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From Focal Therapy to RALRP

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User
Posted 14 Mar 2020 at 13:11

Hi, guys.

I'm 66 years old, and you may be interested in my journey from focal therapy in 2014 to radical prostatectomy in February 2020.

http://andrewhamm.co.uk/prostate/blogdetails.htm

Please note: this is a different web domain to the previous one, which no longer works.

Edited by member 15 Mar 2020 at 07:31  | Reason: Domain change

______Grateful for the goodness of God________

User
Posted 16 Mar 2020 at 10:25
Thank you Peter.

Mine is Arovi but also says its enoxaparin so is the same.

Finding I dislike injecting it more as I improve, possibly because I'm in a less 'clinical' mindset!

______Grateful for the goodness of God________

User
Posted 26 Mar 2020 at 12:29

All of us who had the radical at UCLH were given the 28 days injections.

It's to prevent blood clots. 

______Grateful for the goodness of God________

User
Posted 26 Mar 2020 at 12:53
28 days for me too (not at UCLH).
User
Posted 26 Mar 2020 at 13:12
Some hospitals require all post-surgical patients to self inject; others only require it of patients that have been assessed as at risk of blood clots.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Mar 2020 at 13:57

Appletree 


Tried to respond but your inbox is full 😀

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User
Posted 14 Mar 2020 at 14:55
I am interested, but your web page is down.

Cheers, John.

User
Posted 14 Mar 2020 at 15:03
Hi, John.

Please have another go.

I'm asking my family to check they can get the page from where they live.

Where are you located?

______Grateful for the goodness of God________

User
Posted 14 Mar 2020 at 15:49
Glad you join us Andy but sorry it is because of PCa. I got your web site up OK and indeed have 'dipped' into it a few times over the years Your story is interesting and you have gone to considerable pains to detail it. I will take the opportunity to bring myself up to date with your progress. The links you give are also most interesting. I had HIFU at UCLH for failed RT and before having it asked about RP as an alternative. I was asked if I wanted almost 100% chance of permanent incontinence so I opted for HIFU! Another small tumour has since grown and depending on result of MRI a further HIFU treatment may be offered although I would have to accept greater risk of a Fistula forming So very interested in your experience.

I know that you have done a lot of research and inquire whether have done any research or discussed with anybody about TULSA - PRO (a newer alternative way of administering HIFU?)

Barry
User
Posted 14 Mar 2020 at 16:15

Hi, Barry.
Thanks for your reply.
Interesting to hear of your failed RT,. I was originally considering RT, as you can see from my blog.
But we're all different, with individual diagnoses.
TULSA - PRO looks very interesting. It isn't an option offered by UCLH.
Since the focal group ** removed for privacy** said that further focal therapy wasn't feasible because of my latest out-of-field recurrence being too near my sphincter, then I would assume that TULSA - PRO would also not be feasible in my case.

Let me know how you get on with the next HIFU. When will it happen?

 

Edited by moderator 14 Mar 2020 at 20:14  | Reason: Doctors name removed

______Grateful for the goodness of God________

User
Posted 14 Mar 2020 at 19:54

Sounds like you are making good progress. Hope all is going well post op.

Sorry to hear you had pain immediately after the op. Think I escaped that after braving an epidural. The clexane daily injections are interesting for sure. I opted to inject in my front high thigh. Mostly paint less as I have a small area I discovered that I relatively numb. I think some an old impact injury so used that as my favoured location...occasionally got it wrong and quite painful inserting. Couple of times took a few attempts to find a better site a few centimetres away. But after 28 days nice to see the end of those and compression stockings.

TG

Edited by member 14 Mar 2020 at 20:02  | Reason: Not specified

User
Posted 16 Mar 2020 at 09:57

Just in case you get a different name, like I did (Clexane is only a trade name), the chemical name is Enoxaparin sodium, which will be on the label.

User
Posted 16 Mar 2020 at 10:25
Thank you Peter.

Mine is Arovi but also says its enoxaparin so is the same.

Finding I dislike injecting it more as I improve, possibly because I'm in a less 'clinical' mindset!

______Grateful for the goodness of God________

User
Posted 17 Mar 2020 at 09:39

It's difficult to find a site that is away from any of the incisions, 2" away from the belly button and that you haven't used several times already! I find that it is better lower down - but not too low as there's not much fat there!

And yes, I find myself becoming increasingly reluctant too. Might also be related to stopping the painkillers.

User
Posted 17 Mar 2020 at 09:43

Nurse said to me front upper leg was fine. Found a sweet spot there. Not always painless but felt better than impaling my torso....I was too squeamish for that.

User
Posted 17 Mar 2020 at 09:47
Yes I was told to alternate between my thighs. No way i would inject in belly! It's odd that the leaflet in the injections says belly, when they should know a good percentage of patients will have had a radical.

______Grateful for the goodness of God________

User
Posted 17 Mar 2020 at 09:50

I was never shown how to do it exactly. However I found putting it in slowly and not very deep was very painful. District nurse told me to just go for it. Tried this and almost when tight the way in. Not forgetting to pinch the skin and to my surprise it was quite painless. Didn't really matter where it worked for me and good luck with your recovery.

User
Posted 17 Mar 2020 at 09:59
Yes

I was fortunate in that the morning in hospital after my Surgery, the nurse came to give me the first of these injections.

She let me do it, and gave me instructions.

I did spill a bit.

One thing she said was not to rub it (as I was doing). Sur enough, it bruised.

I avoid that now, so no bruising.

______Grateful for the goodness of God________

User
Posted 17 Mar 2020 at 10:37

After 28 days my legs looked dubious along with arms after the bloods and lines.  That had been in. Clears up nicely though....I still hate bloods even after all the stuff I’ve had 🤷🏼‍♂️😀

User
Posted 26 Mar 2020 at 12:25

Hi TG,

Whats all this daily injection for pls? And everyone post op needs to do this? If yes, for how long? 

This is the first time that I have heard of this. Thanks so much! 

User
Posted 26 Mar 2020 at 12:29

All of us who had the radical at UCLH were given the 28 days injections.

It's to prevent blood clots. 

______Grateful for the goodness of God________

User
Posted 26 Mar 2020 at 12:53
28 days for me too (not at UCLH).
User
Posted 26 Mar 2020 at 13:12
Some hospitals require all post-surgical patients to self inject; others only require it of patients that have been assessed as at risk of blood clots.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Mar 2020 at 13:29

Hey AT

its a NICE recommendation to prevent post op blood clots. I had 28 days clexane.

just checking your PM now :-)

TG

User
Posted 26 Mar 2020 at 13:57

Appletree 


Tried to respond but your inbox is full 😀

User
Posted 26 Mar 2020 at 14:08

Thanks lots! just deleted some and see if it’s working now? 

 

 
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