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Mets have gone ! - almost 5 years on

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User
Posted 24 Jul 2014 at 19:46

Well I have to say I'm very impressed that hospital have done me proud. PET/CT scan last September - showing no sign of live cancer cells in lymph nodes - 4 years after first going to GP with symptoms and diagnosis of psa of 1,100 - gleason 4+5 with extensive lymph node mets.

But with psa still creeping up this year they decided to do a full set of CT, bone scan  a couple months ago and last week a full body MRI scan taking 90 minutes. The result of this last MRI still shows no active mets outside the prostate and Seminal vesicles.

With no active mets - i dont qualify for any trials just yet.

I had earlier asked if RT was now an option, but they wanted these addition scans - but not the onco consultant has said that he considers it worth a short set of RT sessions on the prostate and SV's to knock it back and et psa down from 12.

He said I have done extremely well on the HT this last 5 years and he was talking of further HT keeping me where I am for two plus years or more, and then plenty of other of options.

So obviously I'm well pleased with this.

 

How many others here have had such a good reversal from such an advanced set of mets??. And anyone with experience of doing RT after all this?

 

 

User
Posted 24 Jul 2014 at 22:15
Mal

This is amazing. I don't think I've ever heard of anything like this. Brilliant news for you!

Best wishes

Allison

User
Posted 24 Jul 2014 at 19:46

Well I have to say I'm very impressed that hospital have done me proud. PET/CT scan last September - showing no sign of live cancer cells in lymph nodes - 4 years after first going to GP with symptoms and diagnosis of psa of 1,100 - gleason 4+5 with extensive lymph node mets.

But with psa still creeping up this year they decided to do a full set of CT, bone scan  a couple months ago and last week a full body MRI scan taking 90 minutes. The result of this last MRI still shows no active mets outside the prostate and Seminal vesicles.

With no active mets - i dont qualify for any trials just yet.

I had earlier asked if RT was now an option, but they wanted these addition scans - but not the onco consultant has said that he considers it worth a short set of RT sessions on the prostate and SV's to knock it back and et psa down from 12.

He said I have done extremely well on the HT this last 5 years and he was talking of further HT keeping me where I am for two plus years or more, and then plenty of other of options.

So obviously I'm well pleased with this.

 

How many others here have had such a good reversal from such an advanced set of mets??. And anyone with experience of doing RT after all this?

 

 

User
Posted 25 Jul 2014 at 00:17
Hi Mal

Wow fantastic news, I have only heard of all Mets disappearing once before and that was on one of Dr Snuffy Myres blog regarding one of his patients, this gives hope to others that are in similar position keep us informed.

http://askdrmyers.wordpress.com/2013/05/10/disappearing-bone-mets/

Roy

Edited by member 25 Jul 2014 at 01:27  | Reason: Not specified

User
Posted 25 Jul 2014 at 06:40
Mal that's great news, this may be a silly question but is it worth considering having RP and removal of lymph nodes

Bri

User
Posted 25 Jul 2014 at 07:38

Mal 

really good news

Barry

User
Posted 25 Jul 2014 at 07:53
Mal, that's fantastic news and gives hope to so many. Thanks for sharing, Janet
User
Posted 25 Jul 2014 at 08:16

Mal, great news mate, gives hope to us all

Best Wishes

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 25 Jul 2014 at 08:45

Just brilliant, Mal !

Fiona.

User
Posted 25 Jul 2014 at 09:23
What can I say Mal, truly outstanding news, news that we all rejoice and welcome.

For you Mal

Life really is for living

Barry (alias Barrington )

User
Posted 25 Jul 2014 at 10:08
Mal that is amazing and such great news. I am so very happy for you as others have said a rare result like this gives hope to others.

Long may you stay this well

xx

Mo

User
Posted 25 Jul 2014 at 11:32
Mal

That’s a big Wow! Yes very well done indeed to the hospital, not forgetting yourself of course. A post that will hopefully encourage others to keep positive. As regards RT: with such an excellent hospital track record I would just follow whatever they say.

You’ve done the 5 years, now good luck in doing the 10

Ray

User
Posted 25 Jul 2014 at 11:44

Hi Mal,

 

I'm absolutely delighted to see this post from you.

