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Ever Decreasing Circles part three

User
Posted 05 Feb 2016 at 18:02

It may not be the PCa Paul - lots of people need painkillers before they visit Halifax!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Feb 2016 at 18:30
Especially Huddersfield folk.
User
Posted 06 Feb 2016 at 07:52

I hope the pain has receded Paul...lots of kind offers of help as always. But you have my mobile number and I am literally down the road should you ever need anything or anyone

Take care

Bri

User
Posted 06 Feb 2016 at 08:54
Hi Paul,

Hope things are improving for you now, sorting out the right combination of drugs always seems to be a challenge. I suppose that is because we are all unique individuals, the way our bodies react to illnesses such as cancer prove that point.

Please take advantage of the help and support offered, it shows how much we all care about you.

Have a good weekend and don't be surprised if there's a queue of women outside your door at some point.

Best Wishes

Steve
User
Posted 09 Feb 2016 at 19:15

Just a quick update. Saw my oncologist today who fitted me into a busy appointment list, quite impressed with that. He thinks I am experiencing a form of tumour flare as a result of stopping the bicultimide and that he believes it will settle down, clinically my signs are good from the CT Scan etc so there is no reason for more permanent difficulties. So he said I could start enzalutimide immediately, or wait to see if PSA responds positively and if I went for the latter return if there was any continued difficulties.

As I understand what he is trying to do with the waiting to see if PSA drops which could mean a longer period before I start enzo I have decided for now to go down that route. The idea of a flare fits as this came on all of a sudden and is now in control with pain killers and if it does not abate he is happy for me to go back. In fact I was impressed with his willingness to see me. He also will give me radio therapy if the pubic bone problem continues as this is this most painful of the areas.

So not back to 100% by any means but resting up this week so hopefully by the weekend I will begin to get off the strong pain killers. Let,s hope so.

Nurses and my onco been really supportive, even GP so happy with that too.

User
Posted 09 Feb 2016 at 19:31

I'm glad that you have a supportive onco and nurses. Rest up and hopefully symptoms will settle down a little for you. My dad just started arb, hoping its successful.

User
Posted 09 Feb 2016 at 19:43

Good that you are being given proper support Paul. Take it easy of you can.

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 09 Feb 2016 at 19:52

Hi Paul,


Take it easy.  Pleased to hear you're getting good treatment and a little happier about things.


All the Best,


Steve

User
Posted 09 Feb 2016 at 20:13
Paul

Sounds like good news,look after yourself and take care.

Thanks Chris
User
Posted 09 Feb 2016 at 20:14
Paul
sounds like a good supportive hospital and GP , a rational explanation for the sudden pain and so if it is under control sticking to a later switch to enza seems sensible.
Now sit back and enjoy the cricket, rugby and footie
very best wishes
xxx
Mo
User
Posted 09 Feb 2016 at 22:57
Any delay (that doesn't hurt you) in starting a new treatment is a win I think Paul. Good news that your Onco was available and willing to fit you in, better than ours last year as we waited 19 long days to see ours when John was in severe pain from his hip met.

I hope you are managing to rest up and relax and starting to feel better
Lots of love
Allison
User
Posted 09 Feb 2016 at 23:01
Paul sounds like a plan to me,
Enza still in the box for know is brilliant news the longer that you can delay the better. Keep circling my friend keep circling (or should that be ovoiding) 😉
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 09 Feb 2016 at 23:46

Well after the problems you had before - dismissive and too happy to let things slide - I am pleased that the new guy is on the ball and attentive. I think delaying Enzo just a little while longer is a good strategy

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Feb 2016 at 10:51

Thanks folks. To be fair Lyn that was an isolated uro, all my other medics, Uros, oncos and nurses have been excellent.

If I continue ovoiding Julie I would be avoiding the inevitable. So I think circling remains my goal, even if last week I was in a quick spiral of decline, I am hoping it levels out this week!

If the flare diagnosis is correct things should settle, I can then reduce the strong pain meds and hopefully get a good bounce from stopping bicultimide and stretch out the time a little longer. It sounds a plan.

User
Posted 10 Feb 2016 at 11:10

Hi Paul,


I do follow your journey on here, as I do all the other 'senior members'

For obvious reasons I can't comment or offer any advice to you regarding treatments.

Just want you to know that I wish you well, and admire the attitude that you and the others have in fighting this disease.

