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User
Posted 23 Jan 2016 at 14:21
I'm 52 so consider myself young, recently diagnosed with Advanced Prostate Cancer. I am struggling with fatigue and a number of other issues. Anyway had my first fatigue program telephone call yesterday. Mixed results as I may have had a reality check. Anyone like me try in me trying to get back to work quickly.
User
Posted 24 Jan 2016 at 11:05

Hi,
Look at the threads of old members like Old Al - he was practically dependent on a wheelchair but took up swimming and said it changed his life. Low impact, high resistance, short bursts of activity building up carefully to be active for 10 mins then 15 mins then whatever. It is great that you are doing the fatigue programme - i didn't even know PCUK were still running it - and in my view whether or not you do the caravan show depends on whether you love it or see it as a bind. If you love being there and seeing all the displays etc then go - with bone mets you should do whatever nice things come your way and make you feel joyful. If it is a job or a task that you will find onerous and draining then maybe you need to miss this show and look at other sales opportunities in a few weeks when yiu are less exhausted.

One thing - best to delete the name of your consultant as it is against the rules of this forum. Just change it to Prof G

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Jan 2016 at 07:53
I'm sorry about your own advanced situation and the medication you are taking. I was diagnosed with locally advanced PC and went onto Zoladex and then had 37 RT fractions.
I understand about fatigue. It's something others cannot understand unless they have experienced it. Sleep does not always help it.
RT fatigue ceases after about 6 weeks.

Due to the age PC affects many patients many are already retired and do not have to worry about work.
But if you are working then life can be difficult.

I was very lucky in that my employers were supportive. I told all my colleagues personally when I was diagnosed and they were great.
I was signed off work after 7/9 weeks of RT for 2 months. And I needed that time off.
I went back to work on reduced hours ,initially 08.30 to 12.00 , then it increased over a period of 2 months until full time hours.
However I had a relapse of fatigue towards the end of those 2 months and the phased return was extended by 3 weeks.
During this time I spoke to a specialist nurse at PC as I just could not understand why I wasn't feeling better.

I was told that what I was going through was quite normal. And that it was the medication which is the main culprit.
Just do what you can and don't worry about what you cannot.
As my GP said to me " your health is the most important thing".

Trying to work and recover is tricky. You can feel guilty for being off but then terrible when you're back there.

It's taken me sometime to return to normal. And I found that surprising. But now I'm more or less there.

Re viagra, I posted a report called penile rehabilitation last week. You'll see that no one had spoken to me re ed and that it was only this forum that me think I needed to do something. Lyn is right re her posts.

We are here If you need us.

Good luck.


Show Most Thanked Posts
User
Posted 23 Jan 2016 at 22:20
Sloegin

Sometimes new conversations do not show up immediately in the posts.
It would help to give some details of your history and treatments etc so the right members can tell you of their own experience.

Thanks Chris
User
Posted 23 Jan 2016 at 22:48
Sloe gin

Replying to get you higher up the list. Can you add info to your profile so others will be able to offer more support?

Arthur
User
Posted 24 Jan 2016 at 07:38

hey up sloe gin
are you a Bonamassa fan

as been posted give us a bit of info on what you have been treated with or what you on at moment
the fatigue will proberbly be one of the drugs you are on but we need to know so we can relate

I too am planning to return to work end of feb, and have had fatigue probs but this is slowly going, been for my first 1mile run in 3weeks this morning, last sunday could hardly walk 100yds

regards
nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 24 Jan 2016 at 09:01

sloegin,

is this the support you are getting?

http://prostatecanceruk.org/get-support/help-with-fatigue

What PCa treatment have you had or are you having?

dave

All we can do - is do all that we can.


So, do all you can to help yourself, then make the best of your time. :-)


I am the statistic.

User
Posted 24 Jan 2016 at 09:53
Hi everyone. First thing first - yes I'm a Joe Bonamosa fan and looking forward to his new album (should I have said CD?).
Anyway I'm on Firmagon so fatigue is part of side effects telephone. This Wednesday I have my monthly injection (4th one since diagnosis). Taking nothing else.
This whole thing is taking some getting over. Large changes to my body. Have recently had it confirmed that the blurred vision is part of side effects as well.
I have have started the fatigue program with Prostate Cancer team, and have been bought down to earth I think. I would seem that I need to realign my personal expectations. I am currently working half days and find myself very tired in afternoon. I have an aim to attend the Glasgow Caravan show in 10 days as a salesman. Not going to happen I think.
All other major side effects are present and correct. Just struggling to come to terms I guess
User
Posted 24 Jan 2016 at 10:22

Good morning SloeGin,


So, you are being prescribed Firmagon? When were you diagnosed with PCa, and how?


Who has said you have, or what do you mean by, Advanced PCa?


Have you had any scans such as an MRI, any PSA tests, DREs?


Do you have any of the physical symptoms that are usually associated with PCa?


Your profile shows you having PCa, not advanced thank goodness, but you say it's advanced?


Advanced could mean it is worse than it was earlier, it's getting worse?


Or that it has spread out from and beyond the prostate, metastasised?


If you provide the answers to these questions you may get better informed responses from the readers here?


Edited to add, you may not want to give any more information on your diagnosis or treatment, this may limit your replies? 


Have a good weekend.


dave

Edited by member 24 Jan 2016 at 10:48  | Reason: Not specified

All we can do - is do all that we can.


