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My 3 men contd

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User
Posted 28 May 2014 at 13:25
http://community.prostatecanceruk.org/posts/t9046p2-My-3-men?=#post96102

Update - May 2014 Dad's PSA has come back at 0.21 so a little lower than the last one which gives him confidence that he was right not to go rushing down the HT route. One year down, just another 19 years to go!

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

User
Posted 22 Feb 2018 at 21:36

Two PSA results in one day:-

Dad - now up to 0.7 - we have discussed and he is not going to do anything except test again in 12 months time

John - <0.1 again ... to be honest, we can't believe our luck! Just goes to show that even if it does rise over the dreaded 0.1 it doesn't necessarily mean biochemical recurrence.

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

User
Posted 23 Nov 2017 at 22:22

A bit of cheer for anyone who worries about small PSA changes.

The PSA in July had dropped back to 0.1 (from 0.11 in March/April) and the MRI was clear. Result today is <0.1 .... really not what we were expecting!

I say the MRI was clear; it has led to a referral for 2 new knees in January so we will have to give up the dancing for 4 months and we prepare for another battle with the car insurance provider in the Spring.

On such a sad day and with Julie, Trevor, Linda and David at the front of my thoughts, i am perhaps more relieved than happy. Lots of love to my friends here xxx

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

User
Posted 28 May 2014 at 13:25
http://community.prostatecanceruk.org/posts/t9046p2-My-3-men?=#post96102

Update - May 2014 Dad's PSA has come back at 0.21 so a little lower than the last one which gives him confidence that he was right not to go rushing down the HT route. One year down, just another 19 years to go!

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

Show Most Thanked Posts
User
Posted 28 May 2014 at 14:20

So glad to see some good news Lyn, lets hope the next 19yrs are equally as good.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 28 May 2014 at 14:54
I'd give my right arm for 19 more years Lyn. Took my blood today. So worried that it's still going to rise despite Zoladex.

Bazza

Nine years since DX.

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money.

User
Posted 28 May 2014 at 15:02

Lyn, glad you have also continued your thread over on the new forum. I am slowly working my way round things and organising it so that I can get where I want to be. 

Great to hear that your Dad is still doing so well.

xx

Mo and Mick

User
Posted 28 May 2014 at 15:38

Yes, excellent to hear a success ! Delighted for you and your Dad, Lyn !

 

Fiona x

User
Posted 28 May 2014 at 16:33

Good news Lyn Im pleased for you both, you give so much good advice on here to everyone, pleased you have been given  some positive news.

All the best

Frank 

User
Posted 28 May 2014 at 16:43
Excellent news. Good luck to your dad!
Stay Calm And Carry On.
User
Posted 29 May 2014 at 16:33
Thanks guys.

Bazza, as a smoker I am coming to terms with the idea that my dad might yet outlive me. You probably will too!

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

User
Posted 29 May 2014 at 16:38

Nothing like a bit of good news for a change to cheer you up. Long may it continue

 

User
Posted 29 May 2014 at 17:07
So pleased to hear this news Lyn.

I thought you were considering kicking the habit xxxx

User
Posted 29 May 2014 at 18:18
Trying Alison, trying!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 May 2014 at 18:59
Yes you are Lyn ;-). Great news about your dad

Sure it will be fine Bazza

Bri

User
Posted 29 May 2014 at 22:23
Hi Lynn good to hear your dads doing well, stay cool. Diesel xx
User
Posted 30 May 2014 at 02:20
Hi Diesel - so you have found your way over here then? Couldn't bear to be away from me for too long?

How's things?

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

User
Posted 30 May 2014 at 19:38
Absolutely correct young Lynn,I just knew you were missing me too. Had blood test yesterday 9months since RRP, don't know result yet seeing Uro next Tues 3rd June will let you know. Going on holiday Wed 4th driving through France to Espan'a, we have a house in southern Spain, will be away for five weeks, so would be nice to get good result. Still find this site a bit awkward, but good to see the old crowd crawling back, and some newbies.Best wishes to all. Diesel x
User
Posted 05 Jun 2014 at 20:51
John's latest result is in - 0.03.

Bring on the summer 🍦

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

User
Posted 05 Jun 2014 at 20:52
Cool, great news. My turn tomorrow!
User
Posted 05 Jun 2014 at 21:29
Brill news..... Good luck tomorrow Paul

Bri

User
Posted 05 Jun 2014 at 21:36
Lordy lord! It's like Eurovision, waiting for all the scores to come in 🎤
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Jun 2014 at 21:55
Excellent news Lyn I bet John is over the moon and just what we need too hear pre Leicester.

Paul I hope you will follow in John's footsteps and that all goes well with you tomorrow.

Had my scan yesterday and hope next weeks meeting with Onco will help resolve the issue I have with my pain in the ar*e.

