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Irwin ( Doug ) Sorensen

I am T4 going for radiotherapy soon. Like to hear other stories like mine. PSA is 35.

Thank you.

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PeterH

Hi Doug,

 

After surgery failed, I had daily radiation for 7 weeks with very beneficial results. But what I know now, and they didn't tell me then, includes:

• You can do a lot yourself that will really help.

• Supplements of MCT (medium chain triglycerides) oil and ketone esters from your health food store will help greatly.

• These will help to get you into ketosis (having ketones in your system) which is a REALLY good idea when you have the radiation as the ketones help to protect your healthy cells while making tumor cells more susceptible. 

• You can further help to achieve this by fasting for a minimum 14 hours before each treatment (the longer the better).

 

Also, under NO circumstances, should you take anti-oxidants during treatment. This is because, one of the main ways in which radiation works is by generating free radicals in the vicinity of the tumor. Tumor cells are more susceptible to attack from free radicals than is healthy tissue. So the last thing you want to be doing is mopping up the free radicals that are generated by the radiation—we just hope that they are not doing tooooooo much damage elsewhere!

 

Another way to help is with exercise. May 2016, the ABC had a Catalyst program that is well worth watching.

http://www.abc.net.au/catalyst/stories/4459555.htm

Possibly, even more to the point is this paper by the Dr Newton who is interviewed on the program.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5961562/

Apart from a lot of big words needing a tame GP or oncologist to decipher , it details the exercise regime used so you could print it out and take it to your local gym and setup a routine with a personal trainer.

 

If you'd like any more info feel free to contact me privately.

 

Peter 

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Patrick Turner
1 hour ago, Irwin ( Doug ) Sorensen said:

Like to hear other stories like mine.

My now fully updated story is at http://www.turneraudio.com.au/Patrick-other-concerns.html

I was a T3, Gleason 9. An operation was attempted but doc found I had too much local cancer so abandoned the op, and he sewed me up without removing PG. I was then was given ADT and had standard EBRT after 6 months.

I later found that a Gleason 9 is rarely ever successfully treated by standard EBRT, and what would have been better was brachy therapy, ie, radioactive implants, and maybe with additional EBRT. Afaik, BT is available at private hospitals and is probably very expensive. 

Gleason 9 tumors have often begun to metastasise so there may be thousands of mets too small to see in any scan at time of primary PG treatments. These mets will cause trouble later. But killing Pca in and around PG may prevent local spread that might kill before the mets do. 

Side effects of EBRT are not enjoyable. IMRT using Calypso method allows a marginally higher dose of Xrays to be applied without damage to bladder or bowels, but it is likely to have little greater effect on Pca progress. Some Pca cells are radiation resistant. So they survive, but grow...….

I found no truth supported claims that treatment outside mainstream available therapy or that special dieting or fasting worked. By all means, adopt a healthy lifestyle like so many diagnosed with cancer. IMHO, it will let you feel good while the cancer attack continues.....

Patrick Turner. 

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stevecavill

Hi Doug

i was diagnosed T4N0M1 in Dec 2012. Gleason 9, psa 20. 

 

Started ADT immediately. i had EBRT in November 2013. (20ish doses 60 gray from memory). I also had stereotactic radiation on two occasions to spine mets at later times 

 

i found the main side effect of radiation was tiredness. I didn’t do anything special regards diet.  

 

Its probably worth asking about hydrogel spacer.  This is a gel

that is injected between rectum and prostate and helps protect rectum from radiation damage. 

 

Have you had a PSMA scan to locate the metastases?

 

if you don’t already have it, get hold of a copy of the radiation booklet from cancer council. 

 

happy  to answer specific questions 

 

Steve 

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Patrick Turner
1 hour ago, stevecavill said:

Have you had a PSMA scan to locate the metastases?

AFAIK, the first PsMa Ga68 PET+CT scans came to Oz in about 2015, at Bridge Rd, close to Epworth where the first stereotactic IMRT using Calypso appeared.

