Sword of Damocles

[JayJinxed8112]

Hi,

I am a month away from completing my initial treatment (external beam and brachytherapy, followed by 2 years of Lupron, Zytiga, and prednisone).

I am not sure what to expect as my oncologist was not effusive in showing me a life I can expect. I expect that withing 3-4 months my psa will tell me if I am in the good group where I could hope to make it to 80 (I am 65) or the bad group where all bets are off.

I am somewhat dreading the inevitable that is coming. I dont know what to expect. I hope that I can start some weight training and that I will lose weight. I am feeling a lot of uncertainty.

JayJinxed

[MoonRocket]

Life is what we make of it, not what others say or do.

[Tall_Allen]

I'm afraid it will be a few years before you have any indication that your therapy worked. For the 2 years that you are on hormone therapy, you will have little or no serum PSA. As your testosterone comes back, your PSA may go up a bit, but then it will go back down as the cancer dies off. My PSA didn't reach its nadir for almost 4 years after radiation.

You should be exercising now, with your doctor's permission.

[JayJinxed8112 in reply to Tall_Allen]

Thanks Tall

[lookout4 in reply to Tall_Allen]

Thanks TA, that's a good explanation!

[Bruce66]

Jay - you'll be fine. I'm looking back on 5 years (I'm 70 now). I'm at least as healthy as I was at diagnosis, and I'm not one of the "lucky ones." Many in our group will tell you the same as Tall Allen: exercise. It is not an option, it is mandatory.

So don't panic, don't sweat the small stuff. Modern medicine can get you to 80, easy. And with a pretty decent quality of life. Time flies; you'll there before you know it.

And start working on your Bucket List early! Greatest excuse in the world. 😉

[Nusch]

Fully agree with TA and Bruce, exercise is mandatory even during therapy. I’ve made the same mistake in the past and it was so hard to re-build muscles while under ADT. But it works - be constituent and patient. Also do some gymnastics, you’ll find plenty of Youtube videos and go running or swimming or cycling. For weight loss I recommend a plant based diet plus fish and if you want time restricted eating (e.g. 16:8 oder 14:10). Anxiety is a trusted friend of all of us, for one more for others less. I survive with thanking universe for every new day and live in the moment as good as possible. It’s a wonderful life!

[London441]

Enjoy today! It’s a long road unless it isn’t. Remembering that you were never assured a long life before this trial can be oddly comforting.

Instead of ‘hoping you can start some weight training’ start it now. It is the most powerful tool in the box for this.

[ADTMan]

I think the Ascend RT trial shows you couldn't have chosen a better therapy. So called cure rates are 80%-85% even for high risk patients. Much greater than IMRT or surgery. Watch out for the 2 yrs of hormone therapy. After a year it may get tough mentally. I never got over it unfortunately but time will tell. Good luck.

[EdinBmore]

Good luck! I, too, had IMRT, brachy and Lupron (but for 9 mos, not 2 yrs...cannot imagine it for 2 yrs). The ADT was hell for me (but you may be one of the lucky ones who experiences few side effects). Check out previous posts here; there are a ton of them regarding what to expect and how to deal with them. The only thing that I think helped me (and I needed a lot of help) was exercise and I am no gym devotee. Suggest you get a trainer to get you started with exercises. Walking is a good, easy thing to do too. You'll probably feel fatigue - real bone crushing fatigue - but force yourself to work out. You might have wt gain, lose all interest in sex (keep the blood flowing there with a penis pump and masturbation...even though you won't feel like it), joint pain, depression and so on. Bottom line: your life is going to change. Learn as much as you can. Share your feelings with a counselor and loved ones. At best, this isn't much fun! LOL But, it will pass in time (a long time perhaps) and, hopefully, your treatment will be successful - probably so - and you'll do well. I found "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones" helpful. Certainly much better than any info I got from my docs. Btw, you've come to the right place for information and advice and support.

EdinBaltimore

[JayJinxed8112 in reply to EdinBmore]

Thanks Edin

[jgsdone]

Hi Jay,My early experience,

I am going for my 9th Firmagon shot today, having great success after adding Zytiga and Prednisone, keep an eye on BP, mine went up so I added a BP med. Your PSA will drop rapidly if not already, mine 168 to .1 now, the two best things I did was join this group and per group recommendation, exercise. It literally keeps me going, reduces those dark days and helps the bones, it took some time for my body to somewhat adjust, going for my IMRT CT planning scan this week, I take a handful of vitamins, time will tell if any benefit there for me, I eliminated foods / supplements that can aggravate PSa and my Oncologist is pushing for 2 yrs ADT, talking to him today about taking a break at one year. I was scared out of my mind when diagnosed but I am getting a handle on this new way of life, My RO said I could easily live 15+ years and new therapies will come along.

