Well fudge, new member, Gleason 9 (5+4)

Red:

You can put me on your list 4+5 ... keep going at it aggressively.  Remember the movie Halloween, when you're screaming at Jamie Lee Curtis -- "he's not dead, make sure you kill him."  SAME THING HERE ... go after it hammer and tong

Glad to see progress and an aggressive plan

Ray

Note on Redwing's Farragut quote:

Farragut did not say "darn the torpedoes" nor is that what Redwing typed. The forum software that bowdlerizes our comments is no respecter of the necessity of certain words in historical context.

littlenm said...
Redwing....I don't suppose it matters much but we were diagnosed in 2012 not 2006 as stated in your list

I am pretty sure that there are more of our "club" that are not on the list as well. Jerry L. was one of the first people on the board to welcome me and was a huge help n calming me down as he too was a G9

Nancy

Got it! Thanks for letting me know.

Hey bertb, thanks for the update. Here's to continuing low PSA readings!

It looks like I'm on a very similar path to the one you've trodden, just about two years behind you. I just finished treatment #8 yesterday, and so far so good as far as serious side effects.

The minor annoyances continue to accrue - hot flashes (every 1/2 hour), fatigue, some "shrinkage", very minor burning sensation urinating sometimes, that sort of thing. Nothing yet requiring added treatment.

My RO said they'd monitor PSA every 3 months after treatment ends, and won't really know how effective the IMRT was until I come off of the ADT2. Nice, two years before any real feedback about the primary treatment's usefulness. I guess that's just part of the package when we select radiation as primary therapy. I've seen posts indicating some people prefer surgery just because they get quicker feedback and can "know" what was in there through pathology.

There must be some sort of Zen of PSA to deal with PSA anxiety...

Hang in there!

Michael, my understanding is the low PSA reading while on HT is telling you the treatment is working. A neighbor of mine was dx'd with Pca the same month as I was. We each had the same Gleason count, however his PSA was higher then mine. Unfortunately HT didn't work for him at all and he passed one year after being dx'd. So, be happy it's working and doing the job it is supposed to do. The SE's come with the territory. Here's wishing you and everyone else dealing with this crap better days ahead.
bertb

Nick,

I am so sorry to hear about first the cancer and second the G9. I too am a G9 and there are a few of us here on the forum. If you would like to visit, click on Devastated and find my email address and send me an email with your contact information. I would be more than happy to visit and help you navigate the Class rapids.

I have made it two and a half years and still non-detectable after many procedures. Take a very long deep breath, there are so many amazing oncologists, procedures, prescriptions, etc that will help you fight this insidious disease.

Best wishes my friend.

jetskifisher: Thanks, you're on the list too. This is more interesting than expected. There is quite a spread between the diagnosis dates for the 4+5 group vs. the rather newer 5+4 group. This forum has been really important in keeping my spirits up. The positive attitude here is absolutely infectious!

To this day I can't believe I've landed in this situation. Every day I lay in that radiation machine, and it just feels surreal. Like, "Is this really happening? Really?". And then, bzzzzzzzzzzzzzzzzzzzzzzzzz.... says the machine.

Helping each other deal with this harsh reality in a positive way has value beyond measure.

This is a quick update on my thread:

The radiation treatments are going pretty well. Having completed 28 treatments to pelvic lymph nodes and prostate area, I'm into the "boost" phase concentrating on the prostate and SV only. I'm counting down now, with 15 session left including today. The very full bladder has been the most uncomfortable part of every day's treatment experience.

Minimal complications, just some nighttime urgency, so up 3 or 4 times a night. Really no other problems, at least attributable to RT.

Hormone therapy is not too bad, though the hot flashes do get a little tiresome. I now have extreme empathy for what my wife has been dealing with for a couple of years now.

And, I seem to have developed some sort of addiction to this HW forum. Surely a diverse and active forum, with many people experiencing different aspects of this disease. The mutual support is invaluable.

We even signed up for the December GFMPH cruise, so we're really looking forward to that!

Another update, PSA anxiety time already.

With 3 radiation treatments left, Monday I'll have a blood draw for a PSA check. This is really to see if the ADT2 is fully effective in reducing PSA, since it's seems too early to know if radiation has done much yet. If the PSA is low to undetectable, then we just stay with the current plan. If it's not low, well, then I suppose we'll need to change the anti-androgen probably. I already know the Lupron did a great job knocking down testosterone to less than 20. This is mostly in preparation to evaluate possibly adding tamoxifen to prevent gynecomastia from the Casodex.

The cancer center has its own lab, so I hope the results will be quick. It's a life-long thing now, I guess, these PSA checks and their implications. I hate the waiting....

Redwing,
Yes, I've been following both your progress and Nick's and thought that you were to receive your imrt diploma on the 26th & a few days later was to get a psa test--ass backwards due to lupron or most likely "old age". Lol.
I had my psa test exactly 1 month after I finished my 44 imrt treatments..Your Dr must know what he's doing; running the test before you are finished with imrt since I don't...If I were you I would be thankful that your Dr is in your corner; he trying his best in your behalf; you must have impressed him! Anyway, don't stress out about something no one except the doctor understands..Remember, never "fear" only high anxiety..We are in your corner!
Bill

Good news for once!

My PSA test today (basically, a test at end-of-primary-radiation) came back as "undetectable", <0.10!  It's a "zero"!!

The last reading before treatment in May was 9.67, so this is a really good drop.

This was the best case outcome I was hoping for.  That says the Lupron and Casodex have completely squashed the PSA, even with my radiation-angered prostate doing whatever it does.

I saw some study suggesting best success rates if the end-of-radiation value is <0.5, so I'm there.  This is just such happy news...

We'll probably just continue the ADT2, rather than remove the Casodex to see if PSA goes back up.  Don't want it to go back up.  So, leave well enough alone, I'm thinking.

It's great to actually hear something encouraging from my medical oncologist.  :)

Drinks for the house!

Redwing,
Congratulations! Way to go. It is good to hear something good from your medical oncologist. I think oncologists can be a bit gloomy at times, at least for me.
SC

..Redwing, Good News..

..Glad you are able to take in that breath of fresh air. Wishing you the best for a very long time..

...............Appleseed Nick.....................