I had No 1 PsMa scan in mid 2016, I had lots of Pca in PG, plus two very small mets in upper lymph nodes, ADT was failing, Psa 5.6. These scans were the most sensitive in Oz at that time, and they upset many men who thought they had no mets but in fact had many.

I had my second "salvation" IMRT to increase PG RT by 31Gy to total 101Gy.  Anyway, I had the hydrogel pad that was about 10cc, ie, a disc of about 3cm dia and maybe 1cm thick to keep the rectum away from the PG.

some weeks after getting home from end of the IMRT I had a very bad case of radiation colitis where I farted excessively, and sprayed diahrea for 2 months. At least I did not get a fistula, ie, hole in rectum wall or much burning, but now, all radiation effects seemed to have gone, except that when I feel the urge to go, I must get to a toilet or I have a SIPE, ( shit in pants event ).

I also had 45Gy to each of the mets. I have had 3 subsequent PsMa scans and all have showed increasing number of mets including many in bones, and all these may have begun before diagnosis but were just not big enough to be seen by any scan. Never assume you have no mets.

After the Casodex and Zytiga failed to keep Psa low or reduce number of mets, I had chemo which seems to have failed, and no I am on Lu177 which is SYSTEMIC and targeted radiation. Usually this is not given as primary, ie, initial main treatment. To understand Lu177, see Theranostics Australia website for explanations plus elsewhere.

So far, side effects after 2 x LU177 have been slight, although I have a pain in R hip that could be from Pca met I know is there, so I am staying off bicycle until I know more. It is possible I have a failing hip joint, I needed 2 new knees in 2017.  The RT of past and Lu177 may have aggravated the joint to cause pain forever and no more cycling. I have ZERO idea if the Lu177 is going to lengthen my lifetime. It is possible Lu177 does not work on microscopic mets. Psa before beginning Lu177 was 25. But my Psa was only 6.3 at diagnosis at 62 in 2009, and yet I had very "high risk" Gleason 9, 9/9 positive biopsy samples. So afaik, my Pca produces a low Psa for a high amount of tumour size / volume. And Psa now is about 20, but it could be equivalent to a much higher Psa in some other man.

Men are urged to get examined with Psa > 5.0, but because my very big + bad tumour made Psa only 5 when tests were booked, I was diagnosed TOO LATE, and I should have been given biopsy in 2004 when I bet they might have found a Gleason5 when Psa was only 3. Thus prevention of Pca in Oz is very poor, so I have cost Medicare maybe $200,000 so far, and my own expenses might be $70,000. 

 

There is a reason why most men get Lu177 when many other things have failed, and not before, but I don't know the exact reasons. But ADT, and then with added Casodex, Zytiga or Xtandi will all eventually fail; the Pca will usually refuse to be suppressed and doctors cannot continue to "sweep it under the carpet." 

A latest trial is to start with Lu177 plus added Keytruda, an immune therapy drug that works against much melanoma. I don't know the criteria for inclusion to this Peter Mac trial, but you could find out. Trials are free, 4 x Lu177 injects plus a couple of PsMa scans to evaluate progress are $40,000, and no Medicare rebate. 

A cousin of mine got brachytherapy, but I have no idea how he fared because he also got bad dementia, like his brother, so I lost all contact.

But despite the RT I have had, I have no urinary incontinence. All sexual function has been completely exterminated, and sponge tissue in Rodger that allows an erection has become full of fibroids so Rodger resembles a brass garden tap, does get hard, but points to ground with curve, and with no feeling except nuisance value, on every other morning after getting up for the 4th or 5th time during a sleep to have a pee.

The part of urethra within the PG can become constricted due the cooking it gets from RT, and PG tends to swell up when lying down, and during sleep. Urination is slow to begin, takes forever, and it is difficult to fully empty bladder. I am taking daily Tamulosin tablet to stop the swelling, and so I can pee quickly, return to bed for 2 more hours sleep. 

