Seldom mentioned protocol for PCa that could be for you

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zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/26/2008 8:07 AM (GMT -6)   
I know of a patient I met at my local support group (PCa), whom about 12-14 years ago at age  51 or so was looking at alternatives other than invasive surgery. Here is what he did and his results thus far, which are impressive to consider. He was diagnosed with 2 positive cores and lower percentages of cancer in those biopsies, and given Gleason 5 (that is low end), had psa of 10.2 approx. also. He decided to try hormone therapy called triple combo hormone therapy  (ADT3); 3 drugs: zoladex (or lupron)+casodex+proscar and stayed on them for 13 months, then quit and stayed only on proscar for "maintenance" purposes.  Well time went by and he got re-biopsied at two different junctures and nothing was found in biopsies, also his psa level was well within normal range and stabilized. Best thing for him is his manhood was only compromised during and short time after taking the hormone therapies (side effect), but he is totally normal and functional and now it is 12-14 years later. Also, he could still do surgery (although it is more difficult after using the drugs-it shrinks the gland and it becomes more of like a sticky gland-per se). He can still get all those other treatments if he needs them.
So, is he a fool for not being rushed into surgery or whatever and taking those risks and possible life altering consequences. Does not look like it to me and he is not second guessing himself. Now are there any docs that suggest this protocol??? Yes there are some out there, you could google Dr. Leibowitz as he is an advocate of this or similar. This protocol might also work for a patient that is very high end stats (high risk) that would not be reasonable candidate for surgery or even other protocols as they could be done without possible cures. This however would not cure them, but could buy them alot more time of progression of disease.
Note that side effects of these drugs are unpleasant for those 13 months: fatigue, sweats, may muscle pains, weight gain, but these are over a while after quiting the drugs. Proscar usually has little or no side effects to complain about, I had no issues with this drug.
You will need insurance or alot of money for these drugs, this protocol might cost  $13000 a year in the USA. If you have good coverage it might cost you a little in co-pay for the casodex and proscar, the cheaper of these drugs anyway. Proscar or avodart can be used for maintenance, avodart is said to be more potent by comparison.
 
Bob  (zufus-not the same as dufus, fyi)

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/26/2008 10:23 AM (GMT -6)   
HiBob,
ADT3 is quite common. Strum, Myers, Lebowitz are big names that are touting this protocol, but it is common with patients here and at other sites. My research on this has option not shown any particular overwelming positive results, more so claims than studies, though there are those who claim it is an absolute treatment protocol. But I wouldn't put too much into an example of a patient with a Gleason 5. Some say these guys can be cured with a biopsy...lol. I would say that that if a patient came here with those numbers that he should at least have MRI/CT Scan/bone scan of the prostate, bones, and lymphatic system before commencing forward with any treatment. And also this particular patient could have also done nothing for a period of time and skipped the SE's of ADT3 to monitor the disease progression. If all the other tests came back clean, then his high PSA could be a simple case of prostititis or infection. And also a Gleason 5 as opposed to a Gleason 7 are not going to respond the same to this form of treatment. I know of many with Gleason 7 and above that chose this option alone in their treatments and they are not doing quite so well. But it is time for some multiclinical blind trials to see what exactly is the benefit is for this treatment option ove 5/10/25 years. I have seen many varied studies that have not shown the Avodart/Finasteride (Proscar) options are the silver bullet per se. And for me, with pT3b tumor size, and a 4+3=7 tumor grade, and 20 PSA, I am glad the prostate is gone. And while I have added radiation and ADT, I have acheived a twenty point PSA drop to undetectable.

Just curious, Have you been diagnosed with prostate cancer, and are you considering this treatment option? If so, what are your numbers? Have you discussed this treatment option with your doctors?

