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Calling all pT3 Club or "The Horse Has Left The Barn Boys"

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Posted 6/24/2016 6:48 AM (GMT -6)
Newtopc,

Welcome to the group!

I see you have been around for quite some time, so you know most of the information that has been written on this site.

Best wishes to you!

Bobby Mac
Posted 6/24/2016 8:02 AM (GMT -6)
Add me to the list as most it hit me hard. working to get over it and live the best I can working on positive attitude.
Posted 6/24/2016 3:03 PM (GMT -6)
Fly with me,
I added you to the club back on 4/1/16. Check on page 6 of this thread.

Hang in there, looks like your PSA is going down. Whip that beast back into it's cage!!! yeah

If you want to add something to the thread or ask a question to the group, look it up by using the Google Custom Search on the header at the top right of this page. Type in "Calling all pT3 Club". One of our club will jump in or someone else that reads it. We are here for you 24/7!!!

Bill from Florida cool
Posted 6/24/2016 4:33 PM (GMT -6)
Fly With Me-

Sound like an airline commercial - did Eastern Airlines use that one?

Anyway, Welcome to the group!

Best wishes to you!

Bobby Mac
Posted 7/13/2016 5:07 PM (GMT -6)
Everyone please welcome Deon124. He just received his pathology report and qualifies for membership in our club so I added him to the list.

Deon124, as you can see, you are not alone with your results. Our little club keeps growing every month. If you have any questions, concerns or you just want to vent, go to the Google search at the top right hand side of this page and type in Pt3 Club and post to this thread. Someone will pop in to help. We all know what it is like to have been staged pT3, which means the tumor was just coming out of the prostate capsule.

Good luck and welcome to the pT3 Club. Membership card and badge are in the mail!

Bill from Florida cool
Posted 8/19/2016 10:08 AM (GMT -6)
Wow, it's been a year since we started this "little" club.
Thought I would bumped it to top and see how you all are doing.
My wife and I are more than thankful, that I'm still pulling undetectable psa!

Hope your summer has been healthy!
Mike
Posted 8/19/2016 11:22 AM (GMT -6)
My husband is eligible to be a part of the club. Fortunately or unfortunately....

He was dx at age 57. He had a DaVinci in 2010 after a fluke found aggressive PCa with the prostate 90 percent filled. Gleason 4+3 = 7. He was asymptomatic. We got the diagnosis of PT3b with left seminal vesicle involvement. He had 39 radiation treatments soon after and was cancer free for about about 3 years. Then the PSA started to creep up. It started doubling every six months and this last report has it more than doubling in 3 months. It's still low-ish at 1.33.

We are investigating our next options. He has low T so I"m not sure ADT will work with him? Some have suggested Chemo. Time will tell we are open to all options.

Post Edited (Wife_on_Alert) : 8/19/2016 11:42:16 AM (GMT-6)

Posted 9/6/2016 1:06 PM (GMT -6)
I had my two year post surgery follow up meeting with uro and PSA test today, another <0.05.
The uro was pleased and changed the follow up's to yearly tests. Life feels good when PSA anxiety releases.
Posted 9/6/2016 3:45 PM (GMT -6)
Hello fellow T3'ers. Looks like we have a club within a club starting! DaVinci surgery April 2016 (58 years old), started hormonal in June and S. Radiation in August. Tried to see if there were enough people with Ductal, but it looks like that is a little to exclusive.
Posted 9/6/2016 6:46 PM (GMT -6)

Dr WHO said...
Hello fellow T3'ers. Looks like we have a club within a club starting! DaVinci surgery April 2016 (58 years old), started hormonal in June and S. Radiation in August. Tried to see if there were enough people with Ductal, but it looks like that is a little to exclusive.

Well, don't be looking down on the rest of us regular T3 guys just because we didn't win the ductal lottery. Just winning the T3 lottery makes us exclusive enough! yeah
Posted 9/12/2016 1:33 PM (GMT -6)
Wife_on _alert,
I added your husband to our club. I am not on HW as much as I used to be lately but just noticed your post today. If you have a comment or question, just look up this thread by typing PT3 Club in the Google search at the top right of this page near where it says Join Healing Well.

Sorry to hear that you and your husband are still fighting this disease.

Dr Who, I did add you to the list already so jump in anytime you would like.

Gremlin, Great news with your latest PSA results. yeah

Bill from Florida cool
Posted 11/4/2016 5:56 PM (GMT -6)
Just checking in, haven't been on HW lately.

Any new members out there who would like to join our
little pT3 club?