I had bleeding from rectum begin about 18 mths after first EBRT, 2/3 of EBRT patients get it, It lasted about a year, and I had a colonoscopy in that time because I took part in national screening program for bowel cancer. So sure I had rectal blood, but doc thought I had piles; I was cycling constant average of 220km a week, but no piles, and doc could not find where blood came from, so it seemed to be a tiny fragile radiation affected rectal blood vessel which stretched and bled only when solids passed by. But I have knew a man who went on a long cruise with missus after his treatment and it was somewhat ruined by his bleeding 1/2 a cup of blood every other day.

RT damages the blood vessels ability to stretch and makes them very slow to stop bleeding once they are damaged by over stretching or cutting. This is a side effect of RT; healthy tissues become untouchable, doctors don't like operating on RT affected tissues because bleeding may be impossible to stop. 

Many men have and open or robotic RP, and the Pca continues onwards afterwards, although reduced in volume. Very often there cannot be any more surgery, so EBRT is used to radiate the regions where the remaining Pca is located, and very often that also fails to hold it back.

 

One man here with low Gleason score and low Psa rejected offers for RP, RT or chemo when diagnosed, so he opted for removal of bladder, PG, and urethra was terminated well below PG. Then doc joined his two ureters from kidneys to an opening in side of abdomen for later use of plastic pee bag. I guess he must have got that from a private hospital, and paid heavily for it, but may have been well covered by insurance. Anyway, years later he had become quite used to a pee bag, and joined the other 45,000 ppl who had similar pee bags. There's a support group that has formed. He avoided ADT so he has full testosterone. This means better bone density and general manly health. Bye Bye to Rodger, no problem. His marriage survived. The absence of Pca and undetectable Psa while having normal testosterone for years seems to mean the surgery worked, but that's very drastic surgery. But plenty of soldiers who stepped in IED or mine in Afghanistan have had all their favourite parts blown away, and maybe one leg or both. Methinks that's a far worse outcome than any man who gets Pca at a late age.

 

My urination has been good during day. Right now, I am not peeing more often than I did at 40, and am now passing over 500ml, twice or more than I have in past after treatments, and because the reduced PG size is not triggering bladder to want to empty so often. I suspect the failed chemo may not have totally failed, ie, although bone mets increased, soft tissue mets reduced. But last PsMa scan before Lu177 showed less Pca in PG, hence less swelling of PG and better pee function. The Lu177 is renowned for reducing soft tissue mets to being non detectable with PsMa scans, and it might take years before they grow large enough to see in future. But Pca mets mutate, and the future Pca may not generate PsMa so the scan shows no mets, but they may be there, and dangerous, and they will appear in CT scans if they get big enough and then only chemo is ever going to work, if it ever does. If the Pca cannot be seen in PsMa scans, but is seen in other type scans, say CT, then the Lu177 will not work. There is an increasing number of men getting Lu177 since it became available in Oz about 3 years ago. Hundreds now get treated each year by Theranostics Australia, and the chief doc must have a good idea by now about success rates, ie, 70% of men get Psa lowering, tumour reduction, and mean extra lifetime of 14mths; that means you might get 5 years, or 2 months, its fairly unpredictable.  

But there is no transparent register for all patients to inspect. Docs do not allow it. Medical intervention outcomes are not certain, there is no warranty given.  

 

I have an uncertain future, but everyone over 60 is subject to uncertainty. I must die sometime, I don't know when, Pca will probably cause it, but I am never depressed. Sad, maybe, for awhile, but sadness is a necessary part of life because it cannot be always happy. Other ppl's mental  reaction to cancer may be entirely different.

I hope everyone here gets a good response from the treatments now available.

Patrick Turner.  

