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Intro - Matt

User
Posted 06 Feb 2019 at 13:50

Hi everyone,

My names Matt, I'm a 45 year old loving husband and dad who was diagnosed with stage 4 PCa last September, which was rather unexpected. 

My BIO is up to date as always requested by fellow members and I'm happy to tell my personal story at the right point if that would be a help.

Held off from forums up to now but finding that while my friends are great to speak to, particularly after the mini low you can get when finishing a big treatment (just finished RT in line with Stampede trial) I would like to speak with people who are in a similar situation or supporting someone who is.

Hoping I can help other people on the forum after all of my experiences over the last year or so as well as gain support, info and hopefully some smiles along the way from other forum members as we all darn well need some help on this journey life has taken us on against our will.

Right now is about keeping active, eating well and trying to get on with life!

See you all around.

Cheers

Matt

 

 

 

User
Posted 06 Feb 2019 at 13:50

Hi everyone,

My names Matt, I'm a 45 year old loving husband and dad who was diagnosed with stage 4 PCa last September, which was rather unexpected. 

My BIO is up to date as always requested by fellow members and I'm happy to tell my personal story at the right point if that would be a help.

Held off from forums up to now but finding that while my friends are great to speak to, particularly after the mini low you can get when finishing a big treatment (just finished RT in line with Stampede trial) I would like to speak with people who are in a similar situation or supporting someone who is.

Hoping I can help other people on the forum after all of my experiences over the last year or so as well as gain support, info and hopefully some smiles along the way from other forum members as we all darn well need some help on this journey life has taken us on against our will.

Right now is about keeping active, eating well and trying to get on with life!

See you all around.

Cheers

Matt

 

 

 

User
Posted 09 Feb 2019 at 23:18
I’m pleased to say neither have had an effect for me in that area Bob.

RT was bearable. I had the choice on Stampede as it’s not curative to have the usual PCa 5 days a week for 4 weeks or a larger dose 1 day a week for 6 and went with the latter as my gut said it could be more effective. You get 3/4 of the overall dose in many fewer sessions.

The RT team seemed to think the bigger individual dose made some of the side effects worse. I did feel quite sick for 48 hours and was very tired, and this built up over the weeks. Then again I then had a week to get over it before being hit again.

Speaking with other blokes there while waiting for my liquid to fill my bladder the biggest challenge for the 5 day a week one was simply it being every day for a week being even more tiring. Hardest thing is timing a full bladder.

All the best with your RT. Im sure you’ll sail through,

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User
Posted 08 Feb 2019 at 18:47
A belated hello Matt.

There will be men on here who would perhaps benefit from your experiences.

You'll certainly get support when you need it.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 08 Feb 2019 at 22:14
Hi Matt ,

Just a (unwelcome your here) welcome ,you’re certainly in the right place to get any help/ support you need and we all welcome personal experience from members to help us along our journeys. Keep posting any up dates and certainly ask away any questions .

Best wishes

Debby

User
Posted 09 Feb 2019 at 18:19
Hi Matt.

How have you managed with the stampede trial. The reason I ask is I am due to start RT sometime late March early April and a fiend of mine who had the treatment a couple of years at the same hospital as me was asked to do the trial and he had advised me if asked to refused beacause in his words his 2 year old grandsons has now got a bigger one than him.

User
Posted 09 Feb 2019 at 21:43
It’s the HT that causes that Bob, not the RT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Feb 2019 at 23:18
I’m pleased to say neither have had an effect for me in that area Bob.

RT was bearable. I had the choice on Stampede as it’s not curative to have the usual PCa 5 days a week for 4 weeks or a larger dose 1 day a week for 6 and went with the latter as my gut said it could be more effective. You get 3/4 of the overall dose in many fewer sessions.

The RT team seemed to think the bigger individual dose made some of the side effects worse. I did feel quite sick for 48 hours and was very tired, and this built up over the weeks. Then again I then had a week to get over it before being hit again.

Speaking with other blokes there while waiting for my liquid to fill my bladder the biggest challenge for the 5 day a week one was simply it being every day for a week being even more tiring. Hardest thing is timing a full bladder.

All the best with your RT. Im sure you’ll sail through,

User
Posted 09 Feb 2019 at 23:23
Thanks for the warm welcome all.

You’re right this is the forum no one wants to join, but it doesn’t mean it’s not a nice place to be.

Great to see so many supporters on here as well as people with PCa. I wouldn’t have made it this far without my amazing wife.

User
Posted 10 Feb 2019 at 17:44

Hey matt. 

 

your diagnosis is along the lines of my dads , he is gleason score 7  metatstic spread to lower back, ribs and clavicle. 

 

He has started his hormone injection and is due to start chemo in april . I was interested to see you were offered radiotherapy as well was this offered at the start or after chemo had finished? 

 

thanks 

amy 

User
Posted 11 Feb 2019 at 08:29

Hi Amy

RT wasn't starting to be offered as standard alongside Chemo and HT until very recently when the Stampede trial put out its results last Sept so I wasn't offered it when my treatment plan was made.

However I was fortunate to have a second opinion via [Doctors name removed by moderator] at the Marsden who ran the trial so I was able to speak with him when the results camp out and he confirmed that for low burton metastatic PCa it can make a significant difference. Following speaking with him I asked my onco for RT and was able to start pretty quickly.

The Stampede trial is about giving RT straight after Chemo, although in my case [Doctors name removed by moderator] though six months gap shouldn't make a massive difference. I would imagine straight after the tiredness will be compounded but compared to Chemo it's a walk in the park.

I took 6 fractions with one bigger dose per week, your dad may as an option get offered 5 fractions a week for 4 weeks at a lower dose for each fraction.

They don't' know why it works but think the RT boosts your immune system. I had a choice and reasoned that a bigger dose less frequently will give my immune system more time to boose. My onco agreed.

There's a good article on the forms on the trial.

https://community.prostatecanceruk.org/posts/t17637-Radiotherapy-breakthrough-for-Advanced-Prostate-Cancer

It's not a really easy treatment, especially I would imagine straight after Chemo but it's also I would say manageable and worth any positive outcome.

All the best to your dad through his treatment :-) Hope this helps.

 

Edited by member 11 Feb 2019 at 11:19  | Reason: Not specified

 
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