DJS - My Journey - - Page 2Advanced or metastatic cancer - Prostate Cancer UK Online Community

User

Posted 19 Sep 2018 at 05:45

Great news Dave given the circumstances. Keep welll and best wishes

If life gives you lemons , then make lemonade

User

Posted 19 Sep 2018 at 08:41

Hi Dave and well done with the chemo . I am interested to see how the Arbiraterone treatment goes as this could be one of the next things i am offerd on my next Onco app. All the best Geoff..

User

Posted 19 Sep 2018 at 18:21

Hi Dave, glad to hear the abiraterone is doing a good job and that you are feeling a bit better.

Long may that continue.

Ian

Ido4

User

Posted 19 Sep 2018 at 19:48

Hi Dave,

I just read your story and I have so much admiration for your attitude . Pleased to read about your recent good results and long may it continue

Best Wishes

Paul

User

Posted 04 Oct 2018 at 04:52

Well, a further 2 weeks have passed, and my regular wake up call to take my Abiraterone tablets at 6.00am every morning continues.

And what do you know, my PSA continues to dive down. This time it is down to 2.0 and all others bloods are very much behaving themselves.

My energy levels are getting back to normal and I"ve been signed back to go back to work

Well I must admit I didn"t see this on the horizon during the Chemotherapy period, but long may it continue, as I am aware that Abiraterone only lasts for a certain period of time.

Whilst writing I am reminded of the pioneers on this site who undertake trials, both for the betterment of themselves, but also those that follow.

Lyn reminded us some while back of a chap called Spursspark who attended one of the early trials of Abiraterone at the Royal Marsden some years ago. It is worth reading his profile. A true pioneer.

Thank you

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 04 Oct 2018 at 06:36

Really pleased to see this Dave ... good old abby-tabby doing what it does best. Long may it continue.

Spurspark was a very special man; I will never forget him.

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

User

Posted 04 Oct 2018 at 15:56

Good news Dave. Really glad to read your update.

Ian

Ido4

User

Posted 27 Nov 2018 at 18:18

Just back from my latest visit to the Onco to review my Abirateron / Zytiga journey and the results are good.

PSA has dropped to 1.3 with all other bloods good.

My energy levels are nearly back to normal and I have no side effects from the drugs I am on

So the "wonder drug" Abirateron is working well, and no doubt the cancer is desperately trying to work out what to do next

Hoping Abiraterone is effective for a long time to come

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 27 Nov 2018 at 18:31

Good news Dave. Sounds like things are going well.

Best wishes,

Ian

Ido4

User

Posted 27 Nov 2018 at 19:16

Dave

Great to see a fellow "micro mets" guy doing so well. I'm 6 weeks in on the Abi and apart from the weight gain, fatigue and flushes , doing ok. I can't compare it to the chemo because I went sraight on the ht at diagnosis. Hope to return to work in a few weeks on reduced hours of course. I seem to run out of steam around 4 or 5 in the evening , hoping its just a winter thing. My onco has guys on his books 5 years in using abi so its got to be positive news for some of us. May I ask , have you had any bone pain at all ? I get little twinges around the ribs elbows, pelvis and lower spine, not agony but like someone pinching the area !! Keep going mate , you " long timers " inspire the new boys like myself.

Best regards

Chris.

"Life is what happens to you while you are busy making other plans."

User

Posted 27 Nov 2018 at 20:00

Christ Dave you’ve been through the mill and back again , and relentless psa. It’s amazing you’ve managed all those treatments with so little side effects. Glad the Abi is working and long may it continue for you. An inspiration!

If life gives you lemons , then make lemonade

User

Posted 27 Nov 2018 at 20:33

Chris,

I really have no bone pain at all in the areas where the mets are, although the joints ache a bit now and then, especially after a long walk, but they soon recover.

I pretty much put that down to old age. 64th birthday next month.

I am back at work part time with reduced hours which keeps the brain active more than anything..

My best wishes to you Chris

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 27 Nov 2018 at 20:36

Thanks Chris J,

You are doing great yourself.

Keeping positive helps enormously in my experience

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 15 May 2019 at 06:40

Well, after an amazing 8 months on Abiraterone my PSA has jumped up to 12.4 so it looks like it may be time to get off the Abiraterone bus at the next stop.

It really has been a great journey on Abiraterone with so little side effects , but there you go.

I am having a further PSMA PET Scan in acouple of weeks to see what those pesky micro mets are up to and then we will decide on the next course of treatment which I am told will be either Enzalutamide or a brand new one called Lutetium.

I will keep you posted, meanwhile enjoy the wonderful weather we are having

Kindest regards to you all

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 15 May 2019 at 07:00

This is a link to this new Lutetium treeatment they are taking to me about.

I have all my treatments at the London Clinic, so i don"t have to venture very far.

https://www.thelondonclinic.co.uk/treatments/lutetium-177-psma-for-advanced-prostate-cancer

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 15 May 2019 at 07:03

Hi Dave

Good luck with the scan coming up soon. I really hope things are ok and that Abiraterone has done a good job for you up until now. It’s great to hear that there are alternative drugs out there to try next. I hadn’t heard about the Lutetium, I’ll have to look it up.

My husband is just completing his sixth month on Enzalutamide and he’s doing really well with it so far. His PSA is presently 0.1. Long may it last. Hope you enjoy the summer months and we are looking forward to hearing how you are getting on.

Susiew

User

Posted 15 May 2019 at 07:15

Wonderful news on your husbands journey SusieW.

I am so pleased he is doing well.

My Onco just pulled this Lutetium one out of the hat without blinking

So onwards

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 15 May 2019 at 14:36

20 docataxel sessions is amazing Dave. I managed the 6 my Onco arranged and it effectively wiped me out for 4 months. Waiting to see my Onco again next month after completing 20 RT sessions on 24 April.

Interesting to see what my PSA figure is following Prostap/Chemo/RT in quick succession.

John

User

Posted 13 Jun 2019 at 14:50

So the results of my latest PSMA PET Scan are in and the good news is I didn't light up like a Xmas tree this time. More good news is that the previous mets to the lungs and prostate area are all gone. Some previous mets to the spine have reduced, but a few new pesky micro mets have decided to take up residence in a couple of ribs, so at least we know where they all are. So all in all mixed results.

My PSA is now up to 19.2 so after nearly 9 months on Abiraterone it is now time to move on to my next treatment which is Enzalutamide, so it will be interesting to see how that one goes compared to the Abiraterone.

I was offered the chance to have a few cycles of Cabazitaxel, in lieu of the Enzalutamide, but i politely declined.

Onwards

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 13 Jun 2019 at 15:09

Hi Dave

glad to see the mets to the lungs and prostate have gone and sad to see the psa has gone up, good luck with the Enzalutamide, Tony was unable to have this due to being on clopidogrel (a blood thinner} so he has just started this week on Abiraterone.

onwards and upwards.

regards barbara

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