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Posted 5/19/2016 10:07 PM (GMT 0)
HW newbie here. I'm Larry and live in Ohio. I've lurked here
for almost a year and have have learned a great deal by just listening/reading.

I'm humbled by some of the courageous stories and awed by the depth of knowledge displayed by many of you. I don't know any of you yet, but I still consider you my brothers.

I'm in this thing to win. I won't bore you with my story as it's in my sig
below.

Thanx for being here.
Posted 5/19/2016 10:10 PM (GMT 0)
Welcome. You have to check the "Include signature" box for it to show up.
Posted 5/19/2016 10:10 PM (GMT 0)
Why didn't my sig line show?

Dx 1/13 Age 65 Right side 4 of 6 core 80-100%
Gleason 3+4+7 Left side 1 of 5 cores 20% Gleason 3+4+7
AS 2/13 – 9/15
Bx 10/13 and 11/14 both neg (PSA 10.8, 9.0, 8.8, 13.0,14.0,
17.6. 24.0)
Both neg bx sent to Johns Hopkins for review with original.
Neg bx's confirmed. Original changed to Gleason 3+4=7
rt side 3 cores 80%, left side 1 core 20% Gleason 3+3=6
9/15 6mo Elgard. Bone scan-neg.
11/15 thru 1/16 29 fractions EBRT PSA 5.3
2/24/16 PSA .3
4/08/16 PSA .1
Posted 5/19/2016 10:33 PM (GMT 0)
So if I understand correctly, you got a 6 month Elgard shot in September, hypofractionated IMRT starting November. But when was your PSA 5.3? And what is your testosterone level now? At any rate, you seem to be doing well.
Posted 5/19/2016 10:53 PM (GMT 0)
5.3 was 2 weeks after Eligard shot in Sept and just before
start of radiation in Nov. Doc's moved me to 3 mo Zoladex
Apr 22 for another 18mos.(2 yrs total)

Test was 2.0 in Sept.

Yes, I'm doing ok. However, this HT is tough stuff. BF is up
3% and strength is off. Moody, blah blah.

Post Edited (ljimd) : 5/19/2016 5:09:35 PM (GMT-6)

Posted 5/19/2016 11:08 PM (GMT 0)
Have you discussed cutting off the HT, or is it something you requested? There've been no studies that have shown a benefit to long-term adjuvant ADT for men with GS 3+4.

- Allen
Posted 5/19/2016 11:13 PM (GMT 0)
I was told the the protocol for over 20 psa (mine was 24)
was 2 years ADT and RT.

Maybe I should revisit this with the rad onc.
Posted 5/19/2016 11:53 PM (GMT 0)
Sorry - no, I missed that. That puts you in the high risk category, and there is an advantage to long-term adjuvant ADT for you. I'm impressed that your IMRT was only 29 fractions - there's no excuse anymore for longer treatment schedules.

- Allen
Posted 5/20/2016 12:12 AM (GMT 0)
I was originally told I would receive 45 fractions. It was
only after a discussion with a nurse on my 15th fraction
I discovered I was to get 29. "Oh you are halfway there."

I questioned the head of the rad department. His response
was, "Dr. XXXX increased your daily radiation because
you appear to be an healthy specimen." Hence 29 fractions.
Some answer huh?

I have done some research and 2yrs ADT seemed to be
the normal course.

I'm determined to train (I am/was an amateur competitive
bodybuilder) and diet my way through this ADT, but the hurdle
is very high.

Thank you for all your responses Allen. I hope to continue
to learn and even maybe contribute in the future.
Posted 5/21/2016 6:25 AM (GMT 0)
ljimd,
Welcome to the world of posting. Happy to have you join us. I have nothing useful to add to this thread, hell, I don't even understand much of what you and Allen are discussing.
Beth
Posted 5/21/2016 7:03 PM (GMT 0)
When I started my treatment in 2013, my rad oncologist prescribed 24 months of ADT (on top of radiation). But then the results of a big (Canadian) trial were announced (at a meeting). The study authors concluded that 18 months was as good as 24 months of ADT. As a result, my rad oncologist changed my ADT/'suffering' to 18 months. At the time, there was a lot of noise/publicity related to the study.
I once looked for a refereed paper describing the trial, but couldn't find it. However, I haven't taken a look more recently. Obviously, a published paper in the medical literature is of greater significance than a poster + press conference at a meeting.

