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Prostate Cancer Continuing Patient, Activist, Mentor Prostate Cancer Treatment over the Years


Charles (Chuck) Maack

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Charles (Chuck) Maack

January 2018

 I am currently 25+ years since my diagnosis November 1992, open surgical removal of my prostate gland December 1992, salvage radiation Spring of 1993, recurrence November 1996, and a variety of androgen deprivation therapy (ADT) medications from then to continued currently. 

 

Have been prescribed as ADT medications over the years with Lupron/leuprolide injections, Casodex or its generic bicalutamide, dutasteride/Avodart, brief Firmagon/degarelix, brief nilutamide/Nilandron, Zytiga/abiraterone acetate accompanied by prednisone or better yet dexamethasone, Metformin/Glucophage accompanied by Vitamin B12 (Vitamin B12 because Metformin can deplete this important Vitamin in the system for some – Vitamin B12 level should be tested to determine if medication required), cabergoline/Dostinex 0.25mg every Monday, Wednesday, and Friday (comes in 0.5mg tablet requiring breaking in two), and Xtandi/enzalutamide for prostate cancer control and management.   Also, for bone protection, earlier Fosamax/alendronate but then switched to Prolia/denosumab 60mg injection every 6-months when that medication became available.

 

Current continuing medications because of continuing, lurking prostate cancer: Lupron 6-month 45mg injection, Avodart 0.5 capsule one daily (though after four to six months daily use could be reduced to one capsule every three or even four days because of its long half-life – a money saver for those paying out-of-pocket), Xtandi 4-160mg capsules daily, Metformin 500mg ER (extended release) one tablet in morning, one in evening, accompanied by Vitamin B12 1500mcg one tablet daily, cabergoline 0.25mg (one-half of 0.5mg tablet) every Mon/Wed/Fri.  For bone protection: denosumab as Prolia 60mg subcutaneous injection every 6-months. 

 

Most recent PSA level 1.090ng/ml, so watching closely to hopefully manage below 2.0ng/ml as long as possible.

 

DISCLAIMER: Please recognize that I am not a Medical Doctor.  Rather, I do consider myself a medical detective. I have been an avid student researching and studying prostate cancer as a survivor and continuing patient since 1992. I have dedicated my retirement years to continued deep research and study in order to serve as an advocate for prostate cancer awareness, and, from an activist patient’s viewpoint, as a mentor to voluntarily help patients, caregivers, and others interested develop an understanding of this insidious men’s disease, its treatment options, and the treatment of the side effects that often accompany treatment.  There is absolutely no charge for my mentoring – I provide this free service as one who has been there and hoping to make their journey one with better understanding and knowledge than was available to me when I was diagnosed so many years ago.  IMPORTANTLY, readers of medical information I may provide are provided this “disclaimer” to make certain they understand that the comments or recommendations I make are not intended to be the procedure to blindly follow; rather, they are to be reviewed as MY OPINION, then used for further personal research, study, and subsequent discussion with the medical professional/physician providing their prostate cancer care.

Charles (Chuck) Maack - Prostate Cancer Patient/Activist/Mentor

(A mentor should be someone who offers courtesy, professionalism, respect, wisdom, knowledge, and support to help you achieve your goals; would that I succeed)

 

Always as close as the other end of your computer to help address any prostate cancer concerns.

 

"What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others."

 

“A good character is the best tombstone. Those who loved you will remember. Carve your name on hearts, not on marble.”

 

   “Sepius Exertus, Semper Paratus, Semper Fortis, Semper Fidelis, Fraters Infinitas”

“Often tested, Always Prepared, Always Courageous, Always Faithful, Brothers Forever"

 

 

Recipient 2008 Us TOO Intl., Inc., Prostate Education & Support Network 1st “Edward C. Kaps Hope Award”

Recipient 2012 Prostate Cancer Research Institute (PCRI) “Harry Pinchot Award”

Recipient 2016 Us TOO Intl., Inc. Certificate for 20 Years Dedication/Inspiration

 

 Published papers:

“A Wake Up Call To Men & The Women Who Care For Them” JCPCR-06-00189 Volume 6 issue 1 - 2016: http://tinyurl.com/3djfgve

