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Ever Decreasing Circles part three

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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