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Merv ALLAN. My Story.


seafriend40

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seafriend40

As a result of a Readers Digest article in 1990, I had a PSA blood test done and the result was 13. I then was sent to a Urologist and then an Oncologist and was advised that "there was nothing there, nothing to worry about, have it checked again in 12 months! Second reading came back at 27, saw Urologist and then Oncologist and had TRUB, was told "pre cancerous condition found, but nothing to worry about, come back in 12 months"

. This time reading was 32, and TRUB resulted in 1 cancerous sample found out of 6. Was never told Gleason score or offered any other advice but"will give you Aggressive Radiation Therapy" and a 90% chance of complete cure. Had 17 weeks radiation therapy in Townsville in 1993 and in Feb, 94 PSA was 0!.

Every year thereafter had PSA done, in conjunction with complete blood scan, in December. In 2000, PSA came back at 20 and was told by Urologist that I had Advanced Prostate Cancer and that ONLY viable treatment was Hormone Therapy. Was put on Androcur at 200 mg per day! went on Net, didn't like what I found and self medicated myself down to 50 mg per day which kept PSA at acceptable level. In 2012 a friend who also had APC, advised me to stop taking Androcur and showed me "side effects", was HORRIFIED to say the least. Saw a new Urologist who asked why I had continued to take Androcur for 12 years, and I replied because I knew no different and that GP had continued to write prescriptions. This Urologist then advised me to "wait until PSA gets to 60 and would see what might be available.

Last December my PSA stood at 73, and a more recent, 3 weeks ago, reading is even higher!. Am now waiting for GP to return to get referral to Oncologist. Meantime keeping EVERYTHING crossed!!! Thanx, Merv. (Seafriend40)

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Patrick Turner

Hi Merv, In 2009, at age 62,  I had Psa slowly creep up to 5, then had biopsy, and the samples were analysed and I had a Gleason 9+9, agressive cells, young man's cancer and lethal. I was booked for RP and when attempted 4 mths later ( due wait time ) Psa was 8.8, and they found too much cancer around PG so they could not cut PG out, so I ADT with injects of eligard, and had EBRT 70Gy after the Eligard shrunk the PG size down to small target for EBRT. Full ADT has continued to now, 8 years,except for 2 pauses where Psa shot up again, so I went back onto ADT, which eventually failed.

Since 2009, Psa has yo-yo'd up and down between less than 0.1 and 8, and is about 12 maybe now, after the first 2 chemo doses. The ADT held it down for 6.5 years then 6 mths Cosadex, and 8mths abiraterone. I had extra IMRT to PG, 30Gy in 2016. But now there's no spread to organs, but my bones have countless mets.

I have no idea if chemo will work so may need Lu177 and Ra223.

The side effect of complete sexual mutilation due to RT and ADT was quite OK because I don't have a partner, and those available don't want sex due to menopause, so no shielas in my life. I found I could cycle faster while chemically castrated than nearly all other blokes my age, so the need for testosterone is a bit of a myth. But bone density suffers, but then if you exercize enough, the BD remains OK, and unfortunately most blokes get fat and unfit and do nothing. I did not. BMI is 24.   

I cycled 130,000km between 2006, whenI SHOULD have had biopsy - docs woud have found a tumour with lower Gleason, that was operable, and which had not already spread to bones.    

 

You and I have a major battle ahead, and its anyone's guess who wins, but I was told that because they could not cut out PG that there "was no cure" and I thought and still think Pca will kill me and I will be in the 30%+ who die from it, because I have so few other "co-morbidities", ie, other conditions that would kill me.

 

Compared to what the docs did here, what yours did from 1990 seems cavaleer, brazen, incompetent, very sub standard. But that's all water under the bridge, can't be changed, and what you choose now decides life and death. I am on chemo, and won't know if its working for another month, after 3 infusions. If my Pca is ignoring the the chemo, and Psa is zooming up, I'll try for Lu177 etc. But even the Lu177 etc may not work forever, a year or two, and then there is nothing, just palliative care, and I'll die, and I hope the pain drugs are good.

