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:-)
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.
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.
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.
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.
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???
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.
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)
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. :-)
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?
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).
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.
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]
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.
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.
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 involved 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 measurable 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 amongst 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.
Alright, ready for currently updating my journey. Finally had more PSA; escalations while on DES only in late part of 2011. Got up to over 4.10 even and decided to try another approach, I am not necessarily willing to jump into chemo and expensive protocols, especially if I have choices. At one of our PCa local group seminars (not a marketing thing), our doc had a Journal and video presentation on information of using combined (new concept kind of) drug therapy to effect a new response in failing PSA;'s (rising PSA;) scenarios. Anyway 3 of us guys within the group are longer term survivors/warriors and had rising scenarios, 2 of us using DES 1 mg., the other guy using estradiol Mylan patches. So the article showed results via graph bars that were hugely seen effective and in LNCAp various types of PCa's tested in the lab. So, we did casodex(generics ok)+estrogen drug (DES or Patches) and all 3 of us got PSA; tests done soon (we have access to walkin testings $15 at hospital nearby), all 3 of us got declines in PSA; (kind of amazing to see), mine only lasted 2 months+ (I got PSA;'s often), the other 2 still have on going results into 3+ months thus far. So that little trick is worthy of looking at.
Now since I have escalations in PSA; even after casodex+DES concept which did work a few months, now have to confront what to try next??? Decided to try simplistic and less side effects, so currently jumped int Eulexin (flutamide) and seems I am getting response via PSA; tests just done, but I have not been on this very long, not even 3 weeks yet. So, time will tell if this works....I have seen where after failing on casodex some others got new responses on either Eulexin (flutamide) or Nilandron (nilutamide), so why not try such and find out? My other considerations in possible future use right now include looking at: Keto, MDV3100, or possible combos of something. Interesting to note that Journal article shows huge results in 2 drugs that are already approved for useage but not commonly used on PCa and we need someone to see the results. The drugs are Sprycel + Chloroquine (this drug is a malaria drug), for some reason combined these were high effective in PCa testings, singularly not that useful. If you think this is lousy science, Astrazeneca started trials Phase I-II on this combo but with there version of similar Sprycel drug+ Chloroquine...they wouldn't risk millions on a stupid protocol and I expect there thing to succeed based upon these researched findings on the drugs I mentioned. If I get a chance I could pay cash for those drugs and try them, with an Rx needed. You could test it out for around $3-4,000 via www.northdrugstore.com prices.
Been on DES 1mg for coverage over 8+ yrs., more recently PSA; started higher levels to 10.0 and luckily did get it back down for a few months anyway by doing some unique concepts. I tried euxlexin a similar family drug to casodex and in my case it did not work, I can get walk-in PSA testings for $15 so I can try out drugs and results fairly quickly. Anyway my onco type doc found only one Journal article on this but basically said if you are failing on mono therapies like just Casodex (anti-androgens) or DES (or any estrogenic drug), that if you combine the two in combo therapy you will l likely get a new response and lowered PSA;. Well I tried that with casodex (generic)+ DES 1 mg and it worked and dropped PSA; over a few months and 2 other guys in my local support group have the same onco doc and they tried it, one guy was using estradiol patches and added Casodex the other guy DES and we all got at least a downward response, mine lasted the longest perhaps it was 4-5 months.
Ok, so now PSA; rising again with this protocol, so switched to estradiol patches .1 mg (3) patches used the first week as mono therapy and PSA; went up from 8.36 to 12.45 so apparently this is not working. So, just decided to try another concept of using DES 1 mg+estradiol Mylan patch .1 mg+casodex (generic) and will test this out over 1 week and get PSA; test to see if any results are possible. So, far no real side effect differential. I think when I did Mylan .1 patches (3) of them the first week my jaw on one side had some pain if opened enough (necrosis?- it is possible). Seems better now with only .1 mg estradiol and never noticed this using DES for all these years. Also, my DES I found is made in Italy but sold here in the USA which is kind of unique I believe as most others are getting compounding pharmacies make it up here in the USA. So, now if this therapy does not slow, stop or reverse PSA; then I have to consider other newer therapies or even bizarre ideas or do nothing. But, will look into all options possible and get back here with report. I did get a fabulous response on this DES and was failing ADT3 way back in 2004, so pleased about all those good years and good quality of life, like no side effects in comparison.