So, do all you can to help yourself, then make the best of your time. :-)


I am the statistic.

User
Posted 24 Jan 2016 at 10:47
I have been diagnosed with Advanced Prostate cancer, with deposits on my pelvis, on a rib and 3 locations on my spine. I have had the full gambit of tests including a brain scan. All my displaying symptoms were the classics - constant desire to wee etc.
My Gleason score is 9 and the cancer is aggressive. I am under Prof G at Durham Hosp. Chemotherapy has been started and dropped due to adverse drug reactions to steroids.

Edited by member 24 Jan 2016 at 11:08  | Reason: Not specified

User
Posted 24 Jan 2016 at 11:05

Hi,
Look at the threads of old members like Old Al - he was practically dependent on a wheelchair but took up swimming and said it changed his life. Low impact, high resistance, short bursts of activity building up carefully to be active for 10 mins then 15 mins then whatever. It is great that you are doing the fatigue programme - i didn't even know PCUK were still running it - and in my view whether or not you do the caravan show depends on whether you love it or see it as a bind. If you love being there and seeing all the displays etc then go - with bone mets you should do whatever nice things come your way and make you feel joyful. If it is a job or a task that you will find onerous and draining then maybe you need to miss this show and look at other sales opportunities in a few weeks when yiu are less exhausted.

One thing - best to delete the name of your consultant as it is against the rules of this forum. Just change it to Prof G

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Jan 2016 at 11:28

hi sloe gin
me and rlass love bonamassa
my fav is india mountain time

re your fatigue in afternoon can relate to this, have been told that your energy is best in the morning due to the overnight rest, and best to get things done am rather than pm

the blurred vision I get sometimes itslike everything is going in and out of focus
have they offered any tamsulosin to help with the loo visits

regards
nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 24 Jan 2016 at 12:39

Hi SloeGin,


I don't suffer fatigue due to meds, other factors have made me slower and more prone to tiredness. Maybe one way you may be able to increase the time you can do something is to slow down the pace at which you do it? Unless it is just the time you are active that limits you, not the urgency or pace?


Do you have any experience of the particular show you want to attend, or stats that show when that show or exhibitions you are attending are at their busiest? Trade shows and exhibitions I attend, I find that late mornings and early afternoons are the busiest times. If you can work out the optimum time for visitors and potential customers attending your stand could you structure your working day around that?


Hoping to do 10 days at that show is a good aspiration, okay it may not be going to happen, but could you manage 5 x 1/2 days? Half day does not have to be the 1st half or the 2nd half, it can be the middle half? Will you be staying locally or travelling? I opt to stay over if I have an early start or a late finish these days, no more driving through the breaking dawn or the gathering dusk after a full day at an event.


atb


dave

Edited by member 24 Jan 2016 at 12:46  | Reason: Not specified

All we can do - is do all that we can.


So, do all you can to help yourself, then make the best of your time. :-)


I am the statistic.

User
Posted 24 Jan 2016 at 13:50

One other thought - some people believe that Degaralix is the most painful injection and most likely to cause extreme fatigue. Perhaps you could ask your onco or nurse specialist whether it is possible to change to Zoladex?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Jan 2016 at 15:14
I like him when he plays Led Zep. But I enjoy listening to him at any time.
I'm wondering if the blurred vision gets better with time, May have to see if I need to get my glasses changed. As for any additional treatments for the side effects etc I haven't asked yet. Seeing consultant in March and have a number of things to ask him. May try go route first and see how it goes.
Would I be right in thinking the viagra doesn't work when taking hormone therapy?
User
Posted 24 Jan 2016 at 15:22
I think that going to the show isn't going to happen. But it is keeping me focused on trying to get back to a full working day. Being naturally outgoing I really think the best way forward is to generally slow down.
I guess I'm struggling to adjust to my new level of normal
User
Posted 24 Jan 2016 at 19:39

The viagra can work if you still feel randy but if your libido has gone awol then tablets won't help I am afraid.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Jan 2016 at 07:53
I'm sorry about your own advanced situation and the medication you are taking. I was diagnosed with locally advanced PC and went onto Zoladex and then had 37 RT fractions.
I understand about fatigue. It's something others cannot understand unless they have experienced it. Sleep does not always help it.
RT fatigue ceases after about 6 weeks.

Due to the age PC affects many patients many are already retired and do not have to worry about work.
But if you are working then life can be difficult.

I was very lucky in that my employers were supportive. I told all my colleagues personally when I was diagnosed and they were great.
I was signed off work after 7/9 weeks of RT for 2 months. And I needed that time off.
I went back to work on reduced hours ,initially 08.30 to 12.00 , then it increased over a period of 2 months until full time hours.
However I had a relapse of fatigue towards the end of those 2 months and the phased return was extended by 3 weeks.
During this time I spoke to a specialist nurse at PC as I just could not understand why I wasn't feeling better.

I was told that what I was going through was quite normal. And that it was the medication which is the main culprit.
Just do what you can and don't worry about what you cannot.
As my GP said to me " your health is the most important thing".

Trying to work and recover is tricky. You can feel guilty for being off but then terrible when you're back there.

It's taken me sometime to return to normal. And I found that surprising. But now I'm more or less there.

Re viagra, I posted a report called penile rehabilitation last week. You'll see that no one had spoken to me re ed and that it was only this forum that me think I needed to do something. Lyn is right re her posts.

We are here If you need us.

Good luck.


 
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