I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

Advanced prostat cancer part 2

Email this conversation Print this conversation

User

Posted 22 Mar 2017 at 22:13

Another keyboard ruined by splurted tea.

Keep going, lovey xxx

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

User

Posted 22 Mar 2017 at 22:22

So good to hear you are still standing, scallop-tackling and making us splutter (mine was wine but I forgive you) in spite of the usual mad results Julie. PSA clearly has no meaning for Trevor so best we just concentrate on the bit that's coming down and give loud hoorahs for that. And another set of loud hoorahs for the fact that you don't have galloping armpit disease. (I've decided to go commando chestwise and give up on bras altogether - except for important occasions obviously - the Queen's garden party, the Oscars etc. Never found one that's even remotely comfortable...)

I think that you need Vitamin D in order to absorb Calcium but not sure quite what the link is. Maybe if the former is low it limits take-up of the latter so then you'd need a booster for both I guess?

Sorry to hear about the continued heart problems, and the slow recover from the horrendous teeth op. Extraordinary people the pair of you.

Keep on trucking.

Hugs

Eleanor

xxx

User

Posted 23 Mar 2017 at 00:05

I've just started on Vit D, large dosage for 3 months 3200, then down to 800. But I was advised this by my diabetic consultant not the onco. Not sure I've felt any difference yet. Another set of stats to conjure with, he is still there and eating scallops. What more could you want.

User

Posted 23 Mar 2017 at 06:19

Scallops, prawns, yum yum yum yum yum!

Now all it needs is a nice, well hopped, beer to wash them down. I recommend St Austell Brewery's Proper Job, 4 for £6 from Mr Tesco.

User

Posted 23 Mar 2017 at 07:00

Thanks for the encouraging update Julie.

We can't control the winds - but we can adjust our sails

User

Posted 23 Mar 2017 at 09:21

Hi Julie,

I have slight bone thinning which I was told was as a result of the HT. My oncologist prescribed Adcal-D3 tablets. When I recently collected my tablets the pharmacist wanted to see me for a medication check, she said vitamin D picks up the calcium from your system (blood stream I think) and puts it into your bones.

Arthur

User

Posted 13 Apr 2017 at 18:16

Before I do our update we just had news from one of Trevor's cousins he has just been diagnosed with pca he is 55 years young , PSA was 4.6 and his Gleason is 7 his bone and ct are clear and he has been offered RP at Guys hospital . I have told him about the forum and I hope he decides to join us .

So oncology was last Mon .

Scores on the doors ALP down from 244-201 so good news there

Raduim number 5 has been completed with number 6 due beginning of May

Trevor did ask the Wiz if maybe a second round of Raduim treatment would be offered as he has done so well on it but sadly the computer says NO.

Not enough funding .

PSA with no surprises is up from 3473-4087 ouch.

That's the boring bit done and now to the important bit how is he feeling and the answer to that is pretty darn good. He has been gardening , putting up blinds and yes he is feeling and looking good. So I think the Raduim has been a success.

Still undergoing tests for the heart issues with appointment at the end of the month.

The teeth issue is also still ongoing and he has had more bone growing through where he had his extractions but at least he is managing to eat almost normally.

4 years in May to our Cancerversary and I know I say this every year but a huge thank you to everyone here for carrying me through my wobbly moments and boy there's been a few😛 You guys have been there through the good, the bad and the down right ugly moments of the last 4 years . A Huge THANKYOU. X

I am trying not to concentrate on the fact we have only one more Raduim treatment to go and to listen to my own advise of live in the moment and this moment is a good moment. 🤗

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 13 Apr 2017 at 18:22

Your lovely positive post has cheered me up no end. Thank you XXX

We can't control the winds - but we can adjust our sails

User

Posted 13 Apr 2017 at 19:06

Thats a lovely post Julie. Both so brave and an example to everyone on here. Thanks x

User

Posted 13 Apr 2017 at 19:19

Good to get your positive take on both the good and not-so-good bits of news Julie, although I'm very sorry to hear that the Radium isn't a permanent option. Do hope that the positive effects continue. And a HUGE THANK YOU to you for all the support you offer to us all - through thick and thin. I'm still a bit of a newby but I'm sure I speak for the old hands too. You are an amazing and uplifting presence on this forum and have made a real difference to my ability to handle the pile of wombats' droppings that landed on our doorstep last July.

