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Enzalutimide stopped too soon??

Posted 27 Dec 2018 at 00:05

Hi all,

It has been a while since I last posted, however I have been following all and would like to wish everyone all the best for the festive season and forthcoming new year!

I am hoping for members to share experiences if relevant. My father commenced treatment with enzalutamide 1 year ago. (following 6 cycles of docetaxel, gleason 9 APCa) Around June this year his dose was dropped from the 4 tablets to 3 tablets daily to minimise his side effects of fatigue.  He tolerated the medication very well and symptoms appeared to be under control.  His PSA has remained stable at around 7 at each blood test and all in all appears to be in good health (considering), a definite improvement in general health and well being.  Last month he was seen by a new oncologist, who reported on latest scan results taken in October.  Results given were, PSA still remains around the same, hot spots at diagnosis found in pelvic bones are no longer visible, however, 2 lymph nodes behind the stomach (which were enlarged) have increased in size slightly to an extant where they believe it is the PCa and not due to infection.  At this point the oncologist ceased the use of enzalutamide indicating it is no longer working and has prescribed 10 course of cabazitaxel due to commence in a few weeks time. 

My father has now been without enzalutamide for around 4 weeks and doesn't start cabazitaxel for another 3 weeks.  since stopping enzalutamide there has been an obvious change in his wellbeing, symptoms of discomfort have recurred, increased fatigue and nausea also and he is feeling slightly more unwell.

I guess my question is, from individuals experience, is it possible that the oncologist has made a knee jerk reaction to changes to 2 lymph nodes when other signs, symptoms and reduction in hot spots were indicated by taking him off enzalutamide. Personally I feel it was having a definite benefit, and why remove the drug, yet wait 6-7 weeks to commence chemo.  My father is one not to argue with a professional advice, however I can't help but feel this decision is hasty and that the enzalutamide has been removed too soon, when was providing a benefit.

I hope my waffle makes sense and as always I appreciate any shared stories regarding treatment people have to offer.

Regards to all


Posted 27 Dec 2018 at 01:13
On the face of it, this seems a strange decision by the oncologist. Were you at the appointment? Is it possible that you don’t have all the information? Could it be that your dad asked to stop due to the side effects? Or that the lymph nodes have enlarged significantly more than you have been led to believe?

The onco has in all likelihood written to dad’s GP with a summary of the appointment and treatment changes - you could ask your dad to request a copy of the letter from the GP practice. Alternatively, with your dad’s permission, his clinical nurse may be able to give you more information and / or explanation.

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

Posted 27 Dec 2018 at 01:22

Hi Lynn, 

Yes I attended the appointment and the only real change highlighted to us was that 2 lymph nodes had shown an increase to an extent where they could rule out infection etc. However, other initial hotpots had gone?!  He never asked to be taken off the enzalutimide since dropping to 3 tablets daily fatigue was never really a big problem. I also asked if he is having cabazitaxel now will it still be available as gain down the line if my dad tolerates it well and it has a positive effect. The oncologist said no. My dad is relatively young and apart from PCa is in good health. I'm aware some members have received treatments more than once if tolerated well and achieved good results. Let's just say I left with my confidence of the Consultation in question. I think calling his nurse may be a good initial step

Posted 27 Dec 2018 at 14:17
I would - dad might have to give him / her permission to speak to you. Personally, I would want to see the letter to GP as well, as that will be factual.

If still concerned, you could try to encourage dad to ask for a second opinion from another oncologist. Once enza has been stopped, NICE guidelines say it cannot be prescribed a second time but if he tolerates chemo well, there is no clinical reason why he wouldn't be allowed to repeat this. Some men on here have had a number of courses of chemo.

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

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