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Ever Decreasing Circles part three

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User

Posted 03 Jun 2015 at 19:51

I am happy that you sound happy Paul, and that you have had a better "consultative experience".

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 04 Jun 2015 at 21:57

Phew Paul

What a relief to read this, everything you needed, sorted without angst. Why, oh why did you even have to ask?

Anyway, delighted to hear that you are having a bone scan and an oncology appointment, this should result in a sensible treatment plan.

And relax,. glad Lyn fell short of having to sharpen her teeth, crumbs that was a thought, though I'd quite like to have witnessed the fall out.

Lots of love

Allison xx

User

Posted 05 Jun 2015 at 07:53

Hi Paul,
Just been reading through,really glad your are more settled and moving forward.

User

Posted 05 Jun 2015 at 09:41

Paul

Well done on your prompt action and result. It goes to show action gets results.

It seems to me that your initial consultant needs a bit of people training, regardless of his medical skills.

Paul

PS Lyn - do your teeth really need sharpening?!

Stay Calm And Carry On.

User

Posted 05 Jun 2015 at 10:44

No not really but the repeated sawing action helps me concentrate while I memorise the latest research etc and prepare my offensive

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

User

Posted 05 Jun 2015 at 13:31

Paul 6F2 Lyn needs sharp teeth to clench the veils for the dance of the vestal virgins at MOTS

PS it's a good job my backside is well padded because I suspect she may be kicking it ! Ha ha.

User

Posted 11 Jun 2015 at 18:23

Update following my diabetes appointment. Always get a lot more from this consultant than anyone else. So sad to hear today he is retiring so effectively this was my last consultation with him. Still diabetes remains in control which given everything else is a good result. I told him I was awaiting results from an x ray in my right leg and so he gets it on screen and we have a look. It shows metatastic spread in the thigh bone and even more pronounced in another bone, the name of which I cannot now remember. It is where the pain is, deep in the pelvic area near the prostate. Also got a bone scan booked for next week so this will confirm this. He, again so helpfully, got my original bone scans up from 2012 and there was spread in both these areas then, so although there was improvement it looks like there is some evidence of spread returning. So justifying a bone scan I think. Also have my oncologist appointment for the 24th so will get the future sorted soonish.

Another bit of goodish news was that my PSA was slightly down to 24.82 indicating its not accelerating away so maybe there is some resilience from the HT yet.

So off for a cricket watching weekend with my friends with at least some awareness that the leg pains may be connected to further spread. The first directly connected pains I have had since I was diagnosed. As I get more detailed knowledge I will share. For now it's time to relax and not do too much.

User

Posted 11 Jun 2015 at 19:22

Paul

Amazing how your diabetes consultant can do all this for you. I guess with all the shared records and electronic images of scans etc it has become possible. I never knew that mets showed up in a standard x ray so that is something I shall store in my memory. The bone scan or MRI will show this in much more detail I assume. I remember seeing Mick's scans side by side on a big screen and the two images were very different. Also Si once posted his scans at diagnosis compared to the ones after chemo, Abiraterone + zoladex. They were scarily obvious on problem areas.

The good ish news of PSA coming down again is good to hear. In an odd way so is the fact that the Mets were there at diagnosis so this is not necessarily spread just a bit more of what you had initially. I think you will understand what I mean.

You are so right to go and enjoy your cricket take some pain killers with you and wait to see what transpires.

Looking forward to seeing you soon my friend.

User

Posted 11 Jun 2015 at 21:46

Paul good to hear the PSA is dropping and diabetes is well controlled.

Obviously I have no idea about x-rays and bone scan differences. But wasn't the 2012 bone scan the only one you have had? If so how do you know that the x-ray isn't just picking up a vague image of something that has been there since you were dx.

Either way have a great cricketing weekend

Bri

User

Posted 11 Jun 2015 at 23:18

No I had a further scan in 2013 which showed improvement particularly in that area. So it suggests that the spread has returned or intensified, whatever the right word is. We looked at the 2013 scans and nothing there but it's clear where I am having pain was there in 2012 and the bone scan next week should confirm this.

User

Posted 13 Jun 2015 at 16:56

Not sure how I missed your post Paul, well your Diabetes Dr sounds like a pretty good Guy it is a shame that you will know have to get used to someone new. The same as Mandy I didn't realise that mets would show up in a normal X-Ray so that's a new one on me.

