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SILVER

Robert Parsons and his wife Deborah live in Michigan, USA. Robert was 51 when he was diagnosed in March 2002. His initial PSA was 46 ng/ml and his Gleason Score was 9. He decided on Intensity Modulated Radiation Treatment with both Photons and Neutrons. Here is his story:

My diagnosis came from total urinary blockage which sent me to a urologist for testings. The DRE was positive and the high first psa test (46 ng/ml), lead to biopsies and ultrasound testing. 3-types of Gleason Scores were found on both sides of gland in roughly equal volumes. All twelve biopsy needles were positive with a with high percentage volume in those cores.

I had bone and CT scans which were found clear and signed off by radiologist (but...scans are not 100% definitive until enough PCa cells become present. Maybe around 1-billion cells are required). I proceeded to get opinions on treatments, Doctor 'A'(a surgeon) said curative surgery with 1% chance of incontinence; Doctor 'B' (another surgeon) said, "No way. I will not do surgery on you." (THIS IS WHY YOU NEED MORE THAN ONE OPINION).

I found out that Doctor 'B' was more correct, based on my statistics and went on to seek further opinions. I interviewed radiologists, oncologists, urologists; I talked to centers of excellence like Radio Therapy Clinics of Georgia and Dr Dattoli. In the unreal process of seeing so many doctors, I fired one radiologist and an oncologist (it is your life choose wisely), and after seeking about eight opinions narrowed it down to two radiologists and proceeded with Intensity Modulated Radiation Treatment.

I started Androgen Deprivation Therapy (hormone therapy) at onset of treatment. I am still continuing this treatment, although I have added components and now am on an ADT3+ regimen (Lupron plus Casodex plus Proscar - Zoladex is same as Lupron).

I am now 13 months post IMRT and it is 22 months since my diagnosis. My nadir PSA in 2003 was 0.06 ng/ml and my current PSA is O.69 ng/ml. If someone wants information on hormone therapy and effects or radiation protocols I have some input on them. I also looked into robotic-laproscopic surgery and talked with patients that were pleased with process. I believe that there is a place for every treatment or non-treatment and that is why they exist in many forms. My insurance did pay for it all, I liked that experience:-)

UPDATED

March 2004

 

Just recently March 2004 I decided upon the pre-treatment for possible gynecomasia, male breast enlargement that could occur while using certain drugs: DES or estrogen patches, casodex and there equivalents of course. Since I am doing DES 1mg. and casodex (either 50 or 100 mg), my odds for this are increased and so this is the treatment:

You can have your breasts radiated to stop enlargement, however it has to be before the enlargement is happening, otherwise it cannot reverse it or stop what is there already. I was doing these two drugs for less than 30 days and gyne... was not found by the doctor. So, proceeded to do this. Normally, most radiation/onco doctors will do this in 3-sessions totaling 12 gy (12 grey scale, 1200 rads, probably 4 gy per session).

I got 10 gy in one session all at once, 3.5 minutes of exposure per "boob" with 'electron rays' they can control depth and power levels within it and this is why it is used, it will not hit your heart or lungs as is will not go that deep. It is simple and similar to a sunburn perhaps on the end of the breasts. As crazy as PCa issues are, I chose to have the laughs by doing this now, otherwise the laughs coming are much harder to tolerate. I told someone else that with PCa issues you might have to have your breasts radiated to prevent growth, it has to make you wonder how fictional is this story.

Neutrond-electron Bob as usual PCa issues can be stranger than fiction, but I'm laughing too.

UPDATED

January 2005

 

Rob's current PSA is 0.50 ng/ml and he is now using only DES (diethylstilbestrol) and trying intermittent use. Here's his update:

It will be 3 years since diagnosis in 2002-March/April with ominous original stats. I did hormone therapies ADT, ADT2, ADT3 but dropped them all about 11 months ago and started DES 1-mg. I wanted to get away from the side effects and know Lupron was a cash cow for the doc and manufacturers of it (bye-bye).

I will say that I am glad I made the move to DES and have found no side effects to deal with as I handled the two biggies up front: blood thinner is recommended with useage so I take coumadin (warfarin)- not a big deal - and to prevent breast enlargement I decided upon the light duty radiation protocol to limit and stop that from happening...I did work fine and no big side effects.

The drug has outperformed the ADT3 some, as it lowered my PSA and stabilized it even though I never got higher than 0.90 ng/ml post treatment radiations. I even stopped having hot flashes when Lupron was still in me. As soon as you start DES it cancels hot flashes and you do not have them with this drug (amen). I feel stronger than previously on the ADT regime.

