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Recently Diagnosed


Kevin Martin

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I will start to say that I had a triple bypass in Feb. 2012 from a heart attack that was put down to hereditary.

I had regular blood tests after that to make sure that all was OK. Being a typical male I assumed that when the doctor said we we will test for everything I assumed that the tests included PSA. About early 2014 and due for another test the doctor asked when did I have the last PSA test, I told him that I thought that I was having them, he said no, we had better start. I had no idea when the last one occurred.

All of the blood tests since 2012 had been good so when I went in for the results he just indicated no problems. The first PSA result in 2014 was about 10, I questioned him about what should be done and his reply was I will get you to have another test in 3 months and then make a decision. That result was slightly higher and when I questioned him again he said that I will have the next one in 6 months to see what that result is because if I sent you to a Urologist he would do the same thing, keep you on watch and alert because you will only have a problem if it spikes higher.

I have had a total of 6 PSA tests prior to 1st April this year, the last result before that on 27th October 2015 being 15.2. Again and every time I questioned him I received the same answer.

On 1st April this year I went to get a referral for another test and he was away so I seen another doctor in the practice. The first thing he asked me was have I been to a Urologist ?, I replied no, he asked why ?, I replied he won't send me citing the above. He said, well I want you to go, I said that is good.

I seen a Urologist on 20th April and after a DRE I sat down an he told me that you have a problem as your prostate is hard on the LH side and it is likely to be cancerous and I want you to have a biopsy to determine the extent. When leaving I told him that my biggest disappointment is that my doctor would not refer me and that I had to see another to get it done. His reply was that I should have been here 2 years ago.

I had the biopsy + a cystoscopy on 3rd May.

On 20th May I visited the Urologist for the result and he told me that it was cancer and the gleason score was 4+5 =9. I had read a lot about prostate cancer so I knew a little of what he was referring to. He gave me a referral to have a abdo and pelvis scan plus told me that an Oncologist would be in touch with me to talk about ray treatment and after that to return to him on 3 rd August to discuss hormone treatment.

I deliberately visited my original referring doctor and told him that fate has stepped into my life because if I did not see him and my old doctor was there I would have continued on in the same old way and then had a major problem not to far down the track. I thanked him and left, he had no comment.

On 27th May I visited another doctor locally to introduce myself saying I wanted to be a new patient and told him of my past and present problems. He asked what scans I have had. I said I have none as I was told to have the abdo pelvis scan a week before I returned to the Urologist in August. He said that he wants me to have that ASAP and referred me for a Nuclear Bone Scan as well.

On 30th May had nuclear bone scan.

On 2nd June had abdo pelvis scan.

On 6th June had a call from Oncologist office and appointment made for 16th June.

On 7th June had a call to visit my new local doctor on 8th June where he told me that the nuclear bone scan was clear and that the abdo pelvis scan was clear except for a slightly enlarged lymph node in left pelvis. He asked if I had received a phone call from the Oncologist, I said yes, he said probably to discuss that.

On 16th June I seen the Oncologist's assistant who asked lots of questions about lots of things, she gave me a DRE, never been to a lady doctor before but it was OK. When I sat down she handed me some papers that indicated a trial using ENZARAD and to take home and read. She left me in her office for about 10/15 minutes. She and the Oncologist returned to talk with me. The Oncologist was up front and indicated that the lymph node was in fact cancerous and that I was to start hormone treatment (Lucrin Depot 3 month) for which he was confident that it would resolve the lymph node problem, on 23rd June. He also mentioned the new treatment for which I said I was happy to participate in. This is a 50/50 concept where 25 are computer selected to participate in the ENZARAD trial and I assume 25 will use an anti androgen drug (bicalutmide / nilutamide). I was told that when I return on 23rd June that I had to have numerous blood tests to make sure I was suitable to enter the trial as well as the hormone needle in the backside.

On 23rd June I had to answer numerous questions for the trial, I signed, the Oncologist also counter signed as a witness. I had the blood tests plus the hormone needle.

Yesterday I was told that I would be a participant in the ENZARAD trial and the medication would be ready in the PM. I collected the bottle of 120 tablets and have had the first dose of 4 a day.

AllI have to do now is wait to see what side effects I am going to get. Time will tell.

Sorry about the long story but it is all how it has been. I feel as though I have been on a roller coaster for the past, nearly, 3 months.

