I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error
<123

Leo Robot spares some nerves

User
Posted 05 Feb 2020 at 08:19
Re PSA velocity you should disregard this when using the supersensitive assay (<0.1) it's not relevant for diagnostic purposes until it's greater than 0.1. certainly never pull the trigger on any treatment with one raised supersensitive assay result.
User
Posted 29 Apr 2020 at 23:11

Another 3 months have elapsed, but down here in Cornwall the usual procedures have lapsed due to the novel coronavirus lockdown.

I attended the local GP's surgery for my PSA test, wearing a mask of my own. Even so I wasn't permitted inside the building. My blood was extracted whilst I sat in the front seat of my car by a nurse wearing a "Darth Vader" style mask. Much more imposing than mine! Before doing that she stuck in infra-red thermometer in my ear. It showed 36.6 degrees so no alarms were raised. Pictures of said car park are available at:

http://Davidstow.info/2020/04/lisa-the-leaf-goes-to-the-locked-down-doctors/

Should you turn up on foot instead of in a car your blood is extracted inside the tent next to the surgery.

I then had an appointment to visit Treliske Hospital in Truro to see my consultant, but that was cancelled and instead I received a phone call from the Clinical Nurse Specialist. My PSA is unchanged at 0.1, so nothing is to be done other than another PSA test in 3 months time.

We also discussed the impact of Covid-19 on the radiology department at Treliske. It seems that they are trying to avoid performing any radiotherapy for prostate cancer at present, instead delaying the need to undergo such treatment until (hopefully!) post the Covid Crisis by judicious use of hormone therapy.

Jim

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 22 Jul 2020 at 00:58

Another 3 months have elapsed, but not a lot has changed. My blood was extracted in the tent outside my GP's surgery by the same nurse wearing the same "Darth Vader" mask.

A week later I received another phone call from the Clinical Nurse Specialist telling me not to bother turning up to my pre booked appointment with my consultant. My PSA is unchanged at 0.1, so once again nothing is to be done other than another PSA test in 3 months time.

By way of a change I was also informed that since Treliske already had a sample of my blood I had been randomly selected to receive the added bonus of a Covid-19 antibody test. That was negative.

Which reminds me that I've been waiting for an appointment for a CT scan at Derriford for 3 months or more. By way of another change that's for my heart and lungs rather than potential mets.

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 22 Jul 2020 at 09:02
It does seem to be stable at the moment; I wonder if you will just turn out to have quite high natural PSA level? John's PSA has bobbed around between <0.1 and 0.11 for three or four years now and the onco says it might just be his new 'normal'.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Jul 2020 at 14:25

Hi Lyn,

My fingers and other appendages are currently all firmly crossed, in the hope that your "new normal" theory is correct.

I've also finally received my appointment for a CT scan at Derriford Hospital in Plymouth at the end of the month. Chest not lower abdomen!

Jim

 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 01 Aug 2020 at 09:30

Hi Jayman,

Thanks for your kind words and good wishes.

Whilst I'm very thankful for the fine work Leo performed on my nether regions I'm no fan of "mainstream medicine". I ended up having two CT scans in Plymouth. I was lying down all ready to enter the maw of the first one when they told me "we're just going to give you some beta blockers now". "Oh no you're not!" quoth I. "I am not a fan of pills and potions".

The consultant came out of his glass cubicle and explained it all to me and in the end I very reluctantly agreed. They also had me perform the "hold your breath for as long as possible" trick to reduce my heart rate, which was much more to my liking.

After the first scan said consultant decided the ancient "out patient" scanner I'd just emerged from wasn't quite up to the job and packed me off for a retest on the more modern "in patient" scanner, where I had to wait in line amongst people flat on their backs being wheeled in and out in a hurry. Allegedly I might have to wait 4 weeks for the results.

To be frank I'm not into allegedly "natural remedies" a whole lot either. I just like to eat mostly (but not exclusively) vegetarian food and keep on cycling and surfing. Not to mention the occasional s****ing session as well! Vacuum pump is gathering dust in the cupboard now :)

Namaste,

Jim

 

Edited by member 01 Aug 2020 at 09:31  | Reason: Not specified

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 01 Aug 2020 at 10:24

Hi Jim,

Well, by the time the quacks had performed a zillion scans and still couldn't find any mets to explain my initially sky high PSA reading I was suffering from lymph node involvement and perineural invasion. Leo managed to remove several nodes whilst sparing my main nerves but despite his best efforts I was left with a positive margin of 1.6 mm.

