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Chris J's Journey

User
Posted 03 March 2016 07:12:08(UTC)

Thanks for the replies everyone. It is appreciated. I know you will all have different views and I understand that. I did ask him if I was being stupid and he said not in the slightest.
So on with my journey.......
Chris




If life gives you lemons , then make lemonade
User
Posted 03 March 2016 08:17:50(UTC)

And today's Daily Telegraph front page couldn't have come at a better time ....



http://www.telegraph.co....risk-of-new-tumours.html



If life gives you lemons , then make lemonade
User
Posted 03 March 2016 09:38:21(UTC)
Hi Chris,

Haven't seen the Telegraph today. I'll look out for it.

I used to work for them up until the recession. Unfortunately, they made most of the people I worked with redundant and the work disappeared. Was fun though up until that time.

Steve
Thanked 1 time
User
Posted 03 March 2016 13:22:36(UTC)
Chris,

Thanks for the tip re the Telegraph. I read it at the newsstand in my local supermarket this morning !
I was fully briefed re the possible side effects mentioned . In fact I have a further blood test tomorrow for this very reason .
This follows on from Kev's ( I run ) post re poo in blood .

Can't say I'm thrilled about it at all. But it may be something or hopefully nothing. The Onco didn't rule out my problem being resultant from RT .

Keep going . I'm glad you've avoided RT for yourself.

Best wishes ,

John
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User
Posted 03 March 2016 17:02:51(UTC)

Hey Buddy

I just wanted to add my support to you my good friend, I know we are communicating offline everyday but I wanted you to know I was here to read the update.

Keep your head strong buddy, remember dinner is on me this time :)

All the best to you and all the best to everyone else on this fantastic forum...

Raiden

Thanked 1 time
User
Posted 03 March 2016 20:33:54(UTC)
Hi Chris ,
Lovely to see Raiden popping in for you this is what the forum is all about , good advice, information and sometimes just a shoulder and a friendly face.
So yes yes yes so totally agree with all of the above posts. Keep RT in the bag . The more in the bag for when and IF needed the better.
BFN
Julie
NEVER LAUGH AT A LIVE DRAGON
User
Posted 05 March 2016 17:26:41(UTC)

Hi Chris

I've just been reading through your journey.  It might seem trivial to say, with all that's been going on in your life more recently, but a big thanks for the 'heads up' on the risks of overloading the bladder ( 11 July 2015). A timely reminder for me- been pushing the boundaries a bit there myself in a similar way. Your post was a reality check.

Thanked 1 time
User
Posted 07 March 2016 19:48:34(UTC)

Hi all
Re my post on " Turmeric - does it work " , since I've stopped taking it there has been a VAST improvement as regards awful belly ache and rolling nausea. So much so that Onco has cancelled the CT scan and we are just going to watch my PSA for a while. Which is fine by me !
Turns out the Natures Best supplement is Three times the recommended daily allowance. Some people can take it , others not , depending on what else your liver is trying to process at the same time. Gosh it was making me ill. I contacted them today and they were superb and interested and even offered a refund. I shall get a pill cutter and half the dose starting next week maybe.
Chris




If life gives you lemons , then make lemonade
User
Posted 07 March 2016 20:49:56(UTC)

Great news Chris. What a relief, in more ways than one!

Quarter the tabs and work your way UP to a half maybe. That way it would be more gentle on your stomach and you'd know when it was safe to increase it.

I'm very pleased for you though. It just goes to show though doesn't it, that a health supplement isn't always healthy for everyone.

At least you found out in time to stop the CT scan.

xx

We can't control the winds - but we can adjust our sails
User
Posted 08 March 2016 19:35:14(UTC)
Really great news Chris jx
User
Posted 08 March 2016 23:07:40(UTC)

How interesting - just goes to show that Trevor really is superhuman, even his liver!