Also agree with Mandy that it doesn't appear to be further spread just a bit more of what was already there (so good news ish) I think you had your suspicions and was so right to pursue the matter although of course we should not have too. The PSA still dropping is reassuring that the HT is still working .

Lets hope that the bone scan will give the same results that you already have (no extra surprises).

Have a great weekend , I know you will be enjoying this lovely weather http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 15 Jun 2015 at 13:55

Have managed to get wifi on the Arundel ground briefly wish I could post the view. Been a great time in many respects though nasty collision on the pitch yesterday caused the game to be abandoned. For my part my leg is definitely sore and in the places where it appears the spread is concentrated which is the first time I have had directly associated pain so it's a strange reality. Hoping this is isolated but the bone scan will reveal the extent of the return of the mets or further advance. Leaving here 5 am tomorrow to get to bone scan. But although felt tired and sore the weekend has been restorative. Mill next weekend so will be there.

User

Posted 15 Jun 2015 at 19:30

Good luck for the scan tomorrow Paul. Hope all goes well for you.
Sandra

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

User

Posted 24 Jun 2015 at 13:20

OK I'll attempt a summary of my meeting with my new onco today. Firstly to say two things. It was strange returning to Western Park Hospital where I had been treated over 30 years ago for testicular cancer, gave me an unwanted sense of déjà vu. Secondly I found the onco very pleasant, listened and answered my queries and I felt reassured about progress. This is a brief summary:

Took brief medical history, surprised I had been trying since January to see her. Bone scan shows some return of mets in lower and mid back, sacrum, both femurs and the right pubic bone. Agreed RT next Thursday on right public bone and femur. Checking with orthopaedics whether a pin is justified for the femur bone? Will go to fracture clinic next week. Full CT scan to be done, first since diagnosis so will determine if there is spread in the soft tissues.

To continue on casodex for now. See if PSA stays stable. As it is around mid twenties at the moment, no doubling yet.

Next treatment - likely Abby or enzo, likely the second one because of diabetes and the problems with steroids.
Keep chemotherapy until needed later though CT Scan to be done to confirm no further spread which could change plans. We discussed QoL issues for my work and I felt that this order of treatment made sense for me unless there were clear indications that chemo was urgently needed. Cannot benefit from the findings of the Stampede trial as already three and a half years in. She did not think chemo was needed yet so enzo likely next step

Ok to have RT even though had RT treatment over 30 years ago but unlikely to be an issue. She will get notes to check what was done then. (blast everything and hope I seem to remember) Unlikely to have been done on relevant parts.

My leg pain is considerable at times as people saw at MOTS and I hope the RT will bring some relief. I felt she was acting quickly, and answered all my queries.

I did say if she didn't treat me well Mo and/or Lyn would be with me on my next visit! She visibly looked afraid!

So feel treatment path is clear and tests will give me a full picture. I know another circle has decreased but I always feel better when I know and trust what is happening so feel ok.

User

Posted 24 Jun 2015 at 14:15

Glad you had empathy with the new onco. She sounds like she knows what she's talking about. At least she is prepared to listen to you.

Good luck with the treatment plan Paul. I hope it succeeds in reducing your leg pain at least.
Best Wishes
Sandra

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

User

Posted 24 Jun 2015 at 14:17

Well done, Paul on getting the recognition of the treatment you need.

Beast of luck.

Paul

Stay Calm And Carry On.

User

Posted 24 Jun 2015 at 15:20

Paul

that all sounds quite encouraging, Nice attentive Onco, PSA stable, RT boooked for pain management and maybe something more dramatic for your femur, enzo rather than Abby (quite understandable as you do not have to take steroids with that) no chemo yet and you feel reassured so all is good in the grand scheme of things.

You really did look as though you were struggling with the pain and mobility at leicester so make sure when you see the team next week if there is any medication you should take short term to help with the pain. If they are thinking of pinning your femur that must be looking a bit fragile so whilst RT may help somewhat it may not be enough on its own where that particular weakness is. Probably best to try things a little bit at a time.

I chuckled when I read that you threatened your Onco with me or Lyn or both of us accompanying you next time, but in all honesty I really would if you ever needed some moral support and a fiery dragon at your side.