Best wishes
Luther 


 

User
Posted 14 Feb 2016 at 10:02

When I was finally diagnosed with incurable PCa I first told my two children. They had known the cancer diagnosis but we had been hopeful after a CT Scan that it would be on the cureable side. This was abruptly ended when the bone scan revealed bone mets in a number of places. My daughter, naturally upset, confused, angry, came up from London that same evening. The following day I was due to take my son to a wedding reception. I suggested to my daughter that we find a restaurant near to the reception and enjoy a relaxed meal and chat. This was the first visit to a little place in Humberside, Barton upon Humber. We had a lovely meal, shared emerging thoughts about the future, cried, and began the process of getting our collective head around what faced us. I said that night we should return here once a year to mark the passage of time, not knowing how many I could achieve as the prognosis had been 18months to 2 years.

Last night the three of us returned to Barton for the fifth time, celebrating four years survival, enjoying probably our best meal ever and still here, still battling, still living. It also marked the end of the worst couple of weeks I have experienced, the tumour flare, now definitively in remission, just normal aches, pains and tiredness. I hope I can build up my resilience once again.

So four years on and still counting. I have said before I am not under any illusions that this will last forever. I know my circles are decreasing and I know too what Bazza calls the uncertain certainty of the end game will arrive one day. But each year I have a dinner date to remind me I am still going strong and as long as we can we will book our annual dinner, always around Valentines, always in Barton, always at Elio's, to mark the passage of time, the accumulated memories of another year. I am glad of two things here, the restaurant remains open (it is a most inconvenient journey of about one hour from home but it's just fate) and it serves good food, fancy revisiting a place where the food was poor! Appropriately valentines as I am with the two loves of my life, my two children!

Have a good day everyone!

User
Posted 14 Feb 2016 at 10:26

This post warmed my heart. You have learnt to savour and value every year spent with your loved ones . Sadly we often can't or don't do this so well without that dagger hanging over us. Long may your yearly celebrations continue. Georgina

User
Posted 14 Feb 2016 at 11:12

Great post Paul
Many rendezvous yet I'm sure. I'm gunning for you along with everyone else. Don't let your groupies down ok
Chris

User
Posted 14 Feb 2016 at 11:59

I'm so glad that you get to do this Paul. It not only marks the time for you but (selfishly) it marks the time for others on here.

A lovely inspiring post as usual. I'm also pleased that the restaurant is worth returning to !!

We can't control the winds - but we can adjust our sails
User
Posted 14 Feb 2016 at 12:15

So glad you had a great time with your family Paul. Although we have a terminal disease, you are such a positive force in showing that the terminus is literally beyond the horizon. Here's to many more Barton Valentine dinners.

"And Rocky said, doc it's only a scratch. And I'll be better, I'll be better doc as soon as I am able"
User
Posted 14 Feb 2016 at 16:22

Top post. Top man.

User
Posted 14 Feb 2016 at 18:13
What a lovely post Paul I can just picture you and your children enjoying a wonderful meal together . Long may this tradition continue.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Feb 2016 at 02:22
Hi Paul,

Really hope this tradition continues for a long time to come. I can't think of nicer way to spend a day than to enjoy a good meal and a couple of drinks with your loved ones.

I hope things go better for you in the coming months.

Best Wishes,

Steve
User
Posted 15 Feb 2016 at 08:21
Paul
Lovely to hear your Barton traditional meal went so well. I hope you get to do this over and over again.

My very best wishes
Xx
Mo
User
Posted 15 Feb 2016 at 08:52

Hi Paul. Just adding my support along with your legion of fans !


 


Fiona.

User
Posted 15 Feb 2016 at 10:07

Great to hear you had a good night. Really glad to hear the pain is subsiding also

Take care

Bri

User
Posted 15 Feb 2016 at 11:10
Nice reading that you had a good night out. I have 2 daughters too and being with them when they're home is just fantastic.
I've followed your posts since joining and just want to wish you the best in these uncertain times for you.
User
Posted 15 Feb 2016 at 20:06
Absolutely heartwarming post Paul, many more meals are ahead my friend.
User
Posted 15 Feb 2016 at 21:17
Hi Paul
What a lovely post to read. Glad to hear the flare up seems to be subsiding. Enjoying quality time with the most important people in your life is wonderful.
Long may it continue.
Lesley x
User
Posted 08 Mar 2016 at 18:50

So back for the latest PSA today and discovered it had gone up to 53.75, an increase of five so not the hoped for reduction but not jumping quickly either. I was rally impressed with the discussion with the onco who took a holistic view of my situation before advising options. We decided to delay on new medication (either enzo or chemo) until I have retired. I was very impressed with the consideration towards my final weeks at work and the risks that introducing a new drug regime or chemotherapy might bring. So I have been given steroids ( dexamethasone) and some tablets to ward off any stomach problems which is designed as a supportive treatment for the aches and pains I have had. But I will only start this if my pains return and stop me working, a sensible short term solution and I am happy with that. It was a sensitive discussion and the consultant was listening!

