First post-ADT followup. So far so good ... but it's early

[fireandice123]

I just had my first followup with my MO since I started my ADT vacation.

Just to review:

- Dx'd in October 2017. PSA 56. I had some mild BPH-like symptoms but nothing else. I've never had any other symptoms. The prostate biopsy confirmed the Dx. All cores showed cancer. One core was Gleason 9. A couple were Gleason 7 with the rest Gleason 8. Bone and CT scans showed small pelvic bone mets. Lymph nodes were clear. Started ADT with Lupron and Zytiga/prednisone. PSA dropped to 0.1 after about 4 months and to undetectable after about 6 months.

- Went on a ADT vacation after about 13 months of Zytiga and 15 months of Lupron.

- After about 9 months PSA started to rise. Bone and CT scans showed the cancer appeared to be active but had not progressed any further than it was at Dx. As an aside we wanted a PET/Axumin scan but my insurance company wouldn't cooperate so we went with the Bone and CT scans. This was the first round with my insurance company. More to come ...

- Started Lupron-only. Had 20 rounds of RT to my prostate and my pelvic bone mets with the intention/hope that it would put me into remission. Since I have bone-only mets with a low metastatic burden there is evidence that I would benefit from RT. The protocol was that I remain on Lupron for 18 months after RT. Round 2 with my insurance company. They refused to pay for the RT. Went through 2 internal reviews which they declined (of course they did). I then went to an independent external appeal and they were forced to pay for the RT as appeal determined that the RT was medically necessary. I've since switched insurance companies.

So now after this rather long review we're to the point of this post . I'm now about 20 months since RT. Along the way my PSA dropped to 0.2. My last Lupron shot ran out in August. My current PSA has fallen to 0.1. I realize that it's early. My T is still low at 11 and the real test will be when my T starts to rise. This time my T isn't rising as quickly, if my memory is correct, as it did with my last ADT vacation when it rose fairly quickly to about 800. Still, it's good that things are good at this point. ADT SE's aside I feel good. It's certainly better than the alternative.

So now I'm onto year 5 of this journey nobody wants ....

Thanks,

[treedown]

Good luck. Stopped all ADT as of last Saturday. See my MO in Dec. Hoping for the best as well.

[Tall_Allen]

Were you also taking Zytiga with the Lupron until your vacation?

[fireandice123 in reply to Tall_Allen]

No, just Lupron.

[Gearhead]

So, in hindsight, are you pleased that you went on the ADT vacation, or do you regret doing that?

[fireandice123 in reply to Gearhead]

Not at all. This is my second vacation and I feel better about it. The first was naive me thinking my PSA went down so low that I wanted to see if it would stay down if I just stopped the ADT. I sort of needed to do it to convince myself that I really had cancer as weird as that sounds. I never had any symptoms and a part of me thought there was a mistake and I really didn’t have cancer. Crazy I know. Before cancer I never had any health issues and it’s been hard for me to come to terms with it all.

This time I’ve taken steps (RT) that hopefully will keep me off ADT longer rather than just stopping and see what happens. I feel more confident. I have no illusions that eventually I’ll have to go back on ADT at some point but I’m going to fight to stay off as long as I can.

[Gearhead in reply to fireandice123]

Thanks for clear answer to my question. " I sort of needed to do it to convince myself that I really had cancer as weird as that sounds." I can identify with that instinct, so it doesn't sound weird to me.

[Cooolone]

With metastatic disease and such high grade Gleason cell type identified, I'm finding it hard to understand why "lifetime" ADT wasn't prescribed... Additionally, why the vacation? Was it due to adverse side effects or just because? You note ADT side effects aside, you feel good...

You've already demonstrated that in the absence of controls, the disease you have is robust, reappearing and progressing. So why then would you let it breathe? Not saying you're doing anything wrong as it's all personal and your decisions are yours, and that makes them right! I just want to understand your choice(s).

Best Regards

[fireandice123 in reply to Cooolone]

I really don’t like ADT, the SEs, not that anyone does. I know there are risks but I’m willing to try to get off it rather that conceding defeat. And my MO and RO have been supportive. They are the ones that first suggested it.

[CAMPSOUPS in reply to fireandice123]

Coolone eloquently responded as I would if I had some brain cells.Your choice of course. Having a MO who suggested it makes it even harder to decide. Not what one would expect from an MO with your diagnostic parameters. Your's left the barn as we say. Bone mets. You haven't even had chemo.

I guess just keep a really close eye on it if your going forward with no tx.

Keep us posted.

[j-o-h-n]

I wish you fire in the wintertime and ice in the summertime. And I wish you a healthy "vacation"...... A journey nobody wants (or deserves)......

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 10/22/2021 11:18 PM DST