[SeosamhM]

It is the Sword of Damocles indeed! In this parable, I think you've answered your own question regarding expectation - don't. Don't expect anything. Live.

Speaking strictly from the bad group, I defaulted years ago to not expecting a thing except for what is immediately in front of me. My journey, my "case," is not a statistic until the end.

Sure, I've generated some statistics on the way: Age of diagnosis (49), Gleason score (4+5=9), time to castrate resistance (~24 months), time to failure of Zytiga with prednisone (18 months), time to failure of Zytiga with dexamethasone (8 months), etc. But these are simply facts and meant nothing to me at the time except as a "what next?" They mean even less to me now.

Some practical advice? Go lift those weights - increased reps with lighter weight to decrease injury. Try intermittent fasting. Try the sauna and water aerobics at the Y. Listen to music that moves you every day.

If it helps: You are in the "good" group to the extent that you have family here on HU. Reach out anytime! - Joe M.

[Mgtd]

Sounds like you got some great info. Like others I will add that walking for exercise and resistance training works on many levels.

I have found my Apple Watch to be a real motivation. It allows you to set goals, reminds you to do it and then sends you rewards and badges when you hit your goals. Sounds silly but for me I smiled when I received my rewards.

You DO NOT have to gain weight. I have transitioned to eating off smaller plates, increasing my intake of veggies and fruit and cut out snacking except for a piece of fruit. I have NOT lost any weight but have lost 2” off my waist and I notice modest muscle gain. I really have a lot of energy even while on ADT.

Here is something else. When yo walk with the Apple Watch it tells you how many calories you have used. I walk for 12000 to 16000 steps which for me is 5 to 6 miles. My watch goal is 10000. When I started I could only do 10 to 15 minutes and it took me a month to get to 30 minutes and finally I made it to one hour. Now I do 1.5 hours everyday. Rain, snow, or shine.

Going back to the watch. Since I now see the number of calories I burn walking 1.5 hours and if I am tempted to eat a piece of cake or some other type of dessert I now look at the number of calories I will consume and ask myself is it worth a whole days walking for that cake or ice cream, etc. In most cases I say no but sometimes I may reduce my portion size to lower the calories and still enjoy the treat.

I call that mindful eating.

Hope these help you on your journey and let us know how you are doing.

[spencoid2]

You chance of making it to 80 with an acceptable quality of life depends on many factors. The possibility of a cure requires that the cancer is localized and is completely destroyed by radiation. If you have a high gleason score of 9 or 10 and or a high PSA at diagnosis, there is a high probability of micro metastasis and recurrence. It took 7 years for mine to recur. If that happens you have advanced disease and are subject to whatever treatments are available and how well they work for you. Starting out now as opposed to ten years ago you have the advantage of more treatment opportunities and more to come.

[j-o-h-n]

Hello Jinxed,

I had to look it up on Mr. Gobble....

What is the most common cause of rhabdomyolysis?

A crushing injury is one of the most common causes of rhabdomyolysis. High-intensity exercise: Jumping into an exercise program too fast can lead to rhabdomyolysis when your muscles don't have time to heal after an intense workout. Severe dehydration and overheating: Heat causes faster muscle breakdown.

Easy does it with your exercises/workouts.

As far as your Pca goes, here's an expression for you from my youth in the south Bronx, NYC.

"It's a walk in the park, but not after dark".......

Take care.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/13/2023 1:44 PM EST

[Derf4223]

You might provide more details in your bio about your case specifics. eg, metastatic, psa entering treatment, age, etc. At free will of course. I delayed getting PSA-tested for years, aggravated by the excuse of Covid risk and shutdowns etc. So my early 2022 diagnosis was advanced, metastatic, stage 4, high risk with PSA 30 just before treatment started. Your treatment should commence with 2 months of firmagon. I got IMRT, then lupron and abiraterone.

Lots of men on this forum got caught by surprise too. Regular PSA testing is in fact discouraged out of concern of overtreating indolent PCa. I hear you about the racial angle. I have a family tree peppered with APCa and I happen to be white.

Anyhow, you need to get a baseline DEXA bone density scan stat. ADT is going to put you into a no-T state where bone loss and muscle loss is accelerated. If your DEXA scan shows osteopenia or worse, consider having your MO prescribe Prolia (denosumab.) If you don't have an MO get one. Exercise is absolutely essential. Weight lifting / resistance training is the core. Cardio helps too. Good luck and make the most of every day.

[Farlo]

Hi Jay, I just read the replies, I find solace in them. I’ll tell you what my Dr told me, go live your life. Don’t dwell on the inevitable whenever that is. Deep breath and Go! Best of luck to you.