Currently my regime seems to be keeping my opponent at bay, and I like to think that the solution to the problem is at least as much "mental" as "physical".

Paraphrasing only slightly, please don't let the b****** grind you down! 

The other Jim

P.S. I seem to have fallen foul of the PCUK rude word police. My apologies!

 

 

Edited by member 01 Aug 2020 at 10:26  | Reason: Not specified

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 01 Aug 2020 at 12:25
This is exactly why new members are not allowed to direct message other people - spilling your rubbish onto vulnerable people. Your words are also offensive to all of us who are grieving - prostate cancer is a death sentence for too many young men.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Aug 2020 at 12:27

Hear, hear Lyn!

I was on the point of pinging the PCUK powers that be.

Except I don't know how!

Jim

 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 01 Aug 2020 at 17:05

Excellent! It seems my message got through, or yours Lyn?

In case any subsequent readers are confused, some of my comments above were in response to now deleted messages.

Jayman (AKA Jim) was doing a very good impersonation of a snake oil peddling troll.

The real Jim

 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 02 Aug 2020 at 21:21

oh dear!!! To all people on this site.

My heart goes out to each and everyone of you and anyone else who has had to go through the awful journey cancer takes us on.

Maybe I am passionate about spreading my uncles and my whole family's story (as cancer pulls us all in, does it not?), and maybe my approach was wrong. But it was and always will be from a good place.

We went from hopeless to hopeful to a miracle and I will never play down our experience as a family.

If someone had not been brave enough to suggest something to my Uncle which may not have been what's considered the 'Norm', my Uncle would not be here today and that is a fact.

Your messages will always get thru and I feel it's important for people to be able to discuss especially such a painful topic that is responsible for taking beautiful people from us way before their time.

I am NOT selling ANYTHING, neither am I a spammer.

I am a normal person trying to be a good husband, father, friend, definitely Nephew etc and I care immensely about this subject and what information is out there for people like me to be able to research and share with people like you.

Whether we agree or not, surely is not important. Is not sharing our experiences the way forward? Does it matter that we have different experiences? If you had a good experience, would you not want to share it with other people that may also be suffering?

Considering that cancer is rifer now than ever (1 in 2 male or female currently as we all know) is it not our duty to be doing our own research to try and help other people including the amazing people in the medical community, or do we like sheep keep our heads in the sand and our fingers crossed that it does not happen to us?

It did happen to us and we did have our heads in the sand and had never bothered to educate ourselves on what is quickly becoming the biggest killer.

We now as a family have self-funded our own research into cancer prevention and cure, we realized that we have access to all the same information that the professionals do. It's in the public domain. There are literally thousands of people across the world that are doing the same and we have been privileged to connect with many like-minded people. 

I will again apologise for my approach, my wife always says I am like a bull in a china shop.

But I stand by everything I say as I can back it up and have done for the last few years on a regular basis.

Whether you believe me or not I genuinely care about people in general and all of you that may have or currently are gone/going through awful times with this horrendous disease. My heart and positive energy go out to all of you.

I would say this, if I did not have thick skin I would have been driven away from this platform by now.

Having different opinions is what makes people, people. 

I assure you I am as loving, as caring as empathetic as you are.

I want the same outcome as everyone here which is to help fight cancer.

Love to you all x

 

 

 

User
Posted 02 Aug 2020 at 21:52

Jim,

You are "a spammer". That's why several of your comments have been deleted.

At least this time around you don't seem to have broken any of the rules & regulations around here, which are there for a good reason.

If you don't want to be labelled "a spammer" then stop behaving like one.

The other Jim

 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 02 Aug 2020 at 22:30

I'm definitely a Hammer but never been a spammer.

I'm also definitely guilty of not reading the rules of the site, didn't even think to.

I went straight in with what I believe in and believe to be true as this is the approach I appreciate.I don't beat around bushes but I appreciate that may have been insensitive.

