12 or 81 months ADT?

[Runner1957]

I had a recurrence last year in 1 pelvic lymph node.treated with 37 radiotherapy sessions ot all apelvis lymph nodes nplys prostate bed with ADT, zolodex every 3months,prescribed for 12 to 18 months. ADT went well early on but have some side effects as things progress.

PSA Has been undetectable since I started ADT, with 4th injection a couple of weeks ago.have consultant appointment in October, at 12 month stage, as a check up.

Will need to decide to continue ADT for another 6 months of not. Any advice on whether to continue or not?

thanks

[Nusch]

I‘m in a similar situation and I will go for 18 or even 24 months according to evidence and others recommendations. Currently on my third 3-month Lupron shot, next one coming up end of October.

[Runner1957 in reply to Nusch]

Thanks Nusch. Thats my initial thoughts to give it the best shot.

[London441]

What was your Gleason score and PSA at diagnosis? What was it after RP, and what did your post RP pathology show?

[Runner1957 in reply to London441]

Pre rp, psa was 18 then clear for 12 months then back up to 12.3

[Runner1957 in reply to London441]

Forgot, good old ADT. path showed 4 + 5 with clear margins

[London441]

So PSA was 18 at diagnosis then ‘clear’ (undetectable) post op for a year. Then when you started ADT a year later it was 12.3? Something’s missing. That is, it would take some time to rise to 12.3.

I assume it rose over that year gradually? How often were you getting tested?

Also, clear margins the only info on the pathology report? No extracapsular extension, seminal vesicle invasion etc?

[Runner1957]

PSA went from June 2020 at 1.0 to 12.3 at the end of Sept 2020. I started ADT shortly after this and the 37 radiotherapy sessions a couple of months later. Since starting the ADT my PSA has been 0.01 which I get checked every few weeks. Originally my PC was discovered by a PSA free ratio blood test as my PSA was not that high.I dont have any further information regarding pathology except the RP surgeon stated that the margins were all clear at time of surgery.

[London441 in reply to Runner1957]

I’m still confused about the timeline. If you’re getting a ‘12 month checkup’ in October and you began ADT ‘shortly after’ the 12.3 PSA test in September 2020, October 2022 will be 2 years later, not 12 months.

Also, your pathology report surely had more information than just clear margins.

No matter I guess. What is known is that you had 4+5 with a very fast PSA doubling time leading up to treatment. I would definitely stay the 18 months.

[Tall_Allen]

With a positive pelvic lymph node, you should continue ADT for at least 2 years.

This clinical trial also adds apalutamide to ADT:

clinicaltrials.gov/ct2/show...

[Runner1957 in reply to Tall_Allen]

Thanks TA really appreciate the advice. I will see if I can access this in the UK.

[Tall_Allen in reply to Runner1957]

Probably not in the UK, but maybe your consultant can figure out a workaround.

[Runner1957 in reply to Tall_Allen]

Looks like its available from the NHS with ADT but for castrate resistant patients so might be able to get it privately so have emailed the company for help and advice.

[Brysonal in reply to Runner1957]

BUPA are paying for me to have Apa and I am hormone sensitive so can be got in the UK privately is my experience.

I have monthly Degarelix shots and daily Apa tablets.

Good luck

[Runner1957 in reply to Brysonal]

Thanks for the info and good luck.

[Brysonal]

No prob. BUPA said Abi or Apa were instant authorisation for me but Enza interestingly would have needed special authorisation.. anyway Apa was my call.

It is v expensive and though I’ve paid for a lot of out of pocket treatment and nearly bought my first months in Finland decided to wait till back in UK a week later and let BUPA pay! When I pick it up I have a train journey and feel like I’m carrying a precious cargo!

[Runner1957 in reply to Brysonal]

Thanks. Is it tablet form?Roughly how much was the cost?

[Brysonal]

About 3,000 a month.