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"The road ahead"!

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User
Posted 15 Sep 2017 at 22:39

Great news

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Sep 2017 at 19:32
What great results. I read an earlier post up I've about people worrying about lower PSA results, it's so individual that what Lyn says it spot on. Some people feel the change health from relatively small rises, but John's has gone 9, 27, 41 in 3 months, and yet he's much the same too. He's having Radium 223 but has not yet had chemo or any of the newer drugs, so we have tools left in the box. I'm not sure when those tools will be applied but I'm guessing when and if John starts to feel bad.

Cheers
Devonmaid
User
Posted 06 Oct 2017 at 16:40

Hi all, Just a quick update, as you can see from the above thread I’m now on a chemo and steroid “holiday” till at least the 18th Dec.
However yesterday at 09-00 I had my 9th, (every 4 weeks), degaralix hormone injection and as usual within a couple of hours I was suffering from burning and pain around the injection site and this usually brings me down for about 3–5 days.
However as I’m no longer on chemo or steroids I thought what the hell and took a pain killer, (co-codamol 30/500mg) and to my great surprise not only did it calm everything down but as I’m now pain free I feel a lot better too?
To date I ve taken 2 tablets yesterday at 19-45 and 02-45. Whilst today I’ve taken one tablet at 10-00, just cut the grass approx 1 acre, and depending on how I feel Later i may take another before I go to bed.
Submitted for information just in case someone out there is suffering similar hormone injection side effects. Hope this helps as it’s certainly working for me, just wondering why I didn’t use them following earlier injections ?
All the best
J.

User
Posted 02 Nov 2017 at 12:07
Hi all see above threads re my PCa history—-just been down the surgery for my (11th) Degaralix hormone injection, and whilst I was there I picked up my latest blood test results, which were taken on Monday due to the fact that I’ve had a nasty cough for the past 10 days, with antibiotics prescribed for 7 days from Monday. Anyway to cut a long story short, the cough is now starting to break, and my PSA is down to 94!! Which is the 1st time it’s been in double figures since diagnosis in March (1547)!! Also all my other comprehensive blood tests are in the normal range so what’s happening here? Been off chemo and steroids now since August/Sept yet PSA continues to fall. As stated previously I’m back to see my onco on the 18th Dec, so let’s hope my PSA continues to fall which means I may get another extension to my treatment holiday?
So it’s early “seasons greetings” from me, and let’s just hope I’ve managed to put the big C back in its box for a while longer.
All the best
Valleyboy.
User
Posted 02 Nov 2017 at 12:23

Great news and long may it continue.

User
Posted 02 Nov 2017 at 14:00

It's great to read some positive news. Lets hope for even better by December.

User
Posted 02 Nov 2017 at 14:23
Good news, I’m sure chemo continues to have an affect for some time, so pleased for you.
User
Posted 02 Nov 2017 at 16:28

Happy to hear so.
Good news are always welcome. Made my evening a bit better 👍.
Xx
Lola

User
Posted 02 Nov 2017 at 18:02

Great news, as other have said long may that continue. Ian.

Ido4

User
Posted 18 Dec 2017 at 21:48

Ok so it’s 125 days since I last had chemo, and 95 days since I had a steroid tablet so today I went back to see my oncology specialist for a mixed bag of results.
1-all bloods other than PSA stable.
2-PSA up 33 to 128 but as I started on 1547 she’s still not too concerned at the moment as this could just be a fluctuation?
3-Full bloods to be taken again in approx 6 weeks with a further review on the 5th Feb.
4-Then if PSA is the same or lower no treatment, (other than hormone injections), for another 3 months, however if it goes up again by Feb then I will be starting on enzalutamide as well as regular hormone injections.
5-Whatever happens my regular monthly degaralix injection at the end of December will be my last monthly shot, as from January I’m being put onto a 3 monthly regime, (either zoladex or Prostap3).
So as I said at the start a mixed bag of results for the festive season??
All in all I still feel fine, playing golf, walking and cycling as required.
However any/all comments from anyone who’s been down this possible Zoladex/Prostate/enzalutamide road would be more than welcome.
Seasons greetings to all.
Thanks
J.

User
Posted 19 Dec 2017 at 08:09
I am pleased to see there is some stability in your results although a slight upward trend in your PSA, although all appears very manageable

Great news


Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 19 Dec 2017 at 21:21
As you say J a mixed bag , great news on the bloods but the PSA is a bit of a clucker .
My advise for what it’s worth would be relax enjoy the Xmas festivities and get back on the bike in 2018 ready to give it some Wellie .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 Jan 2018 at 22:52

Hi all, as mentioned above today I had a phone call from my practise nurse stating that from the 29 January I will be moving from monthly Degaralix hormone injections onto 3 monthly Prostate/3 injections.
Also approx 1 week after receiving my first Prostate injection I have an appointment booked with my oncology consultant to see if I also need to move onto Enzalutamide?
I notice in the information sheets produced for Prostate/3 that in some cases it causes a “flare-up” re PCa symptoms and wondered if anyone out there is—
A—on Prostate/3? If so for how long?
B—experiencing any flare up issues? and/or any other issues associated with this drug.
Thanks
J.

User
Posted 10 Jan 2018 at 22:54

Prostate/3 = Prostap/3. I hate predictive text!!!🙈

User
Posted 10 Jan 2018 at 23:23
Hi, I’ve been on PROSTAP since June 2017, had 3 x 12 weekly injections so far. I had some tumour flare for around a week from the first injection. Also had the hot flushes but touch wood These are under control from the acupuncture.
All in all side effects have been manageable so far.

Hope that helps

A
User
Posted 11 Jan 2018 at 08:59
Hi Valleyboy, I was prescribed bicalutamide tablets for three weeks to avoid/reduce tumour flare. I took the tablets for 9 days then had the PROSTAP injection. Continued taking the tablets for another 12 days. Didn’t experience any problems as a result.
Ian

Ido4

User
Posted 05 Feb 2018 at 15:50

5/2/18–Well not such good news to report— just back from meeting with onco and my PSA has risen rapidly from 128 to 322, (1547 at diagnosis), yet still feeling good??? And only recently back from a golfing holiday in Portugal?!
However she states that even tho my testosterone is low at 0.5, I’m now hormone resistant and will soon be going back onto a 2nd chemo regime of 6 x infusions every 3 weeks but this time it’s going to be Cabazitaxel which is a stronger chemo than Docetaxel.
So that’s my summer Golf messed up, same as last year, but hey-ho if it’s got to be done then so be it.
Obviously as I feel ok I was a bit down after initially hearing the news but I’m ok now, just been for a walk and have now got my head back on and once again look forward to the next challenge on my PCa road.
Nb
Comments welcome from Anyone out there with experience of Cabazitaxel treatment?
Thanks
J.

User
Posted 05 Feb 2018 at 16:01

So sorry to hear this news. I’m watching these posts carefully as it seems likely I’ll finally be diagnosed advanced soon. Very fearful of injections and chemo. You’ve been so brave and upbeat. Hats off to you. Best of luck

User
Posted 05 Feb 2018 at 16:34

Hi Sorry to hear your news;


I have had both Docataxel and Cabazitaxel and i found Cabazitaxel was no where near as harsh as Docataxel


Don't write the golf off just yet.


Anything you want to know just give me a PM


Si 


  

Don't deny the diagnosis; try to defy the verdict
User
Posted 05 Feb 2018 at 17:05

Sorry to read this VB.

I hope it isn't as harsh as you think it might be.

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