Well now after trying some HT changes in drugs and combos and had some temporary good PSA; results, recently escalations in PSA; getting away from control. I had some strange back pains recently that kind of drained me of energy and felt like pressure to lower right kidney (maybe a stone??), it went on for couple days, so went to see urologist first to get his take or guess. My urine test was normal, retention was not an issue via ultra sound comparisons after voiding there. He mentioned his guess is the elephant in the room, you have original high stats and over 10 yrs. dealing with PCa, more likely to be PCa somewhere and should get scans done.
So, I went and got new Ct and Bone scans and lo and behold, now identified with some mets, findings are T9 with 1/2" lesion seen, L2 still defining that area (just got MRI on that to be assessed further), one lymph node found positive and some lung nodules. Not what anyone wishes to hear, ever. So my onco-doc referred me to a radiologist Dr. Aterbery whom also uses a method on bone mets and the prostate gland also, called SBRT or Stereotactic Beam Radiation Therapy it is written about in the Dec. issue of Paact Newsletter for free on line readings of their PCa advocacy newsletters (see also Hypofractionated Doses). So, this is the current plan to start radiations soon, total of 5 sessions to handle the T9 or L2 locations. This is considered high dose plan and thus not 15 sessions, but in order to keep the patient movements down to near zero, they place you in a bean bag type thing and then use like a shrink wrapping around your body onto the table, so spine and body are not moving even much when breathing. Takes 20 minutes per session I was told.
I recently switched to Ketoconazole HD (high dose) 400mg- 3x a day and prednisone 5 mg- 2x a day along with it. After two weeks it did not lower my PSA; levels and increased some within those 2 weeks usage, but might not have had acidic stomach as directed or could take longer to work, didn't like the headaches and fatigue, switched to LD (low dose) 200gm- 3x a day and feel better and will see if it works at all.
After the radiations I will check PSA; for possible lowering from that protocol, too. Then the plan is to start on Leukine injections, used by docs like Myers, Scholz and some others. I already have possession of about 2 months worth of this, thanks to a guy whom donated his leftover stock, big time gesture (value $7000+). If it works may get my insurance to purchase it later or switch to other options still on the table for usage. At some point I may just stop and let it runs its natural course, not beautiful to contemplate, but might be better than side effects and expenses.
Well I tried Ketoconazole for 1-2 weeks high dose level, then switched to low dose for about 2 weeks and it did not really change PSA; levels and may have had side effects related to using it. Switched to Leukine+estrogen patches+Ketoconazole for coverage time of about 3-4 weeks and sometimes had a huge reaction to the likely the Leukine as to heavy chills and fatigue...at one point I checked into emergency and stayed at hospital for 4 days getting antibiotics and tests (nothing defined as the causes and not the flu). Did have some blood tests and liver function tests that were abnormal, so suspect the drugs used like Keto and Leukine as the culprits, so dropped those drugs and I did not get PSA; reductions that usually 70% of hrpca get on that according to Dr. Myers (Dr. Eric Small has a lot of research on Leukine usage, fyi you can search for info).
I did go back onto casodex+proscar+estrogen patch .1 mg and just recently one month testings used, it did hold PSA; stable and very slight reduction in PSA; from 23.30 to 22.37 but this is not good enough, so onto another protocol. I am going to start a unique and new protocol today 3-5-2013 and my friend Doug started this protocol and is likely posting it to yananow to show how a hrpca whom failed Lupron and other drugs, has managed to recently get his PSA; down to .007 (unheard of results). Here is the concept of this unique protocol, Lupron used (even if you failed on it, using it to get T level down as much as possible), now the unique part Dexamethasone (steriod that is way different than prednisone, because my friend found out is has 2 pathways to effect PCa that prednisone doesn't have and within those pathways it somehow blocks DHT levels which fuels PCa). His DHT level was measured and it was ultra low (towards zero) as was his T level at 1.0 (almost zero), using estradiol patch along with this protocol to assist bone density and maybe assist T level lowering also. Side effects of Lupron will be lessened with the patch added also....this maybe a good protocol to try on, I am going to try it starting today with Lupron shot.