Hope you are enjoying the cricket still, my brother was at the match at CLS he said it was really brilliant.

best wishes

User

Posted 24 Jun 2015 at 16:06

Paul

Wishing you well on what reads a more planned and hopefully a more productive journey.

Ray

User

Posted 24 Jun 2015 at 17:53

So pleased to see your update - and now more new material for your novel :-)

Lyn xxx

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

User

Posted 24 Jun 2015 at 19:17

Hi Paul,

Good that you have an "on your side" professional working for you for this part of your journey.

And was good to have a chat with you at the weekend when you could drag yourself away from your tablet! :o) Drat, can't do an open mouth gob smacked shocked type smilie

What was that cricketing chant?

Aha I know,

"Bairstow, Bairstow Rashid, Patel, Cohen, Fritz, Wang, Abello, Jones, Rashid, Bairstow" etc etc

atb

dave

Edited by member 25 Jun 2015 at 09:36 | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 24 Jun 2015 at 22:47

Thanks Dave. I do not usually become so anti social but it was a game I could not miss the end of. It meant a lot and then I returned to the fold and started drinking!

User

Posted 25 Jun 2015 at 08:58

Paul

you were not anti social at all, nobody would deny you the pleasure of Bairstow's innings we all know cricket is your passion. CB is pulling your leg (not the poorly one) I was really surprised when you went onto drinking beer though, indeed several beers celebrating Mr Bairstow's success I think. It is quite a while since I saw you really enjoy a pint or two. It made me smile.

Best wishes

User

Posted 25 Jun 2015 at 16:05

I chuckled as well Paul when I read what you had written about Mandy and Lyn I could just imagine them arriving on a Harley with a couple sheep tucked under there arms.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif enough to scare any body.

So at least you know have a plan and it sounds as though you will be able to form a relationship with your new Onco. This always helps . I am sorry that you have been in more pain recently but it does sound like the treatment will help and as you say it must be a relief to find out that RT will be helpful and available. So Enzo it is then .

Thinking of you. X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 25 Jun 2015 at 17:14

Hi Paul,

I'm pleased that you found an onco who you feel wants the best for you. It makes such a difference. I really hope that things improve for you over the coming months.

I'm sorry we didn't get chance to have a chat on Saturday, perhaps on a future occasion.

Take care.

Steve

User

Posted 25 Jun 2015 at 18:13

Thanks all for your responses. I feel I have a plan and the next few weeks will see where I am and hopefully I will be ok to travel in the autumn and early winter!

I enjoy a beer Mo, always have, but drink very rarely now. because I can't cope with the volume. Considering Dave's suggestion of a convene sheath to save the need to go!

Yes Steve stay in touch, be good to talk, we got shunted around a bit so ended up not seeing much of you. Like the pics. Perhaps we will see you back on here, time surely for an update. I am reluctant to comment on personal matters on a Facebook site too public I think.

User

Posted 26 Jun 2015 at 19:55

Hi Paul

It's a relief when you get a plan you can have some faith in and support. It sounds to me like you have had a thorough review and can have confidence in your new Onco. I love the fact that you threatened her with Mo and Lyn, I expect she would have been quaking in her boots.

The RT worked wonders for John's hip, I'm sure it will help you too.

Lots of love

Allison

User

Posted 26 Jun 2015 at 22:06

Thanks Allison. How long did the RT take to have an impact? Was it gradual?

User

Posted 27 Jun 2015 at 20:50

A few days Paul, not long, John felt unwell for about two weeks afterwards, sleepy and exhausted for a that time too. It really has worked very well and we think it's responsible for the great drop on PSA too.

Hope it does the same for you

Love Allison

User

Posted 30 Jun 2015 at 18:46

First stage of sorting out my right leg completed. Attended Fracture Clinic and eventually had a consultation. It seems that lesions caused by prostate cancer bone met spread tends to be bone forming rather than some other cancers which are bone thinning. So no immediate threat to my legs or needs for pins, nails or any other device! I got to see my new bone scan and it is clear that the greatest concentration is in the pubic bone. So hoping that the RT on Thursday will help. Some sites elsewhere but the body is not out of control. So onto RT next!

