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Possible Enzalutamide treatment

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User

Posted 17 Jul 2020 at 15:18

Thanks Chris,

Long time since we exchanged anything, hope your keeping safe.

User

Posted 18 Jul 2020 at 00:13

Hi Sandy

Just reading your posts and I am sorry to hear your news. I have discovered very quickly that the consultants give you their best estimate but for some that ends up being longer and for others not.

My OH finished chemo in February and then 4 weeks of RT in June. He has been on Zoladex since July 2019, now every 3 months. His PSA at 0.4 during chemo, this has now risen to 2.3 and he is experiencing terrible bone pain in his back and hip.

A recent bone scan has shown cancer growth in the sacrum and hip, so after the consultant hoping the chemo and RT would hold everything for 12 - 18 months, we are only 4 months gown the line and starting Enzalutamide.

I am hoping this drug will suit him better and it will keep his PSA low and stop further spread. But until you have the bloods and scans you just don’t know. It seems so different for so many.

I wish you all the best going forward and keep smiling and enjoying life and being with your loved ones, making special memories.

Take care

SunnyJane xx

User

Posted 18 Jul 2020 at 06:42

Hi Sanders long time no-hear !!

It is a VERY unpredictable disease as my Onco said.

On the flip side , I too have just passed 5yrs post op. I refused RT outright as they said not curative and then went on a journey to find any spread. I’ve always had huge psa but they never used to find anything , so I’ve refused all treatment. So I’ve had 5 yrs of top QOL ( except the mental stress ) and ZERO interventions. Fair enough my psa is over 500 now and I’ve been getting back pain. Scans in 2 weeks and then the truth. Maybe time to behave myself.

Best wishes

User

Posted 18 Jul 2020 at 08:00

I’ve just looked at your profile again. Yes you are G9 but have they ever found bone or lymph mets anywhere? So you’ve had every treatment under the sun just based on psa rises ? That’s an awful 5 years you’ve had. I guess it’s your Oncos choice. I undoubtedly have plenty of cancer still around but it’s not been harming me nor detectable anywhere so I decided on no treatment and he was ok with that. I do have stuff starting on my spine and 2 lymph’s enlarging though.

But it does make you wonder whether treatment is always the right way to go. I feel awful for you

User

Posted 18 Jul 2020 at 08:58

CJ, if you scroll back in this thread you will find your previous conversations with Sanders. He has bone mets.

Hi Sanders, devastating news - I am so sorry. Looking back, the enza has only actually worked for 8 months which is lower than average for that drug but better than the 50% of men that it doesn't work for at all. If you coped well with the chemo last time, it may be well worth trying again - either docetaxel for a second time or cabazitaxel. You can always stop if you feel it is impacting on your quality of life too much. You could also ask whether it is worth trying Stilboestrol; it is an old fashioned oestrogen drug but works well for some men where more modern treatments have failed. Your cancer has not behaved in the way that prostate cancer normally does (spread to the face is very rare) so perhaps a 'not normal' treatment is needed.

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

User

Posted 18 Jul 2020 at 09:44

Sorry Lyn/ Sanders , I’m in a bit of a mind-pickle myself at the moment :-((

User

Posted 18 Jul 2020 at 09:51

Hi Sunny-Jane,

Your right that everyone is completely different with regards treatment. I was on Zoladex for almost 3 years with no problems and PSA undetectable. It then suddenly started to rise hence the addition of enzalutamide.

Hope your OH gets the treatment that suits him best. Fingers crossed for him. Take care.

Sandy

User

Posted 18 Jul 2020 at 10:01

Hi Chris,

No worries mate, totally understand. Met my consultant yesterday and gave just received a date for my CT scan already, 30th July, so at least it ain't to far away.

The mets were not there at diagnosis but came later. That's me posted my notice to my work now, been off since last October so decided that now I'm an auld guy, just turned 60, it was time to go.