Tony

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/26/2008 12:51 PM (GMT -6)   
Hey Tony just pointing out that perhaps this protocol, is good for ones with indolent PCa, light duty PCa (per se), "insignificant PCa" or parameters that are even somewhat close to those, might be better served by looking closely at this vs. harsher treatments that can leave you incontinent, or with E.D. and other things. The fact that this guy had 2 re-biopsies and found zero, not even high grade P.I.N. is pretty decent, of course no guarantees with PCa, does not mean he is cured either, does mean he bought 12-14 years and stayed as normal as possible.....that could be priceless to some guys.  Alot of newbies are never told by Uro-docs and others that this is even a possible avenue.
Scans of any type with most patients whom had 'low stats' or close to indolent PCa, would most likely be found with clear scans. Scans of any type are not as worthy as people are told to believe. I had clear scans with these numbers at diagnosis in 2003:  bpsa 46.7, gleason 8 (overall), 12 positive biopsies, equal on both sides apparently with gleasons found of 7,8,9's on both sides, high percentages of PCa in all 12  (75-95% ranges), given gleason 8 overall for some reason: I had CLEAR SCANS. I think I had prostatitis but it never got diagnosed by my Uro  (whom I later fired). I started on ADT3 about 5-6 months before doing radiations (unique protocol: 2 machines, 2 types of radiations: 10 sessions or so of Neutron rays via Cyclotron and maybe  24+- sessions of photon rays via IMRT machine). Stayed on ADT1-2 drugs thereafter for about 1.5 years, then hated the side effects and finally found in interesting Oncologist whom heads up a PCa support group, whom handed out an article from the Journal of Urology mentioning DES drug for PCa. I decided I was going for that as the benefits of it outweighed the risk and the non-side effect issues and better results even against hormone refractive PCa, sounded good to me. Well I got psa tests often via a walkin testing gig  $15 each time, so I monitored my psa for about 2 years closely, the DES drug outperformed the ADT3 drugs quickly and stabilized my psa low for along while, so after 1 year+ decided to take nothing and see if psa would rise quickly or not. Well it took about 2 years now, until just recently and psa has risen enough that I felt it was best to resume DES  (got to 1.47 level), been taking it for a couple weeks and will get retested soon and see where I stand. Note that as soon as I took DES the Lupron that was also still in me, the lousy side effects were cancelled by the DES.  I loved feeling normal as to strenght, and no more sweats and fatigue. My testosterone level got back to normal or close to it almost 2 years ago and my psa and numbers did not change until just recently.  Now DES  (man made estrogen type drug 1-mg capsules) out performed the $13000+ ADT3 drugs, how much did DES cost????? Amazingly it cost me with shipping  $100 per year of course you need an Rx and an open minded doc to give you the Rx  (he makes zero money on this deal). You should take coumadin or aspirin for minimalists while doing this drug, and you should be prescreened to your blood clotting abilities etc. This drug is used in foreign countries and here, was used alot 30-40 years ago and back then had issues with to high of doseage and no blood thinner used. It is generally not the big risk some docs might say that it is, the Journal Article mentions it is not a huge risk to use. Considering where I started with PCa with total urinary blockage and those high stats, so far I am pleased with the results.
 
Thanks

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/26/2008 1:33 PM (GMT -6)   
Caution is needed with all treatment options. Your case is that of an advanced patient with high risk disease. The risks of taking DES are understandable, but...DES and ADT3 are dangerous for many people. Taking DES for many years can actually lead to mortality in men (well mentioned in the Myers book, and by many well known oncologists). And I have never heard of DES cancelling the side effects of LHRH agonists, and DES generally makes matters worse. We have a couple members here taking DES with ADT3 and they still have the SE's. The reason the estrogenic drugs were used 30-40 years ago is that that was what was available. The ADT we have today was the answer to the high mortality rates of introducing estrogen in a males system. Only in extreme cases is this a viable option. Being a somewhat knowledgable layman in the prostate cancer arena, I would never recommend ADT3, even short term, to a gleason 5 patient unless the disease was proven to be advanced. It is not a cure and it's long term SE's are worse than incontinence or ED. DES is not the answer for most with prostate cancer, otherwise everybody would be doing this still. For you, I understand it. You have advanced prostate cancer and have you failed ADT3 and are showing signs of HRPC. Just out of curiosity, how old are you? How long have you been engaged with a fight against prostate cancer.

