New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 7/7/2010 6:30 AM (GMT -6)   
Gentlemen and Ladies,
 
I have been researching alternative treatments for HRPCa and keep coming across DES as a possible solution. But I also read that it is not available in the U.S. due to causing blood clots at a dose of .5 mg. Some articles suggest that a dose of .3mg does not cause the blood clot and is just as effective. Does anyone here take this drug and if so where do you get it? (If revealing the source would put you in jeopardy do not do so) My urologist has never mentioned this but suggest that chemo or ketaconazole may be effective.
 
Any thoughts?
 
Regards,
Don
Diagnosed 04/10/08 Age 58 at the time
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear and chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Two years on Lupron completed 01/2010.
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 were full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
Completed IMRT/IGRT 09/11/08.
PSA 02/08 21.5 at diagnosis
PSA 07/08 .82 after 8 wks of hormones
PSA 10/08 .642 one month after completion of IMRT, 6 months hormone
PSA 03/09 .38 six months post radiation and nine months into hormones
PSA 06/09 .36 or .30 depending on who did the test
PSA 09/09 .33 one year after IMRT and 16 months into hormone
PSA 03/10 .32 18 months after IMRT Still on hormones
PSA 05/10 .42 Rising a little as the lupron wears off. Last lupron shot 01/10.
PSA 06/10 .322 Maybe the .42 reported in May was in error?


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/7/2010 6:58 AM (GMT -6)   
Find another doc you already got mislead information, DES is available in USA as man made compounded drug and actually is available anywhere that has a Compounding  Pharmacy, per se. I know of atleast four sources I have info on, been buying mine for 5 yrs.+ probably the cheapest source too, I have an onco doc whom knows plenty on drugs and costs and on PCa issues. He even admits patients are getting cashed in on, even though he may prescribe Lupron, when appropriate.

You need to read the Journal of Urology article on DES Nov. 2003, 1-mg useage is found safe in general even with aspirin tests, but use coumadin for total safety as any doc whom prescribing the same probably would recommend. By the way I found in a friend of mine who decided to try this drug and failed other drugs, I told him try 1/2- mg. I believe it will still work, his doc was skeptical and told him he didn't think 1/2 mg gram would work.....well his doc was wrong and it worked for him with less possible risk. So take 1/2 mg of it if you want. Didn't work as long as mine is working, but he was highly refractive and had no answers for anything to try.

Hey take emcyt or estradiol patches, they are in the same family of estrogenic drugs, they can work on even hrpca, how long is always the next question? Varies from patient to patient. Works well for Dr. Fred Lee  8-10 yrs. atleast in his PCa battle now.

The thing about the clots was from the old days of 5 mg and no blood thinners, seems all the uor-docs point to this b.s. and not the 2003 Journal of Urology article which is 'Their" freaking Bible they even use. Onco docs have patients on these now and we don't hear much if any about current day clots or deaths from them (hhhmmm).

Good luck, alot of docs won't get envolved in these drugs, no profits, no knowledge of the truth on them or biased, possible risk scenario to some degree and surely their legal friends say don't assume any possible risks, so far people are not dying directly from Lupron and it is profittable. Thus a no brainer for their kingdom.
 
Keto is also worth doing if you wish to go that way, fairly cheap too.


Youth is wasted on the Young-(W.C. Fields)

Post Edited (zufus) : 7/7/2010 7:03:28 AM (GMT-6)


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 7/7/2010 6:59 AM (GMT -6)   
Is this something you really want to take without a doctors supervision?

Age 55   - 5'11"   215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
05/18/10 - 24 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/7/2010 7:08 AM (GMT -6)   
Good question Steve, but you need an Rx to get it to begin with. The other argument is that back in the day of PCspecs and I was on forums back then with guys literally clamouring to get this stuff. They did not have a docs Rx, anyone could buy it, sure it had 'some' DES found in it along with other stuff, maybe saw palmetto and such things. The guys taking it didn't feel like lying down and dying with progression of disease or sick of being offered high priced and side effect for chemo's, the ones using it said it worked for them and controlled psa and progression of disease (maybe not forever of course), they were devasted when it was removed from being sold here in USA. So those guys using such were happy campers for a number of years it was available. Never heard on the forum of anyone with problems on PCspecs and it was a pretty open group, people discussed everything.
Youth is wasted on the Young-(W.C. Fields)


