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User
Posted 12 Apr 2016 at 10:06

Hi All,


Its taken some time to come back down to earth. After 6 weeks of waiting for consultation from last chemo I finally saw doc and got given the news. My PSA is down to 3.9 (from 294), The bone scan shows reduction of spread and CAT confirms it all. SO, the cancer is in remission and I don't have any further treatment, except HT and check up in four months! Myself of OH spend the day grinning at each other, laughing and plenty of bubbles at end of the day! It feels unbelievable after dx 11 months ago. Ill be able to put it at the back of my mind at last! Job Done!


 


So after dx of Gleason 9, PSA 294 and Mets in bones and then 11 months of Pca on my mind every day, HT, 6 rounds of chemo I can finally sort of relax! HT gives me flushes during day and night, but that's it really and something I can live with. I didn't change my habits all that much, just ate and drunk as you should, kept diary, red meat and wine. also exercised a bit and kept working!


The best bit was being with OH when being told and then being able to tell my family and friends. Everyone is so pleased.


Also would like to say a big thank you to my new bloggers and friends on this site. The welcome and continued support was brilliant and really helped me through this process. There was always good advise and opinions given, some of which I took and some I didn't, and everyone was so kind. I aim to stay on line to be able to assist anyone else who is in my situation and  be as useful and everyone else was!


So job done


 


Steven

User
Posted 12 Apr 2016 at 10:06

Hi All,


Its taken some time to come back down to earth. After 6 weeks of waiting for consultation from last chemo I finally saw doc and got given the news. My PSA is down to 3.9 (from 294), The bone scan shows reduction of spread and CAT confirms it all. SO, the cancer is in remission and I don't have any further treatment, except HT and check up in four months! Myself of OH spend the day grinning at each other, laughing and plenty of bubbles at end of the day! It feels unbelievable after dx 11 months ago. Ill be able to put it at the back of my mind at last! Job Done!


 


So after dx of Gleason 9, PSA 294 and Mets in bones and then 11 months of Pca on my mind every day, HT, 6 rounds of chemo I can finally sort of relax! HT gives me flushes during day and night, but that's it really and something I can live with. I didn't change my habits all that much, just ate and drunk as you should, kept diary, red meat and wine. also exercised a bit and kept working!


The best bit was being with OH when being told and then being able to tell my family and friends. Everyone is so pleased.


Also would like to say a big thank you to my new bloggers and friends on this site. The welcome and continued support was brilliant and really helped me through this process. There was always good advise and opinions given, some of which I took and some I didn't, and everyone was so kind. I aim to stay on line to be able to assist anyone else who is in my situation and  be as useful and everyone else was!


So job done


 


Steven

User
Posted 04 Dec 2019 at 07:57

You know what Steven, i think that you will be around longer than you think.


Take every day as as a new day and ensure you enjoy every day. That is how I do it. The days of having negative thoughts has completely left my life. I even find Brexit highly amusing much to annoyance of my friends


Have a great Christmas


Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 19 Dec 2019 at 01:58
Hi All,
Just to say thanks for the posts and pms is encourage and support which was greatly needed. Taken a few weeks to come off the ceiling.

I have been to the Beatson in Glasgow to look at drug trials but unfortunately the one I was hoping to get on is unsuitable. There are other ones but they are on the long finger at the moment. At least Iam getting a recommendation to do a course of radium which will hopefully start in Jan. Have a consultation on 24th Dec so hoping it’s a good one as Iam cooking the turkey!

Strange how life goes on no matter what but at least I’ve started opening my collection of fine Scottish malts and wondering why I didn’t do that earlier.

So once again thank you for your support and I hope everyone has a great Christmas!

Steven
User
Posted 04 Dec 2019 at 05:49

This is heartbreaking news.  All best wishes to you and your wonderful family.


Ulsterman

User
Posted 04 Dec 2019 at 06:16
I’m so very very gutted to read this mate. You had it in for you right from the start didn’t you and braved everything put in your path. I can’t imagine how you must feel right now as have been in a state of panic myself , and I worry when I may need to speak to my 9 yr old son again :-((.
I hope Xmas can be as pleasant as possible given all.
User
Posted 04 Dec 2019 at 06:42
s***, are there no leutinum options for you ??

User
Posted 04 Dec 2019 at 07:03
Terrible news Steven, hope you manage to take solace and support from your loving family.
Have a relaxing Christmas and have some success exploring further treatment options in the New Year.
User
Posted 04 Dec 2019 at 08:29

Originally Posted by: Online Community Member
How do you deal with telling children?


Really sorry to hear this Steven.


I don't know what, if anything, you have told the children already.


Macmillan do some really helpful advice on this subject:


https://www.macmillan.org.uk/information-and-support/coping/talking-about-cancer/talking-to-children


There's a free Macmillan book available from most hospital cancer centres, and the PDF is available here:


http://be.macmillan.org.uk/Downloads/CancerInformation/ChildrenAndYoungPeople/MAC5766TalkingtochildrenE2.pdf


 

User
Posted 19 Dec 2019 at 07:44
Dear Toast ,

Calm mind brings inner strength and self-confidence, so that's very important for good health. We Wish you a merry christmas.

