I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

AFTER ENZALUTAMIDE

Email this conversation Print this conversation

User

Posted 01 Feb 2020 at 18:23

I WAS INITIALLY T3a N1 M1 GLEASON 5+4 PSA 15.7

JOINED THE STAMPEDE TRIAL IN JAN 2010 DOCETAXEL + ZOLEDRONIC ACID

PROSTAP 3 FROM THE BEGINNING TILL NOW EVERY THREE MONTHS

CASODEX (18 MONTHS) , DEXAMETHASONE (36 MONTHS) AND ENZALUTAMIDE (9MONTHS)

I HAVE BEEN TOLD THAT AFTER ENZALUTAMIDE STOPS WORKING IT PROBABLY WILL BE CHEMO AGAIN,

WHICH I DO NOT FANCY. IT IS PROBABLY END OF THE ROAD!!

I WILL BE PLEASED TO HEAR FROM ANYONE EXPERIENCE AND TREATMENT BEYOND THIS STAGE

THANK YOU

User

Posted 01 Feb 2020 at 20:47

There isn't really much else after Enza - 6 rounds of Radium 223 may be a possibility if you have bone mets but it only treats the bone and not the rest of the tumours. Instead of Docetaxel, they might suggest cabazitaxel - some men tolerate this better that docetaxel and some find it worse but at least you can try it and stop if the side effects are too much. There is also stilboestrol - an oestrogen which although an old fashioned treatment still works amazingly well for some men.

10 years with such a dire diagnosis is amazing though - the trial certainly worked for you!

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

User

Posted 01 Feb 2020 at 21:33

Thanks LynEyre.

My last bone scan about an year ago did not show any cancer in the bones. Cancer only in one node then.

I have had a very active life during the ten years of treatment.I was 63 when I first started treatment and now I am 73. At the start I was playing competetive squash & Cricket had to stop because of an arthritic shoulder. Now I play Table tennis and go in the gym. Just done two all inclusive cruises with lot of drinking and dancing which I like.

I have just read in this forum where someone has had RT .

after it has broken out of the capsule.

It is all confusing to me.

Can you or anyone throw some light on the matter.

Thank you

User

Posted 01 Feb 2020 at 22:05

RT is possible if you have a T3 where only lymph nodes close to the prostate are affected. With a diagnosis of N1 M1 it seems your affected lymph node is distant from the prostate so pelvic RT wouldn’t solve the problem and it seems your oncologist has already ruled it out. If not bone mets, can you remember why you were originally diagnosed as M1 - where was the spread?

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

User

Posted 01 Feb 2020 at 22:46

10 years ago there was a 10 x 10mm lesion on the left pubic bone. It was not there during the last scan an year ago.
Also at that time there was an abnormal Node on the left Pelvic side wall.(Feb 2010)

The scan in Feb 2019 showed one enlarged left external iliac lymph node measuring 13mm & no bone evidence of skeletal metastasis.
The PSA was 11.1 . At present the PSA is 2.0

User

Posted 01 Feb 2020 at 23:05

The size of the node on the Pelvic side wall was 1cm in 2010, The PSA was 15.7 in 2010.

User

Posted 02 Feb 2020 at 06:42

If you have never had any radio therapy I would ask why they can't treat the node at least

User

Posted 03 Feb 2020 at 10:34

I was of the opinion treatment is always for the entire affected area. If you leave some behind that will go on spreading

Radiotherapy in the latter stages is only given palliative.

Des anyone how long ENZALUTAMIDE Is generally effective?

User

Posted 03 Feb 2020 at 11:53

In answer to your Enzalutimide question I was on it for almost 1 year but it varies ,there is someone on this forum been on it for years.good luck Geoff

User

Posted 03 Feb 2020 at 14:10

Thanks Geoff,

Any Idea where abouts in the forum I could find this gentleman.

I just like to have a look at his profile

Noel

User

Posted 03 Feb 2020 at 21:49

Hy Noel I think it was Healy. Geoff

User

Posted 04 Feb 2020 at 01:35

Thanks Geoff

Edited by member 04 Feb 2020 at 13:11 | Reason: Not specified

User

Posted 04 Feb 2020 at 19:15

Hi Noel
Yes I've been on enzalutamide together with prostap for just over 5 years now.
I started with a psa of 199/235 and over the last 5 years it's been down around .05.
I'm still on the Stampede Trial J and am monitored every 3 months.
It seems to work for me.
I did change my diet and I used to run a bit but Nowadays I just tend to swim and hike a bit.
If I can help at all please let me know

Best of luck

Paul

User

Posted 05 Feb 2020 at 01:29

Hi Paul,

Thanks for the swift reply and offer to help.
Had my first jab of PROSTAP3 in FEB 2010 when I was 63 and PSA was 15.7 & T3aN1M1.
I was in Arm E of Stampede with DOCETAXEL & ZOLIDRONIC ACID, along with PROSTAP 3, from May 2010.
Have been discharged from the trial because the trial results were published some time ago. my PSA went down to 0.2 Aug 2010and
then rose upto 6.0 by Sep 2014. Started taking 50mg of Casodex at this point along with the PROSTAP 3. PSA down to 0.8 Feb 15 and then rose slowly to 5.5 by JUL 2016. Started taking steroid Dexmethasone 0.5mg instead of CASODEX Jul 2016. PSA went down to 3.9 May 2017 and then up again to 15.2 in MAR 2019. Since then I am on ENZALUTAMIDE PSA now down to 1.9 FEB 2020.

During my early years of treatment I continued with my League Cricket and Squash. Then I developed Arthritis in my shoulder, so now I am only playing League TT. Over the last year I have started to go to the gym. I have not had any side effects apart from gaining weight. In the last six months I have managed to lose all the the weight I had gained and back to the same weight when treatment started.However I am gradually getting tired and weaker since I started ENZA.

I like drinking and dancing and playing with my four grand children. Just been on a cruise with my wife from Xmas to New year ,
where there was plenty of merriment.

Reading your profile and some others I am pleasantly surprised to see the PSA down to Undetectable levels. I am wondering if it is because on ARM J they gave ABI & ENZA. Must thank my stars for having high quality life for the last ten years with the treatment.
Your detailed profile was very encouraging. I am starting to look at what treatment is available beyond ENZA.

You can contact me any time you wish.

Cheers

Noel

User

Posted 24 Mar 2020 at 13:17

Hi Paul,

I am happy to see you have been on the ENZU for 55 months. Interested to know what is your general daily diet?

I have porridge in the morning with Soya milk every day. Brockeley, green tea , fish, chicken not on a regular

basis. Also eat red meat at the same regularity. I drink wine Must be doing something right to have survived over ten years without any side effects. Of course I exercise lightly. I have been on ENZU for 12 months now , PSA steady at 2.0. Please give me a general idea of the food intake.

Thank you

Noel

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.