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Bad news and good news for this newbie G9

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Posted 4/16/2018 8:58 PM (GMT 0)
Long time listener, first time caller. Yes the bad news is that I am here on this great forum and someone gets to welcome me to the special G 9 club. I wish I had been aware of y'all last Spring. Being hit with a stage IV diagnosis with bone mets is way worse than losing to Clemson 31-0. Perhaps my timing was decent because of the studies published last year about ADT+Zytiga. My MO's warned me about heart health, weight gain, fatigue etc. Before Lupron, I started a workout regime & modified my diet. Even with my meds I lost 18 pounds. Only 3 have been found. I feel stronger than ever-strange to say the best shape of my 64 years. Reading here this last couple of months has provided great inspiration from regulars like Todd 1963, Wings of Eagles & Cyclone-ISU. I too am starting a Zytiga bottle collection. So that's my bad news in a nutshell. The good news? I switched to Geico & saved 15%.
Obviously my good news is joining the zero club with last week's psa test result, <0.01. I am happy there is a place like this and I pray we can all be here a long time. And as always, Go Bucks!

Jim
my life motto: If you aren't laughing, you aren't living
Posted 4/16/2018 9:09 PM (GMT 0)
Welcome to the posting world.

Congratulations on the PSA - here's hoping it stays low for a long time.

Andrew
Posted 4/16/2018 10:22 PM (GMT 0)
Well, alrighty then! Let me be the one to welcome you to the least favorite chapter of the club no one wants to join. Sorry you need to be here, but glad you found us. This is a good group of guys, no docs, but lots of first-hand experience. Feel free to ask, complain, whine, rejoice, whatever. We're here for each other. One for all, and all for one, D'Artagnan!

Here's a link to the G9 Crew thread. I've put you on the list in the 4+5 group, ordered by diagnosis date. You're surely already aware it is a gathering place for those of us facing this diagnosis. It's worrisome to be sure, but there is a lot of hope and many doing quite well for a long time indeed. Here's the link:

The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)

Here's hoping all goes well for you.
Posted 4/16/2018 10:44 PM (GMT 0)
Welcome, fellow G9er, to our delightful club! At least we are a pretty nice bunch of people, though like all families, we do have our occasional arguments! Welcome aboard!
Posted 4/19/2018 3:20 AM (GMT 0)
Hello GoBucks/Jim,

As a fellow G9, a fellow Cleveland Clinic patient, fellow Zytiga consumer, and a fellow Ohioan (Cleveland), welcome to the site!

Go Bucks and Go Cavs!

- Bill
Posted 4/19/2018 3:50 AM (GMT 0)
Greetings Jim,
I'm glad that you found this forum, there are others forums on line, but I truly believe this one to be "golden". You will get many great replies here. Sorry you have to be here, but you have a great PSA response so far, and in a short time. BTW, in your signature, what was your initial PSA at Dx in 2017?

Interesting that they did the RALP and then discovered mets? Maybe they were small. You are now at the Cleveland Clinic, congrats I hear they are first class and very well renowned, so they know what they are doing. I was wondering if they considered Taxotere(Doxtaxel) first though, prior to Zytiga?

I feel a good "Symbian" relation to you already( But not in the SLA Army/Patty Hearst way!) Not sure what made me think that, but I know you remember that time, probably that term is not used much on this forum(LOL)

In any case thanks for the props, many here are my inspiration also, many great patients and caregivers here. Congrats on saving 15% on Gieco (All those Insurance Co. claim the same thing! Especially if you "bundle")

Take care Brother Jim, and I like to say Keep the Faith, I also pray we will be here a "long,long time!"(re Elton John song)
Wings aka Dan in So Cal aka GoAngels/Lakers/Rams
Posted 4/19/2018 6:13 PM (GMT 0)
Thank you guys for your welcomes. Re: Cleveland Clinic, I went there for review. My surgery was in Toledo as is my MO and my RO consult. My Dr at my annual physical felt a hard spot. That and a psa of 4.52 sent me to the Uro who did the biopsy. I had xrays, ct urogram, MRI. Everything looked ok-no sign of spread or swollen lymphs. My biopsy gleason was 4+3. Had I known about this forum then I would have had my slides reviewed by Epstein. I was mentally biased (without proper education) towards surgery(and a cure) and went that route. When my nodes were positive that is when I was referred to the RO. He ordered the PET scan 3 months after surgery. So were my bone mets detectable in June/July? Was my surgery unnecessary? Should my Uro have ordered a PET scan? Eyes are in the front not the back so we look forward. Cleveland Clinic reviewed all the path slides and said my initial biopsy was 4+4 and post surgical was 4+5. They agreed with the course of treatment proposed by my MO. So here I am. Grateful to be feeling well and at <0.01. I'm ready to rob a bank. I'll be your Wingman and Elton John will be playing. Hoping to catch the Angels in early August when they visit DTW. And as always, Go Bucks!

Jim
Posted 9/9/2018 8:33 PM (GMT 0)
Edit post
Thought I'd check in with the G9 club. Hadn't been here in a while, I've been spending time on a couple of other sites and lost track of this one. It still appears that my cancer was beaten into a dormant stage with the help of Dr. Myers, PSA remains undetectable, Alka Phos is normal and last Axumin scan showed no active disease. I now consult with Dr. Sartor in NOLA since Snuffy's retirement and continue monthly visits for bloodwork etc. with my local medonc.
Still on triple ADT - Xtandi, Lupron, Avodart along with estradiol patch and Metfomin. Also several supplements and Meditteranean diet - the Snuffy protocol as Sartor puts it. SE's of long term ADT are significant but I'm reluctant to change anything for fear of waking the beast. So the new normal includes fatigue, dull headaches, brain fog, memory issues, etc. But I guess I'll take it over the alternative.

Dull headaches are really annoying and usually are accompanied by some heavy brain fog. I nip it in the bud with one ibuprofen at the onset which seems to knock it down for most of the day and helps me to feel better. Anyone else get these?

Anyway just checking in and plan on staying in touch.

One more cast...

Ed
Posted 9/9/2018 8:54 PM (GMT 0)
Welcome to our little club. Congrats on the weight loss - keep up the workouts. I've been on Firmagon for 5 months and haven't gained any weight but haven't lost any either. You're now my inspiration to notch up the workouts.
Jim
Posted 9/10/2018 2:25 AM (GMT 0)
Hey ed-bar - good to hear from you! Glad you're doing well
Posted 9/10/2018 2:31 AM (GMT 0)
Thanks for weighing in. If you can fight back ADT issues with ibuprofen then good for you! Please keep us posted as to how you're doing!
Posted 9/10/2018 2:35 AM (GMT 0)
Sorry Ed you are still in the wrong place. You must have looked me up and found my first post. Thanks for reviving my original post though. You want to post in this topic: The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)
You should see it on the first page of posts.

Jim: Glad to be inspiring someone. Since that post I've found a few more pounds. Gotta get at em.
Posted 9/10/2018 11:56 AM (GMT 0)
Thanks
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