So again I apologise to all.

My information stands true however and the more of this back n forth the better as someone will have a look into the three amazing people I have referred to (even if it's only initially to debunk what I have said. Or what these incredibly knowledgeable people have said for years and have a plethora of evidence to support their claims) then I will have succeeded. 

If there is anyone reading this who wants to know the names of the 3 people I referred to in previous messages I am sorry but this site apparently does not let you mention respected professional medical people who specialise in this area.One of the 3 is recognised as being responsible for, and accepted by the main stream medical governing bodies across the world for introducing the Endocannabinoid system. He has been nominated for 25  awards for his specialist research and work in thid area and won many of them. He is an Israeli Gentleman and if you type ask Google who introduced the Endocannabinoid system to the world you'll find him. What you'll find (in my opinion) could not be more relevant to what this site is surely all about.

As always, sending loads of love your way!!!!

Sharing information is Caring information

Good Night hope you have a good sleep.

Other Jim

 

User
Posted 02 Aug 2020 at 23:03
Because your uncle got cancer, you realised that you were as clever as all the scientists and uro-oncologists around the world, so you funded your own research?

🤣🤣🤣🤣🤣🤣🤣🤣

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

User
Posted 02 Aug 2020 at 23:15

Tell you what Jim,

Why don't you go and expand at length about your thoughts/feelings/theories on a "personal story" thread of your very own rather than filling mine up with irrelevant verbiage that is of no interest to me?

Thanks in anticipation

 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 03 Aug 2020 at 07:26

Cuckoo springs to mind. Don't let him wind you up.

User
Posted 03 Aug 2020 at 08:34

Never fear Peggles,

I'm not wound up, but Jayman seems to be incapable of taking on board the message Lyn and I are endeavouring to impart!

Jim

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 03 Aug 2020 at 11:21

Morning Soulsurfer,

Thank you!!

Have a great day mate, weather is good so hope all get some sunshine if possible.

 

User
Posted 03 Aug 2020 at 13:19

I don't know about you Jayman, but I'm going to be hunched over my keyboard for the next couple of days preparing a bid for some of our glorious Government's alleged "Covid-19 recovery" R&D funding.

Maybe with a bit of luck I'll be able to cool off in the North Atlantic later in the week though?

Namaste,

Jim

 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 05 Aug 2020 at 18:12

My fingies and tootsies are crossed for ya fella, a break like that sounds amazing.

 

User
Posted 21 Oct 2020 at 12:10

Plus ca change. My latest PSA reading is 0.1 yet again. My oncologist says that she has no plans for any further treatment(s) at the moment. If the next reading is no higher I'll be moved on to 4 monthly testing.

In other news, whilst discussing the latest news with my GP I discovered that she had received a letter with detailed results of my CT angiogram at the end of July that I had not. As a consequence of that conversation I am typing this in a ward at Derriford Hospital in Plymouth. I'm expecting a triple or quadruple CABG in a week or so if I'm lucky. I'm told I can change my mind right up to the point when I fall unconscious on the operating table.

I've already had two Covid 19 tests, plus one "scare". A chap in our room with an ominous continuous cough was moved, presumably into a room of his own. The rest of us were "locked down" until his swab test came back negative.

Jim

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 27 Feb 2021 at 00:39

I seem to have unilaterally moved myself on to a 4 monthly PSA rota, in part I suppose due to the CABG op I had last Autumn.

I had yet another set of blood tests earlier this week, only to discover that my PSA has doubled to 0.2 since last October. Not only that but my liver function tests have gone haywire, which I put down to the side effects of the assorted heart meds I've been taking. However my GP thinks that might just possibly have something to do with cancer and so has passed the buck to my oncologist. More from me when I've had that conversation.

On the Covid front I also had my first Oxford/AstraZeneca jab earlier this week. It's all go at the moment!

Jim 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 27 Feb 2021 at 02:08
Sorry about the PSA soulsurfer; I was really hoping it had stabilised for you.

Re the liver function tests, I assume you were tested for Covid and got the all clear?

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

User
Posted 27 Feb 2021 at 09:49
Thanks Lyn,

I had numerous PCR swabs when I was in hospital for the heart op. All negative!

