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Ever Decreasing Circles part three

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User

Posted 13 Jun 2015 at 15:56

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 12:55

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 18:30

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 12:20

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 13:15

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 13:17

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 14:20

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
xx
Mo

User

Posted 24 Jun 2015 at 15:06

Paul

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

Ray

User

Posted 24 Jun 2015 at 16:53

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 18:17

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 08:36 | Reason: Not specified

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

User

Posted 24 Jun 2015 at 21:47

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 07:58

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
xx
Mo

User

Posted 25 Jun 2015 at 15:05

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 16:14

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 17:13

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 18:55

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 21:06

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

User

Posted 27 Jun 2015 at 19:50

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 17:46

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 18:25

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

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