3 score years and 10, its all you are supposed to get, anymore is a bonus, and I have alerady outlived my dad and a sister by 11 years, they went via melanoma and Oa, both diagnosed way too late due to silly attitude to life, and stupid doctors. But even though I was waiting for my turn at getting shit to happen, and having yearly Psa tests after age 50, I was not investigated until Psa went to 5.0, way too late for me because I should have been examined in about 2004 when Psa was about 3.0, and some fellows have emailed me to tell me their GP insisted on biopsy at 2.8, and they said the GP saved their life, because Pca was found when Gleason score eas only 5, and PG was removed early enough.

NHS in UK recommends examination at Psa at 3.0. I was making a small amount of Psa for a larger tumour size which had become able to spread due its mutations.

So I have managed to stay alive with Pca since 2005, 13 years. But I know guys who were diagnosed 3 years ago and all forms of treatment including ADT and chemo soon failed, and Lu177 may not get it, so they have reason to fear it.

Best hope is for immunotherapy being developed at Marsden Hospital in UK where some blokes with months to live have got remission from Pca that had many mutated forms, so all else failed. But the fix is only good for 15% of patients so far, its not yet available, and may never be. 

But if I last 2 years, maybe it comes to Oz in time to get it.  

I'm going for a bike ride and lunch at cafe now, nice day here in Canberra, wind is blowing BS from Pollies on the Hill away. Keep well, Patrick Turner. 

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Hi Merv, very sorry to read your treatment history. I am not a Dr, in deed have no medical qualifications what ever but all I can say is "there are good Doctors, not so good Doctors and bad ones and you seem to have copped more than your share of the latter. As a public patient I experienced advise that I was not comfortable with and finally asked for a second opinion. This not being available to me in the public hospital system I paid to see a private specialist. His recommendation for immediate RP probably saved me from loss of my bladder to where the PCa had already spread.Twelve months later and PSA still undetectable at last test, I have no symptoms although with a positive margin remaining I expect a reoccurrence at some point.

The system  is full of good people and others just "filling in their day, having limited skills and who apparently spend little time trying to get up to speed in this area where there are many different opinions and the knowledge base is forever changing." My own GP told me at the outset that he would never let them touch him with a knife for PCa yet today, 7 years later I believe I owe my current health to just such a procedure. 

Keep doing your own research and also, when you find a good Doctor in whom you can trust, hold on to them!

All the very best for the future

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alanbarlee

Hi Merv,

Unless your story is incomplete, that is a tale of apparent professional neglect with all your medicos, which I found very disturbing to read. Fortunately it seems like a very isolated case, which while a good thing, doesn't help you much. What I can say is that patient empowerment through self-education via informative and sharing sites like this one (and many others) is the best safeguard to maximise the future likelihood of positive outcomes.

You might want to get a short update on the diagnostic scans and treatments that have become available during the period since your first elevated PSA - and which continue to evolve at a rapid rate - by checking out my recent response to Zac under the 'metastatic' page in this Forum.

As you will see, there are a number of good options available to you, but you may want to have your detailed history and options reviewed by a medical oncologist that you can respect and trust - labels which,  judging from the experience of our members, fortunately apply to the overwhelming majority of them. Perhaps a well-known hospital with a well-recognised oncology department would be a good first port of call.

Let's know how you get on.

Cheers,

Alan     

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Merv you are a legend.   Who know what is going on - I have had lots of treatments since surgery "failed to cure" in 2005 but I am dry.  Then I was told I had had two to five years!!   Now after chemo (7 infusions) last year and 8 months on Xtandi and continuing with Zolodex (started 2012) my PSA doubled from 10 to 25 and to 50 recently, the view is that if it is up again in two weeks I will be considered for the TheraP trial - Lu-PSMA617 v Cabazitaxl. Scans show many many mets.  Again few symptoms apart from the usual side effects of treatment and at 72 I am a happy boy - and looking forward to ten days in Noosa 

 

 

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Merv ..... mate,

Don't be afraid to sack your medicos if you don't have absolute faith in them.  I sacked my first Urologist for just that reason.  I now have a great urologist, two fantastic medical oncologists (on in the public system and one in the private system) and a great radiation oncologist I can call on as needed.  Its YOUR life they are messing with.  I was horrified to read your history, especially when compared to mine.  You don't mention if you have had regular bone scans and/or CT scans to monitor your condition, and I am guessing you haven't had chemo yet either.  You might find Lucrin easier to tolerate than Androcur also, and for me it was more effective too.