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Charles (Chuck) Maack

ADVANCED OR METASTATIC PROSTATE CANCER AT INITIAL DIAGNOSIS

 

If you have been initially diagnosed with known metastatic prostate cancer, early treatment with androgen deprivation therapy/ADT that would include at least either an LHRH agonist (with Lupron/leuprolide most often prescribed) or the GnRH antagonist Firmagon/degarelix, plus an antiandrogen with bicalutamide, generic of Casodex most often prescribed, then early-on adding chemotherapy has been found to extend overall survival.  More recent ADT medications such as Zytiga/abiraterone acetate that is consider somewhat a “super” medication to shut down the production of testosterone by the three production sources of testicular, adrenal glands, and that cancer cells can produce within themselves, could be considered if one’s metastasis is found to be spread and aggressive.  Another more recent medication considered to be a “super” antiandrogen, Xtandi/enzalutamide, could also be considered to replace bicalutamide/Casodex – both of these “super” medications to be considered separately if the earlier ADT medications are not showing effective cancer cell control. 

 

Supportive references:

 

Adding Chemotherapy to Hormone Therapy Extends Overall Survival in Metastatic Prostate Cancer

https://tinyurl.com/hvgsp8q

 

ADT plus Chemotherapy, and even the addition of Radiation if not already radiated explained here:  http://tinyurl.com/j8yavck

 

Radiation plus Androgen Deprivation explained here:

http://jco.ascopubs.org/content/early/2015/01/05/JCO.2014.57.2743.abstract

 

Second-Line Chemotherapy vs an Androgen Receptor–Targeted Agent for Metastatic Castration-Resistant Prostate Cancer https://tinyurl.com/y9bwklem

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John

This is My History

 

 

SUMMARY OF PROSTATE CANCER TREATMENT        
        
John Scadeng         
D.O.B  16/02/1946        
        
        
DATE    TREATMENT / TESTS    COUNTRY
        
June 2008    Initial contact with Urologist Bone Scans and Biopsy carried out.    Australia
    Gleason score 4+4=8   see letter July 4th 2008    
        
27 October 2008    Radiation started 74 Gray, 35 Treatments     Australia
17 December 2008    Last Dose Radiation    Australia
18 December 2008    Visit urologist see letter 18th December 2008    Australia
    ----------------------------------------------------------    
19/03/2009    Ist PSA Result after Radiation  0.1 ug/L    Vanuatu / Aus Lab
01/10/2009    2nd PSA Result after Radiation  0.03 ug/L    Vanuatu / Aus Lab
    ---------------------------------------------------------    
30/04/2010    3rd PSA Result after Radiation  0..03 ug/L    Vanuatu / Aus Lab
10/09/2010    4th PSA Result after Radiation  0.41g/L    Vanuatu / Aus Lab
    --------------------------------------------------------    
4/02/2011    5th PSA Result after Radiation 1.89ug/L    Vanuatu / Aus Lab
22/09/2011    6th PSA Result after Radiation 6.57 ug/L    Vanuatu / Aus Lab
    ---------------------------------------------------------    
15th November 2011    Urologist visit again due to last high reading above    Australia
    she took another PSA which had doubled since reading 22/09/11    
    Gave me a choice Expensive Medication twice a year or Orchidectomy    
22 November 2011    Had BiLateral Orchidectomy    Australia
    ------------------------------------------------------    
22nd March 2012    1st PSA after Orchidectomy 0.05 ug/L    Vanuatu / Aus Lab
1st August 2012    2nd PSA after Orchidectomy 0.03 ug/L    Vanuatu / Aus Lab
7th November 2012    3nd PSA after Orchidectomy 0.03 ug/L    Vanuatu / Aus Lab
11th April 2013    4th PSA after Orchidectomy 0.03 ug/L    Vanuatu / Aus Lab
18th July 2013    5th PSA after Orchidectomy <0.03ug/L    Australia / Aus Lab
November 2013    6th PSA after Orchidectomy <0.03ug/L    Australia / Aus Lab
march 2014    7th PSA after Orchidectomy <0.03ug/L    Australia / Aus Lab
November2014    8th PSA after Orchidectomy <0.03ug/L    Australia / Aus Lab
March2015    9th PSA after Orchidectomy <0.03ug/L    Australia / Aus Lab
March2016    10th PSA after Orchidectomy <0.03ug/L    Australia / Aus Lab
March2017    11th PSA after Orchidectomy <0.03ug/L    Australia / Aus Lab
DATE    TREATMENT / TESTS    COUNTRY
        