Kongo
Regular Member


Date Joined May 2010
Total Posts : 36
   Posted 7/7/2010 7:27 AM (GMT -6)   

You may be referring to PC-SPES (spes is latin for hope) that was a combination of several herbs from a Chinese pharmacy.  Initial testing found that it had varying degrees of effectiveness in PCa treatment but then it was found that the samples being sold in the US were contaminated with some prescription drugs and were removed from the US market by the FDA in February 2002.  There have been some follow-on herbal remedies that contain mixtures of saw palmetto, ginsing, and other drugs that try to mimic the original PS-SPES propriatary formula.  Because of the way herbal drugs are regulated in the US its difficult to perform meaningful studies, although there was one study I read some time ago that noted that the contaminants in the original PC-SPES were not responsible for the remedy's effectiveness in treating PCa.

You may wish to read Dr. Hornan's book about the business of prostate cancer in the USA on this subject.


============================
Age:  59
Dx:  March 2010
PSA @ Dx:  4.3 (Latest PSA = 2.8 after elimination of dairy)
Gleason:  3+3=6 (confirmed by second pathologist)
Biopsy:  1 of 12 cores contained adenocarcinoma at 15% involvement and no evidence of perineural invasion
DRE: Normal
Stage:  T1c
Bone scan and chest x-rays:  Negative
Prostate Volume: 47 cc
PSA Velocity:  0.19 ng/ml/yr
PSA Density:  0.092 ng/ml/ccm
PSA Doubling Time:  > 10 Years
Treatment Decision:  Will have Cyberknife in June 2010
 
 
 


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 7/7/2010 7:39 AM (GMT -6)   
Hi Zufus,
 
I googled the article but was only able to get the abstract. There was enough information to say that DES is a viable alternative to Lupron et al. Makes me wonder why the uro does not mention this when we discuss alternatives. I will do a bit more research.
 
 
Thanks for the reply.
Don

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/7/2010 8:00 AM (GMT -6)   
That abstract is like 3 pages long, read it all carefully and the docs whom did these studies and findings, real interesting. Uro-docs are not oncologists and the pro-quo system is sell Lupron, Zoladex (other LHRH) or use casodex and flutimades or combos. Like I mentioned no profits otherwise. Do you think Dr. Fred Lee is wrong and with results, Dr. Premoli and his long list of patients on estradiol patches, I am wrong and with results over 5 yrs. that are significantly better than Lupron? How about many folks whom used Ketoconazole for decent while, they exist out there. Ok, I am wrong (lol) would that make everyone herein happy. Aren't the uro-docs part of the bribery scandals on Lupron and Zoladex...that is historically accurate (google it), maybe ask him about that scenario and what he knows of it??) Let me guess his answer...Oh! that type of thing is done all the time and surely I was not part of that???? Great answer...what does that say about our system in general?

I did some research into this too, it appears to me that most all the information on DES from the early V.A. hospital uses and similar info from 1940-1980 or so, is not found, nothing seems to exist, to some degree. Must be a coincidence. There is this old Journal of Urology article too (doesn't mean cure, worth hearing?): (google it: Complete remission w/DES: Journal of Urology 1995. 153 (6): 1944-5) or try: www.ncbi.nlm.Nih.gov/pubmed/7752364  (this is not the complete abstract but a synopsis, read the first link in completeness). Sephie or someone herein had a grandad whom used this, he lasted a very long time and died of something else, interesting, not definitive of course...when is PCa issues totally definitive for everyone? Do you agree that we are marketed upon with drugs?  If not I can provide plenty of examples!

(The remission thing article was posted on the forum at www.yananow.net by Terry Herbert at one time)

Hey on the PCspes-  'contaminants',  no  there are drugs,  put in illegally (ok), but drugs, some docs take and prescribe these same 'contaminants'  (LOL)  Make it fit the agenda!


Youth is wasted on the Young-(W.C. Fields)

Post Edited (zufus) : 7/7/2010 8:14:44 AM (GMT-6)


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 7/7/2010 8:10 AM (GMT -6)   
I will look for the older article too. I did a quick search on DES and foundplenty of suppliers.... if I were a incontinent dog! turn   Seems the vets are still using this. I found DES for human consumption available in the UK. (Assumed UK because the cost was in british pounds).
 