“A Prostate Cancer Patient’s 24-Year (1992-2016) Continuing Journey from Diagnosis to Treatment to Recurrence to Mentoring” JCPCR-04—201604 Volume 4 issue 4 – 2016:  http://tinyurl.com/hcxuxv9

“Newly Diagnosed with Prostate Cancer? - A Mentor/Patient Discussion” May 23, 2017 Biomedical Journal of Scientific & Technical Research (BJSTR) http://biomedres.us/pdfs/BJSTR.MS.ID.000110.pdf

“Prostate Cancer Advocacy and Mentoring Support” – published November 22, 2017 in the journalHolistic Approaches in Oncotherapy” HAOT-17-OPN-0004 1.1 (2017): 14-15;  https://scientiaricerca.com/srhaot/pdf/SRHAOT-01-00003.pdf

 

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Patrick Turner
5 hours ago, Charles (Chuck) Maack said:

I am currently 25+ years since my diagnosis November 1992

I think we may say Chuck has had some good luck to be so alive and well despite having had so many treatments at drugs.

I'd have to say I'm having some luck too because before starting Zytiga last July. Psa was 7.2, and tests since then gave 3.8, 2.8 and then 2.0 a week ago. I was told median time for Zytiga to work was 10 months, my oncologist has seen some guys get 2 years.

I began taking Duodart which is tamulosin + dutersteride which Chuck said would make Zytiga ( abiraterone ) much more effective but I see no sign it is making any difference; my doc predicted I'd have Psa 2.2 for last test, I got 2.0.

Spare a thought for what happens to some who just don't get much luck. One man I know was diagnosed 2.5 years ago but is now on chemo because ADT and salvation radiation after his RP didn't work.

Be thankful to be alive at all.

Happy new year to all,

Patrick Turner

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Congratulations to both 25+ Heroes ! My admiration and tribute to Chuck for his unparalleled service as a Prostate Cancer Activist,Advocate, and an excellent Mentor. Immediately after my diagnosis in March 2015 for GS9 PCa - T2c No Mx @ 69 Yrs, I hit my PCa as hard as possible with the multimodal protocol RRP + IMRT + ADT2 ( Zoladex 10.8mg continuously for 2 years ). My PSA before RRP was 7.9 ng/ml and since April 2015 up to now has remained at 0.008ng/ml ( checked every 3 months ). Presently I continue with 1 capsule Avodart per day, Vitamin D3 4000IU per day, well balanced diet without red meat and dairy products, some good supplements recommended by Dr.Charles Myers ( oncologist ) and daily physical exercises for 1.5 hours. My other metabolic functions too are being monitored carefully and i have no other problems.  25+ is a good goal setting for me and thank you very much Chuck for your inspiring post and also Patrick for joining the Select Band of PCa survivors. 

May god bless you both to live as long as you wish!

Sisira

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Charles (Chuck) Maack

Hello Sisira,

 

If you have been taking dutasteride/Avodart daily for 4 to 6 months, it will have established itself in your system.  In so doing, you can then change to taking the 0.5mg capsule every other, or even every third day and it will remain just as effective as daily because of its long half-life.  This can be a consideration in cost saving if you don’t have health insurance coverage for oral medications.

 

The half-life of Avodart is 5 weeks, and it can take 4 to 6 months for the medication to be totally eliminated from the system once it is stopped.

 

See: http://www.drugs.com/pro/avodart.html  and scroll down to “Pharmacokinetics”

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Charles (Chuck) Maack
14 hours ago, Patrick Turner said:

I think we may say Chuck has had some good luck to be so alive and well despite having had so many treatments at drugs.

I'd have to say I'm having some luck too because before starting Zytiga last July. Psa was 7.2, and tests since then gave 3.8, 2.8 and then 2.0 a week ago. I was told median time for Zytiga to work was 10 months, my oncologist has seen some guys get 2 years.

I began taking Duodart which is tamulosin + dutersteride which Chuck said would make Zytiga ( abiraterone ) much more effective but I see no sign it is making any difference; my doc predicted I'd have Psa 2.2 for last test, I got 2.0.

Spare a thought for what happens to some who just don't get much luck. One man I know was diagnosed 2.5 years ago but is now on chemo because ADT and salvation radiation after his RP didn't work.

