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Advanced prostat cancer part 2

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User
Posted 15 Jan 2017 at 18:57

Just to be clear, the strap-on is actually a ride-on mower which Trevor doesn't use very often. I wouldn't like anyone to get the wrong idea about him :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Jan 2017 at 19:01

Too late for explanations Lyn - the image is firmly (and disturbingly) fixed in my brain!

User
Posted 15 Jan 2017 at 19:04

Ahhhh, mow mow not dildo.


 

User
Posted 16 Jan 2017 at 19:29
I am so glad that Lyn explained that so elequently it has been for those newish to the forum a long standing joke about our ride on. The avatar is Trevor sitting on the ride on but by the shape of his hands he could well be sitting on a strap on. πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚
Love you all
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 Jan 2017 at 19:38
If any of you techno guys can find it there is a post about the ride on , on Si supermans thread it was yonks ago but I think it would lift everyone's spirit if some one could repost it here. I am throwing the gauntlet out there.
BFN
Julie X
Ps it was about it not fitting through his letter box
NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 Jan 2017 at 20:32
User
Posted 16 Jan 2017 at 21:43
What a diamond co. ❀❀thank you.
NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 Jan 2017 at 22:53

Hi Julie, back from a weekend away and so good to hear the turn in fortunes again. The rollercoaster goes on. 4 years for you and Si, five years for me, we keep this forum full of good news!

User
Posted 16 Jan 2017 at 23:02

Fantastic news Julie I am so happy for you. The radium is working its magic along with the Turmeric he certainly is superman

Molly xxx

Edited by member 16 Jan 2017 at 23:03  | Reason: Not specified

User
Posted 23 Jan 2017 at 19:29
Oncology visit today and Cardiology on Wed so a week ful of Ologies .

We still hadn't heard anything about Trevor's appointment to try and sort out the teeth situation so the Wiz chased it up today and the appointment is 16/2/17'so hopefully that problem will improve. The antibiotics have been ongoing to help with the abscess as soon as he finnishes the course another one erupts, he describes it like having his teeth in a vice were the bone is growing between them. I am running out of ideas for soft food and I know that because his diet has been dictated by what he can eat and not what he would like to it this has contributed to his weight loss he is down from 93kg to 85kg .

So scores on the doors, (I am just going to backtrack)

28/11/-PSA 3582
22/12/16- PSA 5331----ALP 297
30/12/16- PSA 3692----ALP 383
18/01/17- PSA. 3188----ALP 494

So PSA dropping ( yes Lyn I hear those little grey cells)
ALP rising ( still hearing those grey cells Lyn)
Thoughts on a postcard please.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Jan 2017 at 19:44
SS

I am not sure I can offer much useful advice on the scores. I know ALT is also affected by any bone trauma and so those teeth issues may be contributing to that. PSA is coming down so maybe the Radium is continuing to do something. The weight loss is quite fast but eating all soft food is probably not helping. If he can't chew anything have you tried high protein drinks, rice puds and stuff like that. One of Mick's favourites was mashed potato and gravy ...lots of it.
I know you have had an awful time since before Christmas but if Trevor is still active, driving and not in pain then that is a major blessing.

Thinking of you as always
xxx
Mo
User
Posted 23 Jan 2017 at 19:46

I ain't panicking yet - PSA drop after Radium is exactly what you would hope to see and since Zometa can lead to a drop in ALP, it seems sensible that stopping Zometa may lead to an increase?

The scores on your T's doors are slightly unreliable anyway so best to go with how he is in himself x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Jan 2017 at 21:20
My two favourite lady's 😍
Thank you for such a fast response correct me if I am wrong but I thought that the Raduim would have no affect on the PSA ? As it is only targeting the bone or is the bone mestasis also giving of PSA? Everything I have read says that PSA is of no consequence when on Raduim .

And Alp is rising so showing a progression in bone .
HB was higher than it has been for a while at 9.8 and was at 9

He has been on Abbiraterone for over a year in fact it has been 15 months and there was some very small reductions in PSA in the beginning but the overall trend has been upwards.
I am not sure what to make of the results it seems conflicting to me .

BFN
JulieX
NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Jan 2017 at 21:59

Hi Julie


I've been doing some research on Radium 223 since my OH will be starting it soon and you are right - it doesn't target the PSA. Nonetheless some men in some trials did see lower levels of PSA (and some had a a sudden rise). All seems a bit random really! And when you factor in Trevor's unique titanium and tumeric constitution best guess would probably be that no-one will have the foggiest idea. Hope he continues to be a medical phenomenon for the foreseeable...


Love


Eleanor


x

User
Posted 23 Jan 2017 at 22:12

Maybe it is just flawed theory in my head but the ALP can drop on Zometa so it seems obvious that when the Zometa stops, the ALP might go back up a bit?

I like Mo's suggestion that it could be all the jaw activity instead????

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Jan 2017 at 22:34

From the Prostate Cancer Research Institute 2017 update:-


"Radium-223 may also reduce PSA levels. As most know, PSA levels are an indicator of cancer progression, with higher PSA values corresponding to worse outcomes. A significantly larger proportion of the radium-223 patients experienced at least a 30% reduction in PSA levels compared to the men who received a placebo. Although most patients do not experience a decline in PSA, they may notice a slowing of the PSA rise, which is a more common outcome with radium-223."


http://pcri.org/insights-blog/2016/7/8/xofigo-radium-223-an-overview


 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Jan 2017 at 22:41
I have just reposted something from Allathays on Raduim and PSA I am not techno enough to copy and paste it on here but he is saying the same that Raduim has no affect on PSA. I had forgotten that he had the ful 6 treatments. .

Lyn Zometa also doesn't reduce PSA it helps with bone pain and helps to strengthen the bone but has no affect on PSA .

So if Raduim isn't reducing it then what is ?

Titanium ? This is a very strong contender as Eleanor has pointed out.
Trevor himself as he is such an egnima this could be another strong contender
Abbiraterone I really doubt it after 15 months
Turmeric I also don't think so he has given this up
Cancer so active that it isn't giving of much PSA another strong contender given that the ALP is rising
Super human and about to make prostate cancer history another strong contender.

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Jan 2017 at 22:45
Brilliant Lyn. ❀
NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Jan 2017 at 22:54
So can the PSA still come from the bone mestasis? I am presuming because it is still pca it possibly could . ?
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Jan 2017 at 00:51

Yes I think it is safe to assume that pretty much ALL of T's PSA is coming from his boney mets :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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