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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dorke
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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.
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
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.
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.
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
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.
Brain fog and sooooo much more (including venting);
My PCP and (now my third) uroligist treated me like Big Foot. People talk about it but have never really seen it!!! My oncoligist admited to my wife and I that he never believed in it until a colleague / close friend of his complained about having it and had to leave his practice!!! It was real for him!!!
I have read that to have the brain fog / mental dullness (I define as the New Years Day hangover (head only)) is kind of common but to be blessed (by Satin) with the addition of the loss of cocnitive ability, etc, is a show stopper! And lets not forget to add in the normal SE’s of ADT!!! Sucks...right?!!!!!
The most fustrating thing for me is I can actually see how stupid I have become. In so many instances, whether it performing a normal task, reading, solving math......... (and if I can remember what I am there for), I’d say to my self “you know this” but can’t do it and ask for help or abandon in fustration. Getting pretty good at reading WITH MY FINGER!!!!!
I build hospitals, schools, housing, water / waste water treatment plants and one high rise......multi millions dollar projects. I work as a Project Superintendent but double as a Prokect Manager, Master Union Carpenter / Millwright and now can’t assemble my grandkids simple toys!!
([{DONE VENTING]})
I’m starting an Eligard “QoL break” and happened across some discussions here about the use of BiRM, Ritalin and other natural suppliments that help / eliminated the brain fog (some to the extent that we experiance)!!! AT MY OWN RISK, I am starting down that road ASAP. 18mo’s ago, I could figure out how to forward you some information but not too sure about now. I will try if you want, but try searching BiRM. Some of the contributors with experiance are Crabcrusher, Greatjohn, Nalakrats......
What I'm noticing is that people who do a lot of calculations and planning for a living notice the cognitive impairment more. Every man, here and elsewhere, who has responded to my tale is in a job where they have to plan, calculate, and act.
I agree somewhat because that is why they sat me down, I was at a point where I could not figure how to create a spreadsheet, couldn’t even start it!! Formulas.......gone from memory. Create a project schedules, a F’n joke (and not a funny joke). I used to do most math in my head, now Thousand $ mistakes on estimates while using a caculator for everything. My memory, gone!! Reading with my finger, hunt and peck on the keyboard.......
Maybe because the above brought things to light, but outside work, currently, I need my wife with me at appointments and meetings because very little sinks in. Very slow at making change. I drive very little because of bad decisions I was making behind the wheel. If I have to assemble something with alot of parts, I’m screwed.
Sooooo much more!!
Hopefully coming out of the clouds now that my QoL started!! Plus going to try the BiRM suppliment package too!!
I was on ADT for 6 months. The brain fog was/is debilitating for me and the loss of libido were very very hard to accept. The other side effects were bothersome but not a big deal. When I stopped ADT everything improved after about 3-6 months. Although improved the brain fog has persisted.
Right now it manifests itself in behaviour that looks like lethargy but that’s not quite it. I often don’t accomplish things (daily chores) because I don’t know where to start. And if I do start something, I lose focus. Even when I make a list, like “make the beds” I can’t figure out how to do steps 1 and 2. Or I forget what I’m doing before step 2 and I try to start something else. It’s bizarre
Another weird thing. I can’t figure out a calendar. When I’m trying to discuss dates and schedules for my kids, I just can’t process the information.
I’m about to start rehab to return to work and I’m hoping I can just rebuild some habits to help me become functional again. I’m really looking forward to having a coach because I’m just not succeeding on my own.
I’m hoping that the longer I can stay off ADT, these side effects will diminish. But I have a nagging worry that my brain has been permanently altered.
My work involves a lot of analysis, planning, scheduling and an understanding of technical details. For 30 years this has been core to my identity.
I’m stuck in this limbo area between struggling to overcome and accepting a radical change and reinventing myself. But it’s like a grieving process and it affects me psychologically. It feels like a kind of low grade depression. The love of my life says she misses my smile. I hadn’t even realized I wasn’t smiling. My family has been so understanding but you can’t escape the fact that it affects everyone around you.
I’m eternally grateful for the medical profession for discovering the benefits of ADT. But I’d like to have a conversation with anyone who doesn’t believe the brain fog is real and, in some cases, debilitating
I know exactly what you mean. I believe it is called "executive function." I also lost the ability to plan out a sequence of tasks, even simple ones. Losing the ability to do math in my head was bad enough, but I got to where I couldn't do it with a calculator or spreadsheet, because I couldn't find the right sequence of steps. That used to be effortless, then it became impossible.
As I mentioned above, every man who shares my experience also makes their living with analysis, planning and scheduling, technical understanding, calculations. It may not hit everyone that way, but it is particularly debilitating to those of us who do that kind of work.
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.
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
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.
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:
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.
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.
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.
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?
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.
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
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
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.
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.
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.
I’m just two weeks into my 39 rounds but I’ve watched several guys finish theres. One in his 80s and another 43. We have appointments beginning at 4am last one at seven am. I saw no sign of fatigue at the end for them. Everyone bitches about the fatigue from the lupron. Me too. Everyones therapy is different so not sure what it is that causes the fatigue with radiation. I’ll ask.
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