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


User
Posted 14 April 2016 09:36:19(UTC)

Hi guys
Just an update to my journey. No need to reply !
Oncology appt yesterday. I've been on Bical 150mg HT for 6 months now in total. Still daily tummy ache and nausea , and adhesion pain no signs of shifting. It's annoying as he said adhesions are very rare. And he discounted the HT causing tummy probs , yet Patient.UK which our GP's use clearly has it as a ' very common ' side effect. My psa is 0.14 so a minute rise.
We have decided to stop HT end of August ( we have an amazing family holiday planned and don't want to change things before then ) and then do monthly psa tests until, I reach approx 5. I then have a clear offer of another C11 CholinePET scan at Oxford ( hurrah another night of food and drink at a Premier Inn ). At least this way we are doing something , and being an engineer I will feel happier knowing what's happening inside me . My mindset needs to change radically , as at the present I'm fatigued , over-emotional , depressed , bl***dy impotent which is eating away at me , and highly anxious / irritable. Not a good way to be ! Elaine will be moving me out to our new shed soon :-((.
Best wishes as ever to everyone x
Chris




If life gives you lemons , then make lemonade
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User
Posted 14 April 2016 09:47:31(UTC)

Sounds like an excellent plan to me CJ - I like your onco's approach a lot.

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


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User
Posted 14 April 2016 21:40:40(UTC)
Hoorah for holidays that's what I say,
I hope the shed is going to be a man cave😄 It is sounding good to me CJ . So it's. Smile from me.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
Thanked 1 time
User
Posted 24 August 2016 10:45:18(UTC)

Hi All
So it's taken me 20 mins literally to find my own post. I've asked about this before. It's not in " my conversations " nor in " conversations I have posted in ". And if you type Chris J's Journey in the search bar , absolutely nothing at all. I've asked admin three times now but not resolved. Anyway got there by typing Chris J Journey in. Random heh !! Rant over.
ANYWAY , I've had my lovely holiday and stopped Bicalutamide 150mg HT on Sunday, and Tamoxifen today. Yesterday I had PSA test and the result was a very happily received 0.13 so the cancer has remained controlled for 11 months on HT , and I am nearly 15 months post op. So we are going to let things grow to a PSA of 3 to 5 and then do the PET scan. My Onco still thinks this is the way forward for me and I trust him. RT is still available if I ever want it , but I remain glad I've not had it just on a whim.
At 15months post op I'm beginning to feel I now have permanent ED having had zero natural function nor even one morning erection in this time. However I have now persuaded my doctor to prescribe daily Cialis instead of injections as it is proving the most effective with least side-effects. I still use the pump daily.
So I guess in 6 weeks we will have an idea how aggressive the cancer is , and will be able to plan a scan and future treatment plan. I'm glad I may be able to remain on ADT rather than injection HT to give a better standard of life.
Take care all x




If life gives you lemons , then make lemonade
User
Posted 24 August 2016 13:33:29(UTC)
Lovely update Chris,
The sun continues to shine and its all good news here on the forum. Happy Days.🤗
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 August 2016 13:58:51(UTC)

Hi Chris

A good update.It reads you and onco are taking a well planned approach to keeping PCa under control. Fingers crossed that PSA stays low for many a month.

Ray

User
Posted 24 August 2016 14:01:12(UTC)

Great news Chris.

Good that you are able to hold off on the RT for the time being.

******

We can't control the winds - but we can adjust our sails
User
Posted 24 August 2016 14:02:50(UTC)
Again good post Chris. Seems your onco has a good plan in place.
All the best.
Sandy
User
Posted 24 August 2016 15:53:18(UTC)
Pleased for you Chris. All sounds positive. Take care.

Paul
THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 24 August 2016 16:15:45(UTC)

CJ

http://community.prostatecanceruk.org/posts/t10794-Chris-J-s-Journey

Copy and paste the the above link into your personnel profile, if it works as a link great, if not it is still a reminder of your conversation and people reading your profile can use it to read your relevant conversations.

Good news on the PSA hope it continues, don't give up on the ED, there is still time. 

Thanks Chris

User
Posted 24 August 2016 16:29:12(UTC)

Thanks for the update Chris and Pleased to hear your PSA is staying low 👍🏽

The only time you should look back is to see how far you have come
User
Posted 24 August 2016 17:20:03(UTC)
Great news, Chris.