Be thankful to be alive at all.

Happy new year to all,

Patrick Turner

Patrick, since dexamethasone is one 0.5mg tablet taken once daily versus the two 5mg prednisone tablets taken daily with Zytiga, this may interest you and other readers:

 

Dexamethasone a Better Partner for Abiraterone Than Prednisolone

 

http://theoncologist.alphamedpress.org/content/20/5/e13.full

 

http://www.ncbi.nlm.nih.gov/pubmed/25314055

 

By the way, I was successful with Zytiga/abiraterone acetate for just a few months short of six years.

 

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Chuck,

This is a very good point on Avodart. I will follow your advice and take it on every third day. I pay for all consultations, treatments and drugs out of my own money like many others who can afford to do it. In my country ( Sri Lanka )government hospitals are full of patients and there are long waiting lists. But if you spend your money here, you have 100% freedom and your choice at any time subject to the available resources and expertise within the country. I also would like to ask why almost all ( known to me in US) who take Avodart, take it daily so long as they use it? Don't they know about its half life? By the way in which country are you living at present?

Thank you for writing back to me.

Best regards

Sisira

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Charles (Chuck) Maack

Exactly, Sisira, many have no idea of the dutasteride/Avodart half-life or that the medication, once established in the system with daily use for 4 to 6 months, can be reduced to even up to one every five days, but I prefer only recommending no longer than every three days.  I learned this several years back at one of the Prostate Cancer Research Institute (PCRI) Annual Conferences on Prostate Cancer in Los Angeles when Dr. Mark Moyad (now a regular moderator at every annual conference) brought this to the attention of everyone attending.  Got home and researched and have recommended it to patients where Avodart is included in their Androgen Deprivation Therapy (ADT).  Similarly, in my research, when I came across  rather than having to take Prednisone 5mg twice daily if prescribed Zytiga/abiraterone acetate the Prednisone could be replaced with Dexamethasone just one 0.5mg tablet daily and be just as effective; thus, another thing I pass on when I learn of a patient being prescribed Zytiga.    As to my whereabouts - I live in "The Heartland of America" in the City of Wichita located in the Southcentral area of the State of Kansas.  Look on a map of the United States along Interstate 35 just 50 miles north of the Kansas border with Oklahoma. 

You can learn all about me with a visit to my website www.theprostateadvocate.com 

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Charles (Chuck) Maack

Further, on my website is my email address so you can contact me directly should you wish.

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Patrick Turner

I hope I get more than the median time

On ‎1‎/‎21‎/‎2018 at 3:15 AM, Charles (Chuck) Maack said:

Patrick, since dexamethasone is one 0.5mg tablet taken once daily versus the two 5mg prednisone tablets taken daily with Zytiga, this may interest you and other readers:

I'll do the reading necessary about dexa-m.

So far, the Zytiga plus 2 x 5mg pred pills work, but its uncertain as to how long I get with Zytiga because 10 months is average time for effectiveness. There's been no increased rate of Psa reduction after 2 months on daily Duodart which has same Tamulosin as I was taking, but with added dutersteride, and I need the Tamulosin to urinate well. If I miss just a day, flow slows right down.

Doctor said Psa will level out at about 2.0, then rise. Last Psa 3 weeks ago was 2.0. Usually my Psa has never just stayed steady.

And I know guys who went from diagnosis with Gleason 6 and Psa just over 5.0 to chemo within 2.5 years. RP + IMRT+ADT had almost no effect. And chemo just delays the inevitable, like Lu117, good for median life extension of 13 months. Some fellows will do much better, but the strength of the cancer varies from man to man, and I doubt few of us will get 25 years after diagnosis. I am one of those horrible realists who does not let himself run away into a fantasy land called Hopia , but if I get 5 years on Zytiga, it would be one hell of a wondrous thing, probably due to luck rather than any other factor.

 

Meanwhile, a professor Yi here is working at ANU to get immune therapy to work. Maybe it all comes to nothing, but it is wonderful that some young fellows are trying for a cure to common cancers.  

It is because they earn a good living, and their minds are full of wonderment and love for what they do. One old professor at ANU about 60 tried to make a cancer vaccine, usable to prevent it, or to cure it, but nothing came, and Parkinson's got him.