Regards,

Bose
User
Posted 19 Dec 2019 at 07:54

We're all rooting for you Steven, wishing you a great Christmas and success with the planned treatment.

User
Posted 19 Dec 2019 at 16:31

Have a wonderful Christmas and make it as full of pleasure as you can. I sincerely hope that you still have many years left and new treatments come along all the time.


My oh has had loads of different treatments and is currently on chemotherapy.  I try not to think too far ahead as I have tended to spend as much time as I can with him over the last nine years but am trying to do some things independently now so that I don't lose my confidence.


We don't know what the outcome will be after the chemotherapy - just pray it works.


Good luck and enjoy those malts!

Show Most Thanked Posts
User
Posted 12 Apr 2016 at 10:16

Very best wishes from me Steven. Yes you can both sit and chill now , knowing you have done everything you can. Enjoy yourselves
Chris

User
Posted 12 Apr 2016 at 10:19

hi toast
that's great news, seems me and you are in the same boat, been told letter on way to tell me appointment to urologist, slightly miffed as onco said they would always look after me

regards
nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 12 Apr 2016 at 14:43

Fantastic news! Gives us some hope too http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

User
Posted 12 Apr 2016 at 15:47
S

Great news and an inspiration to others who may be following in your footsteps.

Thanks Chris
User
Posted 12 Apr 2016 at 16:42
It's always good to hear great news like yours, an encouragement to others

Arthur
User
Posted 12 Apr 2016 at 16:47
Great news and always worth sharing. Shame about the HT though but I know all about that - you have my sympathies, it's small price to pay though to keep us going.

Best wishes

John
User
Posted 13 Apr 2016 at 17:02

Top news, and thanks for sharing! Enjoy the time to come!

User
Posted 13 Apr 2016 at 18:59

Steven
That's great news and so encouraging for us all.
Thanks for sharing.

Paul


User
Posted 13 Apr 2016 at 20:30

Terrific news Steven getting good news is the best tonic and always good for the others on this site to read as well.

As John says, shame about HT but long term will be doing it's job and we all know the down side of that.

Best wishes Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 14 Apr 2016 at 09:17

Thanks all, looking forward to getting on with things despite the HT and getting some milestones under the belt!

User
Posted 14 Apr 2016 at 10:52

Fantastic news for you and your OH Steven. Best wishes.


Martin

"And Rocky said, doc it's only a scratch. And I'll be better, I'll be better doc as soon as I am able"
User
Posted 14 Apr 2016 at 11:29

Well done, Steven!

Henry
Aged 50

User
Posted 15 Apr 2016 at 21:35

Fantastic .....

User
Posted 17 Apr 2016 at 11:41
Good news Steven for you and your wife hoping you are planning a summer holiday to celebrate. Jx
User
Posted 17 Apr 2016 at 15:05

Great result!

Barry
User
Posted 18 Apr 2016 at 17:24
This is brilliant news! Gives me a lot of hope for my dads future. I don't think we have been given quite as much in depth information regarding the spread as you have, but I'm hoping with all my heart that we will be in the same position as you!
"Some people care too much. I think it's called love." by A.A. Milne
User
Posted 26 May 2017 at 07:19

Hi All,

Well that was naive of me, wasn't it. It now look like the end of a new beginning!

All fit and well, or so I thought. Had check up just before Christmas and PSA had risen to 6.7. Wasn't a worry and told just enjoy your Christmas and we will do more scans. Bone and MRI done which didn't show any change but as PSA rising was given biculutamide. In three months recheck and PSA almost tripled upto 28. Taken off biculutamide and had new scans. My new onco is very nice and seems to know her stuff and advised that having new scans hopefully she will be able to see if there is any change which she can put her hat on. Intimated that maybe abi/enzo/cabatexal options, or I just may have read that into it.
From what I can see if there's a change in scans, although worrying news for me, it may give her a clearer path to go down. If there isn't, better for me, then it's scratch your head and try something else.
I know we can never second guess what the little buggers are upto, once you think you have it nailed they change everything! Thinking of calling them "little Donald's" from now on! Does anyone have any experience/guesses what next step would be? I try not to worry but OH is fed up of me getting up at ungodly hours but at least the sandwiches are made, uniforms ready and school bags packed for the mornings! Health wise feeling fit and well, although think iam peeing more since being off the biculutamide. So looking forward to our week in the Spanish sun start of July. Next meetings is in early June once results are in!

User
Posted 26 May 2017 at 14:55

Steven,


The abi/enzo/cabatexal options sound most likely options to me. Click on my profile and you will see how well enzo did for me.


'Little Donalds', I like that.


I call mine 'The Borg'. If you're a Star Trek freak like me then you'll know why.


