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Dr says no Ultra PSA for G9 bone met ADT

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Posted 10/28/2015 4:39 AM (GMT 0)
I feel good, except for ADT fatigue, bone loss, flashes, cognitive decline. Yes, guys, it is possible to be optimistic with a grim prognosis. I'm doing good.

I'm hormone sensitive; had CHARTED 6 docetaxel infusions. My port wasn't sealed when installed (blood oozing out of bandage) and I didn't know about possible infection. 2 weeks later I got septic shock, had 4 ambulance rides, ICU for total 31 days, heart valve, kidney, lung problems that have miraculously reversed. But, sepsis delayed chemo infusion #2 by 3.5 months, so there was a large time gap.

I want an ADT vacation. Sometimes it increases QoL and extends survival, too. Dr. thinks T will return in 9 months along with PSA rise so she's against it. Maybe, because her facility doesn't do ultraPSA tests -- which worries me because I may not discover recurrence til it's too late.

Sure would save Medicare $ from Lupron, Xgeva, etc if qualified patients got an ADT vacation.

I really like my dr, but should I consider switching to one who does ultra PSA? Maybe my current dr. knows best and I just have to deal with being on ADT forever.

Any comments or suggestions?
Posted 10/28/2015 11:21 AM (GMT 0)
Hang in there bro. I am 2 years 10 months out on ADT, last shot of Eligard was Oct 2014, and my T is at 40.5 ng/dL. I read that prostate cancer stem cells live for about 3 years so you may want to keep those boys tamped down real good for about that long. Just my opinion. I got my RARP and radiation at Crittenton.
Posted 10/28/2015 11:38 AM (GMT 0)
Wow. Welcome to the forum, and as we usually say sorry you need to be here but glad you found us. I've added you to the illustrious G9 Crew roster. It's a thread we started a while back as a gathering place for those facing a G9 diagnosis. It's a place to share and get support for some of the specific concerns G9s tend to have. In no way exclusionary, it's just that our issues tend to differ from most of the PCa folks. You'll find lots of us there, most doing pretty well. Here's a link to the current thread (there's also an earlier one linked in it that just got too long.)
www.healingwell.com/community/default.aspx?f=35&m=3182035&g=3182504#m3182504

To your issue... tough call. You list the same symptoms I'm enjoying with ADT. What a ride, and I wouldn't wish this on anyone. It would be wonderful to get off of it.

I'm on ADT as part of my primary treatment, neoadjuvant with radiation therapy. Lupron and Casodex were started in May 2013, so I'm about 2 and 1/2 years into the sentence. Final shot will be in November, running out about next March or so. My case is in the fortunately-rare arena of very high risk, so we're doing all we can with curative intent. No mets, PSA still <0.1, so happy right now. I'm hoping for a recovering T with steadily low PSA as this treatment wears off.

The CHAARTED study came out long after I began this regimen. Not sure how it would apply for me now.

Stay with us. This is a great group of guys, with a lot of shared wisdom and experience.

Jerry
Posted 10/28/2015 5:22 PM (GMT 0)
There's a lot of judgment that goes into the IADT decision. I would think you'd want at least a couple of years on continuous ADT after your docetaxel treatment. In the Hussain study, men with a lot of mets did better on continuous ADT. I don't know if there were any men in the CHAARTED study who took an ADT vacation after docetaxel. However, if the symptoms are intolerable to you, your oncologist may be willing to take you off casodex, and that alone might help you feel better. I'm not in your shoes, but my personal inclination would be to go in the other direction by adding some of the newer hormonal agents that may be available in a clinical trial.

I don't see why ultrasensitive PSA would be useful for you. You have multiple mets, so when PSA rises again is is likely to be in relatively large amounts. You are in a completely different situation from men who would use uPSA to detect recurrence after prostatectomy.

Karmanos has an excellent reputation.

- Allen
Posted 10/29/2015 12:31 AM (GMT 0)
Well, yesterday's dilemma to try IADT just went POOF.

PSA has been <0.01 for over two years, today's test shows 0.4

I'll see my onco Fri. Any comments or suggestions?



Allen: Thanks to you I have now read Dr. Hussain's results and am convinced.
Redwing: So glad you added me to the G9 gang, appreciate it
Trail guy: Good to know cancer stem cells live 3 years, thanks.
Posted 10/29/2015 4:45 PM (GMT 0)
Since it sounds like you will probably be staying on some sort of hormone therapy you might talk to your oncologist about ways to mitigate your side effects. When I was on hormones I was on two antidepressants to offset the sluggishness and fatigue. I took Fluoxitine (brand name Prozac) and Bupropion (Wellbutrin). I discontinued the Fluoxitine shortly after my last shot (theoretically) wore off but well before my T started to really recover but I still continue the Bupropion which helps with the lingering fatigue.

Several members also use Modafinil (Provigil) for fatigue. I tried it briefly myself and it does seem to be a more effective drug but even as a generic it is expensive in the US and insurance doesn't like to pay for it. I just checked the (useful) price checker at Goodrx.com and it found several local pharmacies that will sell Modafinil for about $7.50 a pill which is sort of expensive for a daily medication. On the other hand, when you compare that to the price of four dopio espresso macchiatos at Starbucks maybe it's not that expensive.
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