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Enzalutamide no longer working

User
Posted 25 Nov 2015 at 16:07

Hi, just an update.

 

Hubby has been on Enzalutamide 74 weeks and the magic beans are no more. PSA trebled since 30/9, now 28.4. Offered choice of Cabazitaxel or Radium 223 but need to rule out soft tissue spread for Radium 223. As the last CT scan picked up 2 nodules in the lungs a new scan is booked for w/c 21/12 to check and see if they have grown. If they haven't they are not cancerous, if they have then they are. If they are cancerous then Radium 223 will not be an option.

 

The next Oncology appointment will be 6th Jan so to get us to this date the Oncologist has added steroids to Enzalutamide as a short term measure to help hold back any more PSA increase, then in Jan it's either Chemo or Radium.

 

Bit of a knock back to say the least, but we battle on!

 

Glen

User
Posted 25 Nov 2015 at 18:16

I'm sorry to hear this Glen. As you know I'm on the same path as Hubby, the main difference in our treatments is I haven't had any form of Chemo yet. I've prepared a list of questions for when the day arrives that the magic beans are no longer working for me. I list them below in case they may be of help to you. One thing you need to know in assessing the questions I will be asking my Onco is that from the point of diagnosis I stated that I prioritise quality of life over quantity of life. Best wishes. David.

Questions for when Enzalutamide ceases to be effective

Are there any other treatments left apart from chemo?

· Stilboestrol (oestrogen)?

· Abiraterone (I know the CDF ruling is one of Abiraterone or Enzalutamide, but not both. If you could prescribe it, would you do so? If so, we’d consider funding it ourselves).

· Radiotherapy?

· Radium 223 (I have the impression that this is the last throw of the dice after chemo has failed)?

· Immunotherapy trial (PROSPECT)/other trials ???

If Yes, discuss those treatments and put this paper to one side.

If No, continue.

1. Prostate cancer (PCa) kicked aside my first two defence lines (Zoladex and Bicalutamide) without breaking sweat. Enzalutamide held it up for n months. Is chemo likely to prove any more effective a defence?

2. PCa Chemo treatment takes seven months. Obviously it affects quality of life (QOL). The table below shows some measures of what quality of life means to me together with what I think (I may be wrong) will be adversely affected or not.

Measure of QOL Affected or not? Result
Enjoy a pint of real beer Affected Chemo messes with the sense of taste
Enjoy a glass of good wine Affected Ditto
Enjoy an excellent meal Affected Ditto
Take a plane journey Affected A plane journey is a sure fire way of picking up a respiratory disease
Have a workout in the gym Don’t know May be OK if care taken to sanitise equipment used
Walk the coastal path from Budleigh to Exmouth Not affected Should be OK on the ‘good’ days
Partake in a good conversation Not affected OK
Play a game of croquet Probably not affected Probably OK on the ‘good’ days provided I don’t play someone with a cold/flu

3. I haven’t learnt much about Chemo but I have the impression that assuming it works then once the 7 month course is over you get a couple (?) of months before the PSA takes off again. Then it’s time to start another course of Chemo, which may or may not work as effectively as last time. Eventually the Chemo will cease to work. After how many cycles typically?

4. How and when will we know whether the treatment is working?

5. How will we know when it stops working?

6. What would your advice to your husband be if he were in my position?

7. Typically, how long after a course of Chemo before the sense of taste returns?

8. If I turn down Chemo and opt for palliative care how long is it likely to be before I start to deteriorate and how long from there until death?

9. If I go the Chemo route, once it ceases to be effective, how long is it likely to be before I start to deteriorate and how long from there until death?

User
Posted 25 Nov 2015 at 20:08

Hi Glen
I'm sorry to hear that the enzalutamide seems to be becoming less effective.
I hope that the addition of steroids will help to hold it down.

I'm afraid Theres not a lot I can advise you on as I'm still on enzalutamide which I started about 46 weeks ago and so far it's still working.
I take this together with Prostap. I used to also take Abiraterone but it gave me a lot of bother with my bowel movements. I'm still on Stampede Trial J. My next onco visit is January 11.

Is you Hubby still monitored by the Stampede Team?
I often wonder if they do continue to give support as things change.

I wish you well and hope the psa readings are still good in January

Paul

User
Posted 07 Jan 2016 at 14:17

A mixed picture then. Sorry to hear your enzo journey is at an end though 80 weeks sounds quite good. I start my enzo journey very soon. My oncos were involved in the trials for radium 223 and talk very highly of it though it works best I think when the cancer is active. Hope you get on it and you get some relief.

Glad to hear no further spread on the scans though. Good luck.

User
Posted 07 Jan 2016 at 20:19
Hi Glen,

Always worrying and stressful when changing course of treatment, empathise with you. I don't know much about radium 223. It's reassurring to see it may be a possible option following your previous courses of treatment.Hope your hubby is accepted to have it.

Look forward to following your new thread on the radium.

Lesley x

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User
Posted 25 Nov 2015 at 18:16

I'm sorry to hear this Glen. As you know I'm on the same path as Hubby, the main difference in our treatments is I haven't had any form of Chemo yet. I've prepared a list of questions for when the day arrives that the magic beans are no longer working for me. I list them below in case they may be of help to you. One thing you need to know in assessing the questions I will be asking my Onco is that from the point of diagnosis I stated that I prioritise quality of life over quantity of life. Best wishes. David.