User

Posted 30 Jun 2015 at 19:25

Glad you don't need to be turned into metal man yet Paul.
Good luck on Thursday for the first round of RT.
Hope the RT impact isn't too bothersome

All the best
Sandra

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

User

Posted 30 Jun 2015 at 20:17

Thanks Sandra. Just the one treatment for pain relief.

User

Posted 30 Jun 2015 at 21:11

Some good news in there Paul, which is nice to hear about.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 30 Jun 2015 at 21:55

Paul that sounds much better than having metal Micky stuff done. You must be relieved.

User

Posted 30 Jun 2015 at 23:16

Good news - I was wondering how you would get through the metal detectors at the airport :-0

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

User

Posted 01 Jul 2015 at 09:04

Good news Paul...also sent you a PM

Bri

User

Posted 01 Jul 2015 at 17:09

Tried to send you a PM Brian but you inbox is full. Shan't go to the support group as will rest after RT tomorrow.

User

Posted 01 Jul 2015 at 17:10

Ok Paul

User

Posted 02 Jul 2015 at 18:37

Actually Brian RT delayed until tomorrow anyway so either way not on. I had a partial CT scan today to plan the RT on the pubic bone and right femur. They had been scheduled in for tomorrow and could not change it so have to go back then. Just one dose. They had found my X-rays from 1982 when I was last having RT so it brought back some memories. Also was seen by a radiographer to talk through NY issues I might have. Really good service and we chatted for a good half hour. All good.

Also full CT Scan arranged for Sunday (yes 7 day service!) so this will give a full picture and govern next steps. Saw onco again this morning and had another look at bone scan. She also gave me a copy when I asked which was really good as I can show my kids so they can understand more what I mean. So hopefully the pain will ease over next couple of weeks after the zapping tomorrow and fingers crossed there is no spread in the soft tissues and if there is at least we will know and can plan accordingly.

User

Posted 02 Jul 2015 at 18:48

You're going to have a busy few days Paul.

Hope all goes well and you get some pain relief.

Good that you have such a great team.

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

User

Posted 02 Jul 2015 at 20:12

All happening now Paul and it is about time.

I hope all goes well with your zap tomorrow and for further scans etc

Quite amazing they still had records and scans from over 30 years ago wow.

All the best

User

Posted 02 Jul 2015 at 21:26

Hope everything goes well, Paul.

Good Luck.

Steve

User

Posted 02 Jul 2015 at 22:31

Good luck tomorrow my friend x

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

User

Posted 02 Jul 2015 at 23:44

Just catching up on what has been going on SO Zapping is imminent , Sundays are Go and what was that you said about the cricket ?http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif I can't believe that I take a few days out and everything changes new avatars are springing up all over the place (loving the new look Lyn) I might change my Avatar watch this space. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

It certainly sounds like all systems are in place for you Paul as always thinking of you. Good luck for the next scan results .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 03 Jul 2015 at 01:28

George took the photo at MOTS Julie - it is about time we saw a picture of you rather than the Turmeric Prince x

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

User

Posted 03 Jul 2015 at 07:12

Good luck today Paul

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

User

Posted 03 Jul 2015 at 14:58

Been zapped, very efficiently done. Back home and resting now, just gauging whether there is any tumour flare or whether it will start its work over the next 2-6 weeks to produce some pain relief. So with family here this weekend and friends coming tomorrow it's a relaxing day and recuperation is in order. Then CT Scan Sunday and the full picture will emerge. Time to enjoy the sun! And the cricket of course! May not drink though this weekend we shall see.......

User

Posted 03 Jul 2015 at 15:04

Glad that bit is done and dusted.
Enjoy the cricket.
My other half is currently resting in the garden under the sun umbrella, listening to the tennis.

Well, he's gearing himself up for the rigours of camping on Sunday and putting up the trailer tent. Poor man

Enjoy your family weekend

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

User

Posted 03 Jul 2015 at 15:37

Paul,

Glad it went well for you. Have a nice weekend with the family and enjoy the cricket.

I hope the RT helps with pain.

Take care.

Steve

User

Posted 03 Jul 2015 at 16:59

Good news Paul have a lovely weekend enjoying both the cricket and the company of your family.

User

Posted 03 Jul 2015 at 19:06

May not drink??? God Lord, are you ill???

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

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