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Ever Decreasing Circles part three

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User

Posted 27 Jan 2016 at 15:09

Thanks everyone and good luck to your OH Marje, we are only as good as our latest results. The argument about delaying the new drug I think is sound, even if it is only for six weeks. If enzo then gives me more time then the timeline is stretched just a little. So worth a try.

Sandra not quite drug free as still have the prostap which is making fatigue a factor at the moment. But getting newer to book time, once I have retired at the end of April. Have to get on with it before time begins to run down! Also I guess the pain is indicative of some activity among the bone mets but within reasonable bounds for now.

User

Posted 27 Jan 2016 at 17:04

Sorry to hear about the rise Paul. But good to hear your other options can be put on hold for a while.

Male oncologist now...wonder if I will see him in March

Bri

User

Posted 27 Jan 2016 at 17:53

He is covering the lead onco who is on maternity leave!

User

Posted 27 Jan 2016 at 18:21

Hi Paul

So pleased with the scan results and a further reprieve before enzo

So you will be drug free when we see you in Feb so ok for some alcohol

All the best

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

User

Posted 27 Jan 2016 at 19:05

Hi Paul
Thats good news as we go into this year
Barry

User

Posted 27 Jan 2016 at 19:13

Originally Posted by: Online Community Member

still taking casodex so onco suggested we should try a period without it as there is sometimes a spontaneous drop which follows withdrawal of casodex and I have had a good year on it

My Onco made the same suggestion when Bicalutamide failed for me. She added that for us Gleason 8+ers the drop only happened in 20% of cases, however, the odds aren't too bad. I saw no drop and started Enzo 6 weeks later.

Edited by member 27 Jan 2016 at 19:17 | Reason: Not specified

User

Posted 27 Jan 2016 at 19:21

It isn't all about the alcohol you know guys!

Inching along Yorkhull, that's the spirit x

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

User

Posted 27 Jan 2016 at 19:57

Hi Paul

Similar to the above only at a lower level, my PSA went from 0.38 to 1.6 in 2 months, first increase since treatments started. Stopped biclutamide but still on zoladex, next blood test in 6 weeks ie this Friday, results Tuesday. Like you hoping for a decrease otherwise onco said abbi. Fingers crossed for us both.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 27 Jan 2016 at 20:20

Sorry to hear that Kev, let's hope we both get a temporary response to stopping casodex. It would be a good bonus.

User

Posted 27 Jan 2016 at 20:36

Hi Paul

Not liking the increase in psa but really liking the 6 week reprieve!

All the best,

Lesley x

User

Posted 27 Jan 2016 at 21:26

Hi Paul

Every reprieve is welcome, we've had a year of reprieves now as we expected chemo/Enza at the end of 2014 and still we haven't got there. Hope you can beat us in terms of reprieve time, wouldn't that be fab?

Love Allison

Edited by member 27 Jan 2016 at 21:27 | Reason: Not specified

User

Posted 28 Jan 2016 at 00:40

I have been trying to post all day for you Paul but PCUK would just not load for me so in times of Internet trouble I seek my eldest son 16 to help me out but these teenagers are just so inconsiderate ( he had been to see his girlfriend) not realising his mother was in urgent need of him.

Conversation went some thing like this on his return from said girlfriend.

James wake up I can't get PCUK to load for me

Eeeerhhhhhh

Repeat of above

Eeeeerhhhhhhhhh

Repeat of above

Mum I am asleep

I know darling but this is important

I then hand him said iPad.

Click, click, click

Mum you are on Safari

First thought was OH my he is has been on the juice

No Darling I am in your bedroom

Mum you are on Safari

Oh am I ( I thought it was best to humour Him at this point)

Mum you have clicked safari , I told you don't keep clicking on things

Ok I promise I won't But am I back from safari🙃

So any way it has taken all day but here I am

Not such good news on the PSA but and I always stress the buts Trevor had a huge fall in PSA when he stopped Cassodex and it was 8 or 9 mths before he started Abbi. Your scan results are brilliant so my friend onwards and upwards . We live to fight another day and those circles are still circling around.

Lots of love

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON

User

Posted 28 Jan 2016 at 09:37

Apparently Julie I am in an ovoid according to Mo. I think this is an egg shaped circle. I am just spinning uncontrollably around my environment! Anyway happy to stay in my ovoid for some weeks or months if it successfully delays the next treatment.

User

Posted 04 Feb 2016 at 13:07

So difficult few days. It is interesting without a partner I mostly feel OK as I do not have to inflict my ups and downs on someone else. My son is helpful too but a lot of time I have to make decisions for myself. Actually most of the time I quite like that. But the last few days have been really difficult. I stopped taking casodex just over a week ago and this week I have had a lot of aches and pains around the areas I have bone mets. It's been difficult to get the pain relief right and not sure if it's just a little flare up which will settle (this happened a few weeks ago) or is the direct result of the ending of casodex. I have a phone call out for the nurse practitioners to see what suggestions they have.

So this morning at 5 am I decided I could not go to London to a meeting and cancelled that. Then I went back to bed and had a good extra sleep. Trouble was it was then difficult to get out of bed and the pain relief needed immediate top up.

So not feeling good today but trying just to get through and either it will subside or I need to start enzo sooner than another five weeks.

User

Posted 04 Feb 2016 at 13:33

Hi Paul
Hopefully it is just a medication bump. I know from reading your posts that you seem to have great faith in your team , so hopefully they will steer you properly at this awkward point. Elaine always tells me to sleep when your body is really telling you to. That extra sleep has probably helped more than you know. Sorry about the meeting. Stay strong and remember all the ladies are ready to zoom round yours at a whistle
Chris

If life gives you lemons , then make lemonade

User

Posted 04 Feb 2016 at 13:54

Here's the first lady Paul, zooming in !! Not that I'm a lot of good because I do no have the experience that you talk about but I'm sure the others will and they too will zoom in.

Thinking of you Paul and hoping the pain becomes more manageable

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

User

Posted 04 Feb 2016 at 14:44

Oh Dear this is going to cause trouble I can feel it in my water, we had better form an orderly que but I think that it is me that lives closest to you Paul.

Realy hope that you get the pain sorted quickly.

💋💃👼🚘

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Feb 2016 at 14:53

Sorry to hear you're having pain, Paul. When Tony's cancer became hormone resistant,he was in quite a bit of pain for a couple of weeks, self-medicating with an assortment of drugs as he felt the need. Eventally he rang the GP, who told him to take Solpadol plus paracetamol four times a day, without waiting for symptoms to remind him. He did as advised, and very soon he was pretty well pain free, and stayed on that regime until he was settled on the Enzalutamide, which is now doing the job very nicely. So don't be afraid to seek advice on proper pain management, it really can help.

User

Posted 04 Feb 2016 at 15:23

Thanks folks. I feel better just for th support! Nurses have suggested that I get stronger pain killers, tramadol and more oramorph. They are thinking it might be tumour flare following stopping casodex. So waiting for GP to ring back! In addition the urology nurse will ring the onco and see if I can move to enzo more quickly. So things happening! I'll keep you posted!

User

Posted 04 Feb 2016 at 18:00

Hi Paul,

Hope you have that pain under control soon, if you ever need anything give me a ring i am only down the road.

Don't bother with Julie she cant drive, she would be coming on the ride-on, take her days http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

So i have loads of drugs and can travel

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

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