I have recently conversed with Dr. Fernando Premoli of Argentina who uses estrogen patches on his patients and none have had blood clots or DVT's. He knows my case and mentioned that I could do intermittent useage, because my PSA has been pretty stable for a year using this drug.

I already started the intermittent useage via stopping on January 23rd and will monitor PSA soon. I got a fPSA test recently. It was 20%, not great but whatever. My other tests like PAP and Pyrilinks both were excellent and had one register zero (forgot which test now) and the other in safe ranges.

I am excited and pleased at trying the intermittent as my original diagnosis lead me to believe I might not be here this long. Still living in limbo land, you don't know where you stand for certain, but can at least hope and be pleased at the current status. I have no regrets for any of the treatments I chose, I did find it appalling that I had to fire a few doctorss who's profits and agendas were the #1 priority for them. I even got lied to by them more than once, so "caveat emptor" applies.

If anyone wants to know where to buy DES, they will even ship it to anywhere, I could give you the locations I know of approx. (4) of them. Best to you all, we all have to make choices on this and none of them appear beautiful.

UPDATED

June 2005

 

June 12, 2005 have been on DES 1-mg. for approx. 15 months and pleased with no hot-flashes and bone density issues being a plus with DES vs. dimished via LHRH drugs (Lupron etc.). PSA test about 2 months ago was 0.37 ng/ml, the lowest I had in a year or more. New test now is 0.66 ng/ml and I have seen it vary back and forth so have not alarmed just yet. Radiation treatment went well and side effects little to none.

Originally my uro-doc told me that basically I could try 'all' modalties like combined to fight the disease, but was not hopeful for anything. My stats were ominous and higher end of average diagnosed men. Looked into surgery and found it would be for nothing most likely via: many opinions, forums, partin tables, nomograms and such.

Decided upon ADT(3) adjuvant 5 months, then radiations at Karmanos by Doctor Jeff Forman leader in Neutron then Photon Ray useage (2-machines used). Figured it was my best shot at either possible cure or best treatment I could get. Brachy seeds did not look good in my case, would have needed to many and complications thereof looked very real.

Don't regret treatments and dropped ADT and went to DES back in Feb. 2004 and it has worked well and out performed the ADT, levels I had of PSA declined and stabilized pretty much. Hoping that something better will be available to control or cure the disease in the near future (as it is overdue anyway). I tried to be helpful to others as I had very little help when I needed guidance and understand what it might mean. I probably got a little over zealous at times and spoke a little to bluntly at times and apologize to any of those who where offended. It is not easy doing 3 years or more of hormone therapies without it getting to you in one way or another.

If find it most ironic that DES for $120 per year is outperforming ADT3 which is like $13,000 per year, I saved Blue Cross thousands and yet no thank note to date (ha).

That my update for now.

 

UPDATED

August 2006

 

Decided to go off of DES and other drugs completely, at this juncture and see if it is necessary to get back on them (does PSA rise or symptoms show up???). Could be a dumb move or could be wise too. We shall see at some future time perhaps. I am a very independent thinking person and have learned not to trust the 'norm' establishment, that would probably have me taking Lupron for life at $8,400 billed per year.

The DES was not a problem and worked better than Lupron, Casodex etc. I would prefer to not take anything, especially if in the longer run it makes no real difference, then why take anything. Not saying for others to follow what choices I might make, either.

It has been over 4 years since diagnosis now and glad to see things have gone pretty well, considering where I started in stats.

UPDATED

June 2007

 

Rob is now 56 and his current PSA is 0.73 ng/ml. Here's what he was to say:

Well have gone off all drugs for quite some time now and thus far has been a blessing, no side effects any more. My onco-Doc is pleasantly amazed at how I am doing, based upon my original stats and current standings.

My testosterone is in the normal range now for about one year and yet PSA numbers have not gone up to any significant amount, as of yet. All my markers and numbers currently and for couple years have been normal and safe looking. My blood pressure was 102 over 62 yesterday [30 April 2007] which is real nice looking and usually is around that range. Feeling real good and thus far a happy camper.

