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User
Posted 28 Nov 2018 at 19:46

Hi All,

I was just recently diagnosed earlier this month and came  across this forum after doing a little research.  

I am 41 years old, and initially went to see a urologist after experiencing some frequent urination and slight pain post ejaculation.  

Long story short, had my PSA tested and it came back at a 168.  Had a biopsy and 9 of 10 samples came back positive with a Gleason score of 9.  

Had recent bone scan/MRI/CT and bone scan showed mets in left hip and a marker under my right scapula.  

Have been meeting with my oncologist at MSK and they are recommending a 3 phase clinical trial consisting of Apalutamide, along with the usual standard of care with Abiraterone and Prednisone for 10 months.  Phase 2 would be a prostatectomy and phase 3 would be radiation.  The study is pretty aggressive and has been active for a few months now and was wondering if anyone here has experience with any of this.  

Reading through some of your experiences has been quite comforting after my initial shock post diagnoses.

 

Thank you in advance for any responses here.

 

Best,

Rob

 

User
Posted 29 Nov 2018 at 03:41
I am on a month’s course of Prednisone, the immunosuppressant corticosteroid, for nodular prurigo (a form of eczema). And very effective it has been too, as it has virtually cleared up. Down to one tab a day now, from six at the start. They let you down gently so you don’t go cold turkey. If you read the leaflet, as with all drugs, there are potential side-effects, but I have had none. Oh, I and I have to avoid children with chicken pox!

I did mention to the dermatologist that I had heard of its use in some cancer treatments.

Rob, would you be getting the 100% genuine drugs and not placebos in a double-blind trial?

Who is conducting the trial?

Best of luck.

Cheers, John.

User
Posted 29 Nov 2018 at 08:05

It isn't a trial available to UK men. The only member here that has had anything similar is High Cadence, I think. He was also very young at diagnosis.

Interesting to members (particularly those who have small fluctuations in their PSA) here that in the trial bumph it says that if the patient's PSA doesn't quite meet the required threshold it should be repeated before 10am which implies that PSA readings are higher in the morning than the rest of the day!

Edited by member 29 Nov 2018 at 08:06  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 29 Nov 2018 at 00:20
Prostatectomy AND radiation is pretty radical for someone with proven Mets. What is the rationale for the study?? Is this being done with curative intent??
User
Posted 29 Nov 2018 at 03:41
I am on a month’s course of Prednisone, the immunosuppressant corticosteroid, for nodular prurigo (a form of eczema). And very effective it has been too, as it has virtually cleared up. Down to one tab a day now, from six at the start. They let you down gently so you don’t go cold turkey. If you read the leaflet, as with all drugs, there are potential side-effects, but I have had none. Oh, I and I have to avoid children with chicken pox!

I did mention to the dermatologist that I had heard of its use in some cancer treatments.

Rob, would you be getting the 100% genuine drugs and not placebos in a double-blind trial?

Who is conducting the trial?

Best of luck.

Cheers, John.

User
Posted 29 Nov 2018 at 04:01

Thanks John!

 

 I belive it would be the actual drugs and not placebo. 

 

The link to the study is below. 

 

https://clinicaltrials.gov/ct2/show/record/NCT03436654?view=record

User
Posted 29 Nov 2018 at 04:05

Thanks for the reply!

Full remission is the goal of the trial.  

User
Posted 29 Nov 2018 at 05:52
Hi Rob,

Didn’t realise you were in the States. You are certainly in the right place at MSK!

Looks like the trial is well worth a go. You will be closely observed and monitored. As you know, we have socialised ‘free’ healthcare here in Britain, so who would pay for your treatment? Medicare? Insurance? Or is it free for research purposes?

Are your family originally from Georgia, and I don’t mean GA?

Cheers, John.

User
Posted 29 Nov 2018 at 08:05

It isn't a trial available to UK men. The only member here that has had anything similar is High Cadence, I think. He was also very young at diagnosis.

Interesting to members (particularly those who have small fluctuations in their PSA) here that in the trial bumph it says that if the patient's PSA doesn't quite meet the required threshold it should be repeated before 10am which implies that PSA readings are higher in the morning than the rest of the day!

Edited by member 29 Nov 2018 at 08:06  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Nov 2018 at 12:19

Thanks John!  I am inclined to give it a go. 

 

Yes, the drugs would be covered by the trial and I would be responsible for the rest through my health insurance. 

My family is from Georgia. I was born here in the states. :)

Cheers,

Rob

User
Posted 29 Nov 2018 at 15:44

Originally Posted by: Online Community Member

My family is from Georgia. I was born here in the states. :)

Cheers,

Rob

I think the ‘....vili’ in your surname gave you away!

I am so grateful for our NHS and its myriad flaws (underfunded and oversubscribed), as I reckon if I lived in the States my medical bill for this year so far would be over $100,000.

გმადლობთ

Cheers,John.
User
Posted 29 Nov 2018 at 15:48

Haha, guilty. The last name is a dead giveaway. 

I did reap the benefits of your system of healthcare for some years as my wife worked for the BBC here in NY. 

User
Posted 29 Nov 2018 at 16:27
Rob, fascinating to read of your trial and the very best of luck. I don't think apalutamide is yet approved for UK use in PCa, but even in the US it is for non metastatic PCa. Presumably it is a pretty powerful anti-androgen used instead of Zoladex or equivalent. The abiraterone/prednisolone combination, with the latter in a non-addictive small dose regime, is in use here as in the US and is effective against mets. It held my PCa at bay for three years nearly. I assume the theory is to get rid of mets then deal with the source of the problem with a RP. The RT is to make sure of dealing with any local spread, I guess. A very radical approach, unlikely to be available here for years, alas, as we always seem to follow where the larger market if the US leads.

You're in for a pretty tough time but I hope at the end of it you have a long and trouble free life. As a fellow Gleason 9 survivor, treated much more conservatively, I have managed 11 years plus post diagnosis, so you should certainly look to better that!

AC

User
Posted 29 Nov 2018 at 16:49

Auld,

 

Amazing to hear of your progress. Hope it’s for many many more years!

 

Correct, since I am considered newly diagnosed with low volume mets, they deem me a good candidate by applying the 3 drugs together. 

Hopefully it all works out. 

Thanks again for your thoughts!

Best,

Rob

 
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