Compiler Update --Decisions- and Care to Guess my PSA

Mel,

I really hated to see this...My best to you with your future decisions.

Hero

 

Mel

Sorry the number did not come in lower for you.

Now take a deep breath and figure out what the best thing for you is.

I believe the supplements you are taking are in line with the recommendations.

A suggestion and I know will be difficult for you - take a PCa off weekend.

Bud

sorry to hear that Mel. i asked my radiation oncologist about when to start HT after recurrence and he said "it depends" but he's not aware of any benefit to starting before PSA 4. but take that with a grain of salt because he didn't explain his position. good luck to you man.

ed

mel, well i certainly came in low this time around, didn't figure it would be over 1, but it is what it is as they say.

your doubling time seems to be in line with mine, around 8-9 weeks or so.

you still need to think long and hard about this whole starting HT now or later bit, i know you have two expert opinions that go in opposite directions. if you were seeing my oncologist, he definitely would not be suggesting you pull the trigger just because you went over the 1 mark, but then he's in the school of saving the HT for a much higher number when you might need it the most. if you do it now, and you become refactory earlier rather than later, you won't have anything to slow things down when and if recurrance shows it ugly head after taking early HT. That is part of the thinking in that school of thought. Plus, you have to decide if you want to deal with HT side effects now, or enjoy life as you know for a good while, until the number gets much higher, that is the trade off we have talked about before.

you are no longer in a curative situation, but a "control things" situation, so you have to really think through how your strategy is at this point. both doctors gave you a good opinion, so it shouldn't be that hard to trust one or the other. neither school of thought guarantees anything, just like our surgeries and srt didn't, so there is always that ultimate twirl of the dice.

i am in the same boat, sonny is in the same boat, a couple of other guys at least are too, and in the end, we have to go down the path that makes the most sense for each of us.

david in sc

David:

It is a VERY tough decision. As I think I posted elsewhere, Dr. Scholz's point is that if we start HT BEFORE the PC goes to the bones (and in my case it probably has not yet metasticized to the bones), THEN he claims there is a MEDIAN of 10 years before we have to do something else. He also believes in IADT (ie: intermittant) and the latest thinking seems to be 8 months.

But, of course, this is dependent on my having an excellent response to the HT. So far, like you, my response history has been dismal.

If I knew that I would respond perfectly and be off the HT after 8 months, it would be a no brainer.

Look, David, if the HT is just a bullet that might work for a short time whenever you employed it, then your argument makes perfect sense. Why use it now and impair your QOL? I wish there was more agreement among the experts. If I buy into Scholz/Meyers/Liebowitz and others, then I should be starting HT PDQ. If I buy into Hussain and your doctors and others, then I would wait. Actually, at the rate things are going, I will be over 10 (PSA) in 9 months. But, to paraphrase what you say, medicine is an art and we like to treat the patient, not just a number.

But part of treating the patient is to present that facts, as well as taking into consideration the patient's current status. I suspect HT will weaken the bones and muscles and cause additional aches and pains. You are already suffering greatly in that area. Your priority should be to try and ascertain and correct the cause of your pain. I am not in the same situation. Different patients, so maybe different treatments.

Maybe Scholz will also say there is no rush. I doubt it. When I saw him, he did say that when the PSA hits 1, we had better seriously consider HT.

I am on a few mailing lists, and plenty of patients are in our boat!

This is not easy!

Mel

mel,

 sorry to see the 1.38. you are in a bit of "pickle" as to when to start ht. i would think you should be going on monthly testing now. I think you have a bit of time yet,but the day is comming. dr. hussain seemed to look at doubling time more than a certain number. when do mets typically show up?... 4,10,20? well, we were very surprised when my mets showed in the 5.0-7.4 range. Kinda like playing poker in vegas isnt it. Iam almost 10 weeks into my ht and i have to say its been going very well so far. I had been dreading this for almost 2 yrs,but now thats its underway, that fear is gone. also, its comforting to know that my psa should be .1 by thanksgiving. will the s/e get worse? probably, but like all previous tx s/e you just learn to adapt...its what we do. hang in there.....turner

Mel,
Read chapter 10 (pages 95 - 102) of Dr. Scholz' book "Invasion of the prostate snatchers" before talking to him on the phone. That covers androgen suppression.

RalphV

Mel,

I guess you''ll need to find room for me in that decision boat. You asked on another thread what my latest PSA was, but I didn't have the paperwork at hand. Goes like this so far this last year, as best I remember:

07/2010 (post RT eval) <0.01

10/2010 (GP) 0.020

12/2010 (Uro) <0.1  (not ultra sensitive, lab rounds down)

04/2011 (GP) 0.094

06/2011 (Uro) 0.2

09/2011 (Uro) 0.4

09/2011 (screening event test 10 days later) 0.48

Uro is not talking HT yet. He had implied it would be September, but moved the discussion to the December appointment. He has pulled me back to 3 month visits from the previous 6 month interval.

Tried to get in to see two nationally-known oncologists - neither accept PCa patients until HT has been done. Still working on that, but my insurance is picky (to be polite) at this stage.

I'm just behind you.

 

Mel, sorry to hear about your rise in psa. I wish you all the best in your future treatments. This is a good place to let out some of that steam.

Neal

Mel (compiler)

I wonder what the protocol of your SRT was.

Looking into the PSA chronology the doubling has never stopped since Mar2010. The last increase at the 6 months mark is indicative of SRT failure and that the cancer may be systemic at far places.

The only possible other reasons to substantiate the results is that the radiation caused an inflammation (very common with RT) which naturally causes an increase in cells activity and subsequent increase in PSA.
The above could last long periods which make many doctors to take a stance of “wait and see”.

It is also possible to think that there was an error in the SRT protocol. Some do not include radiation of the iliac lymph nodes which are the areas where oligometastatic cancer hides.
I would recommend you to take into consideration the above and check on the matter (any symptom?). Nevertheless, HT will always be there for you if needed. You do not need to rush but you should be ready for a start in case no significant variation of PSA trend is seen until your visit to the doctor in January.

Hormonal treatment is nothing to worry about. The side effects are mild to the majority of guys on it and it gives us the pleasure of seeing low levels of PSA and a sense of control of the bandit.
I am on HT since Nov2010 with mono blockade Eligard and my PSA is down to 0.03, the lowest level I ever seen in my eleven years of journey with PCa.

Wishing you luck in your continuous journey.
Baptista

Mel

Brother you know what is best for you. You know I wish you all the best with your journey and my and my lady wife prayers are with you

I got this from James C. signature.

Gonna Make Myself A Better Man tinyurl.com/28e8qcg

I am finding more and more of a personal meaning in the song every time I listen to it.

As Sonny says - hang in there brother

Bud