My personal belief is many patients are over treated for surgery or other first response to hearing you have cancer. Some people should monitor and do watchful waiting (depending upon stats and nomograms), some people should consider looking at Dr. Leibowitz concept of ADT3 drugs for 13 months, quit and monitor using only Proscar or Avodart. One man did this and it has been 10 years approximately: no cancer found on 2 re-biopsies, PSA is normal and best of all he is totally normal as a man still. So, is he stupid? He can still get first line treatments if ever necessary.

I am a witness to using diethylstilboestrol (DES) and found it way better than Lupron-Zoladex and such as to performance (PSA numbers) and side effects. Not to mention it costs me only $100 per year vs. billings of Lupron at $8400. Smell any bias in marketing and profits along the line??? .

 

UPDATED

August 2008

 

Well here is it August 3, 2008 and so far so good. I take no drugs for PCa and do not take supplements and eat most whatever I want, but I try to keep (red) meats to a lower useage. My blood pressure numbers have been excellent throughout and my tests show all numbers within normal limits and includes a normal testosterone range. So far PSA numbers have stayed the same for quite a while or even went down a very small amount. I need to get tested again and may go today to a walkin basis offered by a local hospital for $15 and results mailed to you and your doc (love that option - 'at your convenience').

To the newbies with PCa I suggest you get the book: A Primer on Prostate Cancer- The Empowered Patients Guide.( The ISBN number is 0-9658777-6-0 and it has been available at Amazon and Barnes & Noble as well as at the Life Extension Foundation site, whose support saw the book published.) It has the most information and coverage on PCa I have seen and is meant for patient reading.

I do not claim to be cured by any means so in case you thought such. I am enjoying whatever time I am granted during my journey of life. I am playing guitar and singing with an acoustic group recently and that is a wonderful thing at this age...doing songs that we loved from the 60-70's and up. Songs like: Sister Golden Hair (America), Margaritaville, MoonDance (Van Morrison), Hotel California, Sweet Home Alabama, Ventura Highway and such. This is the fun stuff that I look forward to and is my passion and hobby. Playing in front of an audience is the next step in our plans, so we can keep on rockin in the free world (per Neil Young). I hope I can keep rockin for a number of years and will thank God for gift and talents brought to each and every one of us. We are all unique in one way or another.

Peace be with you my brothers.

 

UPDATED

January 2009

 

Well a minor update that makes my day at this part of the journey.

I did well on the DES and PSA stabilized near 0.46- 0.7 range for long time, as an experiment for myself (I have already pressed the envolope on PCa issues), decided to go off of it and no drugs then and see if PSA rises quickly or not. I needed to know how effective those early protocols might have been, I took the risk. Well here are the PSA's that lead me to resume DES:

April 4 08 stable at 0.47 psa (been off DES maybe 2 yrs)

Aug 25 08 rising now at .95 (starting to worry)

Nov 1 08 1.46 psa (doubling time issues)

Re-started DES around mid-November got new test after short time Nov 26 08 - 0.65 PSA (DES is working well again-whew after seeing doubling time I had my wonders about response) Sure, I don't know how long it would be effective, but I will find out.

I would like to give the finger to my uro-doc whom wanted me on ADT for life (never would of told me of DES or other choices and didn't), of course at his palace. He got fired many years ago and with many reasons. I hated the side effects of LHRH-ADT3 it was rough.

People can make choices in their quest against fighting PCa, lots of choices and protocols.Today I am pleased with the results of resuming.

(Hey if you missed it- I am Mavericky-LOL)

 

UPDATED

February 2009

 

After being off DES for 2 yrs. with a stabilized and low PSA around 0.4- 0.5 ranges, it went up during the last half of 2008 and in Nov. got to 1.48 and so I resumed the DES 1 mg and actually got 4-5 psa tests since then and they were declines each time (and more) and currently at 0.36 level as of Feb. 12th 2009

Like to mention again I seem to have no side effects on this, I do use coumadin for blood thinner....this beats the crap out of doing ADT3 which after 2yrs. was very unpleasant to endure, I feel like a patient who does not have PCa (comparitively) and do all the things I used to without sweats, flashes, fatigue, weight issues etc.

I did not mention my original complete stats at diagnosis so should be interjected herein: Feb 2002- total urinary blockage (emergency room), bPsa 46.6 12/12 biopsies all 80-95% cancerous, Gleasons found 7,8,9's on both sides (Grignon-patho doc)..ADT3(5-6 months)+Rad (neutron & photon-rarer protocol)+ADT3, quit after 2 yrs., started DES for 1.5 yrs, did well quit no drugs for 2 yrs., recently restarted DES 1-mg with results again. :-)

 

UPDATED

December 2009

 

 

Another update and PSA has fluctuated between 0.4 to 1.6 in the last year, but was doing diethylstilboestrol (DES) intermittently and randomly. Recently went on it continuously and PSA fell in about 30 days from 1.6 back to 0.8 (will re-check soon) and this has happened (up & down) thing for about 4 different times in the last year or more.