Celebrate.

Steve
User
Posted 24 August 2016 19:16:21(UTC)

Good news Chris take care Andy

User
Posted 24 August 2016 20:11:29(UTC)

A mixed bag and an anxious few weeks to come, I think. On the up side, you at least can get an erection with assistance. I wonder sometimes if it would be better for surgeons to be really open with men and say "after the op, you may not be able to get an erection without help, but 90% of men can get an erection using chemical or mechanical means by 2 years post op." At least then there would be no unrealistic expectations or disappointment. I suspect there would be an awful lot more men opting for RT or brachy if they knew the reality.

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


User
Posted 24 August 2016 20:30:33(UTC)
Chris
great news on the PSA , I hope you start to feel the benefits of coming off HT and onto prescribed 5mg Cialis daily. It would be soooo good if your PSA took a very long time to increase to 3-5
you could be like George H and others who have a long and successful experience with intermittent HT no?

Anyway for the here and now things are sounding positive and I am really happy for you

my very best wishes and a virtual hug
xxx
Mo
User
Posted 24 August 2016 21:48:43(UTC)

Chris,

This is your "GOOD NEWS", and I hope you enjoy it, and you and your family enjoy it.

Chuffed to bits for you. :-)

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 24 August 2016 22:23:41(UTC)

Originally Posted by: Online Community Member

A mixed bag and an anxious few weeks to come, I think. On the up side, you at least can get an erection with assistance. I wonder sometimes if it would be better for surgeons to be really open with men and say "after the op, you may not be able to get an erection without help, but 90% of men can get an erection using chemical or mechanical means by 2 years post op." At least then there would be no unrealistic expectations or disappointment. I suspect there would be an awful lot more men opting for RT or brachy if they knew the reality.

 

Hi Lyn, anyone reading your post may understand from it, that only 10% of men who opt for surgery recover any form of natural erectile function afterwards.  Is that what you meant?  Is that the case?

And for those 90% who need help and do get erections, is it really the case that for THAT other 10%, they will never ever achieve erections even if they have the pump and third testicle ball shared squeezie thing installed?  I can not remember what it is called, sorry.

I don't know about what every other man who opted for surgery was told about POTENTIAL consequences, but my surgeon told me very clearly the following:

1.  I might die on the table.  He was apparently very content that this was a very low possibility.  I was not content mind you, his "low possibility" was way way too high for my liking. ;-) 

 

2.  I might lose all bowel control forever and be pooing myself uncontrollably for the rest of my life.*

 

3.  I might lose all bladder control forever and be peeing uncontrollably for the rest of my life.*

 

4.  I might never ever have a natural erection again, ever.  He did not tell me the there were chemical and mechanical means of achieving an erection though.  So, I believed that NO MORE erections, EVER, was a possibility.*

 

And I was very clear with him, if in any doubt cut out anything and everything you do not like the look of.   I did not want him apologising to me for a recurrence because he thought he was doing me some sort of misguided favour by leaving some bits in that were going to kill me later!   

 

* and despite all those possibilities, I wanted it out and opted for surgery.  

I was offered Brachytherapy.  I was offered HIFU.  I was offered the seed implants, is that Brachy?  

 

I was offered open surgery by my local NHS Trust surgeon who, on learning that I had opted to go beyond my Local NHS Trust and have the Robot at Reading, told me that if he could have offered me the Robot, he would have but they did not have one, so he came to Reading on his day off to witness my operation performed by a friend of his using the Robot.  

 

As it happens, I only suffered 1 of the 4 potential side effects, Number 1, as I did not die on the table.

I have total bowel control, I have total bladder control, and I have natural erections, rather too frequently for my partners liking!

Surgery is not all bad for anyone or everyone.  

And no one knows what the outcome will be, until you have whatever treatment option you decide on.  

So sadly, we only have one chance and one choice.