 

Side effects of Zytiga + pred seemed to be low blood pressure due to low sodium levels. Seems as though Zytiga makes you piss out the Na and so I added more salt to food and it seems to have worked fairly well, and my cycling average speed went up after it reduced a bit.

So, so far, so good, but I could well be dead in 3 years. 95% of men diagnosed with Pca mets in bones are dead within 5 years.

Some die sooner, and hardly any die later..... terrible to contemplate, so don't bother to contemplate much about what I know or don't know, I like to keep creative and cycle a bit instead.

Keep well, but Aunty Destinee may have other ideas,

Patrick Turner. 

 

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Charles (Chuck) Maack

Without my going back through your posts on this forum, has your prostate gland been surgically removed?  Did you then also have external beam radiation?  Reason I ask is why your urethra - or where your urethra connects to your bladder - can close up on you without tamsulosin/Flomax.  Understood when a gland is present and is enlarged thus can be pressing on the urethra to cause minimal urine flow.  Understood if with surgical removal the physician may not have done a very good job with the re-connection of the urethra to the bladder neck (anastomosis).  Understood if salvage radiation caused damage to that connection.  But all these sources of the problem should be able to be corrected.  Certainly don't want to have to move to having to catheterize to get urine flow nor over-correct to cause incontinence.  And possibly tamsulosin is a better remedy than messing with the urethra/bladder connection and causing incontinence as long as the medication continues to serve you well.  Regarding Avodart/dutasteride: it does take a few months for this medication to fully "kick-in" so may not show immediate PSA reduction. 

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Charles (Chuck) Maack

Me again Patrick

I was going over info in my folders I maintain regarding Avodart/dutasteride since I recalled an exchange between renowned Medical Oncologist Charles E. "Snuffy" Myers, a specialist in the treatment of advanced prostate cancer, and I some years back.  Did find the following that though not of significant worry unless you were experiencing heart failure, does explain the importance of close attention by your physician if otherwise monitoring heart issues when combining Avodart/dutasteride with Fosamax/tamsulosin:

 

My question:

 

The recently published results of a large clinical trial

(REDUCE), aimed at evaluating Avodart's effectiveness in

reducing the incidence of prostate cancer, found a 23% risk

reduction over a four-year period, a result consistent with

those from earlier studies (NEJM 4/1/2010). The new study

also found, however, that those taking Avodart had a higher

incidence of cardiac failure than those in the placebo group

(0.7% vs 0.3%), a result that I believe is a new finding. Do

you consider the negative cardiac results significant and do

they alter your views about Avodart's use as a preventive

medication or as a treatment for prostate cancer?

 

Dr. Myers reply:

 

“I think this is a very important study on many levels.

Proscar and Avodart both work by blocking the conversion of

testosterone to dihydrotestosterone. As water backs up behind

a dam, serum testosterone levels will typically increase as the

serum dihydrotestosterone levels fall. In prostate cancer cells,

dihydrotestosterone is much more powerful at stimulating

growth than testosterone. Additionally, dihydrotestosterone

specifically stimulates blood

flow to both normal prostate tissues and

prostate cancer, while testosterone is not very

effective at this. We have long had population

studies that have shown the risk of prostate

cancer is related to the serum dihydrotestosterone

and not to the serum testosterone. This

led to the hypothesis that dihydrotestosterone

was a major factor fueling the appearance and

then progression of prostate cancer. An earlier

large randomized controlled trial showed that

Proscar reduced the risk of prostate cancer,

confirming the role of dihydrotestosterone in

the development of prostate cancer. Now,

Avodart has also been shown to significantly

reduce the risk of prostate cancer. Taken

together, these two large randomized controlled

trials prove beyond all reasonable doubt that

dihydrotestosterone is one of the causes of

prostate cancer. Further, because both drugs

increase serum testosterone by 20-50%, these

studies show that testosterone itself is not a

major factor in the progression of prostate cancer.

I cannot stress how fundamentally important

this is. I do not think most physicians caring for

men with prostate cancer have fully thought

through the implications of these findings. One

implication is that as long as the testosterone

receptor is present and linked to cancer growth,

the presence of dihydrotestosterone has the

potential to continue to fuel the progression of

the cancer. The obvious question now is

whether it might not be better to always suppress

dihydrotestosterone.

