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Ever Decreasing Circles part three

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User
Posted 25 Jan 2018 at 07:21

Paul,

Nice to see some steady progress.

I am on weekly Alendronic Acid for the bones and doing well on it.

All the best

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 25 Jan 2018 at 12:04

Thanks Dave. I am hoping the side effects are minimal and that it helps. It feels like the onco is searching for a combination which could work for a while. I hope so, the alternative is reduced options on this uncertain journey.

User
Posted 25 Jan 2018 at 21:51
My little scooteraholic,

Great to hear from you as you might remember Trevor was on Zometa for around 3 years and had little or no side affects until the teeth issues . So yes get the dentist appointment first .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 Jan 2018 at 23:34

Thanks Julie. So lovely to hear from you. Well I hope there are few side effects and some positive difference as a result of it. We shall see. Be great to be scooting about this summer. I remain positive, it’s the only way!

User
Posted 30 Jan 2018 at 19:51
Oh good news in a way Paul, no one has offered John Zometa, but then he has had Radium 223.

We see the onco on 26th Feb and expect to start the chemo journey, even though we had said we didn’t want to go down that route. Our oncologist has said he doesn’t think further HT will work at the moment but hopes that chemo will kick start the HT again and maybe it will be available to us afterwards.

Funny to think of you on your scooter!

Beep beep.

Devonmaid

User
Posted 30 Jan 2018 at 20:06

Originally Posted by: Online Community Member

Funny to think of you on your scooter!

Beep beep. 

 

You made me laugh! Paul scooting on his scooter with a camera, your John with his stick and a new dog, my John with 2 sticks and his binoculars - it's like 'Last of the Summer Wine' or Crossroads but I am not sure which :-/ 

 

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

User
Posted 31 Jan 2018 at 20:46

I just received the medical notes from my last meeting and onco confirms there that because there has been good clinical impact he would continue enzalutimide over the baseline, though is careful not to say how far. But I think zometa with the steroid increase is part of a package to try and hold the PSA so enzalutimide can continue to be prescribed.

The scooter helps so much though as the weather improves I hope to use it more and more. Its good for off roading so hoping to revisit some of my favourite walking places this summer.

I assume Allison radium 223 has not worked which is such a shame. Chemo and radium are my only options after enzalutimide so I follow your journey with much interest.

Edited by member 31 Jan 2018 at 20:46  | Reason: Not specified

User
Posted 31 Jan 2018 at 22:54

Enjoy the sunshine (when it arrives) trundling along on your chariot !!

We can't control the winds - but we can adjust our sails
User
Posted 31 Jan 2018 at 23:07

Really do hope you can get out and enjoy yourself as soon as the weather gets a bit warmer.

User
Posted 20 Feb 2018 at 15:58

Well latest appointment and the results are not too bad. My PSA has risen but not too much upto 12.96, now over the baseline, but enzalutimide treatment to continue for now. Have been offered radiotherapy if I want it in 3 weeks time if pain on the leg does not improve. I had terrible pain at the weekend and needed heavy duty painkillers to help but as before it has begun to recede. So appointment in three weeks for RT if I need it. Started my new Zometa infusion designed to strengthen my bones and ought to help the PSA but I go through all this again in four weeks time. Onco keen to see if combination can arrest PSA rises which remain small but unremitting. At some point I believe if no improvement emerges then may conclude enzalutimide days are numbered. I guess the leg pain confirms the cancer is active if somewhat uneveningly. So although I got a continuance it’s only for 4 weeks and uncertainties about the future remain,

User
Posted 20 Feb 2018 at 18:43

Glad to hear the pain is subsiding Paul. Is it worth requesting a scan before RT to make sure the leg pain is not something else.

Bri

User
Posted 20 Feb 2018 at 19:15

I have something in the back of my mind about bone pain when Zometa starts ... I hope it is something as simple as that. Worth looking back at Alathays' old posts perhaps?

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

User
Posted 20 Feb 2018 at 21:13

Bri I had a CT scan and they are pretty sure it’s the metatastes causing problems.

The zometa Lyn cannot have caused this pain as only started it today but I have read about bone pain after first infusion. Be just what I want after last weekend’s pain.

User
Posted 22 Feb 2018 at 14:04

Wow hope this was a one off. 24 hours after zometa infusion, tumour flare and fever-like symptoms. Been a rough 36 hours just beginning to get over it, I think.

User
Posted 22 Feb 2018 at 14:36

Stick with it Paul. I’m hoping things settle down for you !

User
Posted 22 Feb 2018 at 15:15

Sorry to read the latest Paul. Hope it all settles soon

We can't control the winds - but we can adjust our sails
User
Posted 20 Mar 2018 at 15:43

4 weeks on and time for an update. On Friday I had radiotherapy on my troublesome left leg pain and though it has been sore hopefully over the next few weeks it will help.

So today off to my oncologist and I can report that the cocktail of treatments to keep me on enzalutimide has had a glimmer of hope. My PSA has gone down by 0.07 to 12.79. In itself nothing special but it’s stopped it’s slow rise for the first time in 7/8 months and hopefully may start to go down. Oncologist confirmed that he is committed to keeping me on enzalutimide for the time being which feels very supportive. Also my ALP figure down to 129 so hopefully the zometa is helping.

So on to the second infusion of zometa and now home hoping I don’t have the bad reaction I did the first time.

Five hour stint today but despite feeling tired it feels a little bit of good news.

User
Posted 20 Mar 2018 at 15:55

That does seem good news Paul and long may it last. I did a five hour stint yesterday myself. Attending hospital flattens your mood mostly. Good luck with your fight

User
Posted 20 Mar 2018 at 16:34

Thanks Chris. On the five hour stint, it felt absolutely fine. When you think of the people involved in your care during that time from my oncologist through to the volunteer making cups of tea in the chemo suite people work so hard to make your time go well. So you take a book or in my case my iPad and get on with it. Same happened at radiotherapy on Thursday/Friday people caring about you. I certainly get my money’s worth from the NHS.

User
Posted 20 Mar 2018 at 18:40

Good to hear you had a positive consultation and outcome Paul.
Hoping you don’t have any adverse reaction to the Zometa

Bri

 
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