Rock on!

Hugs

Eleanor

xxx

User

Posted 13 Apr 2017 at 19:33

Seems like pretty good news to me Julie and that makes me happy.

User

Posted 13 Apr 2017 at 20:39

I am very happy and proud to be posting reply number 1001 - none of could have imagined when T was first diagnosed that he would still be here a thousand posts later, let alone that he would be gardening and stuff.

You are constantly on my mind, lovely lady xxx

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

User

Posted 13 Apr 2017 at 21:01

Nice update Julie, glad to hear Trevor is out and about.

Hope to see you all soon

Si & the girls xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 13 Apr 2017 at 21:21

Am I in room 1001 ?

😂😂😂😂😂😂

NEVER LAUGH AT A LIVE DRAGON

User

Posted 17 Apr 2017 at 11:40

Thank you for the update Julie.

It's so good that Trevor is well enough to do gardening. As for myself, I feel I can't do anything, and my wife calls me lazy - oh well.

Does the NHS explain to you and Trevor, why on earth the radium treatment cannot continue? Especially as it is making a difference to your dear wonderful man.

Frank.

User

Posted 17 Apr 2017 at 14:45

Although I am not well enough to do the gardening to be honest I have never done the gardening so guess nothing has changed. I love the way Rdium 223 has helped but such a shame funding stops it continuing when it is proving helpful. I wonder how long its impact will last, has it slowed down activity for a while? Hope so. Sorry delay in replying as I think you know not been too well but always thinking of you. Now must make the gardener a cup of tea.

User

Posted 17 Apr 2017 at 14:51

Sorry you've been under the weather Paul. Feel better soon.

It's a "Special" room 101 just for "Special" people !! and I mean that in it's nicest terms !!

We can't control the winds - but we can adjust our sails

User

Posted 17 Apr 2017 at 19:28

Just found this report of a small (but apparently significant) trial of the re-use of R223. Conclusions were that a further 6 sessions were well tolerated, with no safety concerns, and were effective in further slowing down met progression (but not soft tissue progression of course). Don't know what the implications are in the UK but it has to be worth asking.

https://www.urotoday.com/conference-highlights/asco-gu-2016/asco-gu-2016-prostate-cancer/85810-asco-gu-2016-ra-223-retreatment-succeeds-in-mcrpc-session-highlights.html

Cheers

Eleanor

User

Posted 17 Apr 2017 at 22:16

Great update Julie. Great to hear things are going so well. Long may it continue

Bri xx

User

Posted 06 May 2017 at 23:39

So here we are our 4 year Cancerversary on 1st May (bloody hell) would you believe it . I am totally gobsmacked talk about life is a roller coaster . We have had more lows than highs over this 4 years but we are still here ! Still fighting ! .

Ok I will be honest and probably nearing our destination but heck I thought that 4 years ago and yes we have pretty much used all of out tools in the tool box . Trevor had his last infusion of Raduim 223 on the 2nd May.

So just for the record scores on the doors at last oncology visit .

6/417 - PSA 4087

ALP - 201

The mouth issues due to the osteocrenosis are still ongoing and bone is still growing where the extractions where so healing on the gums has been a major issue , Aunty Bs have been ongoing almost every 3 weeks the bone makes wholes in the gum and causes gaps which causes infections the term Hamster and wheel comes to mind.

The heart issues have seemed to settle so phew for that we are still waiting for the test results 😤

So any way that's the bad news out of the way and who knows the cure for advanced pca might be just around the corner ( never give up hope my friends never give up hope )

I have told this story before but I think it is so important.

HOPE that is what they said to us in the beginning , never give up HOPE !

I am a glass half empty so you can imagine my face when they said 4 years ago ! Sorry it's terminal ! Sorry you can't go on trials ! Sorry you can't have chemo ! But never give up hope ! Seriously I thought ! Is she having a laugh ! I thought oh yea that's the standard comment . Hope it's free on the NHS because there isn't anything else we can offer .

I know most of you guys will understand that feeling of hopelessness as we walked away that day with our prescription of HOPE .

For all newbies that are given a prescription of HOPE ! All I can say is cherish it , roll with it , you never know how far hope can take you. Here we are 4 years on and today he hasn't felt too good but tomorrow who knows , tomorrow just might be the day a cure is found .

BFN

Julie X

Edited by member 06 May 2017 at 23:59 | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.