My insurance would cover DES as an LCA, in fact they would demend it, but I, and my insurance company, knows not to drink from that grail unless we absolutely have to.
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


aspen4
Regular Member


Date Joined Dec 2008
Total Posts : 59
   Posted 12/26/2008 7:13 PM (GMT -6)   
Great post
My current Urologist here where I live and the Drs at MD anderson believe that Hormone therapy works for me until it quits working. No one can predict that time though. In my case surgery is not yet an option. MD Anderson seems to think that I, ME will continue as I am for another 8-12 years and then possibly have some radiation. Of course things are changing all the time in this field and todays treatments may be different in say 5 years from now. Bottom line is that everyone is different and that there is no one treatment that works for everyone here. All I know thus far is that PSA is the marker of the progression of this disease.
Hormone therapy has worked for me and the side effects after 9 months have become very manageable.
Just my opinion and what little I have learned so far since Feb 09.
PSA was 344 in FEB and had spread to the lymph nodes. Since then my PSA has dropped to .3 and the nodes have shrunk by 2/3 s

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/26/2008 10:42 PM (GMT -6)   

Selmer great to hear this story and isn't interesting that this doc was highly displeased that someone got great results with DES, why????  Someone stealing the cash cow of the new drugs??? Are these newer drug makers righteous ones?? Google the lawsuits on Zoladex or Lupron and how they lost and paid millions out and it never stopped them from selling them. I am not against using those drugs and they have there place as do all PCa treatments or non-treatments, I am against profitteers and the biberies and such given to doctors to use only their drugs (agenda driven by greed and profits) and by price goughing, the profits made on these types of LHRH agonists is outrageous, but welcome to the culture of greed. Guess how much Lupron costs in Spain??? A friend I met on boards says 3 month doseage amounts to maybe  $400 (USA compared dollars); so are we being "marketed" to because we have more insurance and high incomes in our country???? Lupron here is many times that amount and it is also used on women for some therapies and they pay less for it also, go figure. You decide what you believe is the actual truth.

There is a Journal of Urology Article from around Nov. 2003 on the Non-steriodal effects of DES useage.... It is a fabulous read on this drug and its benefits to the patient and is one of the few drugs that can work against hormone refractive PCa, maybe not for a long time or to cure one. But when you can possibly extend your life, you might like to know your options.

As to the side effects on DES, yes I did lose some hair as you mentioned. I felt strong and pretty normal (had E.D. after prior treatments already), I got breast radiation that is available to prevent 'gynecomastia' it apparently worked pretty well, I did not wish to take the risk of keeping 'abreast' on PCa literally. That was done with electron rays and short exposure with controlled depth penetration done in one session, usually done in 3 sessions, left me with like a sunburn appearance for 1-2 months (round spots around boobs about 6" diameter, but it did go away and no problems have cropped up). The psa results on DES were excellent compared to ADT1-3 useage, so I went off of it for 2 years, I like to keep more to natural and undrugged if possible. Just started resuming it and will see how it goes within 1-2 months or so. It is not for everyone and I did not say it was. It could be an alternative for some along with alot of other drugs that are used against PCa and especially hormone refractive PCa.

Thanks for sharing that story on his DES useage, there is not alot of positive information out there on this, why???? Believe what you wish, I am going with there is no profits to be made on this and secondly if a doc prescribes it and you have major problems like a blood clot, he cannot win a possible lawsuit, so most docs won't even put themselves into that somewhat unlikely scenario. The drug is much safer today in low doseage and with coumadin and patients being pre-screened for clotting factors. There are some docs that will prescribe it and know it is useful, I would call them compassionate in the patients wishes because there is no money motive for it at all, also they would have to be open minded and have looked at things like that Journal Article I mentioned. Isn't it uncanny that $100 year drug can out perform $13000 combo drugs and does not deplete your bone density, and can actual cause direct apoptosis of PCa cells  (not make them dormant but kill many of them directly). Such stuff is written in the Journal of Urology Article I mentioned, of course it is not news worthy, just as home remedies and treatments(for any medical ills) are considered worthless many times, too by the mainstream or for profit establishments.