Hopefully, others can comment on this issue.
Posted 5/21/2016 7:44 PM (GMT 0)
ljimd,

Welcome and happy you joined us.

Bobby Mac
Posted 5/21/2016 8:11 PM (GMT 0)
Thanks for the welcome posts everyone. I really
appreciate it.

Sailor - any shortening of this ADT sentence would
be a win win. I'll look for that paper.
Posted 5/21/2016 8:45 PM (GMT 0)
Sr Sailor-
You raise a good point - I don't know why the Nabid study was never published. The Nabid abstract appeared in 2013. It showed 18 months was as good as 36 months in high risk patients. It also included whole pelvic RT.

The latest study was DART 01/05, which proved that 28 months was better than 4 months, reinforcing the finding of RTOG 9202. EORTC 22961 also showed that 36 months was better than 6 months. On the other hand, TROG 03.04 RADAR found no difference between 6 months and 18 months, but they only used 66 Gy, which was probably inadequate treatment.

So my feeling is that with adequate treatment to the prostate and possibly the lymph nodes (where probability is high), 18-28 months of adjuvant ADT for high risk treated with IMRT is the right range. Eventually, we'll have better data.

-Allen
Posted 5/21/2016 9:12 PM (GMT 0)
Hello ljimd,

Welcome to HW. I'm like Beth, have nothing to add and don't understand as well!

You have come to a great site and many of our brothers and sisters have so much to offer!

You can see by my signature, I'm stage 4 and only had ADT2 since DX on 10-1-2012!!

Have a great day and keep fighting!

Dave in Bartlett, TN
Posted 5/21/2016 10:36 PM (GMT 0)

grandpaof4 said...
Hello ljimd,

Welcome to HW. I'm like Beth, have nothing to add and don't understand as well!

You have come to a great site and many of our brothers and sisters have so much to offer!

You can see by my signature, I'm stage 4 and only had ADT2 since DX on 10-1-2012!!

Have a great day and keep fighting!

Dave in Bartlett, TN

Back atcha Dave. Hang tough brother.
Posted 5/21/2016 11:51 PM (GMT 0)
Thanks Tall Allen for filling in those important details.

Hopefully, we have given ljimd enough 'ammunition' to start a discussion with his oncologist (Dr XXXX) the idea of shortening the length of his hormone treatment to 18 months.
Posted 5/23/2016 7:52 AM (GMT 0)
I may be mis-reading your signature statistics, but was your PSA of 24.0 drawn within 8 weeks after your 11/14 biopsy? If yes, this close timing may have been a contributing cause of the higher PSA. In my case of rising PSA's, I may have added 5-6 points to my two highest PSA's by taking them only 3 and 7 weeks after a biopsy. My PSA dropped back 5 points after 11 weeks. This likelihood of a temporary rise caused my radonc to treat me as a high-intermediate rather than a high, which reduced the length of my ADT treatment to 6 months. There are some other differences in our cases, but this timing issue may be worth checking and then discussing with your doc.
Jim
Posted 5/24/2016 4:02 PM (GMT 0)
ljimd - welcome to HT... sorry you have to be here. Good you got through the IMRT, but yes the HT is a long road. Since you did competitive body building, hopefully you have the will to fight the fatigue and keep at it. Good luck on your journey. Keep us up to date. Take care. -JR
Posted 5/24/2016 4:11 PM (GMT 0)
ljimd, welcome to the forum, sorry you have to be here. I have nothing to add, as it seems to already all be on the table for you.
Posted 5/24/2016 6:36 PM (GMT 0)

JimBear said...
I may be mis-reading your signature statistics, but was your PSA of 24.0 drawn within 8 weeks after your 11/14 biopsy?
Jim

17.6 PSA was Jul '15
24 PSA as Aug '15 prompting HT in Sep '15 before
start of IMRT Nov'15

Sorry JimBear, my sig line is a tad confusing. I need to clean
that up. Thanks for the heads-up.
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