I have to say that I am only a public patient and am grateful to all of those who have assisted me and others who will assist in the future. Fate has definitely been on my side. All I want now is for my golf to improve.

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Great post, Kevin! 

 

Firstly, it's so disappointing to hear that some practitioners in the primary medical sector are still as indecisive or as ignorant about prostate cancer as your experience revealed.

 

Having said that, your positive DRE, your rising PSA, your biopsy GS 9  and your CT-found large lymph node all strongly point in the direction that your urologist has sent you, i.e. well supervised and monitored secondary treatment delivered sooner rather than later. It's not uncommon for cancers like yours to respond really well to combination treatments that include radiation, so the initial delay in recognising your PSA might well have been worth it in getting access to a good and highly relevant clinical trial. 

   

The ENZARAD trial that you're on is recruiting 800 participants in most Australian States and overseas. It's targeting locally advanced PCa with ADT  (Lucrin in your case) and no prior chemotherapy, plus EITHER (randomly double-blinded selection) the new generation anti-androgen enzalutamide plus external beam RT, OR an earlier anti-androgen ( e.g. bicalutamide or nilutamide) plus external beam RT. 

 

So - you're off and running - and it seems you're in good hands. Keep us posted, and best of luck!

 

Alan B

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Thanks Alan, I agree with what you say about some doctors, they tend to live in the past. The new one I am now going to is very proactive and has taken an interest in me. He is probably in his 40's.

What I like most about this trial is that I will have a Case Manager and that there is a set down program that I have to follow for 7 + years, if I stay suitable. The Oncologist indicated to me that being in the trial will be like having a second brain the way I will be looked after because everything is laid down and all of the results are monitored by others.

(I tried to download a file showing the program timetable, it is only a page, but it must be too much to post.)

In 4 weeks I return for more blood tests, answer a questionnaire and have a clinical review. For weeks 12, 16, 20 and 24 clinical review and blood tests with questionnaires weeks 16 and 24 only plus fasting blood samples week 24 only.

Every 3 months from 9 to 24 clinical review, DRE annually only, blood tests and more questions months 12 and 24 only.The study must be for 24 months because it says after study treatment is for more blood tests and reviews 4 monthly years 3 and 4, 6 monthly years 5 and 6 and annually from year 7. with DRE and questionnaires annually. It also says further assessments are taken such as bone scans if deemed necessary from given results.

Radiation begins week 16.

All of the above was unknown to me prior to 16th June so I feel very lucky to be given the opportunity.

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Kevin, you say that you've had nuclear bone scan but don't mention whether you've had a bone density scan (they're two different things).

 

One side effect of Hormone Therapy, like the Lucrin that you're on, can be thinning of the bones (osteoporosis) which may sometimes result in fractures.

 

When starting on hormone therapy, men need to be checked for their risk of osteoporosis or fractures.  Bone mineral density should be measured (with a "DEXA" scan) around the time of starting the hormone therapy and regularly during treatment (yearly for men at high risk).

 

If you haven't already had a bone density scan, you should get your GP to arrange one.

 

Other side effects of hormone therapy are loss of muscle mass, weight gain and fatigue.  Exercise is an important way to reduce these side effects.  Your golf is a good start but you should also do some resistance exercise (weights) as well.  There's lots of good information in the forums about exercise - just search for "exercise" and you'll find it. 

 

To search for things in the forums, go to the symbol of a magnifying glass at the top right of the page, type in the word that you are searching for (eg exercise) in the box beside the magnifying glass and then click on the magnifying glass.

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Hello Paul,  Thanks for the info. I haven't had a bone density scan so I will mention it to the case manager when she rings me tomorrow. No problems for me to see my doctor and ask for one.

I am probably more active than most. I do stretches and exercise straps 4 times a week and stretches, straps and light hand weights 3 times a week. Approx time total per week is 5 hours, plus play golf 3 times a week when the weather is OK. Often go in a cart but I frequently walk as well. The course is reasonably flat.

I am not a fitness fanatic but I have for ever been active and looked after myself. I am not an angel and at times have had a smoke and drink. I have had neither for about 5 years now..

The Oncologist did mention for me to make sure that I maintain what I do. Actually until 18 months ago I was a gym member for about 10 years, I only stopped because I decided to do my routines at home. I am thinking now to go back because of the range of machines I can use plus I can find a heavier weight range and stick with it.

