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Next steps after a Radium 223

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User
Posted 06 Dec 2017 at 08:05
Hi all

After a long journey with advanced cancer and four courses of Radium 223, my husband’s PSA is now 77 and we are wondering when a new treatment should be added. He is doing well all things considered and we are very grateful for the way the medics have managed his cancer for the last seven years but are getting concerned about the rising PSA. We know that Radium treatment doesn’t affect PSA and are wondering where it’s coming from.

He hasn’t had chemo or abiraterone or enzalutimide yet so still have tools in the box. The medics said yesterday that they consider the three month doubling time, but which three months? You could look at any three months here and find utterly different doubling times, some nearly, some tripling, some just doubling. They also said that they are used to PSAs in the thousands so maybe that’s why they aren’t that bothered about us.

I’m not sure what to do, make a fuss or wait it out until January and seeing our own oncologist. Any thought my friends?

Devonmaid

User
Posted 06 Dec 2017 at 17:00

Can't help DM but don't want you disappearing down the list so hence my unhelpful reply. Take care

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 06 Dec 2017 at 22:14
DM

Good luck for tomorrow, I hope you get some answers from your onco.

Thanks Chris

User
Posted 06 Dec 2017 at 22:17
Oh DM ,

Bang that drum get on your largest soap box that is a pretty large increase in Johns PSA . You Go Girl , shout until you are heard yes the Raduim doesn’t have an affect on PSA it only reduces uptake in the bone but a rising PSA means the cancer is active somewhere else and you have lots of tools still left in the box , it’s time to get The armoury into action.

Thinking of you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Dec 2017 at 22:20

Hi Devonmaid

I have no idea what the medical advice should be but with hindsight I think that making a fuss wins hands down every time! Regardless of the outcome you then know that you didn't leave anything to chance - no 'what ifs' to addle your brain further down the line. So I'd say go for it! And you always have your onco in January as back-up.

(And I've just seen Julie's post, so that's definite then!)

Ruth

x

User
Posted 07 Dec 2017 at 01:09
Hi DM,

Just wanted you wish both of you Good Luck for your onco meeting tomorrow.

Steve xx

User
Posted 07 Dec 2017 at 08:57
Thinking of you both today and hope that the meeting goes well for you.

Kevan

User
Posted 07 Dec 2017 at 11:55
Hi DM, just wanted you to know I am thinking of you both today, Ian,

Ido4

User
Posted 07 Dec 2017 at 23:58

I would shout as loud as I could you have nothing to lose. But either way I hope you get the answers you are looking for DM. As you say plenty left in the armoury yet but let them know you are there

Take care
Bri xx

User
Posted 08 Dec 2017 at 08:16

Hello Devonmaid

I agree with the other posts - make a fuss. In life, we always almost always regret what we didn't do rather than what we did.
Thinking of you both.

User
Posted 08 Dec 2017 at 11:30

Hi Allison, the PSA dilemma, is it relevant, isn’t it relevant, what is high, what is doubling makes us all go through such hoops. We have always been on similar paths in this journey though I went with enzalutimide rather than radium 223 or chemo they remain in the box. In terms of PSA numbers I am told that if my PSA rises to 11.98 the starting point for the enzalutimide treatment then this will lead to them stopping. Yet I had gone upto 59 on previously regimes. For me I think money and protocols come into this as much as clinician judgment. I had a good conversation with my onco last time when he confirmed decisions about enzalutimide would be both clinical, PSA and how I feel but we will see what drives any change. I shall see next week.

So if you have a god relationship with your onco try and get to see him/her and discuss your dilemma. I am not a shouty sort of person and I find I get quite far just engaging them in the conversation. If JOHN feels well that’s as important an indicator as anything, but if Christmas gets spoilt through wondering get a call into the onco. Thinking of you both.

User
Posted 08 Dec 2017 at 18:12

Hi Allison,
Yes I think I would shout but not a really loud shout as Paul above says
I hope your John is well , always thinking of you both
Barry

User
Posted 10 Dec 2017 at 16:44

Hi DM, That sounds like your private consult has been well worth it. Sorry to hear John is in pain and has the blues. Like you said I certainly totally get that. It's difficult for everyone dealing with all the stuff we have to face. 

Good news about the job, freeing you up a bit more and getting off the hamster wheel a bit.

Sending positive thoughts, Ian.

Ido4

User
Posted 11 Dec 2017 at 06:41

Hi DM,

Glad to hear that paying out a few bob has done the trick,

lets hope things improve for John/

Barry

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User
Posted 06 Dec 2017 at 17:00

Can't help DM but don't want you disappearing down the list so hence my unhelpful reply. Take care

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 06 Dec 2017 at 21:18
Thanks Sandra

I don’t suppose there’s much anyone can say really, we are off to see the urologist tomorrow and will wave the bloods under his nose and see what he thinks. I guess it’s true what they say about PSA only being relevant in the early days. ALP is low so that matters more really.