David

User
Posted 04 Dec 2019 at 05:13
Well here I am again picking up an old thread because I smile when I look at my optimism title! I tried looking up my very first post because of some questions I asked them and the wonderful support replies I got from the OH’s of spouses.
I started with asking I’ve just been dx and just started a new relationship with a wonderful lady and her two children. We had been going out for a few months then dx and we split up because we were scared and alarmed by cancer. Six weeks later we found each other again and following lots of discussions, laugher and tears we decided, let’s go for it. I may have reduced time but with treatments I could be around 15 or 20 years.
Treatment followed which we got through ok and PSA was down. Life was good and normal and fun. Such fun as a family and I reliased that this was what life’s about. Such good times and we got engaged on a beach on mull of Kintrye and three months later married. Just after that I was told that I needed 10 more rounds of chemo which I thought, that’s fine, I’ve done it before get on with it and we did. That didn’t work and it was then 10 rounds cazataxel which stopped at 6.
Last week at consultation we had “the talk”. Love my doctor and have had so much faith in her. I feel she has done her upmost for me and trust her. So when see says I have 12 but closer to 6 months left, I believe her. I’ll try my best to disprove her but you never know with this fecking pca.
So my question now is for the OH of survivors of pca partners. How do you cope with dealing with it. How do you deal with telling children? Does the downhill come quickly. What are you supposed to do!!! I don’t bloody know and don’t know how to cope. I still feel completely healthy and have no symptoms. No one who doesn’t know me wouldn’t I had . I’ve only felt ill doing chemo. This is pants. The last two weeks have been a dream and i appear to be living in two different worlds. Normal and what the feck worlds.
What’s my next step? And know what, I get to adopt my girls this month.
User
Posted 04 Dec 2019 at 05:49

This is heartbreaking news.  All best wishes to you and your wonderful family.


Ulsterman

User
Posted 04 Dec 2019 at 06:16
I’m so very very gutted to read this mate. You had it in for you right from the start didn’t you and braved everything put in your path. I can’t imagine how you must feel right now as have been in a state of panic myself , and I worry when I may need to speak to my 9 yr old son again :-((.
I hope Xmas can be as pleasant as possible given all.
User
Posted 04 Dec 2019 at 06:42
s***, are there no leutinum options for you ??

User
Posted 04 Dec 2019 at 07:03
Terrible news Steven, hope you manage to take solace and support from your loving family.
Have a relaxing Christmas and have some success exploring further treatment options in the New Year.
User
Posted 04 Dec 2019 at 07:57

You know what Steven, i think that you will be around longer than you think.


Take every day as as a new day and ensure you enjoy every day. That is how I do it. The days of having negative thoughts has completely left my life. I even find Brexit highly amusing much to annoyance of my friends


Have a great Christmas


Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 04 Dec 2019 at 08:29

Originally Posted by: Online Community Member
How do you deal with telling children?


Really sorry to hear this Steven.


I don't know what, if anything, you have told the children already.


Macmillan do some really helpful advice on this subject:


https://www.macmillan.org.uk/information-and-support/coping/talking-about-cancer/talking-to-children


There's a free Macmillan book available from most hospital cancer centres, and the PDF is available here:


http://be.macmillan.org.uk/Downloads/CancerInformation/ChildrenAndYoungPeople/MAC5766TalkingtochildrenE2.pdf


 

User
Posted 19 Dec 2019 at 01:58
Hi All,
Just to say thanks for the posts and pms is encourage and support which was greatly needed. Taken a few weeks to come off the ceiling.

I have been to the Beatson in Glasgow to look at drug trials but unfortunately the one I was hoping to get on is unsuitable. There are other ones but they are on the long finger at the moment. At least Iam getting a recommendation to do a course of radium which will hopefully start in Jan. Have a consultation on 24th Dec so hoping it’s a good one as Iam cooking the turkey!

Strange how life goes on no matter what but at least I’ve started opening my collection of fine Scottish malts and wondering why I didn’t do that earlier.

So once again thank you for your support and I hope everyone has a great Christmas!

Steven
User
Posted 19 Dec 2019 at 07:44
Dear Toast ,

Calm mind brings inner strength and self-confidence, so that's very important for good health. We Wish you a merry christmas.

Regards,

Bose
User
Posted 19 Dec 2019 at 07:54

We're all rooting for you Steven, wishing you a great Christmas and success with the planned treatment.

User
Posted 19 Dec 2019 at 16:31

Have a wonderful Christmas and make it as full of pleasure as you can. I sincerely hope that you still have many years left and new treatments come along all the time.


My oh has had loads of different treatments and is currently on chemotherapy.  I try not to think too far ahead as I have tended to spend as much time as I can with him over the last nine years but am trying to do some things independently now so that I don't lose my confidence.


We don't know what the outcome will be after the chemotherapy - just pray it works.


Good luck and enjoy those malts!

 
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