Life is for living

Barry (alias Barrington)

User
Posted 28 Aug 2014 at 01:38
Well I logged in to update my thread .... bit of a shock to see TG's comment above and I would give anything to have him reply tonight. Anyway, we saw onco yesterday - John's PSA has risen slightly to 0.04. J is a little perturbed by this but Mr B says that as long as it stays in the region of 0.02 - 0.05 it is the same result but with a bit of machine noise. As this is almost the same thing that Mr P (uro) said last time, it seems strange that not all medics here on the forum take the same view doesn't it? Perhaps just a positioning statement for our hospital?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Aug 2014 at 01:50
Apart from the PSA result, it was a bit of a frustrating appointment. Mr B talks to us as if we are children and he said some most bizarre things yesterday including a) RT doesn't usually cause any side effects b) two years post-RT is long enough for any side effects to have kicked in c) he asked whether J was back at work yet (back at work??? He never had a day off!) d) cycling & supplements make no difference e) diet only makes a difference to young men so John should eat whatever he fancies (ggggrrrrr ... I am rapidly losing ground in that battle then) f) all radical RT is 30 sessions and all salvage RT is 20 sessions. He isn't old so not likely to be losing his marbles but I don't feel as confident in him as with Mr P - a feeling that he puts a gloss on things maybe. Is it just me?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Aug 2014 at 07:48
Sometimes think these medics are a strange breed. I have had one test post RT and told to go away for a year and just have a PSA test in between. Having said that it's been quite nice to have six months off. I am giving my blood tomorrow, so fingers crossed it isn't playing any tricks on me . Didn't Jamie say a similar thing about diet. I guess he may have been referring to men without a Prostate and cycling.Hopefully J's PSA will drop again as it did before. Sorry there are no breaks in my post but for some reason it won't allow me to shift down. Bri
User
Posted 28 Aug 2014 at 09:21
No expert on RT Lyn, but I would have thought you should be careful what you eat whatever your age or health.
Stay Calm And Carry On.
User
Posted 28 Aug 2014 at 10:26
Exactly, 6f2! To be fair to the onco, he did say that loads of dairy wasn't a good idea for anyone. Bri, shift wasn't working for me either which is why my posts were all scrunched up. Good luck tomorrow x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Aug 2014 at 13:50
Hi Lyn, In a former existence I worked in a laboratory measuring drugs in biological fluids and could throw some light on your PSA values. All such measurements are subject to some degree of inaccuracy. Although you are given a single value from the analysis this represents the mid-point of a range of values. Typically the range may be plus or minus 20% of the quoted value. So the true value of a measurement of 0.04 will lie somewhere in the range of 0.03 to 0.05 (if you round the values). As well of the accuracy of the measurement there is also the precision of the measurement to be considered. Precision is defined as the spread of values obtained when the same sample is repeatedly analysed for the same chemical. Again precision is often expressed as a percentage of the average value thus obtained, typically being around 10-15%. So if J's blood sample was analysed again it is highly likely that the value obtained would not be 0.04 but some value close to it. In a
User
Posted 28 Aug 2014 at 14:04
THAT post should be kept and repeated elsewhere on tis site as it is really helpful. Hmm. Excuse the heavy body of text without paragraphs as my return key is apparently disable on this site again. Was working fine earlier this morning. Keeps me awake and on my toes! LOL Aha got around it by putting in lots and lots of spaces. Dave
User
Posted 28 Aug 2014 at 14:10

Lots and lots of spaces which when I click on "Post" are promptly removed, hence the heavy body of text.  Sorry.  Dave

User
Posted 28 Aug 2014 at 18:47
Hi Tom, yes, I have posted along similar lines many times in the past to reassure other members. In actual fact, the tolerance range that you refer to is possibly slightly wider for PSA than in routine lab work; in my post regarding our last appointment with Mr P he stated that the range was 5/100ths so a single sample could produce a reading of anything from 0.01 - 0.05. This makes monitoring of men via ultra-sensitive PSA test more tricky than the simple 1 decimal point system because one result out of odds with previous ones can cause undue panic. However, the law of probability would suggest that while tolerance might lead to successive results which hover around 0.02, 0.04, 0.03 should not cause concern, a trend of 0.02, 0.03, 0.05 is too regimented to be ignored. Fortunately for us (and Ray who is a perfect example of fluctuating PSA) the ups usually seem to be followed by drops so I am not concerned.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Aug 2014 at 19:06

Second try at posting this post:  Loving this new site.

 

Lyn that post should also be a sticky so others can read and be reassured.

 

This new site is excellent at deterring frivolous posts, blahdy dahdy dah, hard work getting a post to appear these days, what fun!

 

Dave

 

with a working return button at this time.

User
Posted 29 Aug 2014 at 10:27

There is also a big difference between the results obtained from super sensitive screening machines and the less sensitive ones.

 

Steve

 

User
Posted 29 Aug 2014 at 13:58
Lyn I think you are right Oncos and other consultants vary enormously, Mick's lovely Dr B was always straight talking and loved that I got involved and wanted to understand the medical side of Mick's illness. We both had total confidence in him. He has called me at home twice since Mick died to make sure I am OK. I was visiting another friend on the Oncology ward today (Leukemia not PCa) and Dr B was at the Nurses station he stopped what he was doing and came straight over to me, gave me a hug and chatted for about 10 minutes he is delighted that I am doing the genetics of Cancer course and participating in the palliative care for advanced PCa one, he has told me to ring him if I get stuck at all.

