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Just want to say hi and share my story.

User
Posted 30 Dec 2024 at 21:10

Hi all

Just wanted to introduce myself and share my story, my name is Joe, I am 63 (although in my head I'm 33) I work in nhs mental health services. I am blessed to have the support of my amazing wife and family.

I was diagnosed with metastatic prostate cancer recently in October 24, PSA level of 164, gleason score of 9, sadly, my story is too similar to a lot of the posts I've been reading on here, I have the disease in the pelvis, spine, bladder, ribs, sternum,  lymph nodes and shoulder. I started the HT injections on the day of diagnosis, and started the HT tablets (Darolutimide) today, I start chemo on the 27th of this month. I remain hopeful and take things as they come, I refuse to let this disease consume nor define me. I hope to return to work soon, albeit with reduced hours, and I hope to get back on the golf course real soon.

I understand HT treatment may come with some nasty side effects although, a lot of the emphasis has been put on the fatigue aspects and possible weight gain. I am trying to plan for chemo via gradually having my hair cut in stages until I get to the wood, just to reduce the shock factor. I can't do much more until the side effects rear their ugly head and I know what I'm up against. That's all folks! Thanks for being here and I wish you all well on your journey. Joe.

User
Posted 30 Dec 2024 at 22:32

Hi Joe, sorry you're here. Well if you've read a lot of posts on here you will know it is pretty hard to predict your future. We have had people for whom HT has not worked from day one, but that is rare. We also have people for whom it has worked for a decade or more. Similarly the side effects can be quite minor to quite severe. You will just have to live your life as best as you can and accept the uncertainty.

 

Dave

User
Posted 30 Dec 2024 at 23:10

Originally Posted by: Online Community Member
I remain hopeful and take things as they come, I refuse to let this disease consume nor define me.

Hi Joe.

I love your attitude, mate. Best of luck with your treatment. 👍

User
Posted 31 Dec 2024 at 13:56

So sorry you have joined this club, sounds like you have the right attitude to cope with the treatment, All the best for the new year

User
Posted 01 Jan 2025 at 10:24

Hi Joe, 

Not the news that anyone wants to hear. Your post is inspiring and I hope that your treatment will be successful and not too hard to bear. 

Peter

User
Posted 01 Jan 2025 at 11:49

Hi Joe - 

welcome to the club!  Best of luck with your treatment. 

If you're having Docetaxel as your chemo (it's the usual one for prostate cancer), I have a couple of tips that were given to me that I found really helped:

- before you start the chemo, take a high-dose vitamin B supplement that includes all the various types (B6, B12 etc etc).  Docetaxel can cause nerve damage and loss of sensation in fingers & toes, the vit B supplement helps to counteract this.

- take a thermos flask of ice cubes with you to suck while you're having the infusion.  This helps to reduce the 'chemo metal mouth' sensation and the loss of sense of taste that the chemo causes.   

You're starting off with a great attitude, as my consultant said to me when I was diagnosed:  'don't make your life all about the cancer, remember to live it too.'  Do get out on the golf course and do what pleases you.  

All the best, Craig

User
Posted 01 Jan 2025 at 12:22

Best of luck with it all Joe. Do keep sharing and let us know how you're doing.

All the best

Gus 

User
Posted 02 Jan 2025 at 06:56

Thanks Craig! I'll keep that in mind and stock up before I start later in the month.

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User
Posted 30 Dec 2024 at 22:32

Hi Joe, sorry you're here. Well if you've read a lot of posts on here you will know it is pretty hard to predict your future. We have had people for whom HT has not worked from day one, but that is rare. We also have people for whom it has worked for a decade or more. Similarly the side effects can be quite minor to quite severe. You will just have to live your life as best as you can and accept the uncertainty.

 

Dave

User
Posted 30 Dec 2024 at 23:10

Originally Posted by: Online Community Member
I remain hopeful and take things as they come, I refuse to let this disease consume nor define me.

Hi Joe.

I love your attitude, mate. Best of luck with your treatment. 👍

User
Posted 31 Dec 2024 at 13:56

So sorry you have joined this club, sounds like you have the right attitude to cope with the treatment, All the best for the new year

User
Posted 01 Jan 2025 at 10:24

Hi Joe, 

Not the news that anyone wants to hear. Your post is inspiring and I hope that your treatment will be successful and not too hard to bear. 

Peter

User
Posted 01 Jan 2025 at 11:49

Hi Joe - 

welcome to the club!  Best of luck with your treatment. 

If you're having Docetaxel as your chemo (it's the usual one for prostate cancer), I have a couple of tips that were given to me that I found really helped:

- before you start the chemo, take a high-dose vitamin B supplement that includes all the various types (B6, B12 etc etc).  Docetaxel can cause nerve damage and loss of sensation in fingers & toes, the vit B supplement helps to counteract this.

- take a thermos flask of ice cubes with you to suck while you're having the infusion.  This helps to reduce the 'chemo metal mouth' sensation and the loss of sense of taste that the chemo causes.   

You're starting off with a great attitude, as my consultant said to me when I was diagnosed:  'don't make your life all about the cancer, remember to live it too.'  Do get out on the golf course and do what pleases you.  

All the best, Craig

User
Posted 01 Jan 2025 at 12:22

Best of luck with it all Joe. Do keep sharing and let us know how you're doing.

All the best

Gus 

User
Posted 02 Jan 2025 at 06:56

Thanks Craig! I'll keep that in mind and stock up before I start later in the month.

 
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