Compiler--PSA update

The PSA keeps climbing. Here's what I wrote a friend:

>>>>>>>>>>>>

 

I got my PSA today. Not good, but the increase is much slower. You may recall I went from 5.86 to 9, over a 53% increase from 10/29-11/30. Well this latest draw was on 1/2/13 and it is up to 10.08. This is a 12% increase, a doubling time of about 6.7 months. The previous represented a doubling time of 1.7 months. So, although the trend is up, nice to see a huge slowdown, percentagewise. I am very surprised it wasn't a much larger increase.

>>>>>>>>>>>>>>>>>>>>>

 

 

 Also, I have not been exercising much and I've been eating crap, which is about to end. So, do you suppose eating crap and not exercising is actually GOOD in fighting cancer?

<G>

 

Mel

David:

Frankly, anxiety or no anxiety, I personally would not wait until my PSA gets anywhere near 40 and do nothing. But, that's me. We all must make our own decisions.

I have no lingering doubts that HT is the next step. If my scan results show mets, I don't know if that changes anything (anybody know?).

In fact, what happens if you get Mets? What is your next step?

I was expecting to start HT months ago, But at least twice I did a final confirming PSA test and it went down. So I would get a reprieve.

That last big increase has eliminated any more reprieves. I'll get my scan results soon.

Mel

 

David a rising 40+ PSA post prostatectomy and post SRT is evidence of mets. I assume when you say "i am still comfortable with this plan, as long as there are no evidence of mets." that you mean "visible" evidence in imaging?

Peace...

Tony

Mel, so sorry to read about your latest PSA and that added worry and anxiety that it brings for you. You have done your homework and are knowledgeable in what the next steps could be...John and I wish you well as you wait for your scan results, and truly hope that you will get a reprieve from the relentless of the beast.

tony - my oncologist is very experienced, and only see patients with advanced PC and BC. he has seen other men with post srt psa of 100 with no evidence of mets. feels there are probably mutiple micro met sites that collectively are giving that total. also explains why there is no absolute doubling time, because each site is doing its own thing, so to speak. i am not the only one here at hw in this situation, and the other 2 men that i know of, their doctors are taking the same approach, so my doctor's thinking obviously isn't the lone ranger.

david

Mel. Sorry to hear about the rising PSA. HT is not the worst thing in the world. My husband has only some mild leg pain as a result.

David has always said that he will not do HT but will jump straight to chemo to preserve his QOL.  my take is is Dr. is honoring his wishes.

Mel
Sorry that your PSA is going up, but glad the rate is slowing down. I feel like I'm behind you by a couple of years, and this afternoon I'm seeing my urologist for a discussion of SRT with/without ADT. I know that hindsight is not a good thing with this disease, and I try to never look back at my choices, but since I'm now facing one, is there a reason you chose to not do ADT along with the SRT? Not that it would have necessarily made any difference in your situation, but just wondering what your thoughts were.

Reachout:

Very good question. First of all, if you go back to my post-surgery pathology, we hit the first of many grey areas in this disease. With a small focally positive margin and a G4+3, the team at Ford Hospital said I did not have to do SRT. They didn't recommend it since many folks in my situation never have a reoccurence. Umich said they would have recommended radiation.

So, now the PSA rises and I needed SRT. Once again, it was suggested by Ford that I just do the SRT as many people get cured with the SRT. Again, why subject yourself to such a bombardment of treatment? Of course, the answer is that maybe you should hit it as hard as possible early on. Incidentally, this time Uich concurred for me to just do the SRT.

This was in 2011. I wonder if that thinking has changed. It does seem recent research results tends to argue for the SRT/ADT combo, with fries and a soft drink!

Mel

f8 - you always have it wrong with me, so lets try this again. i have never said i would refuse HT if that is what my dr thought best. he does not, and still does not promote early ht use. it was his suggestion, not mine, to consider chemo in order to shock the remaining PC when he feels the time is right. perhaps now you won't confuse others with what my situation really is. you always have it backwards.

tony/casey - remember, sonny's case and numbers are almost identical to mine. his doctor and my doctor's approach has almost been identical. yet i never remember seeing sonny getting jumped for his situation, just mine. that kind of tells me something

sonny has had some elaborate special tests to look for mets, which i havent had.  my dr and i discussed the very same tests, and my dr. didn't feel that it woud benefit me or him, to have the tests done, as it wasnt likely to show up anything at this time.  also, and i am happy for this part, sonny doesnt deal with all the chronic pain and chronic fatigue that i have suffered with, as the result of severe radiation damage, and the need of having the urostomy surgery.  so he is not dealing with extreme QOL issues, these items are a big concern to my doctor and is one reason he is reluctent to push a treatment with QOL issues without the certainty of benefits to me.  i am thankful that for now, sonny has been able to continue a full and useful life.

my oncologist has made it clear from the front, that with a fast rising psa prior to dx, fast bcr post surgery, then fast bcr post srt - that this a very aggressive cases where little can be done to effectively slow down the cancer.  he said these are the rare and difficult cases, that don't follow the normal rules of progression.  i have known this complication from the start, and so far, my case has acted very uniquely like described.
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this is mel's thread, i only made a suggestion to mel originally in this thread, its about him, not me.  i won't further comment on this thread

david

Post Edited (Purgatory) : 1/8/2013 2:30:33 PM (GMT-7)

David, I just asked a question. If you don't want to state what your next action is or what will trigger it, you have no need to share it. I haven't been around as much as I used to so I am not fully up to speed with your's or Sonny's cases, the similarities, etc. I believe I do recall that Sonny did have visible bone mets that were discovered by scans and treated with radiation, detected with a much lower PSA than 40, and that it provided some relief.

I do think you just stated some pretty huge differences in yours and Sonny's journeys that made me ponder the question...

Still, I apologize to you for asking. I did not intend on receiving the response as such, nor angering you. I thought the question was relevant.

@Mel,
Mel there are many new hormonal therapies that are working wonderfully. We do know that they work best earlier than later. Studies I am seeing state that when hormonal therapies are successful at bringing the PSA in advanced cases below 4.0 ng/ml that prognosis is significantly improved, particularly when mets are detected. I am seeing promising information on using Xtandi as an AR in place of bicalutamide (Casodex). This still with an LHRH Agonist such as Lupron. There is also another study doing the same with TAK-700 as an AR in place of bicalutimide that is due out this winter. Dr, Hussain is one of the study coordinators and you might ask about a substitution for bicalutimide.

That stated I think even on a standard protocol, LHRH Agonist+Bicalutimde, will achieve the goal and possibly get you back to undetectable. The goal of the studies is to see if Xtandi or TAK-700 will work longer.

All the best...

Tony

What is this idea that this is "Mel's thread"?

While it is bad form to hijack a thread, I don't buy the concept that someone "owns" a thread. Some of the most interesting threads might start on one topic and then veer off on many interesting sidelights.

So, everyone, feel free to post as desired.

Mel

"I have no lingering doubts that HT is the next step. If my scan results show mets, I don't know if that changes anything (anybody know?)."

HT would most likely be the next step if scan identified something. What version HT would be very different depending on the doctor. I would imagine with your relatively low psa that it would be unlikely that anything would show. Depending on how much info you and your docs want, you could have more sensitive scans done.

Spot radiation combined with HT is always an option if something does show up.

Hang in there.