June 2008    Initial contact with Urologist Bone Scans and Biopsy carried out.    Australia
    Gleason score 4+4=8   see letter July 4th 2008    
        
27 October 2008    Radiation started 74 Gray, 35 Treatments     Australia
17 December 2008    Last Dose Radiation    Australia
18 December 2008    Visit urologist see letter 18th December 2008    Australia
    ----------------------------------------------------------    
19/03/2009    Ist PSA Result after Radiation  0.1 ug/L    Vanuatu / Aus Lab
01/10/2009    2nd PSA Result after Radiation  0.03 ug/L    Vanuatu / Aus Lab
    ---------------------------------------------------------    
30/04/2010    3rd PSA Result after Radiation  0..03 ug/L    Vanuatu / Aus Lab
10/09/2010    4th PSA Result after Radiation  0.41g/L    Vanuatu / Aus Lab
    --------------------------------------------------------    
4/02/2011    5th PSA Result after Radiation 1.89ug/L    Vanuatu / Aus Lab
22/09/2011    6th PSA Result after Radiation 6.57 ug/L    Vanuatu / Aus Lab
    ---------------------------------------------------------    
15th November 2011    Urologist visit again due to last high reading above    Australia
    she took another PSA which had doubled since reading 22/09/11    
    Gave me a choice Expensive Medication twice a year or Orchidectomy    
22 November 2011    Had BiLateral Orchidectomy    Australia
    ------------------------------------------------------    
22nd March 2012    1st PSA after Orchidectomy 0.05 ug/L    Vanuatu / Aus Lab
1st August 2012    2nd PSA after Orchidectomy 0.03 ug/L    Vanuatu / Aus Lab
7th November 2012    3nd PSA after Orchidectomy 0.03 ug/L    Vanuatu / Aus Lab
11th April 2013    4th PSA after Orchidectomy 0.03 ug/L    Vanuatu / Aus Lab
18th July 2013    5th PSA after Orchidectomy <0.03ug/L    Australia / Aus Lab
November 2013    6th PSA after Orchidectomy <0.03ug/L    Australia / Aus Lab
march 2014    7th PSA after Orchidectomy <0.03ug/L    Australia / Aus Lab
November2014    8th PSA after Orchidectomy <0.03ug/L    Australia / Aus Lab
March2015    9th PSA after Orchidectomy <0.03ug/L    Australia / Aus Lab
March2016    10th PSA after Orchidectomy <0.03ug/L    Australia / Aus Lab
March2017    11th PSA after Orchidectomy <0.03ug/L    Australia / Aus Lab

March 2018   12th PSA after Orchidectomy <0.03ug/L    Australia / Aus Lab

March 2019

 

I am lucky i have not reach the advance prostate catagory.

I have the exact same left over problems from radiation as Patrick, Feel the urge for a Poo need to get to a toilet asap,

or accident, and peeing at night is very difficult, i feel if i need to go , i walk around for a bit and then sit down and wait, it comes out in waves, 

during the day no problem. I stop drinking  fluids at nine oclock at night and this seems to help with not to many visits to the toilet.

My problem with medication was, and is that i am not an Australian, and do not live in Australia but do come in for my medical treatment, but have no Health insurance, so the anti testosterone making medication (sorry androgendeprivation I think) was very expensive twice a year plus air fares, was a big factor in deciding to have a  BiLateral Orchidectomy. Having four daughters and now 15 Grandkids i didnt need to procreate anymore. 

  It certainly seems to have made a difference to my PSA results. I am not sure what my Testerone level is at the moment as there is no tests in this country ( vanuatu). This of course has halted any sex life, but it also stops any sexual feeling whatsoever. Its quite true when they say the balls take over the brain, without them Your brain,couldnt care less about sex. Patrick, you would not have any problem with "Roger" he would never raise his head again.  

  I am sorry If i have been a bit light hearted in my writings, Advance Prostate Cancer is a very serious subject. and it gets worse because quite often it can be controlled, but there are so many paths  that one can follow, so many different medications with fancy names, which one to choose, which type of doctor to see. Thats why this forum is a Great way to find a Path, with so many different Stories, one possible may ring a bell with you, as it has done for me today. 

