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Posted 2/5/2019 8:00 PM (GMT 0)
Gunner,
Yours is a fantastic story. I know that I know that Zytiga will clobber that ol PSA and keep it low for you for many many years to come. Keep the Faith brother and keep posting, yours truly is an inspiration story to many of us here.
Wings aka Dan in So Cal in the rain today.
Posted 2/9/2019 6:54 AM (GMT 0)
Thanks for the additional replies on this post. Really good to hear from you guys I've met in person and glad to see your signatures showing no major surprises.
This Mn cold is really miserable to deal with on top of the Lupron and Zytiga. I escaped to Mexico for a few days and got some immediate relief. I'd like to get to Maui again one of these winters. Would be good to meet Logos and Simon.
Anyway, Back home again and the fatigue, muscle and bone soreness is back immediately. Wish there was a way to make this easier....but I still shouldn't complain. Yes, I have fatigue and pain and other issues. But I'm here and thrilled to still be here for my family.

Glad to see that my little bit of success is being read by even a few that are looking for hope. There's a lot of us out here that have survived what seemed to be insurmountable diangnosis and are thriving and fighting on years after. It could be luck, maybe good genes and heartiness. Or just treatments that were more aggressive than the cancer itself. Whatever it is, there is hope and a reason to keep fighting.

My best to you warriors⚔️. Fight on.
Posted 4/11/2019 5:15 AM (GMT 0)
Just thought I'd stay on this thread with my recent activity. PSA has doubled each month even though it is well under 2.0
Jan was 0.20, Feb 0.40, Mar 0.80
Just had labs today so will see where it's at now in April. The trend seems a bit aggressive but I see some of you guys like Ray (SteelGuy), Jerry (Redwing), and Jerry L with recurrences that you've beat back and then ended up on ADT vacations. I like that course and will be looking to knock PSA back to zero. I may never get a real ADT vacation but I keep telling myself that I will so I don't go crazy with the constant BS (another word for SE's) from Lupron and Zytiga. We are waiting on a target before we take definitive action. Where is my PSA coming from? Hoping we can get scheduled soon for C-11 or other scans to see what we're dealing with. Until then will stay on Zytiga and Lupron and hope that PSA levels off or bounces back down for a while. I'm open to doing Jevtana again if systemic approach is called for. Responded well to that in first half of 2017. Not opposed to radiation as long as it's not in an area where I'm already maxed out.

Snow is piling up outside right now but I don't really care. Masters starts tomorrow so let it snow here!

Keep the faith fellas!
Posted 4/12/2019 12:21 AM (GMT 0)
Aloha Gunner:
Thanks for the recent post. I am in somewhat of a similar situation with my psa rising about .1 per month for the last several months. It is now .9 so my MO has scheduled me for a PET scan in July to see if we can find a discrete target that we can either zap or remove.On the positive side, I have been off treatment for nearly 5 years now and my MO believes Lupron and Casodex would quickly reduce my psa to undetectable again. I am still getting my psa tested every month although that is less stressful than it used to be. So here is hoping that we can both find some target to attack. MY MO at MDA is not stuck on returning to treatment when I reach 2 and feels the decision should be driven by the rate of psa increase/scan results rather than some arbitrary number.
Prayers and thoughts coming your way. Any time you think about visiting Hawaii, let me know.
Simon
Posted 4/12/2019 4:58 AM (GMT 0)
Simon
I agree with you that Lupron will keep you in check and get your PSA back to zero. You've had a great run with no treatment. Congrats on that!!
My new April PSA is 1.20 so it's a fairly steep curve to maneuver. I'm back to the great unknowns until I get some scans done and have a plan in place to attack this crap. It's ok. I've been getting ready...

Take care!
Posted 4/23/2019 5:48 AM (GMT 0)
April PSA 1.20
These increases are not easy to take. Scans are finally on the calendar though and hope to know soon what's next for treatment. I'm guessing chemo but maybe I'll be lucky and just have to zap a spot somewhere with radiation.
Posted 4/23/2019 12:46 PM (GMT 0)
“...maybe I'll be lucky and just have to zap a spot somewhere with radiation.”

Gunner,
I sure hope so. There seems to be real promise for holding back progression with this type of treatment.
Posted 6/29/2019 7:18 AM (GMT 0)
Started doing PSA checks weekly and the last 3 in May/June were:

May 31. 2.1
June 7. 2.4
June 18. 2.6

Last time my PSA was this high was in the first couple months of my diagnosis in 2013 and well before my "outside the box" prostate removal in January 2014. I think removing my prostate (primary tumor) has added years to my life even though I had recently "resolved" distant mets at the time.

Stopped Zytiga a couple weeks ago to get PSA up enough to qualify for Lutetium 177 clinical trial. I'm there now. Will have 3 days of tests next week to see if I am a good candidate for the trial. My Mets are small but in abdomen, chest and possibly optic nerve. So that's my update on cancer.

