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Hello - a bit about me.

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User
Posted 25 Jul 2022 at 13:01
The bicalutimide should have been started 2 weeks before the first prostap injection - it doesn't really have anything to do with the enzalutimide.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Jul 2022 at 20:22

Thanks all for your advice it's put me more at ease with myself.


My paperwork come through the post this morning from my 1st oncology consultation my outlook has been put at several years!!!I understand that that could mean anything but time will tell ah.


The tingleling and funny feelings I get which presume are side effects from the treatment always seem to come on later in the day and evening in the morning I've got a spring in my step,does that make sense with you guys??

User
Posted 26 Jul 2022 at 22:01

Glad you’re feeling a little better about things Phil. 
You’re certainly not asking too much to reach your 60th birthday, the most important thing I think is that you always believe it….keep yourself fit and well and just keep enjoying life. 


In terms of side effects, I know my husband tended to get his hot flushes etc in the evening too….some fatigue throughout the day though.


Wishing you all the very best 


 

User
Posted 11 Aug 2022 at 17:53

Great update Michael, glad to hear your feeling positive and heading in the right direction. Good man.


 


Jamie.

User
Posted 11 Aug 2022 at 23:16

Good to see your update Michael.


Glad you are getting reduced pain and your PSA is going down.


Are you still managing to do your running? Hope so. 


Take care x

User
Posted 01 Sep 2022 at 07:55
Until recently, it was common for men on long term HT to be given zometa (zoledronic acid) but I have noticed that has tailed off in the last 4 or 5 years. Zometa is given as an infusion whereas aledronic acid is tablet form so easier to dispense. Usual advice is to see a dentist before starting the treatment and, once on it, to always remind your dentist/ hygienist that you are on a bisphosphonate
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 02 Sep 2022 at 21:05

Brilliant update Michael, Great to hear your good news and more importantly, your positivity.


Heres to that further drop mate.


Slanj


Jamie.

User
Posted 30 Sep 2022 at 13:13

I thought i would sure a further wee update. It’s been a tricky month. Some of the progress made has reversed somewhat and PSA is stuck for the moment higher than I would like. Discussion with oncologist today and the general theme was that we wouldn’t and shouldn’t panic…yet. So will see how things are in a fortnight and then 2 weeks after that. As ever I am trying to stay as fit as possible and trying to keep a positive mindset. That’s been a wee bit difficult with a flare in symptoms but there is no point living every day in fear of what might come. The here and now is the best place for me to be at this time. Thoughts are will all of you and especially those who are in much worse positions than I am. Have a good weekend all.  Numbers in my profile. 

Edited by member 02 Oct 2022 at 16:03  | Reason: Slight update.

User
Posted 30 Sep 2022 at 13:52

Sorry to hear this Michael. Is your PSA still around the 6 mark then? It’s frustrating for you again as more waiting and wondering I’m sure. Maybe they will look into the chemo as an earlier option now. We were told and I hear others mention the benefit of going in with early chemo, I think that information came from one of the trials. Fingers crossed you see further improvement in 2 weeks time. Keep doing what you’re doing and stay positive. Wishing you all the best x

User
Posted 30 Sep 2022 at 14:16

Hi Elaine, yeah unfortunately.  One of things the consultant was saying was as I am younger I may have more testosterone keeping things at a higher level thus meaning the reduction in PSA stalls a little.  She seems keen to carry on with Abiraterone and Prostap for now.  Chemo is in the plan for so it may be sooner than I expected.  See what this month brings and take it from there. Onwards and upwards :) As I say there are many people a lot worse of than me, so I will stay positive :) thank you for taking the time to reply.  

User
Posted 30 Sep 2022 at 15:24

Well that sounds positive in itself that it seems something she has experienced before and presumably although slower your PSA will get there in time. 


I’m sure you will see a difference in the next few weeks 🤞🏼


All the best Michael and keep us posted x

User
Posted 30 Sep 2022 at 15:36

Ditto Elaine Michael keep positive lots iff thing's they can do  I was diagnosed Gleason 9 psa 24.9 2years on psa 00.1 after 37 lots off radiotherapy just finishing h/t and things are ok  keep moving forward 👍gaz

User
Posted 30 Sep 2022 at 17:03

Thanks Elaine. Absolutely I’m sure I things will improve 

User
Posted 30 Sep 2022 at 17:04

Absolutely, as you say lots of options so onwards and upwards. Glad you are doing well 

User
Posted 30 Sep 2022 at 18:13

Thanks 👍 gaz

User
Posted 31 Oct 2022 at 20:56

Hi Michael. Not sure how its the first time reading your post, as it feels like I’ve read thousands since my OH was diagnosed.   His ‘scores on the doors’ are very similar to yours but with higher PSA, we also live in Scotland but treatment plan seems different with his being Prostap and Chemotherapy.  


 


I hope you are following the Dr’s orders and resting until the MRI!

Edited by member 31 Oct 2022 at 20:58  | Reason: Not specified

 
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