My advice would be to shop around and look for a urologist. or preferably a  medical oncologist, that specialises in prostate cancer.   To quote my urologist, "if you have a problem with your water works, come and see me, but for cancer see your medical oncologist"

Good luck, and keep us informed of developments

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seafriend40

Thanx to all who replied, much appreciated. Forgot to mention (seniors moment) I am 78 years old,married and retired, have the tired part, still looking for "re"!! Had a long phone discussion with Jim and that is how I am here. Looking forward to many more "talks" with you all!!

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Dear Marv,

I am really sorry about your plight and a couple of others who have had similar experience.

You have now become a well informed patient but it may be too late.

To hell with those STUPID doctors who have played with your life!

Hope you will find a way to fight with this insidious disease and protect your life.

Good luck!

Sisira

 

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Charles (Chuck) Maack

Merv, you definitely need to see a Medical Oncologist to perform diagnostics, imaging, and determining you best course of action based on your status from these tests.  I tried to find such a Medical Oncologist near you but with no success.  Closest I found was in South Brisbane at the Mater Medical Centre, 293 Vulture St., with haematologist Kerry Taylor.  See more about him here:

http://www.blood2018.com/program/speakers/kerry-taylor.html so this would mean a trip to him after calling and arranging an appointment while at the same time advising that in view of this having to require travel from your location to South Brisbane you would want appropriate testing and imaging while at that appointment with anticipated treatment options discussed and begun.  And ask if this could be arranged and the amount of time/days you may have to remain close by the Mater Medical Centre to accomplish what you perceive are necessary requirements based on the years you have been living with high prostate cancer PSA levels and inadequate physician expertise or care.  Not sure if that can be arranged for you, or if others monitoring this forum know of Medical Oncologists closer to Bundaberg than Brisbane.  For certain do not continue with the physicians you have been seeing since it is absolutely obvious they have no experience regarding understanding and treating prostate cancer.  You need expert help and you need it in near time.  If any reading this post live in Brisbane and could provide a place for Merv to stay should he come to Brisbane for an appointment and treatment, please post here your willingness to do so.

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I'll keep my story short but a couple of items might be of interest. Diagnosed in 2006 at exactly on my retirement my PSA was regular at 3.5 but a digital and biopsy confirmed cancer. High Dose brachytherapy and 5 weeks of radiation eliminated the cancer. On holiday in UK my left arm swelled and my PSA at 60 (nov 2013).

Back to Oz 2013 and back to St Vincent's Sydney.  Under Prof Epstein I went through an array of tablets of slow results but in 2016 had two doses of Lutetium under a trial. PSA dropped radically and no side effects. The trial stopped early for me (mmmm why?)so I took medical oncology advice for chemo. Changed oncologists to a Brisbane oncologist visiting in Cairns where we live. Went on Cabazitaxel 10 doses over 8 months. Terrible side effects: sickness, urinating blood, etc but 10 months on from ceasing  I cannot walk without an aide due to peripheral neuropathy. Very slow recovery. As soon as chemo stopped PSA went up.

Last resort the family has assisted with the costs of Lutetium ($40,000) . One dose to date and no side effects PSA at 6 down from 8.6.  In retrospect I should have paid for trial to continue. I would not go through Cabazitaxel again it did little for me as when it stopped PSA went back up again and side effects debilitating. (struggling to type this with dead hands fingers.

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Patrick Turner

Your shows yet again the variability of outcomes with treatments for Pca for different men, and nobody can ever assume what works for one man might work for another.

