As usual, you are in my thoughts Paul, as are others in a similar situation.
My head is so full of you all and it leaves those of us looking on feeling useless, well it does me anyway (shouldn't make sweeping statements!)
I really really hope that the Enzo suits you and benefits you.
xx
We can't control the winds - but we can adjust our sails |
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Blinking heck Paul, I'm so glad you followed this up. I have to admit I'm on these things every step of the way and will ring the specialist nurses without delay if i think something isn't right. We have just had John's lastest bone scan, it was a tough day for him because as most people know, you have to go twice, first for the injection and then three hours or so later, for the actual scan. Since he is only a week post op it was a real challenge, but he felt he wanted to do it as goodness knows when we'd get another appointment. I guess we won't hear anything until our next onco appointment on Feb 8th but I really feel that we need a change of meds this time as I'm sure that the prostate is growing pretty fast.
You put things so eloquently and somehow seem to encapsulate our own thoughts. Wishing you well my friend.
Lots of love
Allison
Edited by member 09 Jan 2016 at 21:08
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Thanks Allison. It has all been corrected now and CT Scan next Wednesday so not lost any time! Nurses as often were very good and helpful when I went in this morning.
I can understand that John would want to get bone scan done, it can take time to re arrange and you need to know. Hope he is recovering from the op now.
Our paths have had quite a lot of similarities though haven,t had the recent problems John has had. We have been nip and tuck about the next stage and sounds as if John won't be far behind me. Will keep in touch.
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Paul,
Not sure how but I missed your wonderful post from Xmas Eve I have always admired how elequently you are able to put pen to paper but then I suppose you are pretty much in awe of humour .π€
Wheels and circles ehhh. I have got one request when your book is published can I have a signed copyπ
So glad that you have your scans booked and sorted the sooner that you can get the Enzo Underway, not good news that your pain has increased this is such a strange disease when you think that your scores and Trevor's are so different at nearly 600 his walking and pain is still good. A little more of a shuffle but still on paracetamol another reason why we can never compare . So your circles are getting smaller and the wheels are rapidly falling off our wagon. Onwards my friend always onwards.
Much love
BFN
Julie X
ps I know that I am 3rd in the Que for female company at Onc visits but if you need me just yell , I am very good at listening , superb at keeping a secret and renouned for my witty quips. π€
X
NEVER LAUGH AT A LIVE DRAGON |
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It seems that not only are you incredibly clever Paul , but you have the "allure" as Miranda's little pal says. Your oozing it. The girls will be fighting over you soon. :-))
Chris
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Hi Paul,
i hope you have the pain under control now, good luck with the scans.
What is it with January there is always bad news.
Look forward to seeing you soon
Si
Don't deny the diagnosis; try to defy the verdict |
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Julie - I've been lucky in that since being diagnosed I've had almost no bone pain. However, I have become 'creakier' in the hips such that Mrs_ColU has had to walk slower when out with me. I think 'creakier' as I put it and 'a shuffle' as you put it may be similar. My assumption has been that this is probably caused by the HT rather than the PCa.
In early December 2015 I developed a sore right shoulder. My GP prescribed Naproxen (an anti-inflammatory) and Omeprazole (something to stop the Naproxen from upsetting my stomach). I took them for six days and they magicked away the problem with the shoulder. To my surprise they came with a Brucie Bonus in that my creakiness seemed to disappear as well and all of a sudden I was bounding up and down hills like a young gazelle leaving Mrs_ColU in my wake. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
The effect is gradually wearing off now but I intend to ask my GP if I can use them again on special occasions such as prior to a walking based holiday.
Could this be worth a try for Trevor?
User
Nice to hear from you Julie, let's hope our wheels and circles don't get mixed up could be a right mess!
I think my walking problems stem from where my bone m are located and in particular the spread on my pubic bone. On the scan this is the deepest black. This is where I had RT and within 59 yards I can feel it which discourages walking further. Also both thighs have bone Mets and they would ache much more without pain killers. So though RT ameliorated the extreme pain it's basically a weakness in my body! I guess where you get the heaviest deposit this will produce the problems. I have no strength in my right arm and this again is down to mets on my right shoulder. Because it's not load bearing I can manage that better providing I do not try to use it or lift stuff.
The PSA numbers are also interesting though I have concentrated on pattern rather than size. I have had low numbers since diagnosed only 7.5 but Gleason 9 and bone mets but relative to that it has suddenly grown again. I guess it's time for enzo.
Thanks Si and Chris too. As the week draws to a close the main pain in the middle of the back has started to recede. It's been a tough week but I am hoping the rest I have had will help me through a busy two weeks.
Could be a bidding war for the book assuming it ever reaches the public. But I shall try and keep one by for you Julie!
Edited by member 09 Jan 2016 at 13:06
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I think my wife would be fascinated . She got an honours degree later in her years in English Lit / Creative writing. If not for personal circumstances and the ease of income with dog grooming , I think she would be a literary giant haha .
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Well I cannot promise a wonderful novel or indeed finishing it at this stage. But it was a personal ambition and I have written about 60000 words so not quite half way there. Hope to really get going after I retire.
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Originally Posted by: Online Community MemberIt seems that not only are you incredibly clever Paul , but you have the "allure" as Miranda's little pal says. Your oozing it. The girls will be fighting over you soon. :-))
Chris
Chris
you have to meet Paul and get to know the amazing man he is, clever, witty, humble, charming and a truly amazing humanitarian. I am sure Lyn, Julie,Ness and any number of other members on this forum male and female would agree.