I have several mates who have or had my problem so I am very aware of potential side effects, golf could be a big problem with the loss of muscle mass. 4 others I know still play but distance is now a problem. One told me yesterday that he has been off Lucrin for 8 months but his muscle problem still exists.

I found out yesterday that another mate is also on enzarad, he only started the trial last Monday. He has a silent number so I have to wait until he rings me to have a talk. We should have some interesting conversations from now on.

I am happy that there are several men such as yourself on the site who are just willing to help others like myself.

Thanks.

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  • 4 weeks later...
On 26 June 2016 at 10:58 AM, Paul Edwards said:

Kevin, you say that you've had nuclear bone scan but don't mention whether you've had a bone density scan (they're two different things).

 

One side effect of Hormone Therapy, like the Lucrin that you're on, can be thinning of the bones (osteoporosis) which may sometimes result in fractures.

 

When starting on hormone therapy, men need to be checked for their risk of osteoporosis or fractures.  Bone mineral density should be measured (with a "DEXA" scan) around the time of starting the hormone therapy and regularly during treatment (yearly for men at high risk).

 

If you haven't already had a bone density scan, you should get your GP to arrange one.

 

Other side effects of hormone therapy are loss of muscle mass, weight gain and fatigue.  Exercise is an important way to reduce these side effects.  Your golf is a good start but you should also do some resistance exercise (weights) as well.  There's lots of good information in the forums about exercise - just search for "exercise" and you'll find it. 

 

To search for things in the forums, go to the symbol of a magnifying glass at the top right of the page, type in the word that you are searching for (eg exercise) in the box beside the magnifying glass and then click on the magnifying glass.

 

Thanks for this tip Paul. I went to see my Doctor on Monday about getting a 'no time limit' referral to the Oncologist, as he requested, plus have a blood test for PSA, LFT and looks like EUC in preparation for a return visit to the Oncologist tomorrow. The blood people have a room in his surgery. This will be the first 4 weekly visit as part of the ENZARAD trial. 

While there I asked the Doctor about having a bone density scan because of potential problems with the hormone treatment. He gave me a referral and I actually had it done yesterday.

I have the hard copy of the scans of both hips and the spine to give to the Oncologist tomorrow. The written reports were sent to both the Oncologist and the doctor.

This morning I had a call from the doctor asking me to visit him. He had a vacant time in 45 minutes which I accepted as I only live a 10 minute walk from his surgery.

He told me that my PSA had dropped to 2.9, from 15, 4 weeks ago. The LFT was all normal. I did not ask him about what the EUC ? result was because I was a bit excited digesting the info that he had given me. I will get that tomorrow anyway.

He then told me that the bone density scan showed both my hips were low in the numbers and that I had to buy some calcium/ vitamin D tablets to try and increase them. The spine showed as being normal.

As of now I still have no side effects except I maybe losing a bit of strength hitting a golf ball as it doesn't seem to be going as far. I have hit some good shots amongst more that are not so good. Could just be my swing, because I have played in some lousy cool weather lately and I am normally only a fair weather golfer.

I still do my stretches and light weights, now have 5kg dumbells and an exercise bike, everyday and I am reminded by all of the people I visit not to stop anything I do. It is an obvious big help.

Once again Paul thanks for your assistance.

 

 

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  • 2 years later...

As you can see I haven't been here for just over 2 years. There is a reason for that but I am not at liberty to talk about it at this point.  I finished Radiation treatment, 39 days, on 20/12/16.

I finished my ADT treatment on 3/4/18 which comprised of Enzalutemide, 4 capsules a day, and Lucrin Depot, a needle in the rear each 12 weeks. Total of 96 weeks.

My PSA has been undetectable since March, 2017.

I seen the Oncologist this morning, first visit after treatment finished. PSA still undetectable and testosterone was 1.8. 2 years ago it was 1.7. When I asked about the testosterone about being low I was told that normal is 8 and any man over 70 will have problems getting it back.  Blood tests on the Enzarad trial are now every 16 weeks for years 3 and 4. I was a bit disappointed about that as I have a bet with a mate that when I get it back I will hit the golf ball further than now. Apparently not to be. I started playing golf again about 10 weeks ago after a 20 month break. I just had no strength and was very fatigued.

I still have all of the side effects (not as bad), looks to be permanent, so just got to wait and see.