This is a new area for me so wondered what advice/experience have of this steroid and its impact. I am not immediately going to start it. At the moment since the tumour flare, I have been a lot better pain wise though not without pain.

I had not anticipated this as a next step so it has taken me a little by surprise but I think it's a good option.

User
Posted 08 Mar 2016 at 19:32

Can I ask what dosage he takes? It will help me relate to what they have suggested for me. The side effects sound unpleasant though! Thanks for sharing!

User
Posted 08 Mar 2016 at 19:41

Hi

I've just had to remind him to take them tonight as it is Chemo day tomorrow. His chemo is scheduled for 10 am, so 12 hours before at 10pm he has to take 4 x 2mg, then at 7.00 am tomorrow morning (3 hours before) he takes another 4 x 2mg and then at 9.00 am tomorrow morning (1 hour before) he takes the final 4 x 2mg - so quite a hefty dose in a short space of time.

Hope this helps.

User
Posted 08 Mar 2016 at 20:09
I'm sorry to hear of the increase Paul but am super impressed with your Onco.

I suppose the idea is to enjoy your last few working weeks and why not? Plenty of time for the other treatments after you are a gentleman of leisure xxxx
User
Posted 08 Mar 2016 at 20:26

This is very helpful Thistledubh as this does is so much larger than intended for me. Maximum does for me is 2 mg once a day and the advice is to start with 1 mg so it's a different ball game I hope. Still in the box for now!

User
Posted 08 Mar 2016 at 23:37

Sorry about the rise but a hyper-Yorkhull would be worth seeing ... you might finish your book if you take enough tablets!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Mar 2016 at 10:12

Not a bad call Lyn as when I retire the novel is the priority!

User
Posted 09 Mar 2016 at 11:12

Hi Paul

I’m trying catch up on posts. I read you’re getting prepared for yet another challenge on your PCa journey. I wish you all the best and luck on that.

Keep going as well as you can.

Ray

User
Posted 09 Mar 2016 at 11:14

I wish you well with the tablets Paul and hope that the last few days at work are all you want them to be.

A sad time for you too as it marks the end of an era, but hopefully the start of a different one, with the novel to finish and all the others things that you may have planned.

All the best

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 09 Mar 2016 at 11:54

I can only wish you all the best Paul
You will enjoy retirement as you have things to do and a book to write etc. I think its great that you and your Onco have a great bond . Its of vital importance . When I saw mine last week I felt that El and I and him bonded really well and reached an understanding and a plan that we are all happy with .
Hope the new tablets ok , and most of all I wish your pain to be minimal
All the best
Chris

User
Posted 09 Mar 2016 at 23:11
Hi Paul,
So not so good news re PSA obviously not what you wanted to hear. Hang in there my friend you have lots of options still available , so keep focused .
It is so comforting when a good rapour is made with our onco and it sounds like you have exactly that.
Trevor is taking 10 mg prednislione , 5 in the morning and 5 at night . He is extra hungry and has much more energy, other than the odd panchaunt for climbing on the roof To check rat infestations 🙈 Then life is well pretty much average🙃
Lots of love my friend.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 09 Mar 2016 at 23:30

Hi Julie,

The suggested dose for me is very low and it is optional. The pains are behaving themselves for now so will leave it a while. I am tempted to see what energy the steroids might bring me but resisting that temptation as try and keep what I take to what is necessary. But it's there and immediately available so that's comforting. I seem to be having a good week this week so will keep it in the box a while longer though it might help treatment more widely so still thinking!

Good to hear from you.

User
Posted 10 Mar 2016 at 07:51
Paul

Sorry to hear about the PSA rise. Your resilience and tenacity never fails to amaze me and I am sure you and many of the other guys like you are an inspiration to others.

