, fer shure > The real name is immaterial. A long, long time ago I have learned > never to use the real name on any Usenet forum. None of these guys and gals would use real data of any sort online if they had read the book "Look Both Ways" by Linda Criddle, who left a senior technical management position at Microsoft to fight internet-based crime worldwide. My long discussion with her last week prompted me to put her in touch with some radio and TV hosts to promote her message that any public exposure (e.g., the internet, forums in general, clubs, school, work) opens the door to 100,000 local and international criminals who could obtain most of the following data about people within a few minutes: Name, address, home and cell phone numbers. Mother’s maiden name. Age, quite possibly a photo. Sexual preference. Credit card and social security numbers (for $6-$10, depending on the mark’s income) Economic status, health records, mortgage balance. Commute/school/work/vacation schedules. Hobbies, interests, favorite haunts, friends, neighbors. State of mind (e.g., strong, weak, vulnerable, gullible). Now compound that with this asinine "One Laptop Per Child" program. I.P. > > The real name is immaterial. A long, long time ago I have learned > > never to use the real name on any Usenet forum. [quoted text clipped - 22 lines] > > I.P. You are probably right we should all be using pseudonyms.... be hard to come with one like IP Freely....was that pre or post RP moniker? Many of us post our most intimate details on associated with our medical conditions here. One can easily cross reference public data, a posting on a charitable website or perhaps you ran a 5 or 10K or something else that gets put on the web and you don't need to be much of a super sleuth to find someone's identity. >> > The real name is immaterial. A long, long time ago I have learned >> > never to use the real name on any Usenet forum. [quoted text clipped - 30 lines] > something else that gets put on the web and you don't need to be much > of a super sleuth to find someone's identity. I dunno. I hear what COULD happen all the time. I used my real name on several BBSs in the past and on this newsgroup and others and never had a problem. Even gave out my phone number to Fagbeme once, but he never called. Neither did anyone else. Maybe I'm never victimized because I'm always so nice to everyone ;-) > ... > I dunno. I hear what COULD happen all the time. I used my [quoted text clipped - 3 lines] > Maybe I'm never victimized because I'm always so nice to > everyone ;-) I'm here to tell anyone planning to victimize us that men with prostate cancer can project their cancer onto miscreants who abuse them. That should keep us safe, at least from male miscreants. But seriously, I've been posting under my real name, and with a real email address, since I first started posting on the net a dozen or so years ago. So far (knock on wood) nothing bad has happened. I have had a few old friends find me this way who might not otherwise have been able to. For me personally, using my real name is psychologically important. It's a way of standing behind what I say. It doesn't feel right to me to use an assumed name, especially if what I say is at all controversial. But I don't mean that as a criticism of those who don't use their real names, as long as they show respect for others in their postings. The one use of pseudonyms that I can't abide is when someone trashes other people while hiding behind a false name. And of course spammers with false names are beneath contempt. Alan > For me personally, using my real name is psychologically > important. It's a way of standing behind what I say. It > doesn't feel right to me to use an assumed name, especially if > what I say is at all controversial. I agree(d) with that, but reality in the form of stalkers interceded to override principle long before I recognized the criminal potential. I guarantee you would hide your identity AND filter the buttholes when they start libeling you with many truly vicious pages every day just because you say ANYTHING they disagree with, far most notably anything from the conservative side of the political fence. It wasn't worth losing that much sleep over, even in a forum otherwise a vital part of my life. Thus I try to let my anonymous statements stand up for themselves, supporting them with logic and/or sources. After all, my identity means nothing anyway compared to that of a recognized source I'm parroting or to logic laid out for others' inspection. What carries more weight ... one of our names or a name such as Walsh, Strum, Scardino, et.al.? At least we know their credentials. What matters more, logic or "some dude's" name? It's not like even the most erudite people here haven't made some errors. Recent example: what does it matter who I am when I parrot a uro whose studied conclusions disagree with the incontinence party line? It's her credibility and sources, not the parrot's, that matter. > But I don't mean that as a criticism of those who don't use their > real names, as long as they show respect for others in their > postings. The one use of pseudonyms that I can't abide is when > someone trashes other people while hiding behind a false name. In a (legitimate) political thread deliberately unmoderated in an otherwise moderated forum, one poster challenged everyone to identify themselves. The overwhelming *norm* there was extreme trashing, often nothing but, for pages at a time from the Left, and not one of them would identify him/her self even after I gave them everything but