It's amazing news, and as everyone has said, it gives hope to us all.

We're all so pleased for you mate.

Congratulations on a remarkable result.

 

And hey, now that you're living in the south, why not join the lads for a celebratory drink on Dec 3rd in London?

You've waited a long time to meet up with old friends, and I can't think of a better time than this year.

 

 

Hope to see you,

 

(drop me an email)

 

 

George

B2PCa
User
Posted 25 Jul 2014 at 11:48
This is great news and the willingness to give RT is great.
User
Posted 25 Jul 2014 at 11:54

Mal,

You now have a window of opportunity to remove the prostate & SVs + nearby lymphs with a willing surgeon. That then leaves R/T untouched as a treatment for later use if required.

If you really can't face surgery the R/T would be your next best option for eradication.

Another possible  two years sounds about right before you may become HT resistant on your current regimes.

 

The ball looks to be in your side of the court so it's your choice.

User
Posted 25 Jul 2014 at 14:15

Mal

 

Really great news http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

 

Sound advice from Rob (as usual) but as always, it's down to the individual and the perceived QoL.

 

Good luck! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

 

Nil desperandum

Allister

User
Posted 25 Jul 2014 at 17:46
Excellent news. Congratulations.

Dave

User
Posted 25 Jul 2014 at 22:50
Excellent news Mal, well done to you and your medical team.

Chris.

User
Posted 26 Jul 2014 at 07:42
Great news Mal!! If only you could bottle the secret!!! Such a wonderful turn of events for you and your family and also for others to whom it gives hope.
Max

"You can only play the hand you're dealt"

User
Posted 26 Jul 2014 at 08:02

Mal

Let me add to what others have said ... a great result. Congratulations. 

Alan

User
Posted 26 Jul 2014 at 21:24

Well, what else can I add Mal but to say A BLOOMIN MIRACLE. The old saying "The more you think you know , the less you know" is certainly true in your case. Well done Mal I am so happy for you. Keep going forward.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Jul 2014 at 19:04

Mal,

That is absolutely brilliant, and gives us with husbands on long-term HT, (or whatever else they need), hope for a bit more of the future.

I am so pleased for you

Jenny

User
Posted 30 Jul 2014 at 20:10
Mal, how wonderful to see your latest results! If they are offering RT, then wow - I think you have nothing to lose and everything to gain. Go, go, go!

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

Show Most Thanked Posts
User
Posted 24 Jul 2014 at 22:15
Mal

This is amazing. I don't think I've ever heard of anything like this. Brilliant news for you!

Best wishes

Allison

User
Posted 25 Jul 2014 at 00:17
Hi Mal

Wow fantastic news, I have only heard of all Mets disappearing once before and that was on one of Dr Snuffy Myres blog regarding one of his patients, this gives hope to others that are in similar position keep us informed.

http://askdrmyers.wordpress.com/2013/05/10/disappearing-bone-mets/

Roy

Edited by member 25 Jul 2014 at 01:27  | Reason: Not specified

User
Posted 25 Jul 2014 at 06:40
Mal that's great news, this may be a silly question but is it worth considering having RP and removal of lymph nodes

Bri

User
Posted 25 Jul 2014 at 07:38

Mal 

really good news

Barry

User
Posted 25 Jul 2014 at 07:53
Mal, that's fantastic news and gives hope to so many. Thanks for sharing, Janet
User
Posted 25 Jul 2014 at 08:16

Mal, great news mate, gives hope to us all

Best Wishes

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 25 Jul 2014 at 08:45

Just brilliant, Mal !

Fiona.

User
Posted 25 Jul 2014 at 09:23
What can I say Mal, truly outstanding news, news that we all rejoice and welcome.

For you Mal

Life really is for living

Barry (alias Barrington )

User
Posted 25 Jul 2014 at 10:08
Mal that is amazing and such great news. I am so very happy for you as others have said a rare result like this gives hope to others.

Long may you stay this well

xx

Mo

User
Posted 25 Jul 2014 at 11:32
Mal

That’s a big Wow! Yes very well done indeed to the hospital, not forgetting yourself of course. A post that will hopefully encourage others to keep positive. As regards RT: with such an excellent hospital track record I would just follow whatever they say.