My oncologist said he'd seen "good results" with Cabizataxel which is the second rung up ladder of chemo treatments here, Canberra Hospital, which has 4 levels. But no details let alone online summing up of case histories is available, just one vague statement by a well meaning doc. But all the side effects you describe above are what Docetaxel is supposed to give, and both Cab and Doc are based on taxane, derived from the European Yew tree. I'm 71, week before Docet chemo began 5 weeks ago IO cycled 270km, Psa was 12, and I am riddled with small bone mets, and maybe some viscerals not easily seen on scans. I'll self fund myself for Lu177 if the Docet is not reducing Psa. Maybe I will need Radium 223, and it seems you cannot expect to ever beat this, just delay death a year or two. Some say that after Docetaxel, cancer can be held back with enzalutamide or abiraterone where previously it had failed because either the cancer or your body obstructs the action of these 2 drugs. But I doubt the PBS will fund a second run of these things.

But any anti hormone drug never keeps working for very long. There are usually survivor cells aftwr whatever treatment is used, and I bet a few cells are not killed by Lu177, and they continue to grow later, or some cells make no PsMa so they don't attract the Lu177 so it can't work on those.

I don't have kids or a wife, and managed to have enough to fund whatever comes along. A man must be prepared to draw from the pile of dough to stay alive at the end of his life. I don't have a bunch of greedy heirs wanting me to die soon to get my dough. I feel no guilt about it. Nobody gave me any big quid during my life when I needed it, I worked and saved it. But I asked one clinic doing radical stuff if I could in theory talk to doc, if I had a refferal, and they wanted me to have private insursance. Sure I said, money in bank, and I will pay in advance, but they said they would not talk to me unless I was insured - by some money sucking insurance company.

So I don't know how many other patients they exclude on what seems like unfair reasons, but I guess they have troubles getting dough from patients with dough, especially if they die before paying.

Not a worry though, because that clinic was not really offering much for Pca, and they concentrated on rare cancers. Its not unheard of for someone to fork out $200,000 for some labour intensive treatment.

Nobody can really get more than what is available, and it may not work real well.

I'm not cycling very far these days.

Patrick T. 

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Just following on from Chuck's post above, there are many good oncologists in Brisbane, both in the public and private sector.  The advantage of the public sector is that you can do everything in one place - bloods, consultation, bone, PET and CT scans, and they have the latest and greatest equipment in scanners.  Sure you might have to wait a bit to see the oncologist, but it is probably worth it.  Can you not get a referral from Bundaberg Hospital to Oncology at either Royal Brisbane or Princess Alexandra ??  I have all my scans done at PA, and see one of my oncologists there, and am starting my chemo tomorrow at Holy Spirit Northside and my private oncologist is managing my chemo.  If you want any further information ley me know and we can talk outside the forum.

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  • 2 weeks later...
seafriend40

Just an update on my previous story, the PSA figure that I quoted for December 2017, should have been 57, not 75! Apologies, dyslexia coming on!LOL. I had another test done on 03/08/18 which gave a level of 61. Have got a referral to see Oncologist, and am having Nuclear Bone Scan, tomorrow, Thursday 30/08/18. There is an Oncologist here in Bundaberg, a Dr. Gerry ADAMS, attached to Genesis Cancer Care, and it is he that I will be seeing whether as a Private or Public patient.

Edited by seafriend40
wanted to add more detail
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Patrick Turner

Hi Merv,

So your Psa has risen from 57 to 61 in 8 months. This is a slow Psa rise, but Psa is a bit high to begin with. Pca effect on your life quality may still be low now, but may change for worse any time soon, so I guess the scans will tell oncologist more about your real condition, and he should spell our what options for treatment you will have.

So its a time for worry and decisions, and gritting your teeth while thinking of Australia; and time for the side effects of treatments.

I have coped so far, and will maybe know tomorrow if chemo is working or not.

The first week after chemo is bad, but next 2 weeks are tolerable, and next chemo is tomorrow, and this last week I will have cycled over 100km, and tomorrow I'll cycle over to hospital for the chemo.

I will catch a bus home if I don't feel well, they have a rack on front to put bike but last time after chemo I had to walk 1 km to where I parked my car, In felt just fine, so a slow cycle is easy peasy......

Patrick Turner.  

 

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Mate, 57 to 61 in 8 months - I should be so lucky.  Yes the PSA is a bit high, but that could be from a number of causes, not necessarily a rampant prostate cancer loose in your body.  I would hope they are doing a CT as well as the Bone Scan to see if soft tissue is involved, eg lymph nodes, etc.  I look forward to your next post.

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