Thanks

 

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Patrick Turner

Hi John, the outcomes from out treatments have similarities, and I would have preferred orchiectomy but my drug cost was low with Medicare. But you are getting very good Psa suppression with the orchiectomy, with Psa 0.03 now holding constant. My Psa just kept rising, and I needed Cosadex, then Zytiga, and I had chemo, and now I am on Lu177, with many mets in bones. Docs told me my Pca was aggressive. It sure is. 

You say you have trouble peeing at night. I was also having trouble, but I began taking 1 Tamulosin pill each night after dinner and then its stops the PG swelling when lying down and squeezing the urethra tight to restrict the flow. So although I wake up 4 times a night for last 8 years, its OK, I don't spend long emptying out.

There are generic pills, maybe Flomax, and I don't if there are side effects. 

It won't hurt to try these pills but you'll need  doctor's script, and maybe you get a relief within a week. 

Patrick Turner. 

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Charles (Chuck) Maack

Well, John, in looking up Vanuatu, you live in what appears a tropical paradise!

 

What I was unable to find was any information whatsoever regarding physicians or any specialty in, for example, the largest city of Port-Vila, the capital of Vanuatu, on the southwest coast of Éfaté. 

 

Are there at least some family physicians there or elsewhere in the Vanuatu islands, who could write you prescriptions such as the tamsulosin one 0.4mg tablet daily (aka Flomax - https://www.drugs.com/tamsulosin.html 

suggested by Patrick that might relax the bladder neck and what may still be a sufficiently large left-over prostate gland that, despite your previous radiation history, may be pressing against the urethra thus the urinating issue?  If no physicians, and even though it has been long ago, you could consider contacting the physician who administered the orchiectomy, explain your urination issues and what Patrick and I have explained here, and request he/she email you a prescription – since I could also not find if any pharmacies are located there where, with a prescription, you could purchase those medications requiring a prescription or over-the-counter meds, I would hope there are.

 

Like Patrick, with my incontinence, I have little drainage during the night, laying down, and pressure taken off my bladder.  I wear a pad overnight, yet I awaken when the need to urinate arises and make about every three-hour trips to the toilet to relieve that pressure.  As one with “total” incontinence, I recently came upon a product available here in the United States that is an external catheter simple to “attach” to the head of the penis (it is not a condom catheter that fits over the penis and are known to slip off, but rather has a unique adhesive manner to affic) and provides a secure reservoir for daytime urine to accumulate and that I make it a point to check throughout the day to easily drain before the reservoir becomes to full.  You may not require such a catheter, but for those reading this post who may be interested, open and visit each reference.  The Men’s Liberty offices are closed on weekends, so waiting until Monday through Friday U.S. time you should get through to their website to determine if they accept orders and ship to overseas locations:

Men’s Liberty website: www.MensLibertyLifestyle.com

How to use: https://www.mensliberty.com/our-solution/how-to-use/ 

http://www.bioderminc.com/

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Charles (Chuck) Maack

I wanted to add that when I read of any issues on this forum that I then feel I may have something to offer, I take time to go over the issue, then research the issue, then compile my response (opinion) separately before copying and posting to this forum.  It is my procedure when addressing the issues of any Prostate Cancer patient or his caregiver.  it takes time with the research, making sure that my response is reasonable and spelling is correct, and then copying posting - BUT, that is what being a volunteer mentor is all about!  We (or at least I) see the importance of making certain that what I am providing sufficiently addresses the issue and my hope the recipient can easily understand what I have provided.  If so, then my intent to ease that person's worry and/or concern has been achieved. Among my "credos,"  "Always as close as the other end of your computer to help address any prostate concerns." 

 

Charles (Chuck) Maack – Continuing Prostate Cancer Patient Since 1992, Advocate, Activist, Volunteer Mentor Locally and on-line Worldwide

eMail: maack1@cox.net 

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