You’ve done the 5 years, now good luck in doing the 10

Ray

User
Posted 25 Jul 2014 at 11:44

Hi Mal,

 

I'm absolutely delighted to see this post from you.

It's amazing news, and as everyone has said, it gives hope to us all.

We're all so pleased for you mate.

Congratulations on a remarkable result.

 

And hey, now that you're living in the south, why not join the lads for a celebratory drink on Dec 3rd in London?

You've waited a long time to meet up with old friends, and I can't think of a better time than this year.

 

 

Hope to see you,

 

(drop me an email)

 

 

George

B2PCa
User
Posted 25 Jul 2014 at 11:48
This is great news and the willingness to give RT is great.
User
Posted 25 Jul 2014 at 11:54

Mal,

You now have a window of opportunity to remove the prostate & SVs + nearby lymphs with a willing surgeon. That then leaves R/T untouched as a treatment for later use if required.

If you really can't face surgery the R/T would be your next best option for eradication.

Another possible  two years sounds about right before you may become HT resistant on your current regimes.

 

The ball looks to be in your side of the court so it's your choice.

User
Posted 25 Jul 2014 at 14:15

Mal

 

Really great news http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

 

Sound advice from Rob (as usual) but as always, it's down to the individual and the perceived QoL.

 

Good luck! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

 

Nil desperandum

Allister

User
Posted 25 Jul 2014 at 17:46
Excellent news. Congratulations.

Dave

User
Posted 25 Jul 2014 at 22:50
Excellent news Mal, well done to you and your medical team.

Chris.

User
Posted 26 Jul 2014 at 07:42
Great news Mal!! If only you could bottle the secret!!! Such a wonderful turn of events for you and your family and also for others to whom it gives hope.
Max

"You can only play the hand you're dealt"

User
Posted 26 Jul 2014 at 08:02

Mal

Let me add to what others have said ... a great result. Congratulations. 

Alan

User
Posted 26 Jul 2014 at 19:11

Many thanks everyone for your support, it means a lot. I really cant believe it - and maybe the hospital couldnt either hence the addition of the MRI.

When the onco came into the room this time - he didnt really seem to know what to suggest ! - except to say that I had responded so well to HT. ( I had the total androgen block of decapeptyl and cyprostat for three years and then the withdrawel of cyprostat gave me the withdrawel repsonse for many months ).

I will certainly go with the RT to knock back the disease in the prostate and SV's - but surgury wasnt considered. I'm going back again in a month after they have had the chance to do the extended blood tests - looking for cancer cells in the blood. So will certainly ask about it, but Im not sure I want to go down that route when HT has been so effective.

I'm at a bit of a loss of what else to say really - I just cant understand it - except that it must be a very rare sub-type.

I did sign up to a study that will involve them taking regular blood samples, looking again at the original biopsy material ( I didnt realise they kept it ! ), so that I can help with the research.

I'll certainly keep youi updated and how I get on after the RT.

thanks again

Mal

User
Posted 26 Jul 2014 at 21:24

Well, what else can I add Mal but to say A BLOOMIN MIRACLE. The old saying "The more you think you know , the less you know" is certainly true in your case. Well done Mal I am so happy for you. Keep going forward.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Jul 2014 at 19:04

Mal,

That is absolutely brilliant, and gives us with husbands on long-term HT, (or whatever else they need), hope for a bit more of the future.

I am so pleased for you

Jenny

User
Posted 30 Jul 2014 at 20:10
Mal, how wonderful to see your latest results! If they are offering RT, then wow - I think you have nothing to lose and everything to gain. Go, go, go!

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

User
Posted 18 Sep 2014 at 13:20
I had scan results yesterday and like you my lymph nodes are now clear, i still have extensive bone mets but i am so pleased about my lymph nodes. It is almost 5 years since dx when my psa was 1730. After getting it down to an all time low of 0.6 it has now crept up to 6.4
User
Posted 18 Sep 2014 at 13:47
Sorry Mal, i shouldn't have posted my news on your thread, just getting used to the forum again. Great news and good luck
User
Posted 09 Oct 2014 at 12:25

Hi Mal, I haven't been on the forum for a while but have been wondering how you're doing. So pleased to read this. What an amazing result! It certainly does give hope to others. Chuffed to bits for you! 

 
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