QOL during salvage?

[C-RI]

Would appreciate some guidance. I’m 58, T3b Nx, Gleason 7, 4+3, PSA topped out at 120 before RP 23 months ago. Prior to surgery, PSMA indicated no spread. I am considered high-risk by my care team at B&W (but decipher score only 4.1).

PSA steadily increased to .07, over last 6 months. About to do 1 month Casodex, 6 months Eligard and, 8 weeks radiation. How is QOL during this? I know libido will be gone.

I don’t expect that I will actually miss any work, but like many here I have a busy job. Facilitate projects and teams and respond to calls, texts, emails nights and weekends, etc. Should I let my boss know that I will need to lighten my load? Should I curb stress? Or is it not uncommon to power-through?

Also, can I continue to work out (intensely) every day? And most importantly, can I continue to self-medicate with nightly cocktail (and occasional marijuana gummy)?

[MrkP]

I’m tracking just about 1 month ahead of you at Dana/BWH. I’m 50 and my PSA slowly moved up to .1 after RP in January 2019. I started ADT about a month ago. Minimal tingling of hands at the beginning. Energy level has been fine. I’m trying to stay active with hand weights, walking, some running and soccer. I start radiation next week at BWH. I’m going to try to follow the lead of another poster who said he biked to all of his treatments. I’m now trying to figure out what supplements to drop for the radiation. I may see you in the waiting room at some point.

[pjoshea13]

(I had RP + salvage radiation too.)

I retired early (52) before my diagnosis (55), but if I had been working, I would have been wary of letting anyone know at work. You never know. Obviously, you will be unavailable for an hour or so during the 8 weeks of radiation. Might lead to questions.

Does the company have a good health plan? Does it continue at retirement? When can you retire? Etc. Factors that I would take into account.

I doubt that your new regimen will weaken you too much. The radiation can leave you a little tired. & you might have bowel issues for a while. Pace yourself at work as best you can.

The nightly cocktail sounds good to me (I was on red wine - still am).

Best, -Patrick

[Break60]

Radiation won’t hurt but you’ll feel fatigue and ADT will start to get uncomfortable after a month or so as your testosterone declines. I suggest using one .1 mg. Estradiol patch weekly to counteract hot flashes. Plus you need to exercise frequently with weight training and cardio and maintain proper weight by eating good foods to keep bones and muscles from weakening and maintain mental health . Later on you may experience rectal bleeding from the IMRT. It can happen a month or more and sometimes years after radiation . I’ve also found that incontinence can begin years after radiation.

Good luck and just realize that you will have a new normal.

Bob

[Tall_Allen]

I can't see any reason to cut back. Going heavier on the exercise may prevent fatigue. Suggest finding an RO who does hypofractionated salvage radiation.

[C-RI in reply to Tall_Allen]

Might be a logistical problem, but I’ll sure ask. Thanks.

[Ab75]

I started Eligard seven weeks ago some minor hot flashes doing exercise to combat fatigue. Start salvage radiation in two weeks. I decided to take off work but I am fortunate, getting full pay during the treatment time frame.

[treedown]

I have been on ADT since Oct 2019 and finished radiation March 2020. I biked to my treatments but others may have as well. I actually increased by biking after dx and lost over 40 pounds though I found a few pounds over each winter. I have stayed active throughout and am just starting to ramp up this year's biking season with the incoming warmer weather. I have experiences little to no fatique, hot flashes or brain fog. I have worked full time in a relatively stressful profession. If I stopped working it would be to bike more. My Dr is pretty sure my activity level is why I am not experiencing those SEs but thats just speculation.. I was not able to avoid the physical effects or loss of libido, but the physical effects of no body hair and loss of upper body muscle mass (not that I had a lot at start) have made me a better biker. My annual goal is 600 miles more than last years 4400 miles which was 800 miles over 2019s mileage.

[ron_bucher]

Your employer is obligated to follow the Americans with Disability Act.

[Horse12888]

In terms of your capacity to perform work functions, I would "play this by ear." There is a chance that the fatigue and diminished mental capacity will render you less capable at work, but you won't know until you get there.

[j-o-h-n]

Here I go again...Greetings: Radiation - I've posted this before so to those people who have already seen this please forgive me.

I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions at MSKcc. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions. However 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So I had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist. Also I don't know if this would apply to you but guys here recommend SPACEOAR HYDROGEL to be inserted for protection of parts of your body. Make sure you ask your R.O. about the spaceoar and make sure you ask here on this forum before getting fried.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/08/2021 6:35 PM DST

[C-RI in reply to j-o-h-n]

Thanks John. This advice is much appreciated- as is your sense of humor. Good to laugh through these days - even at some of your true groaners.

[j-o-h-n in reply to C-RI]

A groaner or a moaner? My ex-wife...That's the punchline.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/10/2021 12:03 AM DST