Good to hear that J's doing great too.

xxxx

Mandy Mo

User
Posted 29 Aug 2014 at 17:13
Quote " Dr B was at the Nurses station he stopped what he was doing and came straight over to me, gave me a hug and chatted for about 10 minutes he is delighted that I am doing the genetics of Cancer course and participating in the palliative care for advanced PCa one, he has told me to ring him if I get stuck at all." What a lovely man he must be. Just what one would hope for in a doctor.
We can't control the winds - but we can adjust our sails
User
Posted 29 Aug 2014 at 18:12

Hi Lyn, do you think that increasing PSA levels from as low as 0.02 to 0.05 are a cause for concern?

User
Posted 12 Dec 2014 at 02:44

Starting to get used to a routine pattern now - John's latest result is 0.03 so he is definitely doing a Ray thing and hovering round and about a figure. Mr P said much as before - 0.02, 0.03 and 0.04 are all the same result as far as he is concerned and this must be presumed to be John's natural level now. He also pointed out that John has hit the magical 5 year mark since diagnosis which we should celebrate - I think he is rather proud of himself as well!!!

Dad on the other hand has had another small rise - but will continue with 3 monthly checks only - he doesn't want anything to spoil next year's multiple holiday plans :-)

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

User
Posted 12 Dec 2014 at 03:13

Great news for John it feels very stable. Hope your Dad,s does not go far and stays in a safe range.

User
Posted 12 Dec 2014 at 09:23

Good news Lyn, especially if Mr P seems happy! My path-lab only go down to 1 decimal place. So Dad has plans for multi holidays next year, well done him for looking forward.

Now you can all enjoy the festive season.

Best wishes, Chris.

User
Posted 12 Dec 2014 at 15:33
Hi Lyn

Glad to hear your John has had a good PSA result. Sorry to hear about your dad's small rise but hope things work out ok.

I wish you all the best for Christmas and the new year.

Whilst writing I just want to say thank you for what you do for this forum. You are always so helpful to new and old members alike and I am not sure what we would do without you.

Kind regards.

User
Posted 12 Dec 2014 at 19:20

Great result for John Lyn...hopefully your dads will steady down and he will enjoy next years jaunts

I like your Mr P's view of the 0.02-0.04 range....not that I'm bias of course

Happy Xmas

Bri x

User
Posted 12 Dec 2014 at 19:26

Great News, Lyn.

Send my Best Wishes to John.

Have a nice weekend.

Steve

User
Posted 13 Dec 2014 at 10:16
Lyn

fabulous news so pleased for John and your Dad.

You are such a big help to everyone on this forum you know your stuff but you also know just what to say

xx

Mandy Mo

User
Posted 13 Dec 2014 at 12:25

Great news, Lyn !

 

Fiona.

User
Posted 13 Dec 2014 at 15:45

Great news Lyn.

Barry
User
Posted 13 Dec 2014 at 16:30

All in all, good news and a nice to have before Christmas.

Dave

User
Posted 13 Dec 2014 at 20:24
Really,pleased to,hear about John's stable PSA Lyn, not quite so pleased about dad's small rise but love his spirit. I'd like to echo the thanks to you, without people,like you who know so much about this disease this forum would be a lesser place.

Much love

Allison xx

User
Posted 14 Dec 2014 at 15:06

Really good news Lyn you both must be very happy a stable PSA and reaching the 5 year mark there will be lots to celebrate in your house hold this Xmas.

Although your Dad has had a slight rise his determination to resist HT and concentrate on holiday plans says a lot about his strength of character and long may that continue.

Now where is that button for the Lyn appreciation society.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 Dec 2014 at 09:38

So pleased to hear your news Lyn, all the makings for a great Christmas.

Si x

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 16 Dec 2014 at 11:29

I am very happy for you and your family .Also many thanks for your very helpful tips about my MRI which were great relief and comfort for me at the time. I wish you and your family a lovely Christmas
Thanks fully
Essi

User
Posted 02 Jan 2015 at 23:47

We spent Christmas in the glorious Gambia and had a wonderful time although the presence of Ebola in other parts of West Africa has devastated the tourist trade in the Gambia and people are finding it harder and harder to earn money to buy food etc. We had taken quite a lot of stuff out with us including money for the school we support so feel that we at least were able to do our bit to help. Unfortunately, we came home to crisis upon crisis in the family, culminating in an exciting trip to A&E yesterday when John had a suspected heart attack. Blue lights, Julie - I thought of you x

Many many hours later, the cardiologist was happy enough to send us back home on the basis that John's heart is fine - it seems that the chest pain & tingling was caused by either the bad news & worries of the last few days or the malaria tablets combined with a cheeky Levitra (both of which have chest pain as an uncommon side effect - who knew!!!!) So, the question is ... when we next go to Gambia, will we have to choose between sex and malaria?

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

User
Posted 03 Jan 2015 at 00:53

Not life's most difficult decision, Lyn! Pleased it was all sorted.

Paul

Stay Calm And Carry On.
 
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