I share your skepticism on the profit motive of medicine in the U.S. but without profits there may be no progress. It does cost someone to develop, produce, and deliver these drugs. Albeit the charge to the patient seems to bear no relationship to the costs associated with the drug. Ah, capitalism at it's finest... whatever the market will bear. I must admit though that my docs were giving me the lupron at cost from what I could tell. Still some out there who are motivated by more than profit.
 
Don

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/7/2010 8:21 AM (GMT -6)   
Hey Don you can get Lupron, or Zoladex in Canada legally shipped here with an Rx, costs are:

Lupron (Leuprolide) 3.75 mg 1-dose $199         3.75 (3 doses)= $525                                   7.5 mg (3 doses)=$899

Zoladex (Goserelin) 3.6 mg 1 dose= $245 10.8 mg 1 dose= $695

www.northdrugstore.com  (Canada search any drug, no DES offered here, emcyt-yes)

So compare to their retail as to your docs, give away plan at cost, of course he needs a fee to inject you...what is that worth now??? Nurse doing it too?? :-)

This is in USA dollars, perhaps a small shipping charge to add. This is their retail price to consumers. Hey I have howled with my two dogs, is that a side effect? (laugh)

 


Youth is wasted on the Young-(W.C. Fields)

Post Edited (zufus) : 7/7/2010 8:27:37 AM (GMT-6)


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6945
   Posted 7/7/2010 8:26 AM (GMT -6)   
There was a segment on 60 Minutes (maybe this last Sunday?) about the PC-SPES demise. I think it was the DES content that got them in trouble to begin with.

don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 7/7/2010 9:22 AM (GMT -6)   
Zufus, I was getting a four moth shot. I believe it was 11.5 mg for $650 and the injection fee was $69. Nurses need to make a living too. :-) My research for pricing at a well known pharmacy chain was $2200. Another chain had it at $3000. Helps to shop around.
 
On the subject of herbal treatments (cannot be patented as i understand the rules) I ran across a treatment called noscapine. Seems it was effective but none of the drug companies wanted to bother as it was not patentable. Anyone else have information on this?
 
Don 

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3738
   Posted 7/7/2010 9:52 AM (GMT -6)   
"There was a segment on 60 Minutes (maybe this last Sunday?) about the PC-SPES demise. I think it was the DES content that got them in trouble to begin with."

When word got around that a herbal product was WORKING, you KNOW a major drug company analyzed it, hoping to isolate the active agent and perhaps patent it so they could PROFIT off it..When they discovered the estrogen, no profit there, they blew the whistle to their handmaidens, the FDA, and had PC-SPES removed from the market "to protect the public from a dangerous product"...Uh-Huh..

That's the only possible way the FDA found the PC-SPES to be contaminated..

When you are approaching the end of your life, who the hell cares what kind of drugs you take or where you get them???
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. A "top" radiation oncologist here in Denver, equipped with the latest IMRT/IGRT/RapidArc machine says he can do better by me..


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/7/2010 11:01 AM (GMT -6)   
I love that thinking Fairwind (precisely ask the man whom found new results), I go by neutrondbob on the other forum we met at, and you have done some good shopping around on radiations, I was amazed at the newer advances in machinery you mentioned. Good luck to you I can see you know well enough to question everything. I even admire your style more and more. Your family members journey with her cancer and treatments, gave you a big heads up on what can and does go on, out there.