Nothing since then apart from having my temperature taken if I go somewhere "medical".

I've been strenuously trying to avoid going anywhere else there might be people, and intend to continue in that vein until a month after my second jab at the earliest.

I also have a theory that I had a bout of Covid-19 at Xmas. In 2019 that is!

Jim

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 27 Feb 2021 at 10:15
It was just my meandering thoughts. When dad had his mystery illness in Feb 2020 that nearly killed him, his liver function tests were sky high and his skin was jaundiced.

I have asked since but his doctors are still saying it definitely wasn't coronavirus. I have my doubts

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

User
Posted 27 Feb 2021 at 13:34

You may well be correct Lyn:

"Liver involvement is common during COVID‐19"

https://aasldpubs.onlinelibrary.wiley.com/doi/10.1002/hep.31684

What are your Dad's doctors' alternative theories?

Jim

 

Edited by member 27 Feb 2021 at 13:35  | Reason: Not specified

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 03 Mar 2021 at 16:24

The oncologist reckons my strange liver function results are not prostate related, and suggested doing a scan to the GP. He's booking me in for an ultrasound investigation.

My oncologist is going to give me a call on March 24th.

Personally my money is still on the pills. I Googled "Gamma Glutamyl Transferase" only to discover that:

"GGT elevation has also been occasionally reported following nonsteroidal anti-inflammatory drugs (including aspirin)"

https://en.wikipedia.org/wiki/Gamma-glutamyltransferase

According to the leaflets both Atorvastatin and Ramipril can behave similarly.

Jim

 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 03 Mar 2021 at 16:55

Originally Posted by: Online Community Member

You may well be correct Lyn:

"Liver involvement is common during COVID‐19"

https://aasldpubs.onlinelibrary.wiley.com/doi/10.1002/hep.31684

What are your Dad's doctors' alternative theories?

Jim

Sorry Jim - I completely missed this! They have never offered any kind of alternative theory for him being on his death bed and then recovering, and they have never tested him for Covid antibodies. Just one of those situations with no known cause, they told us. All they will say is that Coronavirus wasn't in Leeds at the end of Jan / beginning of Feb 2020. I think it clearly was 🤷  

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

User
Posted 03 Mar 2021 at 22:33

Well, my dearly beloved and I were both flat on our backs in bed next to each other in North Cornwall between Xmas and New Year 2019 with the symptoms of Covid-19.

Perhaps it was merely "the flu"? My eldest son is a delivery driver and had a bad case of that a few days before.

Jim


Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 04 Mar 2021 at 00:02
No, it wasn't flu-like at all - at the time, all markers indicated that he was in liver failure and the symptoms and rapid decline were highly indicative of last stage PCa (although fortunately, that turned out not to be the case and he is now as sprightly as ever). A mystery that will never be solved except in my own head where I just know it was Covid.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Mar 2021 at 09:56

Obviously I wasn't very clear last night Lyn!

I meant that my own symptoms might have been caused by "a bad case of the flu", but in my own head it's far more likely to have been Covid. Perhaps my son delivered a parcel to somebody recently returned from China? Or Italy?

Alternatively one of my neighbours is in the Marines:

https://uk.usembassy.gov/peace-through-sports-at-the-2019-military-world-games/

I didn't have any liver problems that I'm aware of, but in March I had a chest X-ray that discovered "emphysema & COPD". I have never smoked and never worked down a tin mine.

Jim

 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 11 May 2021 at 23:27

I've just had another PSA test followed by another telephone conversation with my oncologist. Which reminds me that I haven't yet provided an update on my previous conversation with her. The gist of that was that there was no way she would recommend any further treatment(s) until:

a) I was fully recovered from my CABG op, which takes at least 6 months.

b) Whatever was wrong with my liver was fixed.

I'm finally getting an abdominal ultrasound scan this coming Friday. However I unilaterally decided to stop taking atorvastatin and my assorted medical advisors concurred! As a consequence my liver function tests are all back within the "normal" range apart from gamma-glutamyl transferase, which is now only slightly elevated after being over 5 times the upper limit a couple of months ago. However my cholesterol levels are now back where they were before the op, so my GP suggests trying fibrates instead. However I am wary of another medication "error"!