I come back on here on a regular basis and really feel for the men who are suffering a lot with spread of the mongrel stuff and the treatment that they are taking.

At this point I feel as though I have dodged a bullet as I am feeling overall, good. 

My bones seem to be OK and I have a good GP who sends me for scans and blood tests etc. when he feels they are due.

All the best to the men on this site who are suffering plus those who are happy to give a helping hand.

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Welcome back Kevin!

One small suggestion - you might want to consider a review with a exercise physiologist, who would be likely to prescribe an ongoing program of resistance training to offset the likely sarcopeneia (loss of muscle mass) that usually accompanies extended ADT  and loss of testosterone.

Progressive bone density loss is another common side effect that this form of exercise (with an impact component) would help with.

Best wishes,

Alan

 

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Hello Alan, Thanks for the advice. I actually do morning resistance training every day even on the 2 days I play golf. Muscle mass seems to have returned some what in my shoulders. 

I was surprised when told about the low testosterone number this morning, more so when told that the normal reading was 8. I recently had a bone density scan plus a nuclear bone scan a few months ago, My GP organises all that stuff and just tells me that the test results are OK.

I was told recently that testosterone results do vary. For some men numbers increase when treatment stops, or comes back slowly after treatment or the last one, no change at all over the foreseeable future. The last one could be me.

Cheers,

KM

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  • 7 months later...

Just an overall update and

summary for the treatment I have had as part of the clinical trial, ENZARAD, that I was very fortunate to be chosen as a participant.

Confirmed 20/5/16 after biopsy I had  high grade Pca, Gleeson 4+5= 9. The Pca had escaped the prostate into  L and R pelvic lymph nodes. The Oncologist said that they would be zapped by the radiation , which they were. Fortunately the rest of my body, after scans, was clear of it being anywhere else.

My treatment started on 23/6/16 with Lucrin injections and Enzalutamide capsules, finished on 30/4/18. (96 weeks)

I had 39 days of radiation (78gy). Started 26/10/16, finished 20/12/16.

I have been in remission since 3/3/17.

First blood test after treatment finished - 23/8/18 - PSA non detectable, Testosterone 1.8.

Next test done 3/12/18- PSA non detectable, Testosterone 7.5.

Last test done 25/3/19- PSA non detectable, Testosterone 8.2.

I still have a number of side effects, fluid retention feet and ankles, occasional hot flush, hard to sleep after I wake at about 3 am, a gut that I have never had before and man boobs.

I seen the Oncologist today to discuss this weeks blood test results. He was happy for me that the testosterone had increased  .7 with the PSA staying as it was. He indicated that with these numbers my outlook for the future is looking very good.

I asked him about the other 24 participants, in the clinical trial, from the Newcastle area and he said that except for three who had to leave because of the side effects, the rest are in a similar situation to myself.

I would think that Enzalutamide  has done the job.

 As an aside, a local news report this week indicated that a new concept is to be trialed shortly, in Newcastle, that entails participants to be given treatment of very high doses of Testosterone in lieu of ADT ( opposite to now) to treat the Pca.

Cheers to all,  particularly those having a hard time.

KM

 

 

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Thanks Kezza2, Left the Oncologist's room feeling good.

We are all some what different with treatment results but it looks like the combination of Lucrin, Enzalutamide and radiation up till now has worked for me, feel very fortunate to have been placed on the clinical trial list.

 

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You are right about different treatments.  I tried enzalutimide after the abiraterone trial I was on failed, but it did nothing.  I have just finished chemo (docetaxel) but that only partly worked.  PSA dropped from 54 to 16, but wouldn't go any lower.  Scans show about 5 mets on the bone at C3, T4 to T7, scapula, manubium and left rib, plus a bunch of small ones, so I am feeling a bit fragile at present.  However, all is not lost - I have my interview for acceptance into the TheraP trial next tuesday, so hopefully that will work out well.

Keep fighting the good fight

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Hang in there Kezza2. You are a typical example of what I was referring to.

Best wishes that you will be accepted into the TheraP trial next week and like you said, hopefully it will work out well.

I like your expression, keep fighting the good fight, it applies to all on this site.

 

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  • 3 months later...
On 3/28/2019 at 8:05 PM, Kevin Martin said:

Just an overall update and

summary for the treatment I have had as part of the clinical trial, ENZARAD, that I was very fortunate to be chosen as a participant.