Have a good weekend all.

dave

 

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 24 August 2016 23:42:55(UTC)

Sorry CB, I didn't word it quite right. I should have said 90% of men that have nerve-sparing RP will be able to get an erection naturally or by chemical / mechanical means at the 2 year mark. In actual fact, the NHS data is that 10 - 15% of men who have nerve-sparing will never have an erection again, even with help. As far as I know, they do not publish data for the number of men regaining natural erections.

You and John were both fortunate to have surgeons who were honest and upfront about the possible side effects but have you not noticed that recently we seem to have had a number of newer post-operatives that have been ill-prepared and sometimes shocked by the side effects, even in the early days? It seems to me that there must be some surgeons out there who do not explain that incontinence may be highly likely in the first days and weeks after the catheter is removed - we regularly have posts from men reeling that they are not dry a couple of weeks later, or 6 weeks down the line are worried that they haven't had an erection yet. We have also had a member recently that had no idea that he wouldn't ejaculate any more. Maybe it all depends on the hospital - John was given booklets at the diagnosis appointment detailing the different treatments and their possible side effects.

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


User
Posted 25 August 2016 00:36:08(UTC)

Aha,

I understand, thank you.

Have a good weekend, NO, have a GREAT weekend!

Dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 25 August 2016 06:11:26(UTC)
Great news Chris 😊 nice to read after so many lows for you. Take care jx
User
Posted 07 September 2016 12:27:16(UTC)

So guys a big update. More to keep my record up to date rather than bore you all to death. I've had a lot of cancelled ED appts recently so I actually texted my original Uro surgeon and asked to see him privately. Low and behold two days later I got an 8.50 NHS appt. I've had great service.
My surgeon is a ' get all that cancer out and constantly fight it ' kind of guy. My Onco understands my mental fragility and caters around that.
As for my cancer he was upset I didn't do the RT. For the first time we had a full post Surgery review of Histology. Some seminal vesicle left behind but only to protect the nerves. However I did have a positive margin at the bladder area so I am highly likely with a G9T4 N1 cancer to get local recurrence which will need dealing with at some point. But he agreed my post op PSA profile suggested body Mets and so he understood my reasons for turning it down at this time. He suspects when I'm next scanned with CholinePET that they will find further lymph spread ( which can be operated ) or bone spread ( which if small tumours can be RT individually ). But he feels if I go for treatments , I may as well have full prostate bed RT aswell.
As for ED we tentatively agreed I could stay on Cialis 5mg but only as it is giving me happiness. He insists still that latest research says it will not give natural recovery any more than just a pump alone. I explained recent atrophy and peyronies and laughably he said that can't be always linked to cancer and surgery. It could be ' just bad luck '. Or coincidence ? WTF haha. He wants me to take some pictures when I'm next erect , to take to the ED clinic next visit. God almighty the iCloud could send them anywhere. I'm also going to try the new super injection that gives less pain when I visit as I'd be a good candidate and may need to use it if future castration HT renders Cialis useless.
Was good to see him and El and I were happy with talk , but for now we will stick with gentle Onco and his plans.
Best wishes all x




If life gives you lemons , then make lemonade
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User
Posted 07 September 2016 18:19:40(UTC)

Chris,

You are amazing, keep at it young man, best regards to you and El

x

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
Thanked 1 time
User
Posted 07 September 2016 23:00:06(UTC)

More or less John's onco's words Chris - if there are a few small bone mets they can be zapped individually and lymph nodes can be removed surgically. The affected part of his bladder had been removed during the RP though and he has already had the salvage RT to prostate bed & bladder neck so I am thinking that perhaps you will be persuaded to have the RT if the PET scan comes back with good news?

John's PSA result tomorrow & onco next week :-/

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


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User
Posted 08 September 2016 06:22:11(UTC)
CJ

Thanks for the update it is useful to hear people's journeys and to hear how our friends are getting on. Some tough choices to be made but at least we are still here to make them and I wish you well.

I showed my consultant a picture on my phone of blood dripping out of my penis, he said "it's a good job you don't have to go to Boots to pick the photos, you would get locked up".

Take care.