Us Ladies would not fight over him but believe you me we would fight for him every step of the way.
xxx
Mo
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So appointment with onco today and not a bad outcome, expected to be starting my enzo journey today but another reprieve. So first the bad news is that PSA has risen once again and is now 47 up from 38 just five weeks ago. But I was 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. So before saying yes to this we looked at the latest CT Scan and this is good news. Still no soft tissue spread at all and th bone mets appear to be the same as before. Given that, I agreed to a further six weeks without casodex to see where PSA went next with a view to starting enzo then or maybe not even then. This stretches my timeline as it delays newer treatments a little longer. So agreed with this and also fair to note if i had said enzo now he would have gone with that too.
Discussed my middle back pain and he listened carefully. Did offer RT as pain relief but I am not at that stage yet as it comes and goes and with pain killers and rest I can calm it down. But his parting comments 'phone me if you need to discuss anything' was very reassuring.
So I am still tiptoeing towards the next treatment as I reach four years since diagnosis. You have to make the most of it really it's the start of another year!
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Nice to hear this Paul. And nice comments from your Onco.
Good news after the batting collapse.
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. |
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Thanks for the update, Paul. It must be reasssuring to know that there's no urgency about the next step. In Tony's case, PSA had risen from 18 to over 130 in three weeks, so there was no time to hang about. He seems to be on a fast-track version of Pca, I'm afraid. But all is well at the moment - today is blood test day, with result tomorrow, so we are apprehenisve, although hoping for another good result. As you say, we have to make the most of the good times, without looking too far ahead.
Marje
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Great news Paul, I'm very pleased for you.
More time, drug free, to get on with the book !!
All the best
Sandra
We can't control the winds - but we can adjust our sails |
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Good luck with the blood tests tomorrow piglet. Fingers crossed for you
We can't control the winds - but we can adjust our sails |
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Hi Paul
That mostly sounds reassuring, another little ovoid in the latest circle.
xxxx
Mo
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Glad that it's better than expected. Wishes to you Paul
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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.
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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
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He is covering the lead onco who is on maternity leave!
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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
Si
Don't deny the diagnosis; try to defy the verdict |
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Hi Paul
Thats good news as we go into this year
Barry
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Originally Posted by: Online Community Memberstill 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
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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
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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 |
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Sorry to hear that Kev, let's hope we both get a temporary response to stopping casodex. It would be a good bonus.
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Hi Paul
Not liking the increase in psa but really liking the 6 week reprieve!
All the best,
Lesley x
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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
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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 safariπ
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 |
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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.
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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.
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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
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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 |
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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.
πππΌπ
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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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.
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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!
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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
Si
Don't deny the diagnosis; try to defy the verdict |
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Nowhere but here could someone say "I have loads of drugs and can travel" and no-one bats an eyelid.
Paul, are you taking the painkillers systematically or holding on / delaying in a "perhaps I can manage another half an hour without" approach?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Paul
.... I know I live quite close by and in truth just one text message and I would be there to help any way I could. Even if it is just making cuppas and tasty food or running errands. Never ever be stuck without help I would be mortified at the very thought.
You may be single but you are not alone.
Piglet has a really valid point, getting medication to a preventative level is a bit trial and error and in the time it takes to establish the best dose and frequency use the oramorph. I think I mentioned to you once before it does have a shelf life once opened so if you have not taken it for a while get a new supply.
Casodex cessationn can cause a withdrawal bump or tumour flare, hopefully revised timescales for treatment plans will take care of that and quickly.
Si reckons Julie would take days on the ride on to get to you, he hasn't seen her turbo charged broomstick (she borrowed it from me!!) I am intrigued to see what Lyn has up her sleeve but suspect that HD of John's might feature?!
all my very best wishes and a big friend hug
xxx
Mo
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Sorry you are not feeling the best Paul, hope that quacks can get you up and running ( sort of!) soon. Take care, Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Sorry to hear you are going through some tribulations Paul. On the bright side, England did well against South Africa.
I hope you have a sense of humour mate? Will buy you a beer, if you are drinking?
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. |
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So sorry to read about the pain Paul, I'm in full agreement with the others about ensuring you take the painkillers regularly, this is my biggest battle with John. Plenty of help and support here Paul, I hate to think of you being lonely Nd in pain, makes me feel sad for you.im glad to know that your son is there for you.
Lots of love
Allison xx
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Thanks for all the kind thoughts. The flare happened quite quickly so though I was taking medicine regularly it was not strong enough. I have also used the oramorph sparingly but it was suggested by the nurse I should use it more. GP was really helpful and sorted a prescription for tramadol. Said I should look it for hallucinations and the image of Julie charging up the country to see me as probably one such hallucination. So getting my head around pain management which I do understand but this came on so quickly. Maybe the flare will calm down too.
I know I am not alone with you wonderful lot but just felt a little vulnerable this morning as the pain was all over the place but is settling a bit now.
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π·πππΌπleaving in 20 minutes be with you sometime on Tuesday.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Hi Paul
Aren't you the lucky man having all these lovely ladies on here concerned about you! What a lovely group of kind people.
I do hope tramadol and increased oramorph helps with your pain and enables you to get about a bit better.
Lesley x
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Good day to you Paul - has the pain settled at all?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Beginning to get it under control. Tramadol certainly has had a positive effect. All these painkillers make me a little drowsy but otherwise no other side effects. Went to Halifax today which was a good test of how I felt. The worst pain is my right pubic bone which was subject to RT relief last July. This has flared again and just sitting is a problem, and walking sets it off too. So this hurt quite a bit at lunch but I can avoid it when I am at home where my own chair does not set it off.
But I hope I have some control now and that the flare may also begin to recede. Feel a bit drained but less frantic than yesterday where I was struggling to do anything. Thanks for your kind words of support, invaluable to how I feel!