If I don't receive Lutetium 177 in the trial I believe I'll probably get Jevtana instead. I'm hoping for Lu because of fewer side effects but I believe both options will be effective to remove active cancer and get PSA back to zero again.

Fight on!
Posted 6/29/2019 1:23 PM (GMT 0)
Gunner,
So the spot radiation didn't turn out to be feasible?

Hope you get into the trial. Good luck!
Posted 6/29/2019 1:33 PM (GMT 0)
I forgot to add that I believe in the debulking theory for the primary tumor. At the time of my RP it wasn't apparent I was already systemic, but I don't think it was a wasted treatment. Removing the primary tumor delayed my going on lifetime ADT, and I also believe has added years to my life.

I'll be looking for your updates.
Posted 6/30/2019 12:02 PM (GMT 0)
Mattam
No the radiation possibility didn't present as a good option because of how the affected lymph nodes are clumped around major arteries and then the optic nerve. Hoping that the targeted Lutetium 177 will attach and destroy the cancer cells so they don't have a chance to grow. I'll post updates when I know which treatment arm I'm in for the clinical trial.
Gunner.
Posted 6/30/2019 3:32 PM (GMT 0)
The "Vision" trial holds promise if you can get the Lu-177. Lots of hoops to jump through. Where is the location of the trial you are being evaluated for ? That trial has some loose ends...Everyone gets "Best Supportive Care" regardless if you get the Lu-177 or not.. Who decides what that is ? And just as important, who pays for it.. Be sure your insurance covers it, especially at the trial facility.....
Posted 7/1/2019 4:33 AM (GMT 0)
Fairwind

I think I'm all setup for the Lutetium 177 trial and I'm doing it at University of Iowa. Dr Kwon at Mayo is also doing it but he was full when it was my time to start looking into it.
Insurance and reimbursements are lining up and I think we're good to go. They give standard of care to those not getting Lutetium 177. In my case based on guideline ps the standard of care would be chemo so I'm being treated either way - inwoukdnt be interested if I had a chance of getting into a placebo arm of a study. My cancer needs treatment asap.

I'll post more when I get more details and as treatments start. I've heard that the Lutetium 177 injections are simple and that side effects are mild to none. That's a great alternative to chemo if it's effective. I hope these trials go well where they're being done. I've seen good results in Europe with people that have similar cancer stats as myself. My personal experience us knowing a guy whose mets shrank marginally while new mets were popping up all over around the ones that were shrinking. That's the PSMA difference I think. So I'm also hoping my needs line up with how the Lutetium works. I haven't expired all my options yet but I'd really like this one to be effective.

Have a good week gentlemen!

Gunner. 🌥
⛳️.
🌲🌲🌳🌳🌳🌳
🌲🌲🌳🌳🌳🍀 🏌🏼
Posted 7/1/2019 5:26 AM (GMT 0)
As I read the trials protocols, EVERYONE gets "best standard of care" regardless if they get Lu-177 or not..Also, cytotoxic (Chemotherapy) drugs are excluded along with other radioisotopes from either randomized group..So what is left ? Abiraterone and Enzalutamide are permitted but most of us have already failed those..This is from page 3 of the "Vision" trial description...

Anyway, I hope you get into the LU-177 group and I hope it works well for you..
Posted 7/4/2019 12:35 AM (GMT 0)

Hello Gunner34,

Sending you my best and ALL MY SUPPORT, as you get a new treatment going ~ you've had tremendous success, and I know this next step is perfect.

Stay strong --- stay determined --- keep forging ahead,
CYCLONE ~ Iowa State University
Posted 7/17/2019 6:10 PM (GMT 0)
Hi Gunner,

It is inspiring.

I was wondering what you do to keep PSA low so long, I believe that your experiece would be helpful to many people, at least to me, as I was diaganosed in March -2019, with PSA 72.9, Gl 9, bone and lung mets, now on Firmagon and Zyitga, did not take chemo yet, my PAS has dropped to 0.1, I hope it will stay at 0.1.
Posted 7/18/2019 12:10 AM (GMT 0)
Just to be a bit more precise, the drug/agent is 177Lu-PSMA-617.
Question for Gunner:
Have you been evaluated as yet for expression of PSMA on your cancer cells? Apparently, some prostate cancers express more PSMA than others.

I, and all others, I am sure, hope that you will get into the treatment, rather than the placebo, group and that you will greatly benefit.
Posted 7/18/2019 12:21 AM (GMT 0)
Dasyluo, you are having a great response. I hope it shrinks all your mets and in 9 years someone will be inspired by you.
Posted 7/19/2019 7:56 PM (GMT 0)
Thanks for sharing
Your the Man! Well Done, All the best
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