Thanks Chris
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User
Posted 08 September 2016 07:48:31(UTC)

Thanks for the update Chris
You are at true fighter and the support you offer to others is appreciated,

Viv

The only time you should look back is to see how far you have come
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User
Posted 08 September 2016 12:35:09(UTC)
Hi Chris thanks for the update glad it was a positive meeting for you and E. Still looking at those websites 😊 jxx
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User
Posted 11 October 2016 09:07:50(UTC)

Hi LynEyre

Just read your post with interest, in this day and age every man should be given all the information with regards what the side effects would be from every treatment route.

My consultant gave me all the information without missing anything out and highlighted the pros and cons of each, although a lot more cons than pros. All the information is out there via the proper websites like this one so a wee bit of self research is a must. I went into my surgery with the knowledge that nothing was going to be spared and that RT would be required afterwards. The only downside was the fact that I had to go on HT implants, really wanted to stay away from these but as my consultant stated they are trying to throw everything at the PCa to get rid of it.

I would highly recommend anyone to get as much information prior to setting out on their journey so they know all that matters plus always take someone with them as the information can get lost pretty easily. There's no denying its a long journey for everyone. I know some men may want to bury their head in the sand but I wanted to know all I could about PCa and I would urge all men to do the same.

My biggest problem at the moment is the ED side of things been on 5mg Cialis topped up by 20mg but not much movement at all, which was to be expected due to the non nerve sparing surgery. Getting a pump delivered today so feeling like a kid in a sweetie shop so hopefully xmas will come a wee bit early. My ED nurse has been fantastic and the next step will be an injection if pump is not successful but my nurse is confident something will happen. I also have RT to look forward too from the 18th Oct.

The only thing I found throughout is that sometimes you have to take matters into your own hands and pester some people via phone calls etc to get their attention, as I believe if I didn't contact the ED nurse direct then I would still be waiting.

Take care all.

Onwards and upwards.

Sandy

User
Posted 11 October 2016 09:18:16(UTC)

Update only.
Six weeks off the Bicalutamide HT and PSA up from 0.13 to 0.45.
So the doubling time is 2.4 weeks.
So wherever my Mets are , they're not happy bunnies at all. Could just be a mini flare up , but to be honest the sooner I have the scan the better in my opinion.




If life gives you lemons , then make lemonade
User
Posted 11 October 2016 11:49:15(UTC)

Hi Chris,

Thanks for the update.

Hopefully, it may be an effect of coming off the Bicalutamide HT.  I've been warned that my PSA will probably rise now I've stopped my HT but hopefully this should come down again to what will be my normal level.  It's sometimes the flare effect of finishing HT treatment.

Worth checking out.

All the Best,

Steve

User
Posted 11 October 2016 12:42:00(UTC)
Hi Chris how soon can you get a scan? Jx
User
Posted 11 October 2016 12:47:49(UTC)

We waiting for PSA to reach 3 to 5 to make sure we can see the suckers wherever they are grrrr




If life gives you lemons , then make lemonade
User
Posted 11 October 2016 18:10:57(UTC)
Chris
I completely forgot about the possibilty of a "flare" rise when coming off Bicalutamide, I had always been led to beieve it was common when first going onto it but had not thought about it happening when you come off it . Do ask about that when you see the Onco. If it is a viable reason then maybe the next test will reflect that? I am almost certain it is as you say, they will not want you to have that scan until your PSA indicates that any mets will actually be identifiable and located.

all my very best wishes for your Onco session
xx
Mo
User
Posted 11 October 2016 20:24:27(UTC)

Originally Posted by: Online Community Member

Update only.
Six weeks off the Bicalutamide HT and PSA up from 0.13 to 0.45.
So the doubling time is 2.4 weeks.
So wherever my Mets are , they're not happy bunnies at all. Could just be a mini flare up , but to be honest the sooner I have the scan the better in my opinion.

 

You are not thinking clearly my friend - the rise from 0.13 to 0.45 is perfectly normal, it would be weird if the score didn't rise after the HT is stopped. The hormones have held the PSA falsely low - you are now going back to a more normal level because the cells are no longer being starved. 

Obviously 0.45 is high for a man with no prostate but you can't calculate your doubling time from these two numbers, my friend ... it simply doesn't work like that. 