As indicated in your question, the REDUCE

trial did find an increased risk of heart failure in

men in the Avodart arm compared with placebo.

There were 6,729 patients randomized between

the two arms. In the placebo arm, 0.4% developed

congestive heart failure compared with

0.7% in the Avodart arm. This calculates out to

13 cases in the placebo group and 23 cases in

the Avodart arm. So, the additional risk of heart

failure in the Avodart arm is still quite low.

Dr. Andriole, the author of the paper, has

speculated that this was linked to coadministration

of drugs like Flomax. Flomax and related

drugs, like Hytrin and Cardura, work by blocking

epinephrine at what are called alpha 1-

adrenergic receptors. This class of drugs has

already been reported to exacerbate heart failure

and so Dr. Andriole's suggestion is very

reasonable. From his comments, I gather they

do not specifically know if the patients who

developed heart failure on Avodart were also

taking an alpha 1 blocker. So, at present, this

remains a speculation.

How should we respond to this? Well, first I

think that until this is clarified, Avodart should

be given to men in congestive heart failure only

if the patient is carefully monitored and only if

the clinical benefit warrants the use of Avodart.

The combined administration of Flomax and

related drugs with Avodart should similarly be

done with caution in general and not at all in

patients in heart failure.”

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Charles (Chuck) Maack

Ooops....I meant "Flomax" where I used the word "Fosamax" in my lead in, above;  big difference.  So, please read that I meant Flomax (which you are taking) rather than the Fosamax.  Well, as a little excuse, I did type Fosamax/tamsulosin, so had it half right :-( 

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Patrick Turner
7 hours ago, Charles (Chuck) Maack said:

has your prostate gland been surgically removed? 

Hi Chuck, No, there was too much cancer outside the capsule. I had Gleason 9, 9 positive samples, aggressive cells, young man's cancer, real bad, etc. Irish luck if ever there was. Psa had only gone to 6 at time of biopsy. There lies the problem here in the medical system where they wait until Psa reaches 5.0 before doing anything investigative. Bastards. 5.0 is 5 times normal. If I'd been in UK, Psa is investigated at Psa 3.0, and I was 3.0 about 2005, some 4 years before 2009 when I was diagnosed. I bet I had a Gleason 6 in 2005, and an RP would have stopped it and most likely stopped it spreading to many places as it did. the ADT + standard 70Grey EBRT tickled my cancer pink and it slowly kept growing while ADT continued. Its what it does, on its way to kill a man. So I missed out on the only opportunity I had to halt the problem, and the cost to taxpayers who fund medicare would now total about aud $200,000, and $15,000 of my own dough. Zytiga costs Govt $43,000 per year. All because some stupid bloody idiot medico decided to have Psa 5.0 instead of 3.0 as the threshold for biopsy. BTW, the biopsy was The Worst experience of doctors at work. It was on a Saturday morning and I'd been promised an anesthetic, but when I arrived, no anesthetic, and this doc shoves this gun up me arse to fire needles so fast that the needle collects a sample of tissue in the needle tube. He wanted 12 samples, he got nine because I could not tolerate the pain, and had he insisted on 12, I think I probably force fed him a knuckle sandwich, and been prepared to argue about it publically as possible in a court. There was no need for 12 samples, all 9 were positive, I was doomed, and I was never told the standard EBRT would do SFA to halt a Gleason 9 tumour. Gleason 9 tumors have 10% success rate. I should have had brachytherapy, which was or still is the Rolls Royce of RT.

 

The same doc who did biopsy attempted an open surgery RP 4 months after the biopsy. He was then doing 100 ops a year, and some robotically. Not I nice wait. Once opened, doc could not proceed. He said later I was one of the 1% who could not have surgery, but I thought that was also BS and methinks there are a lot more. But no local spread was found, which simply meant the spread mets were too small to see under a microscope. I got lots of mets now. 