Bill from Florida cool
Posted 4/15/2017 6:06 AM (GMT -6)

Big Mac said...
Any new members out there who would like to join our little pT3 club?

I guess that would be me. My credentials are listed below.

Dues = 2X SVI... AUS surgery in three weeks, then begin IMRT.

Lupron for the time being... Oh yeah, and my wife has stage 4 lymphoma.

It looks like the clubhouse has been empty for a few months. Still accepting new members?

-Rob in Florida
Posted 4/15/2017 6:49 AM (GMT -6)
Welcome aboard RobLee! I have added you to "Da Club".

It looks like we have a lot in common ex. I live near W Palm Beach, I had an AUS installed 3 years ago, I am semi-retired and I am 66!

Your screen name isn't short for Robert E. Lee is it? I am also a Civil War buff.

The purpose of the Club is simple, you have a concern or question, look up the thread by searching in the Google search at the top of this page, post your question and one or more of the club members will try to help you. Of course, non-club members are welcomed to jump in with their help also.

I have recently left the Zero Club after 4 1/2 years and now have a rising PSA again. I have an appointment this coming Wednesday in Orlando with my surgeon Dr. Vipul Patel to discuss my next move. He, of course doesn't do radiation but wants to talk to any of his patients that has recurrence.

Looks like I will be using our club myself for advice soon.

Good luck with the AUS. I had one installed almost 3 years ago to the day. If you have any questions, feel free to email me. You can get my email in my profile or by clicking on the envelope by my name Big Mac to the left in the margin.
<-------------------------------

The biggest advise I can give you now is to go to Publix, buy 2 bags of frozen peas, any brand, any peas will do, put them in the freezer and use them, one at a time, after surgery to help with the swelling. You can thank me later. yeah

Bill from Florida cool
Posted 4/15/2017 7:33 AM (GMT -6)
RobLee-

Welcome aboard and welcome to Florida -

BigMac-

I have an appointment with a Cleveland Clinic MO (CC) Monday - While I am not yet sure if the radiation worked I want another opinion on how long to stay on Lupron - So far I have 4 different answers from 4 different MD's -

A little disappointed that my CC URO said MO specialized PCa, but when I looked MO up he does all cancers. I'll keep appointment to see what he says.

Bobby Mac
Posted 4/15/2017 10:58 AM (GMT -6)

Big Mac said...
Welcome aboard RobLee! I have added you to "Da Club". It looks like we have a lot in common ex. I live near W Palm Beach, I had an AUS installed 3 years ago, I am semi-retired and I am 66! Your screen name isn't short for Robert E. Lee is it? I am also a Civil War buff.

No, I'm probably closer to Lafayette than Lee (that's another war). It's an abbreviation of my real name that's easy to remember and makes a handy screen name.


Gulf coast/Tampa bay area here. Thanks for the welcome! It'll take me a while to get to know everyone (Big Mac and Bobby Mac are too similar for my Lupron brain to discern at this point).


Big Mac said...
Good luck with the AUS. I had one installed almost 3 years ago to the day... The biggest advise I can give you now is to go to Publix, buy 2 bags of frozen peas, any brand, any peas will do, put them in the freezer and use them, one at a time, after surgery to help with the swelling. You can thank me later.

Thanks, but I'm not without experience in that department. I've had a couple surgeries to the scrotum, including an orchiectomy five years ago. The frozen corn/peas were a godsend. Good luck working thru your own issues. This is not how we planned to spend our retirement, eh?
Posted 4/15/2017 5:29 PM (GMT -6)
RobLee,
Funny thing is Bobby Mac lives about 1-2 miles from me. Sounds like he is still on Lupron. I guess I'll find out Wednesday if I will begin using it.

There are a couple of prostate cancer walk/runs held over on your side of the state. Zero Cancer started one in Tampa and Morton Meese Hospital has one in Clearwater, usually in September. The Morton Meese event is held in Clearwater and the race route goes over the bridge heading towards the beach. They have it around 6:00 P.M. as the sun is setting. A pretty neat event with free pizza and survivors shirts and gifts. I drove over there a couple of times to participate. Lupron Jim signed up for it but wasn't able to go a few years ago so I picked up his shirts for him.

I sure am missing Lupron Jim, knowing I'll never see his smiling face again.

Bobby Mac,
Looks like you have your PSA where you want it now. Maybe you can get a vacation from the Lupron soon. Sounds like you may need to find another doctor. I understand a lot of RO do all cancers. I will ask Dr. Patel Wednesday for a referral.