Bang up to date again, my recent PSA reading is up another notch to 0.3. It seems hormone therapy can have unfortunate side effects for the liver, so that is contra-indicated for the moment. The oncologist is booking me in for another PSMA PET scan, with a view to zapping the little blighter if it can be located This time I only have to travel to Plymouth, rather than UCH like the last time, which is far more convenient. Particularly in these Covid constrained times. Speaking of which I had my 2nd jab earlier today. No noticeable side effects yet!

On the bright side I went bodyboarding again for the first time since my heart op a couple of weekends ago. I explained the circumstances to the lifeguards in advance and they promised to keep an eye on me. Fortunately their services were not required, and I lived to tell the tale.

Expect more from me after my next set of scans!

Jim

 

Edited by member 12 May 2021 at 10:10  | Reason: Formatting

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 14 May 2021 at 14:16

I've just returned from my abdominal ultrasound scan in Liskeard, where the operator assured me that nothing abnormal had been revealed.

Needless to say I am still waiting for my PSMA PET scan appointment, although I am already booked in for another chat with my oncologist in a months time. The gap between my PSA tests is reducing rather than increasing.

Jim

P.S. I've just had a call from a very nice lady who booked me in for my next PET scan at Derriford Hospital in Plymouth one week from today.

 

 

Edited by member 14 May 2021 at 15:06  | Reason: Not specified

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 02 Jun 2021 at 22:07

I called the oncology nurse at Treliske today, who kindly revealed to me the results of my recent PET-CT scan. It seems it didn't detect anything out of the ordinary. The nurse seemed to think that constitutes really good news. However I'm not really terribly keen on the idea of being zapped at random.

I'm visiting the local GP's surgery on Friday for another round of blood tests. Liver function, cholesterol and PSA at a minimum.

The next discussion with my oncologist is due in a couple of weeks. More news in due course.

Jim

  

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 04 Sep 2021 at 19:21

Another 3 months have elapsed, so I turned up at my GP's surgery on Wednesday for a pre-arranged set of blood tests. Lipids, liver and PSA. All but the last one were cancelled due to a nationwide shortage of blood test vials.

My PSA reading turned out to be 0.25, which is less than last time. I guess that counts as good news? My consultant has departed for pastures new, so I have a telephone appointment with the new one booked for the week after next.

Jim

 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 04 Sep 2021 at 22:32

fantastic news on PSA Jim  but shocking news on Virals what's going on 😬 good luck for the future gaz

User
Posted 06 Sep 2021 at 22:10

Thanks Gaz,

For more on the nationwide vial shortage see for example this from the BBC on August 26th:

https://www.bbc.co.uk/news/business-58324108

"NHS England has admitted that a shortage of vials used for blood tests will worsen over the next few weeks and will last until mid-September.

It said supplies remain constrained and are forecast "to become even more constrained over the coming weeks".

While the NHS expects the position to improve by the middle of next month, "overall supply is likely to remain challenging for a significant period."

Doctors had been told to stagger some blood tests due to the shortage.

They are warning that patient care will suffer due to delays."

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 07 Sep 2021 at 07:33
Can't they improvise any more? Not allowed to use test tubes and rubber stoppers like they used to?
User
Posted 24 Sep 2021 at 09:45

It seems my previous oncologist has retired rather than "moved to pastures new". It also seems that the new chap doesn't care so much for the personal touch, so I was called by one of his underlings. The new team like to do things "by the book". PSA > 0.2 = SRT. They want to "get cracking ASAP". No hormones. 55 Gy in 20 fractions.

My recent PSMA scan revealed nothing of note. This is allegedly good news because a lack of visible metastases suggests that I am merely suffering from "microscopic" recurrence in the prostate bed. Another scan, as suggested by my previous consultant, is not necessary. However I am still not wild about the idea of being zapped at (apparently) random. I am assured that if I wait until something becomes visible, perhaps when PSA = 0.5, it may well be "too late".

I have negotiated a month to consider my options. Another chat on October 14th preceded by a PSA test. Always assuming that there are some more vials in the GP's cupboard by then.