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


User
Posted 11 October 2016 20:30:23(UTC)

That's quite patronising Lyn.




If life gives you lemons , then make lemonade
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User
Posted 11 October 2016 22:16:44(UTC)

Not intended to be, just on a train x

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


User
Posted 11 October 2016 22:38:31(UTC)

Hi Chris,

I know how worrying it is when PSA starts to rise, as you say '...We waiting for PSA to reach 3 to 5 to make sure we can see the suckers wherever they are grrrr...'

Thing is when I was in that position back in 2013, my PSa rose 2 to 4, in 6 months and 4 to 6 in two months, at which point I had an appointment with the Consultant's assistant, I think they call them 'housemen'.  The scheme they had in place at my hospital was that patients got to alternate, seeing the main consultant at one appointment, and his assistant at the next one.  So I was only seeing the main man once a year.  Anyway with PSA at 6 and rising rapidly the assistant 'houseman' suggested I go back on HT and I had no qualms about that.

He was also telling me at that time that because I had already had one bout of radiotherapy, there were no treatment options other than HT.  So logically there was no point in further scans, because they were not going to do anything other than HT whatever the scans might show.

Later, having done a little research myself, and identified options such as cyberknife, and having sent them a polite and detailed letter, I ended up getting referred to another hospital for salvage HDR brachytherapy.  

Then I had to have scans, indeed I had the full set of MRI/CT and Bone scans twice, not because they were so much looking for PCa, but because they were double checking that I was otherwise healthy and not about to die from something else.

They picked up interesting facts like I have arthritis, I had cysts on my kidneys, two different types of cysts on my thyroid gland etc, but none of the scans were of any use for finding the PCa as my prostate and surroundings were likened to a bombsite, they had to do template biopsies to find the actual cancer.

In the middle of all this, I actually got my 6 monthly appointment with my Consultant, he is a nice guy, I have every faith in him, but he has that habit I guess a lot of doctor's have, of looking at his notes and bringing himself up to date while you are sitting next to him.  He read through my notes, and sort of asked me 'you went back on HT when your PSA got to 6?'  When I replied yes, he said sort of talking to himself that he might have been inclined to let it go higher, he didn't say how high and I didn't ask.  

I wish I had taken that conversation further because he was implying that when the PSA starts to rise there is some minimum threshold it needs to cross, before there is any chance of seeing a tumour on a scan, and presumably in my case with an irradiated prostate that was higher than 6?

Right at this moment I am feeling very uneasy, on paper I am doing very well, my last PSA was a mere 0.2, but I can sort of sense, a gut feeling, (I almost said a feeling in my bones!) that it is on the rise, quite how high it will be prudent to let it rise to before going back on HT is something about which I am far from clear.

I suppose it is a sort of bare knuckle ride, because the higher you let PSA go without treatment, the more chances of further spread, but as you say you need it high enough to see the suckers?

I don't know if any of this helps?  But best of luck.  

:)

Dave 

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User
Posted 24 November 2016 10:29:52(UTC)

Hi folks
17 months post op and 1 year of HT.
PSA rise from 0.13 to 0.45 after 6 weeks off HT.
Today's result 12 weeks off HT is 0.91. So a doubling in six weeks which is similar to pre op. Based on this CholinePET will be mid to end Feb but remaining on 6 weekly testing
Chris




If life gives you lemons , then make lemonade
User
Posted 24 November 2016 14:03:18(UTC)

Don't know what to say Chris. I don't have the knowledge to comment.

Just to let you know I've seen the post and feel for you as I know this is going to worry you.

Hopefully somebody will come along to reassure you

Best Wishes

Sandra

********

We can't control the winds - but we can adjust our sails
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User
Posted 24 November 2016 14:54:10(UTC)

Hi Chris.

Sad to read your latest update. Perhaps this is not much comfort but it could be PSA will rise to pre HT (2.4) at the same rate as now and then stay there or at least slow down somewhat. Hopefully a future PET will pick up just a single cluster that can be easily got rid of.

Good luck

Ray

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