I already had T-9 lesion zapped by CyberKnife in January and that seemed to go alright, getting results scan this month to compare a before and after. It was found using MRI and that is why I decided to have that procedure done. So, far still doing pretty well and feel pretty good but realize subject to the dragon that looms. So will see how this newer protocol works if not working, then onto other drug choices or something even outside the box.
Well after battling this now for 11 years and having done various protocols, some with good responses and recently most of them with no results, until this month. I probably mentioned I tried the concept endorsed by Dr. Myers and some other PCa specialists: Leukine+Ketoconazole+estradiol patch (or similar) usually renders great PSA; responses even in Hrpca patients in 70-80% of those high risk type patients. Well it didn't work for me at all (wished it did), I tried Doug's new unique pioneering protocol (Lupron+Dexamethasone+estradiol patch) and my PSA; rose, however in 3 out of 5 patients trying this, it did show good results and lowered PSA;'s (fyi). So, I decided to try my own protocol concept (my onco-doc is open minded and I have been with him for 9 yrs. now).
I did get my PSA; lowered within a guaranteed rising scenario, with hrpca happening too. What was this current protocol, was it the expensive stuff??? No, matter of fact it is amongest the cheapest protocols you could try and my PSA; went from 41.15 to 35.05 within a few weeks and may go lower. I was having 10-20% increases within 2-4 weeks for the last 4 months (I can get PSA;'s done often between walkin testing for $15 option and my docs monthly visits). So here is what currently show good response: 100 mg casodex + 2-mg of DES (coumadin added for saftey reasons). Not very noticeable as to side effects, DES or any estrogenic drug can cancell alot of nasty side effects if you didn't know so. Will have to see how long this protocol may last and the expensive newer FDA drugs are something I am looking at, too. Funny how this protocol costing maybe $7/ week outperfomed the Leukine protocol which is expensive stuff ($70,000 per year). Casodex generic from Canada possible at under .70 per 50 mg pill, DES possible to get 1-mg for as low as $130 per year including delivery (lol). So, compare doing MDV3100 or Zytiga which would be endorsed currently for me as to this current concept??? ($7,350 & $4,350 per month for the prior mentioned drugs is the costs). I am hoping to witness more pioneering by patients and questioning the status quo, especially since money is all to motivating in our scenarios.
Well having done various protocols since Jan. of 2013 and failing on them for the most part, have come to find some usefulness in Zytiga. I tried to get into a clinical trial for XL-184 drug at U.of Mich., but they wanted me on Lupron first to prove it is failing, when it already did prior but not with them monitoring such. Anyway my PSA was doubling fast and I couldn't wait with a PSA; of 120, so I got my onco to give an Rx on Zytiga and U. of M. not returning my emails or calls prior (to see if Zytiga would exclude me?), well they got back to me with my return contact 3 days later and on Zytiga, so they said no trial for you (nice guys???). The good news is Zytiga not only lowering my PSA; levels each few weeks but it assist bone pains, I had some nasty back pains and they are resolved now for about 2 months using this drug.
Good thing my insurance is paying for this drug, friend of mine just got a financial assistance from Diplomat Pharmacies so as to get it about free. When it was FDA approved it cost around $4,350 per month and now it is free market competition with Xtandi apparently, so see the price is $7,000-7,500 now, so that is not pretty. I like the little side effects, not bad to handle. I use 5 mg Prednisone with this and not 10 mg., no problems known.
I did fail on Ketoconazole in low dose and high dose and in combo with Leukine and estradiol added, so wasn't sure Zytiga would be any better, well it is superior and should be based upon costs. So, far hanging in there pretty well up to this point.
So far I am responding to Zytiga, as to PSA;'s dropping continuously from 120 range to around 20 and may drop further, this is over almost 3 months time. I use .1 mg estrogen patch to assist with lessening side effects and help toward bone density (hopefully working for those). Now dealing with L-5 vertebrae with PCa and causing a lot of back pain, so getting Tomo therapy radiation of 10 treatments, I noticed pain level dropping after just 1 treatment and just finished 5th treatment today, so far no real issues know with the radiation. Will enjoy the no pain and more mobility from back movement/pain issues. So that is the update for now. I also monitor many blood markers, PAP, UnTx (urine test) etc., so as to see what is happening. It is not all perfection, but was up until about a year ago or less.
