How many G9ers have been, or are in, the .0 club? (edited)

As we wait for my husband's next psa test in a month which will determine what his next treatment will be, I would love to hear some positive stories of other G9ers. Especially if you chose RP as your first treatment. Whatever my husband's journey will be, hope and optimism make the waiting and trying to live in the present much easier for me, even as having a handle on what to realistically expect makes me feel more prepared and ready to handle whatever does come next....

Sophie,

I was a 0 after surgery...then a rise...some therapy...and then back to 0.

Hang in there..
Jerry L.

I didn't have surgery, so my experience with the Zero Club is a tad different. I did have the pleasure of residing there during my HT, but as expected, now that it's complete, it's rising and is currently 0.16, or 16 cents as my oncologist says. Goal is for it to stay below 50 cents...

Dr Lam's words were that if it says below 0.5 (50 cents) that we can pretty much ignore it. Over that amount, it's not necessarily bad, but we really need to keep an eye on things. Like you, my PSA was at a super low level during HT so I need to get comfortable with it being higher, although still at an okay level.

I've been thinking about how folks like us are in a different boat in a sense that other that had radiation get to watch it go down. But since we've had HT, we get to watch it go up. It's sort of like being in an auction and seeing how high the price goes before someone yells out "sold!"

I'm having testosterone and PSA checks every three months right now, with the next one in March.

I am a G9 and whilst I haven't had radiation or chemo yet, my treatment has been ADT (Zoladex) and then Xtandi in April 2014.
I was diagnosed in July 2010 with a PSA of 254, by April 2011 my PSA had dropped to 3.2. From then my PSA slowly increased (with some small decreases) until in March 2014 it reached 24, I then started Xtandi.
I know we are all different and drugs have different effect/reactions with us, also our cancers are all different but for me Xtandi has had a miraculous result so far.
March PSA 24 Xtandi
April 18
May 2.4
June 0.99
June 0.79
Sept 0.46
Oct 0.24
Dec 0.20
Scans taken back in 2010 showed mets in my ribs,pelvis and ankles. Subsequent scans have showed no advancement and in the last year have shown a decline in the number of mets in these areas and no new ones showing up. At this stage I am optimistic that for my stage we have a bit of control of my PC. We still have a number of options in the future to fire at the beast.
I am generally in good health and feel well, I have a few issues with the SE of the ADT but you just try to work around them as best as you can. I find the mental side is the hardest and it is always lurking in the back of your mind "when are things going to change".
I have said before the waiting for results is always a testing time and I am always on edge.
But considering my G9,PSA of 254 at Dx and bone mets I feel I am a positive story.
All the best.
Regards

Wingman, you're the dude I was thinking of, knew I saw a 0 here post surgery. Poster boy for surgery! Glad it worked for you!

Cheers, Doug

Sophie,
I just updated my signature with another 0 or <0.10. My surgery was in January a year ago.
Lots of positive stories here on HW for G9's with many more in the making!

Wingman,

Awesome...were you on any type of hormone therapy?

wingman63 said...
I was diagnosed with a g7 4+3 =7 before i had a RP in Dec 2012. After the patholigest report i was a G9, 5+4, a pt3a, high grade agressive cancer and microscopic invasion of the bladder neck,was i scared, u betchya. So far i have had 6 psa tests and they have all came back O.00. I have had no radiation or any treatment. I feel very lucky. My surgery was a open surgery and i guess a top notch surgeon. After 2 yrs i hope it continuos. Still haven,t figured out how to put my stats up

This is so weird! I am reading this thread and watching Jimmy Fallon in the back ground. They are playing pictionary. Literally at the very second I start reading the post from Wingman63, the guy wins pictionary by calling out Wingman! I mean to the second.

Back OT. I was diagnosed G9 5+4 with PSA 10.9 about Thanksgiving 13. I had surgery at Vanderbilt up in Nashville 2/19/14. down graded a bit to G9=4+5, but positive foci margin and pos. seminal vesicles. I have had 4 PSAs, two at Vandy <0.1 and 2 here locally (last one late August) both <0.01. I will soon have my 1 year PSA. Actually, I guess it will be in March because I had to cancel one in Oct.

Wingman, congrats on your continued zero! Love those success stories that give all G 9 ers hope and encouragement to not give up. Took me awhile to figure out where to put stats too. Go into profile at top of page and post in signature.
Beth for Gary

Thanks for the encouraging stories! It is so helpful to hear them. I'm sure I will be coming back to reread this post when we get the next psa results and know what the treatment will be.

This journey is so scary and confusing, and it's not one that I'm comfortable sharing the details of with my friends or family. Yet it's constantly in my thoughts. I am very thankful to have found this new family whom its safe to talk with.

yaamba, I'm sure you are a big part of your husbands health! My husband has very reluctantly confessed that he feels better physically than he has in years, and he believes it is the green shakes, and mostly vegan meals that I'm feeding him since his diagnosis. He loves meat, sausage, fat, sweets, and carbs. He doesn't like vegetables or most "healthy food". He went totally off the healthy diet for the holidays and began not feeling well again. So he's back on, and feels good again. I think he's chagrinned about it. LOL

You need to specify what is a zero, as you can see from the replies this far. I went for about 18 months at <.01. For the next 18 months it slowly rose to .06, still a zero by most standards. I decided to do IGRT to catch any strays in the Prostate bed.

It dropped to a .02 , but has slowly risen back to .07, and then down to .04, then back to .07. Still less than 0 by many standards, but there is still something producing the PSA antigen in there.

I'm almost 6 years post RP, so I am satisfied so far.

Good luck to you.

Goodlife

Redwing started a thread a while back for G9 crew that got so long it has to be given a second thread

www.healingwell.com/community/default.aspx?f=35&m=3182035&g=3182350#m3182350

Your post reminded me I had to update that thread

the original thread was

www.healingwell.com/community/default.aspx?f=35&m=2863652

Both are great threads to let us know we have many fellow G9 crew that are doing well years later.

In answer to your question I had 5 fractions of SBRT radiation that ended 10-20-14 with no side effects so far and my 3rd of 3 Provenge treatments ended 11-3-14.

My PSA was initially <0.01 and last one on 12-31-14 was =0.01

Thanks to sage advice from Tall Allen, the goal of doing the SBRT and Provenge overlapping was to leverage the abscopal effect

prostate-cancer.org/abscopal-effect/

If PSA remains undetectible after 9 months on Zytiga, plan is to go onto Intermittent Hormonal Therapy on Memorial Day 2015. That will also be 27 months after I started Lupron 3-28-13.

LupronJim