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Enzalutamide not working...what's next?

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User
Posted 11 Apr 2015 at 04:57

Diagnosed a year and a half ago with Gleason 10, I've become resistant to hormone therapy after 8 months, had 10 cycles of docetaxel which I assume have done nothing as psa continued going up and I was put straight onto Enzalutamide. Oncologist says that, after 2 or 3 months of this, it doesn't seem to be working. Is there anyone in this position, very worrying, as options are running out? I am having radiotherapy over 5 days this week to the tumour in the hip area which is giving me pain. 

User
Posted 11 Apr 2015 at 17:55
Have you asked to try abiraterone?

I know there is the complication of whether you can have it after Enzi, but if that has not worked.....I would ask.

Alison x

User
Posted 11 Apr 2015 at 18:06

If the cancer is active which it sounds as if it is, isn't alpharin (radium-223?) the one that is tried at such times? Not an expert but sure I have read about this only working when the cancer is active?

User
Posted 11 Apr 2015 at 18:36

Allybally, don't assume the chemo didn't work just because the PSA went up. Sometimes this does seem to happen but the chemo damages the cancer cells in a way that means treatments that had stopped working might then be worth a second try. In your shoes, I would ask the onco about abiraterone and Radium 223 and see what response you get.

Edited by member 11 Apr 2015 at 21:20  | Reason: Not specified

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

User
Posted 12 Apr 2015 at 21:43
Hi Allybally

So sorry to hear of the apparent failure of the current set of treatment, might I mention one other, stillbestrill, an old hormone treatment, which my husband has been in for over 18 months with great success. Frankly, it might be worth a go, often older treatments can be effective but are overlooked in favour of the newer ones. My husband is. Gleason 10 too but has done well so far.

Kindest regards

Allison

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User
Posted 11 Apr 2015 at 17:55
Have you asked to try abiraterone?

I know there is the complication of whether you can have it after Enzi, but if that has not worked.....I would ask.

Alison x

User
Posted 11 Apr 2015 at 18:06

If the cancer is active which it sounds as if it is, isn't alpharin (radium-223?) the one that is tried at such times? Not an expert but sure I have read about this only working when the cancer is active?

User
Posted 11 Apr 2015 at 18:36

Allybally, don't assume the chemo didn't work just because the PSA went up. Sometimes this does seem to happen but the chemo damages the cancer cells in a way that means treatments that had stopped working might then be worth a second try. In your shoes, I would ask the onco about abiraterone and Radium 223 and see what response you get.

Edited by member 11 Apr 2015 at 21:20  | Reason: Not specified

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

User
Posted 12 Apr 2015 at 06:55

Alison, Yorkhull and Lyn, thanks for your replies, good to know that there are still possibilities out there after Enzalutamide.

User
Posted 12 Apr 2015 at 21:43
Hi Allybally

So sorry to hear of the apparent failure of the current set of treatment, might I mention one other, stillbestrill, an old hormone treatment, which my husband has been in for over 18 months with great success. Frankly, it might be worth a go, often older treatments can be effective but are overlooked in favour of the newer ones. My husband is. Gleason 10 too but has done well so far.

Kindest regards

Allison

User
Posted 21 May 2015 at 06:46

Thanks Devonmaid...I recently saw a locum oncologist as my usual one is on holiday and he has suggested abiraterone or stillbestrill with a leaning towards the latter. I had never heard of this one so hopefully it can help in some way. He has also suggested that I take a break from treatment for the time being as I have been on the various treatments since diagnosis in August 2013.

User
Posted 21 May 2015 at 08:25
Allybally

The suggestion to try Abiraterone or Sillbestril seems like a good idea. There is a lot of discussion on this forum about NHS clinicians being prevented from prescribing Abiraterone after Enzalutamide has failed. As Allison (Devonmaid) has said previously Sillbestril works well for some men so must be worth trying?

I am a little surprised the locum oncologist suggested a break from all treatment as it sounds like your cancer is quite active. He might be thinking that quality of life may be better for a while if you have a little time out. The trouble is balancing that against trying to keep the cancer under some control.

If you have another appointment in the next week or so I would ask the oncologist to explain his rationale and then either ask for a prescription for treatment or take the break suggested whichever you feel is best for you.

If you do not have an appointment I would call the oncologist ' s secretary and ask for a phone consult to get things moving.

Best wishes

Xx

Mo

 
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