Well been on Zytiga since July 2013 and it lowered PSA; value from 130 range to 17.8 approx., current PSA; 20.15 or maybe higher now. I had left leg pain show up quickly and painfully, so went and got an xray and afterwards bone scan. The left femur involved a lot with mets, not fractured at this juncture but needed to be radiated for pain issues and hopefully kill PCa at the site. So, got 10 sessions on the Varian trilogy machine (IMRT) and that is finished as of today. The pain is lessening and said to probably be gone within another week, which should help my mobility as the pain is bad enough to effect your walking and moving around.
I have additional met started in a few places as seen on bone scan (w/contrast), so now I am at the juncture of pure hell to come. Will be looking into choices for some treatments, perhaps I can get onto Xofigo (Radium 223) the internal radiation protocol which can get to those bones and kill some PCa. Other drugs still exist I could try. Right now I am trying to build some bone density with estradiol patch and using D3 vitamin and may try Denosumab or other bone enhancer drug, want that femur to be good enough to avoid future fracture, cause I don't want surgery and a pin put in my leg. I have had the UnTx urine tests showing increases for 6 months or so, which was the red flag for bone breakdown and thus explains the femur involvement as the likely cause on those numbers. That's it for now, will update again later.
After having my left femur radiation for some pain but for a large field of PCa, towards future fracture but avoided that via radiation. Got Prolia (Denosumab) for bone assistance too now. That pain is gone and feel good. Then thereafter I have spinal pain again but this time T8-9-10 involved and somehow offshoot pain on right low back flank area that was very draining and extreme. I had no energy and felt like kidney blockage or something, painful and draining to where I couldn't do hardly anything and had to lay down often or take naps. Luckily the radiation to those areas did stop that pain a little while after radiations were over, this was the best. Then I still felt very tired on Xtandi but no pains going on, so decided to switch back to Zytiga June 2nd, and felt better immediately. I now have enough energy to do mega projects at home and in the pole barn and all. Even have some really decent stamina which was noon-existent 1-2 months ago. Psa has dropped, UnTx in normal range (urine test for bone breakdown), and other markers looking good. So I have a little remission going on, even though standing in the hot water of PCa with mets happening.
Will be looking at other options for when this stuff fails me, and considering less mainstream but newer concepts, for example Dr Myers just mentioned Zytiga plus Sprycel and in some patients total bone remission on mets (as far as they could tell from scans....still pretty good situation to think about).
Current situation is a huge set back, had back pains and went to E.R. for pain relief drugs if nothing else. Given hydocone (like percoset) and pain did go away, sent home, next night numbness shows up in right leg and toes, back to E.R. and day later MRI revealed pinched spinal canal (fluid press) and cancer cells pushing upon it, those were removed in surgery and bone procedure called Khyoplasty done at T9-T7 along with this. Post surgery did have feelings in toes and legs, had hope for recovery. A couple days later had likely hemorrhage in spinal area somewhere (had some weird twitches in my back at night), then found I had no feelings below belly button soon thereafter. It is almost certain I am facing paraplegic as my fate with PCa. I am on Xtandi now with PSA currently found at 86 and will see if it drops and if UnTx urine tests and others show any improvement on the battle on the PCa. I did receive my first low dose chemo treatment via an I.V. I had in my anyway, also they installed a port for future possible use (didn't use it the first time for chemo, they like the area to be 2-3 days post surgery to use it I guess). So for others pay a lot of attention to any bone pain areas and look to various scans to find and investigate, sometimes even X-ray may show something an MRI didn't, the newest scans that area non-FDA would wise if you can get them done somehow (travel-money), many have found lymph nodes or other things that never showed up in MRI's. What I had happen is probably uncommon as I have not heard of others dealing with anything like it, but remain vigilant in your fight.
Found blood in my stool and so got Nuke Scan done and nothing found as an issue there and now getting scheduled for colonoscopy checkout but 2 days of prep and waiting because of Thanksgiving holiday happening. So, food I can have is liquid broth, jello and frozen lemonade type things but will glady take anything to eat. Got a chest x-ray done to check for congestion issues, flem was one issue causing less breathing and did recently have low blood pressure that could be from the blood in stool issue as that cause. So just another thing to deal with right now in the on going saga of my Pca journey and now being paraplegic from the spinal surgery.
[Sadly, we were informed that Bob passed away on July 13, 2015 from advanced Prostate Cancer].