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Brian has his results - he's trying to understand it all

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You may have missed Brian's update, so I am putting a copy here.

The earlier discussion is linked lower down in this post.

Jim

 

Hi folks,

 

Finally got my pet scan results, all opinions trying to help me understand it all are welcomed.

 

Cheers 

Brian Moody

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Original story:

 

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alanbarlee

Hi Brian,

 

A biopsy microscopic report of Gleason 8 / glomeruloid morphology back in 2012 with an elevated PSA means you had then and still have high risk prostate cancer. The latest PSADT doubling time of around 5 months, coupled with the positive (or at least the 'suspicious') February 2020 PSMA/PET scan says to me (an informed patient but not a doctor) that you have metastatic disease  in bone and lymph nodes that has just begun to take off and which would usually  require active primary treatment in the short term.

 

Your radio-oncologist gave you sound advice back in 2012, and I would judge that he is giving you good advice now. The early Cosudex is to minimise any tumour flare and possible bone pain that might otherwise occur at the start of your ADT (Lucrin). You might ask him to elaborate on the radiotherapy (RT) that he would follow up with - conventional external beam, IMRT or stereotactic - and to outline the pros and cons.

 

I would think that your PSA profile during the course of your treatment would dictate the timing of a follow-up PSMA/PET scan. With ADT (plus or minus RT) you would hopefully see a reduction of PSA to a very low level - but given your risk status you may eventually experience a subsequent rise. A  PSA of 0.2-0.5 would give you only a 65% chance of picking up any recurring or new mets: this increases to 85% or better with a PSA of 0.5-2.0. However, not all tumours are PSMA avid, so your doctor may also order an FDG PET/CT scan if the post-treatment PSA is rising in the context of a clean PSMA scan at the original tumour sites.

 

Since you apparently have a referral to a medical oncologist, you might want to review with him the medical alternatives to radiotherapy as you begin the ADT. Given your high risk but apparently low tumour burden - and the limitations related to the pandemic - he might discuss adding abiraterone  (or one of the other newer hormonal drugs) to your ADT, or possibly graduating to one of these drugs, (and / or to chemotherapy) at a later date if your PSA and scans should move in the wrong direction.

 

The point of these comments is that there are a number of options that may want to explore with your medical team - but you should get on with doing so.

 

I hope this helps to resolve some of your uncertainties.

 

Keep in touch - and best wishes,

 

Alan

 

 

 

 

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Brian Moody

Cheers Allan,

 

Thank you very much, for such an in depth reply

 

Brian M

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Brian Moody
Posted (edited)
On 3/30/2020 at 10:01 PM, alanbarlee said:

Hi Brian,

 

A biopsy microscopic report of Gleason 8 / glomeruloid morphology back in 2012 with an elevated PSA means you had then and still have high risk prostate cancer. The latest PSADT doubling time of around 5 months, coupled with the positive (or at least the 'suspicious') February 2020 PSMA/PET scan says to me (an informed patient but not a doctor) that you have metastatic disease  in bone and lymph nodes that has just begun to take off and which would usually  require active primary treatment in the short term.

 

Your radio-oncologist gave you sound advice back in 2012, and I would judge that he is giving you good advice now. The early Cosudex is to minimise any tumour flare and possible bone pain that might otherwise occur at the start of your ADT (Lucrin). You might ask him to elaborate on the radiotherapy (RT) that he would follow up with - conventional external beam, IMRT or stereotactic - and to outline the pros and cons.

 

I would think that your PSA profile during the course of your treatment would dictate the timing of a follow-up PSMA/PET scan. With ADT (plus or minus RT) you would hopefully see a reduction of PSA to a very low level - but given your risk status you may eventually experience a subsequent rise. A  PSA of 0.2-0.5 would give you only a 65% chance of picking up any recurring or new mets: this increases to 85% or better with a PSA of 0.5-2.0. However, not all tumours are PSMA avid, so your doctor may also order an FDG PET/CT scan if the post-treatment PSA is rising in the context of a clean PSMA scan at the original tumour sites.

 

Since you apparently have a referral to a medical oncologist, you might want to review with him the medical alternatives to radiotherapy as you begin the ADT. Given your high risk but apparently low tumour burden - and the limitations related to the pandemic - he might discuss adding abiraterone  (or one of the other newer hormonal drugs) to your ADT, or possibly graduating to one of these drugs, (and / or to chemotherapy) at a later date if your PSA and scans should move in the wrong direction.

