Advanced Prostate Cancer
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Getting prepared for my new life

Dont know final details yet but seems my treatment regime will consist of ADT + Arbiraterone (or Chemo) and EBRT. Per Tall Allen advice I will discuss the possibility of BT with the radiologist

trying to get ahead and figure out how my daily life will look like ,so i'll be glad to know about your experiences even though I'm aware that everyone is different:

- In terms of preparations, fatigue etc, is it better to have radiotherapy in the morning or afternoon ?

-While in radiotherapy, and specially a few weeks after starting the treatment, were you able to drive to and from the hospital or did you need some kind of transport arrangement ? how hard is the fatigue from radiation?

-It seems my ADT treatment will be a long one (hope my destiny will not decide otherwise and if it ends before it will be for good reasons...).The doctor is talking about 36 months.Were you able to keep working while on ADT ? I work in the Hi Tech industry so no physical strain but rather I need a clear mind.I read about brain fog and depression that ADT may bring so I'm not sure how feasible it is to keep working

-I'm not asking about chemo since I hope I will not have to do it at this point in time

thanks

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RE: fatigue. I can only speak of my own experience, which consisted of radiation, only. The first four weeks I felt a bit tired by Saturday, slept in a little. The next 8 weeks (4 more of radiation, and 4 afterward) were incredibly difficult for me...exhausted by Saturdays...slept until noon or later.

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Thanks Spinosa,were you able to keep doing your daily tasks on the last 8 weeks or was it too debilitating ? I can get temporarily disability for the period of radiation but I would prefer to try to keep a "normal life" ,as much as possible

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I teach school, so -I was up at 5, at school a little after 6 - my appointment each day was scheduled for 4 PM - but, often "emergency" radiation treatment was inserted ahead of me/us... usually home by 6, anyway.

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Like you, I need a clear mind to work. People pay me to solve problems they don't have time or ability to solve themselves. The work generally involves critical thinking and research into quite technical subjects.

On ADT my brain basically shut down. Depression was severe but treatable, the loss of cognitive ability was not treatable. Focus, spatial reasoning, the ability to solve basic math problems, organizing my thoughts and my work, what cognitive scientists call executive function, all were severely impaired.

Before ADT I took a number of cognitive function tests, and consistently scored in the 99th percentile overall. After three months on ADT I repeated the tests and scored 36th percentile.

That's just me. Your experience may be different, I hope it is. My MO wrote in clinical notes that I had "multiple grade 3 toxicities" from ADT. That was unusual but not unheard of in the MO's experience.

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thanks Coffey for your reply.

The loss of cognitive ability by itself can contribute greatly to the depression...

I guess that some of the "philosophical" questions i ask myself are common to many here.One of those questions would be is a life with zero or near zero QOL plus been a burden to family a life worth living?

I will have to find myself an answer for that question

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STOP THAT TALK RIGHT NOW DORKE!!!! I can't speak to the radiation but I've been on ADT and zytega (Ask your Dr about adding zytega to the adt as it's proven to work better together with adt than either alone) Find a good weight trainer and commit to 3 days a week of hard hard workouts. You will be shocked how good you feel. Not aerobics or stretching (although that won't hurt) but 1 hour 20 minute sessions on all muscle groups to exhaustion. I swear each session will be my last but I've missed only 1 in 8 months. And as my MO advised I feel great as weight training can stop the negative affects of the ADT. I actually feel and look Better than before albeit less of a sex life (although not zero with Viagra). My mind and spirit are 100%. Don't listen to the naysayers. Be a fighter and get thru this. I was scared to death but my trainer won't except any excuses. I can't thank him enough. Get out of your head get out and be proactive. That was the advise I followed and it worked better than I could have imagined.

Schwah.

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Just wrapped up 8 weeks of salvage radiation last Friday and into 5 months on ADT. First 6 weeks of radiation were a non event for me. Last 2 weeks, developed some pain and discomfort in the back-end. I have not had too much fatigue or other side effects. However, I do exercise 6 out of 7 days and keep to a solid Mediterranean diet.

Biggest challenge was logistics. Did my treatment each day around 12.

The thing to keep in mind is all these treatments are 'cumulative', they build up over time. In the beginning you prob won't notice much, it builds up as time goes on. So you need to see how you react, everyone is different.

Good luck.

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thans Emak

kind of conforting knowing you were able to keep exercising while doing radio.

until my first suspicious finding (abnormal dre) about a month ago I was quite active. twice a week gym and trice a week swimming.

since then my life has been turned upside down.I sleep really bad,tired during the day and havent been to the gym/pool since then.Hope i'll come back to myself once I fully digest my situation

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It's natural to be in shock and upside down.

Get yourself back on that exercise horse. When I felt tired, is when I made myself go and it worked, felt much more awake and better after 45 min. Same with the ADT, so far, some hot flashes and the obvious bedroom issues, but nothing else.