DCA (Sodium DiChloroacetate) is another drug the FDA doesn't want here in the USA, for fighting 'cancers' in general and not patentable as is it, maybe altered then patents. Some people are having various types of results and in various types of cancers, but alas FDA knows for sure it is junk so why have it in the USA? You can buy it without an Rx (and flip FDA the bird too) and have it sent to you, have caution even if considering it and analyze all you can on the internet before using it. Their is no single protocol or booklet with this, that is standardized. No this is not for everyone, I did not say it is your PCa drug, interesting to read that it does effect the P53 gene in your PCa. One guy in Canada charted and claims it slowed down his psa doubling time, Iam sure he would listen to the FDA first. Costs maybe $60 w/shipping (from UK) for 20 Grams, doseages used might be around 20 mg (1000th of the bottle).
Youth is wasted on the Young-(W.C. Fields)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 7/7/2010 11:13 AM (GMT -6)   
Do you really think all the Anti-FDA bashing does a lot of good? Have you ever studied the development and history of the FDA, while hardly perfect, and sure - they have made some bad calls over the years, they have still done a lot of good in protecting American citizens from harms way. To deny that, would be to deny a whole lot of facts and stats on the subject. Combine that with all the doctor bashing and test bashing, its a wonder there's any reasonable good advice left to give. Each man still has to work his own journey with his cancer, along with his family and loved ones of course, and there are precious few of us that aren't limited in dx/treatment choices by our personal finances or lack of them, along with the confines of health insurance, if you are fortunate enough to even have any.
_________________________________________________

Fairwind - I agree with you. If one is terminally ill, and there are unconventional approaches, trials, drugs and meds that could even give a glimmer of hope to someone terminal, then it should be their choice, as long as its not something that is openly illegal, in my opinion. It's kind of like those that get concerned how much morphine someone is getting is hospice. They are already dying, they are going to die, so at least let them die without the struggles of pain and fear associated with pain.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, 7/2 - Caths #18 & #19


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 7/7/2010 11:46 AM (GMT -6)   
David,
Your comment about the morphine rings true. My uncle died from bone cancer when I was 16. Knowing what I know now it was probably PCa. My incle was in the hospital for 90 days before he passed. At one point he was curled up in a fetal position and moaning. He did not recognize any of us in the room. My aunt asked the doctor for more morphine and he replied that he could not give him more as it might cause him to become addicted. Man, I still boil when I think of this. I blurted out "Hell, he is dying what does it matter if he gets addicted?" I was asked to leave the room. My uncle passed about three weeks later.
 
Thankfully that attitude is no longer prevalent. In fact some patients are given control of the IV for pain meds that they can increase or decrease as needed. May not be morphine but at least there is an attempt to alay uneccessary sufferring.
 
Don

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 7/7/2010 1:20 PM (GMT -6)   
Don, sorry to hear about your uncle. That kind of thinking is sad and silly at the same time. Who cares if a dying person in pain gets addicted to morphine or not, the whole point is to ease their earthly suffering as much as possible. No one should have to suffer in pain, let alone suffer and die in pain.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, 7/2 - Caths #18 & #19


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 7/7/2010 1:31 PM (GMT -6)   
Guys, it's time to steer the boat back on track. No need for or place for bashing of any kind here. Remember, its help, info and support, not stump speeches, conspiracy theories or anti-government advocacy. Anti-anything has no place in the forum. Healthy discussion is fine, but let's leave the politics of cancer, government and law in other places on the internet, there's sure enough of them where you can speak your (piece/peace?).
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 110 gms., margins clear
3 Years: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN


Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3738
   Posted 7/7/2010 4:20 PM (GMT -6)   
I think this thread got started with DES, Estrogen. Someone mentioned Soy milk as a substitute for dairy milk..One should know that soy products have a high estrogen level and so might help PCa treatment..
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. A "top" radiation oncologist here in Denver, equipped with the latest IMRT/IGRT/RapidArc machine says he can do better by me..


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 7/7/2010 5:23 PM (GMT -6)   
Fairwind, soy products do not contain estrogen per se. Soy contains a natural chemical that mimics estrogen, the female hormone. Some studies in animals show that this chemical can alter sexual development. And in fact, 2 glasses of soy milk/day, over the course of one month, contain enough of the chemical to change the timing of a woman’s menstrual cycle.

As with everything, there are pros and cons to adding soy to your diet. It is certainly heart healthy but there's a darker side to a soy-based diet including the blocking of magnesium and other important nutrients and problems with brain development in the very young.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, June 18, 2018 6:03 AM (GMT -6)
There are a total of 2,972,718 posts in 326,008 threads.
View Active Threads


Who's Online
This forum has 160855 registered members. Please welcome our newest member, Jack@.
292 Guest(s), 3 Registered Member(s) are currently online.  Details
SharonZ, Kay Tee, iPoop