 

The point of these comments is that there are a number of options that may want to explore with your medical team - but you should get on with doing so.

 

I hope this helps to resolve some of your uncertainties.

 

Keep in touch - and best wishes,

 

Alan

 

 

 

 

Hi Alan,

My oncologist has prescribed Cosudex 50 mg, (28 tab's) and after two weeks in, there will be injections two weeks apart, lucrin 22.5 

Edited by Brian Moody

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alanbarlee

So you're underway, Brian - that's good. If you want to have less exposure to the clinical environment in our COVID-19 world,  your oncologist  could graduate you to a 3-monthly version of ADT, but he will want to monitor your PSA response, ideally monthly at the beginning (which he could do via Tele-health or phone).

 

Keep regular PSA testing going - and maintain daily home and outdoor exercise, with emphasis on weight / resistance routines. This will greatly help to combat muscle loss, bone density loss, hot flushes, your psychological health and other side effects of ADT, while also helping your your immune system to combat the prostate cancer itself.

 

Best wishes,

 

Alan

 

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Brian Moody

Cheers Alan,

 

I do my due diligence before I do anything my friend, and I have to say I dont like the look/sounds of this Cosudex,

Way to many side effects, ⁉️

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alanbarlee

Brian - Cosudex (bicalutamide) is an 'anti-androgen', which works by blocking the androgen receptor on prostate cancer cells from taking up circulating testosterone (T) and dihydrogen testosterone (DHT), which they need for fuelling their growth. (There are now newer products that do the same job several times more effectively, e.g. enzalutamide). Using this class of drug prior to starting ADT (e.g. Lucrin, which  inhibits testicular synthesis of testosterone), is often used in the context of bone mets to avoid a short term flare in tumour growth that may cause pain. 

 

Most people (including myself) don't have too much trouble with anti-androgens, even with extended use. Cosudex can cause breast enlargement and other side effects in some men, but I wouldn't expect that a couple of weeks use would bring you into that territory.

 

Hang in there!

 

Alan

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Brian Moody

Thank you once again Allan,

I will put it to my Oncologist that I wish to change over to Enzalutamide and see what he says.

 

Cheers

Brian

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alanbarlee

Brian - I would think that changing the anti-androgen for a 2-week anti-ADT-flare period would not achieve anything useful (remembering again that I'm not a doctor). By all means explore its  possible use down the track, however. Keep in mind that some men find have problems with fatigue with Enza, and a very small number have seizures. 

Note also that the PBS rules at this point in time only allow enzalutamide to be ordered after unsuccessful or untolerated chemotherapy. Otherwise you're looking at around $3600 per month.

Cheers,

Alan

 

   

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Brian Moody

$$$$ Well that solves that problem then.

 

Could castration help and be worthwhile looking into.

Thanks once again Alan

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alanbarlee

Surgical castration will certainly eliminate all your testicular testosterone (T), but the adrenals also produce something like 10% of your T (and metastatic cancer cells can even make their own - or can increase the expression of androgen receptor). ADT (Lucrin) also shuts  down testicular T only, so surgical castration could well be on your agenda when discussing options and comparative side effects with your medical team.

 

Note for the future that one of the newer hormonal drugs - abiraterone (Zytiga) - which is used in conjunction with conventional ADT, also inhibits adrenal T, as well as testicular T - but the same PBS rules apply to that one as to enzalutamide.

 

Alan

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alanbarlee

Brian - I came across something else today on anti-androgens:

 

If PSA persists after an RP, then 150 mg (cf. the usual 50 mg) of Cosudex (which is not sequentially limited by the enzalutamide PBS rules) might be worth a discussion with the medical oncologist. The study I read about found a PSA response for PSA > 0.6, and particularly PSA > 1.6. There was some good trial work done 10+ years ago with the 150 mg dose.

 

Note that the intent with this is not simply to avoid bone tumour flare before ADT (e.g. Lucrin or Zoladex), but to gain some actual remission. 

 

Alan    

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Brian Moody

Excellent Allan,

 

Ill copy your post,

 

But leaving out everything except your comments and post it to my oncologist and see what he says, 

 

I like the remission part

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