A lot of the other folks here know a ton more, I just read and learn, it's a great site.

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The nice thing about a BT BOOST to external beam radiation, is that it cuts the duration down to 20-25 treatments. Fatigue goes up with the number of treatments. Much more worrisome if you have a long drive home may be the need to pee - you might want to keep a bottle in the car for that purpose.

The best thing you can do to prevent radiation-induced fatigue is to exercise - do NOT take it easy. In fact, if you can afford it, get a trainer who will force you to exercise hard. Not only does it prevent fatigue, it helps the radiation work better:

pcnrv.blogspot.com/2017/11/...

pcnrv.blogspot.com/2017/12/...

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Yes, we all respond differently to the myriad of treatments.

I had ADT (Lupron/casodex) at the start in 01/2015, two weeks later I started chemos(did 15 that year) - I still worked 6 days/week, nothing too physical - I'm just a dentist.

Managed to finish a marathon, like "dead" last :-) ocregister.com/2015/04/30/c...

Exercise to offset the effects and eat healthily - low carb, lean protein, whole grains, seafood 2 x/week and lotta fruits/veggies.

My best to you and keep us posted

Randy

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I’ve been on ADT for 6 months, the first 4 months while getting Docetaxel every 3 weeks. I would take a few days off in the week after chemo, but otherwise I have kept working.

As to cognitive ability, i’m an attorney, so some might say not much cognitive ability is required. I have found it more difficult but not impossible to concentrate on complex tasks, but the work product is still up to the standards I set for myself.

Starting radiation in June, and the RO says it should be no problem to go to work after a session. Plan to schedule them first thing in the morning.

I do notice that I require more sleep.

Good luck with treatments.

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I drove to and from the hospital for forty radiation treatments no problem.

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39 treatments (5 days a week X 8 weeks minus 1). For me it was like going to the dentist and getting an x-ray. No problems during procedures, however years later found it had damaged my urinary tract.

Good Luck and Good Health.

j-o-h-n Monday 05/14/2018 9:53 PM EDT

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Brother, look up. I am working. On Lupron, adt, 67 years old, management job. Just took three week vacation in Europe. Trip of my life after two weeks of radiation. Liver life one day at a time. Look up and be more positive. We are sliced. I felt real down and wondered if I was a burden. Had a talk with my wonderful wife of 35 years and she set me straight and got my head back on. So look up and go forward. Life is good. Okay?

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Had EBRT in 2001, and still rode my motorbike in for treatment up to the last two weeks, then had to drive. I also found a soak in a warm salty bath helped, plus a good quality moisturiser, but radiation has come so far in 17 years may not be necessary anymore. ADT scrambles your ability to think straight. I was a college teacher and had to give it away because I couldn't remember what I was doing.

But the good news is that 18 years after initial diagnosis I am still alive and kicking, although I am metastatic castrate resistant. Currently on Xtandi plus Lupron and it seems to be holding it. PSMA PET/CT scan next Thursday and going to Italy on holiday in July. Keep your chin up, life is good.

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what were the perscriptions of each that you took in combination and did you take casadex as well during the on cycle. I have reached the end of lupron and casadex combo, last round was four months long, psa now redoubling every two 1/2 weeks, so think it is time to add Xtandi to the mix. Let me know asap and thanks in advance. Enjoy Italy man, started to ride my bike again after a three year absence, cannot go far but feels great to do it.

Our time is indeed short but we can still do things on our bucket list and that is what it is all about in my view. Bill

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I was just on Lupron following EBRT until that failed. Then I was lucky enough to get on a trial of Zytiga + Apelutimide which held it for two years until it failed. Now on Xtandi but not sure how effective it is, and taking Metformin with it as there is some evidence it helps the Xtandi. Tried taking Casodex and androcur early in my treatment but hated what it did to my brain so stopped them both. Hope that helps, and I will let you know what the PSMA PET/CT comes back with next week

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good luck !! Wish you great health and many more years

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I have been on ADT for the last 2 1/2 years and I got 39 radiation treatments at the end of the work day. I continued to work throughout and drive myself to and from all appointments. My story is just one of dozens you will hear, but I had no significant issues with fatigue.

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This is the beginning of a long journey for you. Like what is unanimously said here, exercise, keep busy, modify your diet, strengthen yourself mentally, and keep a good medical team around. A big portion of the negative side effects can be effectively mitigated. It’s a new life, don’t compare it to the past, and just enjoy it as is.

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I did 39 rounds of RT in the morning and went straight to work.

The only problem I had was frequent urinations until around noon, due to having to drink 40 ounces of water before each treatment. Otherwise I was able to continue working, I'm in construction and did not miss a day. In fact I believe working everyday helped prevent the fatigue.

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