Confirmed 20/5/16 after biopsy I had  high grade Pca, Gleeson 4+5= 9. The Pca had escaped the prostate into  L and R pelvic lymph nodes. The Oncologist said that they would be zapped by the radiation , which they were. Fortunately the rest of my body, after scans, was clear of it being anywhere else.

My treatment started on 23/6/16 with Lucrin injections and Enzalutamide capsules, finished on 30/4/18. (96 weeks)

I had 39 days of radiation (78gy). Started 26/10/16, finished 20/12/16.

I have been in remission since 3/3/17.

First blood test after treatment finished - 23/8/18 - PSA non detectable, Testosterone 1.8.

Next test done 3/12/18- PSA non detectable, Testosterone 7.5.

Last test done 25/3/19- PSA non detectable, Testosterone 8.2.

I still have a number of side effects, fluid retention feet and ankles, occasional hot flush, hard to sleep after I wake at about 3 am, a gut that I have never had before and man boobs.

I seen the Oncologist today to discuss this weeks blood test results. He was happy for me that the testosterone had increased  .7 with the PSA staying as it was. He indicated that with these numbers my outlook for the future is looking very good.

I asked him about the other 24 participants, in the clinical trial, from the Newcastle area and he said that except for three who had to leave because of the side effects, the rest are in a similar situation to myself.

I would think that Enzalutamide  has done the job.

 As an aside, a local news report this week indicated that a new concept is to be trialed shortly, in Newcastle, that entails participants to be given treatment of very high doses of Testosterone in lieu of ADT ( opposite to now) to treat the Pca.

Cheers to all,  particularly those having a hard time.

KM

 

Quote

 

Had my latest blood test yesterday (15/7) as an ongoing part of the  Enzarad clinical trial

Seen my GP today for the results which were PSA still non detectable and testosterone up .5 to 8.7.

I seen the GP to get the results early, so that I know, prior to talking with the Oncologist on Thursday.

I still have the same side effects as previously stated.

As I have also said before, I feel very fortunate to have been chosen to be on a trial that has given me the results that I have.

As Kezza2  says, "keep fighting the good fight"

Regards to all,

KM

 

 

 

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On 3/28/2019 at 7:05 PM, Kevin Martin said:

 As an aside, a local news report this week indicated that a new concept is to be trialed shortly, in Newcastle, that entails participants to be given treatment of very high doses of Testosterone in lieu of ADT ( opposite to now) to treat the Pca.

Cheers to all,  particularly those having a hard time.

KM

 

 

I have a longish, mostly audio, video on that treatment (Bipolar Androgen Therapy (BAT)) here:

 

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  • 3 months later...

I seen my Oncologist today as part of the ENZARAD trial, every 16 weeks. For the past 3 visits ( 48 weeks total time) I have seen a registrar.

My blood results were PSA, still undetectable and testosterone 8.0. (-.7) Have now been this way for PSA since 3/3/17 and he indicated that the testosterone was normal for my age.

My next visit is March 2020, then, if all is still good, March, 2021 after that.

All the best to everyone on the site.

KM

 

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Great outcome for you and the others on the ENZARAD trial, Kevin.

 

In spite of your high Gleason score, perhaps you were in the lucky group with relatively unmutated oligomets, confined to pelvic lymph nodes. Prompt and aggressive treatment with combined therapies seems to be the way to go there.

 

There are some related trials combining enzalutamide with lutetium  - a targeted radiopharmaceutical infusion rather than a less targeted external beam. These will be worth watching also.

 

Cheers,

 

Alan  

 

Keep up with active surveillance: you're blazing a great trail!

 

Alan   

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Thanks Alan,

I have always thought that I am in the lucky group, think about it quite often.

The Oncologist actually told me last week that he can't explain why I went into remission as quick as I did.

I can only play with the cards that I have been dealt and hope that my luck continues.

Cheers,

KM

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  • 3 months later...

Hello to all,

Another visit to the Oncologist today as part of the clinical trial I am on.

The good news for me continues, PSA still undetectable and Testosterone now 10, up from 8.

Next visit to the Mater is next August to have a number of blood tests that I agreed to give to the trial coordinator for them to gather info.

Then, the next visit to the Oncologist is not until March '21, then yearly after that, if the results remain the same, until completion of year 7. Year 4 ends in June this year.

All the best to everyone,

Regards,

KM

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