Good to hear that you've had the good QoL. Looking back I think I've coped well with everything. Kept working upto last October, biggest and saddest thing was the sex side of life but my surgeon did say pick one sex or life so to me it was a no brainer. Like yourself Chris, the s*** was gonna hit the fan sometime.

Good luck for the scans mate.

Sandy

User

Posted 18 Jul 2020 at 10:16

Hi Lyn

Thanks for the info Re treatment, I will keep it in mind for my next visit. The last bone scan identified hot spots in my spine, pelvic area, rib cage and cheek bone. When I met my consultant yesterday she had her doubts about the cheek bone. Funny that I don't have any real pain apart from some wee niggles in my joints or after a round of golf.

She did tell me not to worry too much about the PSA as the hot spots on the last scan were not large clusters, think she is more concerned about soft tissue being infected. Just devastated that with Zoladex and enzalutamide combined the cancer seems to be sticking 2 fingers up to them.

Hope your are keeping well and safe.

Thanks.

Sandy

User

Posted 21 Aug 2020 at 20:09

All,

Latest meeting with oncologist showed PSA up again, going up at least by 1. every month now. He told me to stop thinking about PSA.

Oncologist baffled as last CT scan showed a reduction of some tumours whilst some increasing. Getting radiotherapy in a couple of weeks to ease pain in lower back.

Sandy

User

Posted 12 Sep 2020 at 20:57

Hi all,

Latest scan showing a load of activity in pelvic area. Had a dose of radiotherapy and it floored me for a week, felt crap all week.

Met with oncologist last Friday and he took me off Enzalutamide as it ain't working anymore, only lasted about 8 months.

PSA now 4.8, was 0.8 at turn of the year. Anyway been put forward for Radium 223 treatment, 6 sessions. Just feel that treatments are now coming to an end but oncologist is confident that I will benefit from it. He also said that there was more treatments left but it doesn't feel like it.

I've read up on Radium 223 and it seems a good treatment with little side effects, so here goes. I will have a wee read of others experiences tomorrow.

Stay safe all.

User

Posted 12 Sep 2020 at 22:21

Sorry about the enza Sanders, I read recently that it doesn’t work at all for 50% of men so perhaps 8 months is quite good although you would have much preferred to be in the 2 years + group.

If searching old threads on here for Radium 223, also search for Xofigo and Alpharadin; a few past members were involved in the very early trials and wrote detailed logs here of their experiences.

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

User

Posted 04 Oct 2020 at 20:33

Hi all,

Off Enzalutamide now as it ain't working anymore. Started Radium 223 last week, 6 sessions over 6 months. So far side effects have been bearable with slight increase of pain, what is to be expected.

PSA now at 5.4, but told PSA is no longer important as the Radium seems to cause your PSA to rise.

Let's see where this journey takes me now. Still hoping to get away for new year, insurance company are willing to insure which was a surprise. Hopefully side effects will still be slight. Cannot go away for 7 days after injection but OK for after that as long as I feel OK.

Onwards and upwards.

Sandy.

User

Posted 05 Oct 2020 at 09:56

I hope the Radium223 Does it’s job Sanders. Getting away for New Year sounds good.

Edited by member 09 Dec 2020 at 09:47 | Reason: Typo

Ido4

User

Posted 09 Dec 2020 at 10:53

Hi all,

3 sessions of Radium down and so far not too bad. The biggest side effect is increased aches and pains. Been assured by specialist that this is normal and latest bloods are showing the therapy is working although PSA is now at 9.5 but I've been told to forget PSA readings now as it doesn't mean anything anymore. Still its hard not to think about it.

Was going to Lanzarote in early new year for a holiday, managed to get travel insurance/PCR test etc but now the SNP have placed a travel ban on us so insurance would be null and void. Not happy but what can you do, if I stayed in England I would be able to travel.

Anyway enough of my rants, let's hope everyone can have some kind of Christmas with loved ones.

Cheers

Sandy

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