Jim


Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 24 Sep 2021 at 10:20

Jim 

I was in a very similar situation, 0.2 triggered the SRT and it was 0.27 just before I started treatment without HT. I was not overjoyed with the "very educated guess". I was refused a PSMA test. My  PSA fell after SRT so but over the last 4 years as crept back up.

Hope it works out for you.

Thanks Chris

 

User
Posted 25 Sep 2021 at 09:49

Hi Chris,

Thanks very much for your good wishes, and your extremely detailed log.

"A second Hem-o-lok clip" - Jeez H. C. on a bike

"33 salvage RT sessions". How many Gy each, since a mere 20 fractions seems to be the order of the day down here in deepest, darkest Kernow?

Jim

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 25 Sep 2021 at 12:41

Hi SoulSurfer, many of the studies on SRT show that it is more likely to be successful if started as early as possible and before PSA rises much above 0.2 if possible.

In my case PSA rose within a few weeks from 0.3 to 0.7 so I was put on HT in addition to SRT. 

Ido4

User
Posted 25 Sep 2021 at 13:26

Originally Posted by: Online Community Member

Hi Chris,

Thanks very much for your good wishes, and your extremely detailed log.

"A second Hem-o-lok clip" - Jeez H. C. on a bike

"33 salvage RT sessions". How many Gy each, since a mere 20 fractions seems to be the order of the day down here in deepest, darkest Kernow?

Jim

 

Jim 

2 Gy per session 66gy total  according to my hospital letter. Don't we all get a similar total amount, sure the scholars will know ?

Hope all goes well for you.

Thanks

 

User
Posted 25 Sep 2021 at 13:52

Yes we do all get roughly the same amount of Gy. Though one does here the phrase biologically equivalent dose, which some how comes in to the equation. The standard used to be 37 * 2gy = 74 gy, now they tend to give fewer fractions i.e. 20, 15, or even 6. But with a bigger dose, so 6 * 6gy=36gy, presumably biologically this is roughly equivalent to 74gy in smaller doses.

I had 15gy HDR, but that is biologically equivalent to about 40gy, plus 15 * 2.75gy. So in total my biological equivalent dose was between 70 and 80 gy. 

Dave

User
Posted 25 Sep 2021 at 14:31

Hi Ido (If I may call you that?),

Thanks for the info, and your detailed log too!

"20 sessions of radiotherapy with 55 Grays total dose." - Same (proposed) here.

"PSA rose within a few weeks from 0.3 to 0.7"

In my case PSA has fallen from 0.3 to 0.25 over 4 months.

As you will see above, my GP refused to check my cholesterol and/or liver function readings on my last visit. My previous onco wanted to wait until I'm fully recovered from last Autumn's unanticipated triple CABG and subsequent iatrogenic liver problems before taking any further action.

Cheers,

Jim 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 25 Sep 2021 at 17:06

Thanks again Chris,

"Don't we all get a similar total amount"

It seems not. Unless 55/20 is somehow "biologically equivalent" to 66/33 as per Dave's suggestion?

Jim

 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 25 Sep 2021 at 19:19
It isn't linear - 20 fractions at 3Gy or 3.2Gy delivers about the same amount of radiation damage as 37 fractions of 2Gy.

If you are being recommended for 2.75Gy that is either because it is salvage treatment or they think you don't need the higher amount. Perhaps they are aiming at quite a small area or it is going to be a bit close to your bowel or something.

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

User
Posted 25 Sep 2021 at 20:11

Thanks Lyn,

In my case it is certainly SRT. As yet I have no idea precisely which area they are thinking of irradiating, and I harbour this sneaking suspicion that they don't either!

Jim

 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 25 Sep 2021 at 20:59
Sorry - didn't word it very well - I know you are having SRT, what I meant was that your hospital might have a regime of 20 x 3.2Gy for radical RT and 20 x 2.75Gy for SRT, or something like that. John was put on the trial for 19 or 20 fractions at 3 / 3.2 / 3.4Gy when he had his SRT - they wanted to test out the theory that men could cope with a higher amount of radiation than had previously been thought, without the side effects becoming too intolerable. What they found was that fewer fractions at a higher dose is just as effective as the old 37 x 2Gy but with fewer side effects.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
Forum Jump  
<123
©2021 Prostate Cancer UK