The side effects (of DES) are breast tenderness and that is about it, vs. ADT3 (awful side effects, plus in my case basically was not working with continuous rises back in 2005 area). Probably unbelievable that I am currently here and in good shape at this juncture, almost 8 yrs. since diagnosis...from emergency room with total urinary blockage and ominous PCa stats.

It may appear that intermittent usage on some therapies might have better re-response than continuous and this dragon of PCa needs to be fooled again and again so as to have receptors accept another round or another drug intervention. Looks like Leukine and other concepts of working on the receptors on a cellular level (non-hormone therapies) is our future answer and has no side effects (assuming it doesn't mess with our over all immune-system). Have a guy in our PCa group seeing Dr. Scholz (video link) and is getting response with this newer protocol, he is a 12 yr. veteran thus far.

As patients we should be looking at everything, if something works for a patient it is an answer to be considered even by others. Lots of ways to combat this dragon, buying a decent amount of time for us uncured types...is somewhat priceless, wouldn't you think?

 

UPDATED

June 2010

 

Well, felt like an update at this time. Have had my PSA fluctuate up and back down a number of times when on DES (diethylstilboestrol), from like 0.6 to 1.3 and back to 0.6 or similar comparisons. Just recently up to 1.5 and most recently 0.75 (it seems strange). I do take Vitamin D3 along with this drug and Coumadin blood thinner (for safety against clotting or DVT (Deep Vein Thrombosis). I cannot tell you enough the differences between being on this vs. ADT3 drugs (Lupron) and such. Huge differences, I basically feel like a patient whom is normal and no side effects and stronger etc. Priceless!!!

Since I dumped my uro-doc after two years, way back now in 2005 I know his agenda of Lupron for life...was a nice agenda.. for him ($$$). Not a nice one for me and ADT3 showed signs of failing me I had monitored PSAs monthly and knew the increases consecutively is a sign. DES stopped all that dropped PSA within days of taking it, did so well I quit for 1 yr. as my own experiment (no drugs). I have nothing bad to say about using it, sure occasionally I might have nipple tenderness (big deal) compared to ADT drug side effects which are awful and many.

This and some other drugs can work even on HRPCa (hormone-resistant prostate cancer)...of course almost no docs mention or use these and sometimes there is no money to made on some either. That is a lovely thought, treatment is all about the money as first and foremost. I couldn't sleep well at night cashing on someone else and not telling them all their possible options...aka.. total truth of the matter. But, hey I don't worship money, power, authority or position.. our culture sure does. There are other drugs not mentioned to patients that have effectiveness, cost less, different effects etc., but it is kept from most patients (contemplate the why and whom is served).

 

UPDATED

January 2011

 

 

January 22 2011 and the continuing saga of living with PCa and fighting it.

I have been going on and off or intermittently on diethylstilboestrol (DES) for in various methods of weeks, months or year. Recently went off for a couple weeks and the result was risen PSA to 2.6 range, so back on DES...so far every time I resumed DES the PSA did drop back, usually to the .5-.8+ range. Since I am a patient living in this Twilight Zone type scenario with PCa, decided to do a little pioneering on my own. So, will add some dichloroacetate (DCA) along with DES and perhaps some other things (additives I might choose along the way), and check out possible influences on PSA levels. DCA is non-FDA approved but you can get it especially from the UK or Europe, it has claims made for some usefulness in cancers. I don't recommend you try it...but I am willing to. A guy in Canada used this with Hormone Resistant prostate cancer that was looking unstoppable...he did get it to slow down in doubling times in his case.

Also going to try the Dr. Hulga Clark liver and kidney flush home programs (might/can remove stones without surgery), my brother and his wife have done these and it was over the top amazing at what came out of their systems. My brothers blood pressure was not responding to the normal drug therapies; upon doing this and improving some on diet his blood pressure is now normal (he is elated).

I have an great open minded oncologist whom has not pushed any drug therapy on me, in the 6+ years I have been with him, I did not ask his advice on the DCA and he is not the Soup Nazi type anyway, which is why he is also my doctor.