Lots of love

Devonmaid xx

User
Posted 06 Dec 2017 at 22:14
DM

Good luck for tomorrow, I hope you get some answers from your onco.

Thanks Chris

User
Posted 06 Dec 2017 at 22:17
Oh DM ,

Bang that drum get on your largest soap box that is a pretty large increase in Johns PSA . You Go Girl , shout until you are heard yes the Raduim doesn’t have an affect on PSA it only reduces uptake in the bone but a rising PSA means the cancer is active somewhere else and you have lots of tools still left in the box , it’s time to get The armoury into action.

Thinking of you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Dec 2017 at 22:20

Hi Devonmaid

I have no idea what the medical advice should be but with hindsight I think that making a fuss wins hands down every time! Regardless of the outcome you then know that you didn't leave anything to chance - no 'what ifs' to addle your brain further down the line. So I'd say go for it! And you always have your onco in January as back-up.

(And I've just seen Julie's post, so that's definite then!)

Ruth

x

User
Posted 07 Dec 2017 at 01:09
Hi DM,

Just wanted you wish both of you Good Luck for your onco meeting tomorrow.

Steve xx

User
Posted 07 Dec 2017 at 08:57
Thinking of you both today and hope that the meeting goes well for you.

Kevan

User
Posted 07 Dec 2017 at 11:55
Hi DM, just wanted you to know I am thinking of you both today, Ian,

Ido4

User
Posted 07 Dec 2017 at 23:58

I would shout as loud as I could you have nothing to lose. But either way I hope you get the answers you are looking for DM. As you say plenty left in the armoury yet but let them know you are there

Take care
Bri xx

User
Posted 08 Dec 2017 at 08:16

Hello Devonmaid

I agree with the other posts - make a fuss. In life, we always almost always regret what we didn't do rather than what we did.
Thinking of you both.

User
Posted 08 Dec 2017 at 11:30

Hi Allison, the PSA dilemma, is it relevant, isn’t it relevant, what is high, what is doubling makes us all go through such hoops. We have always been on similar paths in this journey though I went with enzalutimide rather than radium 223 or chemo they remain in the box. In terms of PSA numbers I am told that if my PSA rises to 11.98 the starting point for the enzalutimide treatment then this will lead to them stopping. Yet I had gone upto 59 on previously regimes. For me I think money and protocols come into this as much as clinician judgment. I had a good conversation with my onco last time when he confirmed decisions about enzalutimide would be both clinical, PSA and how I feel but we will see what drives any change. I shall see next week.

So if you have a god relationship with your onco try and get to see him/her and discuss your dilemma. I am not a shouty sort of person and I find I get quite far just engaging them in the conversation. If JOHN feels well that’s as important an indicator as anything, but if Christmas gets spoilt through wondering get a call into the onco. Thinking of you both.

User
Posted 08 Dec 2017 at 18:12

Hi Allison,
Yes I think I would shout but not a really loud shout as Paul above says
I hope your John is well , always thinking of you both
Barry

User
Posted 10 Dec 2017 at 11:11
Hi all

Well we saw the urologist privately, because of the SPC and kidney issues and it’s worth the money because he immediately phoned our onco (we’ve been transferred to Oxford from Swindon for the duration of the Radium) and he said that John is on his radar for a January appointment and will be discussed in the MDT in Swindon (which our urologist attends) next Thursday). Our concern was that our last Radium is 12th January and then we might disappear down a hole as we get transferred back to Swindon and how long it might take to get a further onco appointment here. Anyway, I don’t think we need to worry about that too much now. Our oncologist did tell us that the Radium does cause a lot of inflammation and that does cause the PSA to rise, so that was new information for us and that helped the anxiety a lot. John does have increased pain in his hips, so that’s a worry, and he’s been generally unwell this month, cold, hideous cough etc, but hoping that will improve. He also has the dreadful cancer blues, and has been hard to live with. I’m sure you guys get that.

So we will wait patiently and be grateful for the current treatment and wonder what’s next. Whatever it is, it will be next year. I’m quite relieved about that If I’m honest. Let’s hope we get a peaceful New Year this year, it’s often been our nemesis in the past!

On the good news front, I’ve left my job and am applying for carers allowance but have also managed to get a two day a week job (it’ll take a few months before I can start for security reasons, nuff said). It’s perfect as the days can be to suit. I’m relieved to be out of corporate work.

Cheers

Devonmaid xxx

User
Posted 10 Dec 2017 at 16:44

Hi DM, That sounds like your private consult has been well worth it. Sorry to hear John is in pain and has the blues. Like you said I certainly totally get that. It's difficult for everyone dealing with all the stuff we have to face. 

Good news about the job, freeing you up a bit more and getting off the hamster wheel a bit.

Sending positive thoughts, Ian.

Ido4

User
Posted 11 Dec 2017 at 06:41

Hi DM,

Glad to hear that paying out a few bob has done the trick,

lets hope things improve for John/

Barry

 
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