my SS#. Yet there, as here, I don't attack people without explicitly stated and justified cause, necessity, and proof. IOW, we can back up what we say despite anonymity. How are you going to feel when several other, knowledgeable, PC patients and physicians claim every day that everything you say, right down to your having cancer and your personal history, is a lie ... when the audience includes many people you live and work with in the flesh? And how are you going to feel when someone steals your identity and wipes out your finances? I.P. Freely And I'm sticking to it to protect my family from my own angst, at the very least. > For me personally, using my real name is psychologically > important. It's a way of standing behind what I say. It > doesn't feel right to me to use an assumed name, especially if > what I say is at all controversial. Well said. Not a commentary on another's decision with regard to anonymity, but your words have steel in them. >>> I dunno. I hear what COULD happen all the time. I used my real >>> name on several BBSs in the past and on this newsgroup and others >>> and never had a problem. Even gave out my phone number to Fagbeme >>> once, but he never called. Neither did anyone else. Maybe I'm >>> never victimized because I'm always so nice to everyone ;-)<<< -------------------- ROFL!! And perhaps the occasional post wherein you give your height and weight as well?? I sure am not going to mess with a Sumo Wrestler!! Kissies.....Slim Hips >>>> I dunno. I hear what COULD happen all the time. I used my real name >>>> on several BBSs in the past and on this newsgroup and others and never [quoted text clipped - 7 lines] > > Kissies.....Slim Hips He he he Yeah, I guess that could have something to do with it. But "Sumo"? I'm barley WWF. > You are probably right we should all be using pseudonyms.... be hard > to come with one like IP Freely....was that pre or post RP moniker? [quoted text clipped - 3 lines] > something else that gets put on the web and you don't need to be much > of a super sleuth to find someone's identity. I.P. Freely is definitely a post-RP moniker. I couldn't care less, with very few specific exceptions, who knows my medical state as associated with my real name. Heck, my real name may even add credibility to my moniker here, but it's not worth opening myself or this group to the stalkers (whom I hope wrote me off long ago). But Linda Criddle could absolutely and quickly trace almost any of the "real people" here down to that "list of secrets" I posted via channels readily available to criminals from next door to Nigeria. She lays out the process to her audiences from Scotland Yard to global heads of state to Blue Chip CEOs. Your examples illustrate her paths very well. ANY kid on You Tube and ANY adult on their equivalent forums (almost as popular among 40-80-somethings as YouTube is among kids) may as well be printing their tax returns, diaries, photographs, and vacation itineraries in the newspaper. I.P. Anonymously, as best as possible Dear Dominic, I can't help you much, but I'll try. You have two good choices. If I had to make the final decision of whether to be treated at a designated CANCER hospital like MSK, that's what I would do, based on experience. If you're in the NY area, you might be familiar with NY Presb hospital, where husb was treated. Excellent general hospital, but for cancer it ranks #43 in latest usnews rankings. Now husb is at MSK. Very happy with the service. I just checked the rankings for best cancer hospitals. MSK slipped to second place behind MDACC (no big deal!) and Hopkins is third. Also, I read an interesting article in New Yorker mag Sat. about new ways of raising money for charity. In it, they mentioned a doctor who believes in "total (experimental) treatment" (not for PC!). He throws everything he has at the pt. Don't know in this case, but maybe a person can join 2 trials. The very best to you. Leah prostatecancerblog.net New: That Bloody Biopsy @#$%, one couple's experience. Also, *Harry Pinchot on *Self-Esteem* and how to treat the ladies in your life. A wise man. Finally: "Life on the Mississippi -- Updated" and "Have PC, Will Travel." A blogblitz. > Greetings folks..... > [quoted text clipped - 43 lines] > 11-06-07- PSA = 0.61 > 01-25-08 - PSA = 1.12 > Don't know in this case, but maybe a > person can join 2 trials. As I recall, both of these trials specify no other concurrent treatment and all previous medical treatment discontinued some time before. That's what you'd expect since there'd be no way to determine which trial worked, or conversely, which one killed the patient, if he were participating in two of them. Alan > > Don't know in this case, but maybe a > > person can join 2 trials. [quoted text clipped - 9 lines] > > Alan Thanks to everyone for feedback even if we did get off topic. I go see my med onc tomorrow so it'll be a turning point. At the very least I'll probably start ADT. I hope I can be as fortunate as some (Steve K etc) in weathering the treatment. I hope for QOL and no mets for several years and maybe a breakthrough will happen that frees us all from this damned scourge. > Dear Dominic, > [quoted text clipped - 75 lines] > > - Show quoted text - Thanks Leah.... I've been at MSKCC and plan to stay there. Been to Yale and wasn't too impressed. Hopkins is great but too far. I go see med onc tomorrow and it'll be another milestone. I hope I'll tolerate this stuff and can have a decent quality of life. Good luck to you and your husband. Stay healthy. |
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