If you got other answers for PCa send me a line, always at least willing to look at everything. Outside the box is not outside my thinking.

 

UPDATED

March 2011

 

My PSA went back down again to 1.35 which was nice to see (again). I have been doing random of/on usage with this drug - intermittent DES 1-mg, trace of DCA also might be added - over the years, my oncologist believes it has been to my benefit and I kind of think so too.

My oncologist gave us a Journal article about Dr. Bonkhoff (German pathologist-expert) and the specialized pathology testing that he can do. This sparked my interest big time and so I obtained my pathology slides and better yet, my oncologist made it happen with a local hospital to view, analyze or note some of the slides as notable and get me photos on those slides. I did this and gave this information to Terry to post here, so others can get a glimpse of such things. I do this out of caring for the brothers facing PCa whom are looking for more possible answers and information.[The pictures and Bob's comments are on a separate page which I call Bob Parsons' Pathology 101]

 

UPDATED

May 2011

 

 

My drug is still working apparently after all these years that I supposed to die of blood clots or DVT (Deep Vein Thrombosis) issues (lol). I do some intermittent change ups on taking this drug and have done so for years. I went off of it around late December 2010 and in January 2011 PSA went high to 4.09 (most since post treatments), so went back on immediately and as in the past renewed PSA downwards again. Here are those PSA numbers:

January 2011 4.09 (off drug for like 4-6 weeks prior)
February 2011 1.35
March 2011 1.70
April 2011 1.17
May 9 2011 1.30
May 17 2011 1.39 (different lab) (also tried Casodex and Proscar again for three days and got PSA to see if any effect) I am not afraid to try some things, I may retry Casodex and check PSA often to see if any positive results might happen.

Now considering I am at year 9+ now with my original high stats. It is still amazing on how response is working and my oncologist is supportive of my intermittent concepts. All my other blood and urine testings are in normal ranges, T level is very low which is normal for using this drug, too.

Now I am planning on using different additives along with what I am doing, things like maybe Boron, Artemisinin, some capsule thing from a tree in India (off the bark), maybe random Silymarin for liver assistance, D3, random and very little DCA on occasions. I am looking at other novel therapies and natural type substances, one I am starting to ask my oncologist about and told him I am willing to try it. If that happens and 'IF' I have any results will mention it. (It is a pretty safe novel therapy and works on mTOR in PCa). I am not ready to jump into Zytiga (pills) at $5000 a month as a reasonable therapy (lol). I'll be back...I presume, in this era we cannot count on anything.

 

UPDATED

June 2011

 

 

June 6, 2011 PSA 0.83 (really impressed with that new lower number)

Had I been on Lupron these nine years, any upward PSA would likely be a one way scenario, I had signs of failing ADT seven years ago with increases, DES lowered and stabilized. But, of course this is a junk drug and will kill you??? Excuse me while I laugh at the naysayers. Cost me under $130 per year no patents on this man made compounded drug. Interesting I would think.

 

UPDATED

November 2011

 

 

Still having response from using my DES drug, found out it comes from Italy either partially or totally, but is sold here in the USA. (fyi-man made compounded drug found effective on PCa since 1940's).

I dropped the slight addition of using DCA (controversial FDA banned item), might not of had any measurable effect in my case, it seems? I am looking at a very unique protocol that has very good results found, but not tested on humans (yet) for PCa, but the drugs envolved are already approved by FDA for other treatment usages. Some researcher found that when combining these two, it made a huge difference on various PCa strains that were tested and that the effects in the testings were even measureable in the lab within 30 minutes (in mice) if you can believe that. So a quick psa test could render whether it is useful or not within very short order.

The side effects of these two are known (published data) and not high risk, although have some possible side effects to note. My onco doc is looking into if we can get these perhaps 'free' for test useage under the idea of 'compassionate useage' or similar concepts, which Dr. Moyad has mentioned can happen for PCa patients. The other way it could be obtained is just pay the money for it and with a willing doc for the Rx. Insurance won't cover it for off label for P Ca, cause it would be considered experimental. Estimated cost to try it out is in the thousands.

Similar comparable concept of this is in phase II trials already with a drug by Astrazeneca, and combining of the two drugs in similar fashion. Big 'IF' it comes to pass to try it (first one I mentioned)...I would be amongest the first to try it and likely would.

Naturally I would get a psa test within 3-7 days or so and see what is the effect on psa and possible side effects..

Rob's e-mail address is: zufus_2001@yahoo.com