First Posting

I have found a number of the posts to be very helpful to me already, thank you! I was diagnosed 01/16 4+3 and 50% cores positive. T3b after surgery positive with seminal but not lymph. PSA before surgery 27. First PSA after surgery 20. My PSA stayed at 20 for months after starting Eligard and radiation. It finally dropped to .1 in October of 16. Since then I have been on Eligard except a few short holidays. Currently on a holiday, but my last PSA test a few weeks ago was up again, .58.

[Break60]

Hi Rick

My pathology was same as yours (pt3b) post RP but my PSA was .1 and Gleason score was 9. Check out my profile for what I’ve been through since. You may be more fortunate but if PSA continues to climb one of the new ct pet scans will find the source ad you may be a candidate for spot radiation. Good luck.

Bob

[Hidden in reply to Break60]

I am certainly hoping the pet with the Auximen provides an answer to my rising PSA. The first round of hormone therapy was every months for a year, and I asked for a QOL break. I stayed around .1 for 5 months then it popped back up to .88. That was January, then I received another hormone shot and then I got another break in April 2018 until now. So I really hope the scan provides some answers. Thanks for your response. It has been a challenging two plus years and I am really concerned about what lies ahead.

[Beermaker in reply to Hidden]

QOL breaks can be tricky. After about a year on Eligard (Lupron) I was offered a took a vacation from it. It took quite awhile to clear the Eligard from my system, so the vacation was not all that effective. But my PSA went up too fast. My Uro/Onc paid little attention to the first jump from undetectable to 2.x. My PSA then went to 10.x and my old onc at another location (same hospital system) saw it and freaked. He put me in for scans, and got me set up for a Trelstar shot asap. Doubling time was WAY to fast for comfort, or for another vacation. I have been on Trelstar for almost 5 years now, still undetectable. Added Xtandi per new protocols which I have cut from 4/day to 3 to 2. Thinking about 1 a day.

So, be very careful on vacations. Watch the PSA levels, and the doubling times. (0.58 is not something I would be too worried about at this point.) Do everything you can to stay active both physically and mentally. Kill the beast!!!

[Hidden in reply to Beermaker]

Thanks Beermaker. My next PSA is September 25th, I know these dates better than my kids birthdays. I guess the question will be how high do I let the PSA go before treatment? I feel really good now, but hormone therapy is a beast for me.

[ARIES29 in reply to Hidden]

Hello RickW, yes i agree hormone treatment is & was the beast for me & i do not know how people put up with it,is it really that important to torture ones self with the side effects i ask.

My psa is 12 now & pet scan next week to see where it is now from lymph nodes so will work out the treatment from there but it will not be hormone treatment.

My best to you all in this fight to the death.

[Hidden in reply to ARIES29]

It is a fight! My onc knows how much I hate the way hormone treats me, but the stuff works to lower my numbers. It is not a healthy relationship. 😊

[Hidden in reply to Beermaker]

Trelstar!!! 5yrs , that’s great in my book.. continued success and happiness.

[Break60 in reply to Hidden]

To be sure it would be effective, I was counseled to wait until PSA was > 2.0 before getting the axumin CT pet. It got to 2.3 and it did find a 9mm met in femur. The higher the PSA the more accurate the scan .

[Hidden in reply to Break60]

Good idea to wait to get the best possible result so we can plan an attack. Sorry to hear about your met. It must be some help to know where it’s coming from?

[Break60 in reply to Hidden]

Of course it is so you can radiate it which is what I did with my femur met using SBRT

Bob

[Jimhoy in reply to Hidden]

Good Morning

Through months of seaching I was pleased to find your post regarding QoL break. I have been on HT with Eligard for 18 months. I came down with all normal side effects almost immediatelly and soon came down with Lupron Brain Fog which was a show stopper for me!! It has ruined my work and home life. Too many issues to burdon your readers!!! I thank God for a loving / compassionate wife and family!

The question that I can not get answers to is if the side effects disipate while (as you state) on Hoilday and how fast or slow?!!! I was scheduled for another treatment but after switching Uroligest, it was decided to take a QoL break.

Options stated were to resume Eligard treatments if PSA raises or surgical castration in lieu of chemical. These are basicly uncharted waters (I am finding) so the Doc’s (if they acknowalge Lupron Brain) don’t know if it is caused by the drug itself or the effects from the lack of testosgerone in the body. I see you had resumed treatment. Was wondering how bad your reaction to Eligard was and if these options were offered to you or any of your followers.

Jim

[Hidden in reply to Jimhoy]

I took two breaks over the last 12 months and they were so well worth it, but there was a long range plan and agreement with both my oncologist and my Urologist. First I will tell you that it took at least 120 days after the date of the last shot to start seeing any difference. Each month slowly better until I was 5 months out and really started feeling stronger. I was having my PSA checked every 6 weeks. It took around 6 months before it had moved eventually up to .80. I had one more 3 month shot and took another 6 month break. The plan was to have it get to over 3.0 plus so I could get the new PET scan. The scan helped us see it had moved to my lymph nodes. I am now in the middle of 6 rounds of chemo plus Eligard. I changed to a 30 shot of Eligard and it much better on the side effects for me. Hope this helps, sorry so long. Bottom line, my docs worked with me knowing That the Eligard works when I need it, and they wanted to know what was the cause for the activity. The plan is to have the chemo help with giving me a longer hormone break after the 6 rounds. We will see. Hang in there, you will slowly regain some of who you were, including your thoughts and strength. Feel free to ask more if needed. We are in this together.

[Hidden]

Your PSA is really ping-ponging around.. that must frustrate.. Who is you energy and activity level or your mood in general?

[Hidden in reply to Hidden]

How?

[Hidden in reply to Hidden]

I try my best to workout at least one to two times a week, but my goal is three times. My energy is good right now since I am on my second break. I have what must be normal for anxiety for guys in our club. My break will likely end after my next PSA. It will be close to 6 months off Eligard. My over/under is 1.50, like gambling, I will be pleased if it is under. 😊 thanks for your support!

[Hidden in reply to Hidden]

Enjoy that break.. hope you’re under ! What a club it is ! Enjoy the views along our river.. We will just keep rowing ,and dodging rocks Until Niagra falls at th end. Got to ride it out..No turning around or abandoning this ship now .. Take care....🚣‍♀️

[Hidden in reply to Hidden]

Enjoying every day, I like your analogy, we are all on the same river of hope. Count on me to bring a few bottles of wine for the journey! 🍷

[Hidden in reply to Hidden]

Salud!!

[Hidden]

My PSA after 6 weeks as gone from 1.4 to 2.70. I have my Auxumin scan tomorrow. Anxious to get the results.