Thanks Chris
User
Posted 10 Mar 2016 at 10:17

Thanks Chris, for me the key has always been acceptance of the end game which I had to work hard to do but now whatever life throws at me I am still here and enjoying it and for that I am grateful. I do believe in positive thinking more than pomegranate juice!

User
Posted 10 Mar 2016 at 11:04
Hi Paul
sorry I would have posted sooner but I have been on my travels again.

Low dose dexamethasone (1 - 2mg daily) is a really common co- prescription for helping to combat fatigue or general malaise from illness or as a counter measure to drug SEs.

Having it there to use if you feel you need to in order to finish the last few weeks up to your retirement, is a good idea. Just be mindful to follow the directions for taking it and also for stopping it if you decide to go down that route.

From what you have said I suspect the stomach meds are an acid inhibitor possibly Omneprozal or Lanzoprosal (these are routinely prescribed to anyone taking any long term anti inflammatory or some acute pain relief drugs) to reduce the risk of stomach bleeding or ulcers. In which case if you are still using daily pain medication you should take these.

Looking forward to you completing that book too.

My very best wishes as always
xx
Mo
User
Posted 15 Mar 2016 at 23:04

Hi,


I have been on dexamethasone for over a year now. It has been very effective in reducing my PSA which had risen to 16 when bicalutimide stopped working. (It was 364 when diagnosed)It is now 0.8.


However, although I am very grateful for this, my weight has increased by 4 stone over this period. I had my passport renewed two months before starting the steroid. I now do not even look like my photo anymore, I have always been thin, but now I have a fat rounded face. I have had to keep buying bigger and bigger clothes.


I am very aware how lucky I am, reading the serious situations many on here are experiencing. On the plus side, all the other treatments are still available to me when the steroids stop being effective.


I have had 14 months of minimal side effects (apart from going fat) so would have no hesitation urging you to give them a go. You can always stop if they disagree with you.


Best regards


Norman


Edited by moderator 16 Mar 2016 at 19:26  | Reason: Not specified

User
Posted 16 Mar 2016 at 19:46

Thanks so much Norman for your information. I am already too big so I guess putting on weight is a worry. But I am still not entirely sure about going down this path. If not for any reason that the pain I was in has subsided for now and I feel I should wait for its return before using this option. Having the choice makes me more hesitant than if they said use it from tomorrow. So for a few more days I will keep it in the box. I have a weekend away and the extra activity may set off some aches and pains so maybe by next week I will be looking for it.

User
Posted 14 Apr 2016 at 16:00

Update on the steroids - after a weekend away which almost brought my body to a standstill with too many aches and pains, particularly in the right leg, I thought I would try my low dose steroid, dexamethosone, and started on 1 mg on 22/3/16.

Well it certainly does what it says on the tin. It has given me an amazing boost in so many ways. My brain has been active and clear and I have completed a whole host of work projects. Secondly the aches and pains have simply disappeared. I have to watch how I sit as my right leg remains a problem if I find myself in poor seating but otherwise it is as if I have been oiled and everything works so much better. I had a few days in Malta with my daughter and it was a great time. My stamina was good and each day I woke up refreshed and not stiff at all. The other impact has been on my enjoyment of food. I seem to have got my tastebuds back in ways I did not realise had disappeared. Of course it makes me want to eat more and I am watching that but for now to really taste food again is great.

Now I know this is a temporary fix and I know it won't last forever. But what a holiday from the fatigue and just at the right time, I cannot thank my oncologist enough for spotting that this was the right time to suggest this, given all the projects I have to complete before retirement, now only two weeks or so away! I would like to feel like this when I get back to the novel but as always I am in the hands of my PSA and likely to move to enzo in May if it has continued to rise.

But for once I can convey a real sense of well being. I still get tired and know the effect is illusory but for now I am enjoying this steroidal induced holiday from the constant pain and fatigue!

User
Posted 14 Apr 2016 at 16:24

How lovely - your renewed energy jumps out of the screen. Malta looked fantastic - I do have it on my bucket list because my mum loved going there although I have heard it is a Marmite destination.

Two weeks to go ..... eeeek xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Apr 2016 at 16:49

Paul


Good to hear there has been an improvement even if it is as you say "only temporary"


Thanks Chris 

User
Posted 14 Apr 2016 at 18:14

We have the page end problem so just trying to get it I we the page. When will they resolve this!

 
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