 

While recovering in ward after the unsuccessful op, and not feeling too joyful, this handsome fool intern doc sat at end of bed and tells me immediate ADT and RT in 8 months time would cure me, and I gazed at this idiot telling me thus utter BS and I thought it would be a waste of time to tell him that what he was saying was like telling him pigs can fly. So I just STFU, and waited for him to just piss off. The nurses were quite horrible, and when I attempted to get out of bed at day 2 after op, I collapsed to floor with agonizing pain that lasted 4 minutes as all muscles in gut went into some kind of spasm. I slowly stopped yelling my head off, and crept back into bed without assistance. Nobody came near me for an hour. The nurse on duty was a pure C, and walked away to let me suffer alone. Not once did anyone assist me. So as soon as I could get out of bed on day 3, I asked to leave, not game to complain because they all would have denied it happened. They let me go home 3 days before I should have, but I was very fit and strong then, and I managed OK once I got out of the bloody hospital.

I have had mixed quality of nursing at Canberra Hospital. Very good in day surgery wards where its very busy, and nurses are 45 and don't mind the Real Work. The ethics were atrocious in recovery wards where nurses have the most easy work of all in a hospital. I spent 3 weeks at Calvary Hospital and the ethics there in staff was quite different.

I've been in a couple of private hospitals where ethics were also poor, especially outside normal working hours when the worst sorts of ppl do the "nursing" as shift workers. 

The fact is, a large percentage of the workforce is personally corrupt, they go to work to get the 60k a year, but avoid the work if they can.

And I am talking about 35 yo women who should act better. 

 

I was taking Flomax, which is just tamulosin. The Duodart I now take daily is same thing but with added dutersteride.

Because my PG was not removed, it may be assumed there was some amount of normal non cancerous cells remaining and which may still remain so that after beginning ADT, the cancer cells plus normal cells were all slowed down to comatose zombie state. But the lowest nadir for Psa was 0.08. When 2years passed after beginning ADT, I paused the ADT, and in 6 months my sexual function fully returned, and average speed on bike went back up 5kph and I was sure hot on the bike. But Psa went from 0.08 to 8.0 and I was back to square 1, and what the doc said about a cure Was Bullshit. I wrote to urologist to tell him his treatments had all failed, and could I please be transferred to an oncologist "to see me out". The oncologist sure didn't like my letter, sat there, po faced, not admitting anything, then grudgingly wrote the referral to oncologist, because cancer " had a recurrence". Nothing had re-occurred;  cancer just continued onwards. The oncologist told me what the others would not, and began with the statement "there is no cure..." and I had no reason to disagree; I had already read so many posts by blokes in chat groups, or by their relatives, who said their father was too ill to type, and that every medicine in the cupboard had been tried.........

 

I think I shall go down before immune therapy can succeed to do what it is supposed to, destroy rogue cancer cells which presently are able to fool our immune system which other wise works just fine, and truth be known it probably assists the cancer to survive while under attack by ADT and Zytiga and chemo LU117 and whatever else medicos shoot at the cancer. 

 

I did have a nice little bike ride on this hot humid morning of summer, and overtook many ppl slowed by the heat.

At 9am the ppl on bikes are all retired folks, and had I ventured out at 7am I would have been overtaken by the ride-to-work maniacs of 25 who are practising to win the Tour De France. When one passes me on a hill, I might say "what took you so long?" and we all have a chuckle. Canberra has a large cycling population but at 8am only 2% of the ppl going to work are on bikes. Much is said about keeping fit, but so little is actually done about it. 

Try to forgive Aunty Destinee, who is so disagreeable, and you'll try, I know, but, its pointless, :-) 

Patrick Turner. 

 

 

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Charles (Chuck) Maack

Not there to give you the "finger" - meaning digital rectal exam :-) - to see if the feel of the continued presence of your prostate gland is enlarged, thus putting pressure on your urethra and the subsequent slow urination stream.  However, dutasteride/Avodart was originally designed for reducing the size of an enlarged prostate gland before it was also found that the medication reduced the presence of dihydrotestosterone in the prostate gland and in the system thus serving to slow prostate cancer cell growth and proliferation (separating/multiplying).  Hopefully, if your prostate gland is enlarged and causing the slow urination stream, Avodart will reduce that enlargement, take pressure off your urethra, and you may experience reasonable urine/pee/piss flow again. :-) 

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