Questions for when Enzalutamide ceases to be effective

Are there any other treatments left apart from chemo?

· Stilboestrol (oestrogen)?

· Abiraterone (I know the CDF ruling is one of Abiraterone or Enzalutamide, but not both. If you could prescribe it, would you do so? If so, we’d consider funding it ourselves).

· Radiotherapy?

· Radium 223 (I have the impression that this is the last throw of the dice after chemo has failed)?

· Immunotherapy trial (PROSPECT)/other trials ???

If Yes, discuss those treatments and put this paper to one side.

If No, continue.

1. Prostate cancer (PCa) kicked aside my first two defence lines (Zoladex and Bicalutamide) without breaking sweat. Enzalutamide held it up for n months. Is chemo likely to prove any more effective a defence?

2. PCa Chemo treatment takes seven months. Obviously it affects quality of life (QOL). The table below shows some measures of what quality of life means to me together with what I think (I may be wrong) will be adversely affected or not.

Measure of QOL Affected or not? Result
Enjoy a pint of real beer Affected Chemo messes with the sense of taste
Enjoy a glass of good wine Affected Ditto
Enjoy an excellent meal Affected Ditto
Take a plane journey Affected A plane journey is a sure fire way of picking up a respiratory disease
Have a workout in the gym Don’t know May be OK if care taken to sanitise equipment used
Walk the coastal path from Budleigh to Exmouth Not affected Should be OK on the ‘good’ days
Partake in a good conversation Not affected OK
Play a game of croquet Probably not affected Probably OK on the ‘good’ days provided I don’t play someone with a cold/flu

3. I haven’t learnt much about Chemo but I have the impression that assuming it works then once the 7 month course is over you get a couple (?) of months before the PSA takes off again. Then it’s time to start another course of Chemo, which may or may not work as effectively as last time. Eventually the Chemo will cease to work. After how many cycles typically?

4. How and when will we know whether the treatment is working?

5. How will we know when it stops working?

6. What would your advice to your husband be if he were in my position?

7. Typically, how long after a course of Chemo before the sense of taste returns?

8. If I turn down Chemo and opt for palliative care how long is it likely to be before I start to deteriorate and how long from there until death?

9. If I go the Chemo route, once it ceases to be effective, how long is it likely to be before I start to deteriorate and how long from there until death?

User
Posted 25 Nov 2015 at 20:08

Hi Glen
I'm sorry to hear that the enzalutamide seems to be becoming less effective.
I hope that the addition of steroids will help to hold it down.

I'm afraid Theres not a lot I can advise you on as I'm still on enzalutamide which I started about 46 weeks ago and so far it's still working.
I take this together with Prostap. I used to also take Abiraterone but it gave me a lot of bother with my bowel movements. I'm still on Stampede Trial J. My next onco visit is January 11.

Is you Hubby still monitored by the Stampede Team?
I often wonder if they do continue to give support as things change.

I wish you well and hope the psa readings are still good in January

Paul

User
Posted 26 Nov 2015 at 08:00

Thanks both so much for your comments and information, much appreciated.

 

Yes, he's still on Stampede and is monitored just as well as ever, that is the one positive. The team are very positive and want to give him as many options as possible, hence the scan to rule in or out Radium 223.

 

I'll keep you posted.

 

Thanks

 

Glen

User
Posted 07 Jan 2016 at 13:08

Further update following appointment on 6/1/16.

PSA doubled again and now 59, haemoglobin 9.9, 80 weeks complete on Enzalutamide. No further spread to bones and further CT scan confirms no spread to soft tissue as nodules in lungs look stable. Now referred to be assessed for suitability for Radium 223 . Taken off Enzalutamide and steroids pending appointment.

Unfortunately it appears that he has to also be in pain to 'qualify' for Radium 223. If he hadn't been on steroids he would have been! Oh well, off these now!

Glen

 

Edited by member 07 Jan 2016 at 13:09  | Reason: Not specified

User
Posted 07 Jan 2016 at 14:17

A mixed picture then. Sorry to hear your enzo journey is at an end though 80 weeks sounds quite good. I start my enzo journey very soon. My oncos were involved in the trials for radium 223 and talk very highly of it though it works best I think when the cancer is active. Hope you get on it and you get some relief.

Glad to hear no further spread on the scans though. Good luck.

User
Posted 07 Jan 2016 at 18:44

Good luck on Enzo, hope you get as good a run as my OH! I think he's ideal for Radium 223 and as PSA increasing in strides it should be the best treatment - it's getting through the red tape! I'll start a new thread when we know next course of treatment. it's a hard slog!

User
Posted 07 Jan 2016 at 20:19
Hi Glen,

Always worrying and stressful when changing course of treatment, empathise with you. I don't know much about radium 223. It's reassurring to see it may be a possible option following your previous courses of treatment.Hope your hubby is accepted to have it.

Look forward to following your new thread on the radium.

Lesley x

User
Posted 24 Jan 2016 at 00:45

Hello Glen
I'm just wondering whether your Husband got onto the Radium 223 treatment through your Stampede team and that all is going ok.
I'm now 54 weeks on Enzalutamide and so far so good but do wonder what comes next.

All the best
Paul

User
Posted 26 Jan 2016 at 18:47
Hi

Apointment to be assessed for radium is on 5/2 not as quick as we would like! Will start posting after that hopefully he will be accepted.

Glad you are doing well on magic beans!

Glen

 
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