Bill from Florida cool
Posted 4/15/2017 5:51 PM (GMT -6)
Mmm... I didn't mention it, but I had a severe leg injury a decade ago that restricts my mobility, so the walk/run is probably out. As it is, 2015 was the first year that I could walk into a supermarket without wearing a leg brace. We all have our own cross to bear, but bone loss is my biggest concern with regard to the Lupron therapy. I may be getting Prolia or something, as I'm already osteopenic from meds I take for another problem. This stuff certainly gets complicated.

I take it Lupron Jim has passed on? (I'm still new here). That's a problem with aging. Since 2010 I've lost half of my friends and most of my family. We now live in a seniors community and somebody dies here every day (not joking)... forgive me if I'm too glib.

Now that my wife's chemo has just ended, I have procedures lined up one after another. We're headed to Universal Orlando for the first week of May, so we can have some fun before I go back under the knife again next month.

Nice chat! Thanks for the info.
Posted 4/15/2017 6:41 PM (GMT -6)
Hi Bobby mac

Thanks for the invite to the club, I guess we're in! Thanks for leading me here, I see lots of low psa's in the sigs smile
Posted 4/16/2017 6:01 PM (GMT -6)
Hi Doire -

Welcome to the club!

Actually Big Mac invited you -but I would have too -

Bobby Mac
Posted 4/17/2017 4:58 AM (GMT -6)
Doire
Added you to the PT3A Club, welcome! Let the questions begin smile

Bill from Florida cool
Posted 4/17/2017 5:20 AM (GMT -6)
RobLee,
Yes, Lupron Jim passed away just a couple of weeks ago. He was a great member who would have already posted on your thread by now. He supported many guys on this board and gave encouragement to all.

You do not have to walk/run at any of the PCa events. Sign up, get the free teeshirt and support the cause of early detection. I drove from W Palm Beach to the first Zero Cancer Tampa event, we got there 2 minutes before the race. We didn't walk, just clapped and supported everyone. I still wear the "Survivor"shirt I got. Now they give out hats to survivors.

Nice thing about living in Florida, all the parks you can go to and get discounts for being a resident. yeah

My surgery was in Kissimmee, 4-5 miles from Disney World. We bought season passes. Every time we came up for doctor's visit, we would go to DW. I dropped off many a wet pad in the garbage pails in the public restrooms there. Remember, I had an AUS installed so I never got dry.

Sounds like a great plan to celebrate the end of chemotherapy and pre-surgery by going to Universal. Beat the crowds, June will be crazy there.

Bill from Florida cool
Posted 4/17/2017 7:21 AM (GMT -6)
Thanks, Bill. After posting the question about Jim I looked him up. I understand it was actually melanoma that took him? Adds further credence to the old saying that men with PCa usually die from something else.

I will try to make it to the next walk... could use another hat (not really, just saying). I'm also looking forward to attending a GFMPH gathering sometime. I had to look that one up too!

We actually have been vacationing in Florida for decades. My wife's parents moved here in the 1980's to care for her grandmother. Now we are taking care of her Mom (actually she is healthy, and WE got sick!)

We learned early on to visit the parks in the winter and the beach in the summer. Vice versa doesn't work so well. Orlando is very HOT and crowded in the summer, and the beach is cold and dismal in the winter, so we just switched them around. It's worked very well. Sorry to say we haven't been to the beach since we moved here six months ago, but we been kinda busy with two cancers (wife has lymphoma).

I had heard that sometimes - maybe often - the AUS still needs a backup pad, or sometimes sitting wrong can cause a leak. Sometimes a different size cuff or tandem cuffs are called for. My greatest fear is that the AUS fails or requires revision and my SRT is further delayed. My RO says we can delay til it heals but SRT MUST be done "sooner rather than later".

I'm sorry to hear that your AUS wasn't 100% effective, but I'm sure that what you experience now is NOTHING compared to what you used to live with... I know it will be for me. After six months of Texas caths and wearing a leg bag everywhere I go, shorts and a small pad to catch a few drips will be a welcome change.
Posted 10/8/2019 3:43 PM (GMT -6)
Dano62
Age 62
T3a
biopsy 11/17
9 of 12
Removal 3/18
13 lymph nodes removed , 1 cell in one.
LUPRON 2yrs. Last injection 9/5/19
PSA <.05 9/5/19
From MA

This sounds like a great forum. Glad i found it.
Posted 10/8/2019 8:59 PM (GMT -6)
Add us to the list. My husband is currently in the 1st year of ADT and just finished radiation back in May. So far PSAs <0.04 - non-detectable level at The James in Columbus, Ohio. Living in 3 month increments between PSAs - the next is Nov 1st.
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