 

Zufus (if you like to add the D to it, be my guest I chose the name as a fun thing anyway if you cannot laugh at yourself, you take life much to seriously, but we are allowed to have are opinions and free speech...atleast so far)

 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/26/2008 10:55 PM (GMT -6)   
Great post Selmer!
Obviously what I know about DES is limited. My wife will tell you that what I know about anything is limited.

Bob, I took the liberty of linking your Yana site in your other thread. I hope you don't mind!

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/26/2008 11:45 PM (GMT -6)   

Tony I can appreciate that, as someothers don't know who is this guy??? Is he selling snake oil or is he telling his truth of PCa issues??? We all have contributions to make for PCa issues and all can have different stories, situations, outcomes, protocols and histories. I know mine is not the average presentation or case and I did challenge the norms is some areas and with decent reasons. Based on where I started back in 2002 I cannot complain at this juncture, it could way worse. Down the road I am not sure what I would choose to do for therapies or treatments or do nothing. I used to worry about psa tests and results all the time when first treated. After psa stabilized for a long while, I concentrated on just enjoying life.

 

 


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 12/27/2008 8:21 AM (GMT -6)   
Each person has a story to tell. What has helped someone may not help another with a different DNA structure. We are beginning to learn more about individual DNA and how they react to different treatments.
There was a study I was reading about a mouse called Mighty Mouse by the laboratory. A group of mice were injected with cancer cells....Only one did not get cancer, So they injected him with ten or fifteen times the amount of cancer cells...still he didnt get cancer....so they injected him with 150 times the cancer cells. Still no cancer. Then they bred him to another mouse....They injected those mice with cancer cells ...All got sick and were dying. The research doctor went away on a two week trip, and when he came back he was astounded to see that a few of the mice were well and without cancer........
....That is the difference in our makeup..
.Probably in ten years Pca will be treated totally individualized....I think the best thing for now is to learn all you can before you make your decision and then do not second guess what you chose if the side effects become worse than you thought they would.

DES is a powerful synthetic estrogen....It was originally given to women to prevent miscarriages. I had not heard of it being used with prostate cancer. Di
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
Waiting to see if AUS gets better results
Complete hip replacement surgery coming up Jan 9, 2009


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/27/2008 12:08 PM (GMT -6)   
Hi lady Di,
I have heard of DES in PCa many times.  Estrogenic drugs were used extensively before the current HT chemo drugs.  That is why there are known risks in it's usage.  But times have changed, and Selmer is right that the method and rate of dosages and the more sophisticated monitoring are indeed making it safer for men to take it.  Today it is almost exclusively used in extremely advanced cases where ADT(Any) has failed.  Bob is an advanced case, and he has extensive experience with the drug.  LOL, he is a bit harsh on the doc's, but his point is correct that many are not good at emphasizing the "what ifs"...I linked his thread at Yananow below.  Fascinating reading... 
 
 
I think! (That should be a warning sign right there)
 
Tony

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/27/2008 8:59 PM (GMT -6)   
Selmer thanks for finding that, it is not easy to get the article into your hands. I got a Xerox of the article years ago and could copy it. It is rare to find data like this about drugs like this.

Bob

divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 12/27/2008 10:03 PM (GMT -6)   
Tony, Thanks for sending me the site for Bob (Zufus) I found it very interesting. Pete was on lupron for one year in 2002 when he had the original brachy and then external radiation. I really believe that it was the foundation for his hip problems. How he has to have a total hip replacement next week.. His PSA, although very slight, is rising, and the doctors may start to talk about ADT....I am pleased to learn about DES. Thank you Zufus for bringing up the point... Di
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
Waiting to see if AUS gets better results
Complete hip replacement surgery coming up Jan 9, 2009

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