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The frustrations of nmCRPC

User
Posted 05 Nov 2017 at 09:24

Some men with Prostate Cancer are caught in a limbo land, waiting for drugs to be approved so they can be used BEFORE it spreads to bones and organs. The clinical trials for these drugs have been submitted to the regulatory authorities and the use of these drugs WILL BE approved. It just takes TIME.



These drugs can then be used to treat men whose cancer has not been located but whose cancer is in their system and is growing steadily at a a microscopic level, just waiting to find a suitable organ or bone in which to set up home.



The trials show that these drugs can delay the time for the cancer to spread and eventual death. Currently, no treatments have been approved for "Non Metastatic Hormone Refractory Prostate Cancer" patients and until the use of these drugs are approved for this "category" of disease, men won't be able to receive the drugs until their cancer has spread to distant sites.



Catch 22 or what?



"Treating a High-Grade Relapse
Men with relapsing prostate cancer whose PSA doubling time is less than six months face a more daunting situation.
If the disease is not kept in check with effective therapy, the cancer is likely to spread quickly and become life-threatening.
Here, the most prudent therapeutic approach is to adopt an aggressive plan that relies on a combination of treatments given simultaneously, aka a multi-modality approach. "


 


A year and a half after radiotherapy and still on Triptorelin shots my PSA has risen from 0.14 to 4.87 and the doubling time is 3 months.


 


https://www.verywell.com/relapsed-prostate-cancer-after-surgery-4154058

User
Posted 05 Nov 2017 at 09:24

Some men with Prostate Cancer are caught in a limbo land, waiting for drugs to be approved so they can be used BEFORE it spreads to bones and organs. The clinical trials for these drugs have been submitted to the regulatory authorities and the use of these drugs WILL BE approved. It just takes TIME.



These drugs can then be used to treat men whose cancer has not been located but whose cancer is in their system and is growing steadily at a a microscopic level, just waiting to find a suitable organ or bone in which to set up home.



The trials show that these drugs can delay the time for the cancer to spread and eventual death. Currently, no treatments have been approved for "Non Metastatic Hormone Refractory Prostate Cancer" patients and until the use of these drugs are approved for this "category" of disease, men won't be able to receive the drugs until their cancer has spread to distant sites.



Catch 22 or what?



"Treating a High-Grade Relapse
Men with relapsing prostate cancer whose PSA doubling time is less than six months face a more daunting situation.
If the disease is not kept in check with effective therapy, the cancer is likely to spread quickly and become life-threatening.
Here, the most prudent therapeutic approach is to adopt an aggressive plan that relies on a combination of treatments given simultaneously, aka a multi-modality approach. "


 


A year and a half after radiotherapy and still on Triptorelin shots my PSA has risen from 0.14 to 4.87 and the doubling time is 3 months.


 


https://www.verywell.com/relapsed-prostate-cancer-after-surgery-4154058

User
Posted 05 Nov 2017 at 16:15
Hi Tom, sorry you're in this position. My prostate cancer recurred after surgery in July 2015, in September 2016 my PSA went from <0.1 in June 2016 to 0.3 then to 0.7 by November. My PSA doubling time was estimated at 1.2 months. Gadolinium enhanced MRI showed a tumour on the prostate bed, a Choline F-18 PET scan showed a more active site in a seminal vesicle remnant but no evidence in the scans of spread. But my oncologist repeatedly told me he was convinced I had microscopic spread but scans couldn't pick it up yet. He based this on time to recurrence and PSA doubling time being so quick plus what he saw on scans couldn't be equated with the amount of PSA being generated.
I started 10 days of casodex then Lupron injections at end of December 2016. I had salvage radiotherapy in March/April 2017. I continue on Lupron until end April 2019.
I saw a different oncologist in August and mentioned to him that if they were convinced I gas microscopic spread would now be the right time to thump it with Docetaxel. I was told no further treatment is planned for now until evidence says otherwise.
Like you, everything I read points to a multi modal approach to keep the disease at bay for longer but because it isn't yet incorporated into guidelines it isn't even considered.
Hence I totally understand your frustrations. Best wishes, Ian.
User
Posted 05 Nov 2017 at 15:52

Not a good or helpful position to be in Tom and it must be very very frustrating for you.

A rock and hard place spring to mind for you.

In June you mentioned your expectation that your PSA would be >5 in November and it is approaching that now.

When do you next see your consultant.

Is it possible that they could check for spread using MRI. That alone might put your mind at ease for a while ?

We can't control the winds - but we can adjust our sails
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User
Posted 05 Nov 2017 at 15:52

Not a good or helpful position to be in Tom and it must be very very frustrating for you.

A rock and hard place spring to mind for you.

In June you mentioned your expectation that your PSA would be >5 in November and it is approaching that now.

When do you next see your consultant.

Is it possible that they could check for spread using MRI. That alone might put your mind at ease for a while ?

We can't control the winds - but we can adjust our sails
User
Posted 05 Nov 2017 at 16:15
Hi Tom, sorry you're in this position. My prostate cancer recurred after surgery in July 2015, in September 2016 my PSA went from <0.1 in June 2016 to 0.3 then to 0.7 by November. My PSA doubling time was estimated at 1.2 months. Gadolinium enhanced MRI showed a tumour on the prostate bed, a Choline F-18 PET scan showed a more active site in a seminal vesicle remnant but no evidence in the scans of spread. But my oncologist repeatedly told me he was convinced I had microscopic spread but scans couldn't pick it up yet. He based this on time to recurrence and PSA doubling time being so quick plus what he saw on scans couldn't be equated with the amount of PSA being generated.
I started 10 days of casodex then Lupron injections at end of December 2016. I had salvage radiotherapy in March/April 2017. I continue on Lupron until end April 2019.
I saw a different oncologist in August and mentioned to him that if they were convinced I gas microscopic spread would now be the right time to thump it with Docetaxel. I was told no further treatment is planned for now until evidence says otherwise.
Like you, everything I read points to a multi modal approach to keep the disease at bay for longer but because it isn't yet incorporated into guidelines it isn't even considered.
Hence I totally understand your frustrations. Best wishes, Ian.
User
Posted 05 Nov 2017 at 18:28

I had recurrence in June 2017, and after discussion with Onco I am having six sessions of Chemo followed by long term Prostap,


I did ask for Abby tabs with chemo , but was refused as that was not a current treatment plan.

Edited by member 05 Nov 2017 at 18:31  | Reason: Not specified

User
Posted 25 Dec 2017 at 19:06
I had a bone scan and a CT scan in October. The bone scan was clear but the CT scan picked up some nodules in my lungs. There was no way of telling if these are cancerous except by having another CT scan to see if they are growing.

I had a second CT scan on the 10th December and await the results. I get another Triptorelin shot in January, another PSA test and then I see the oncologist towards the end of January.

I had a dream in which I phoned up for a PSA result and was told it was 7.2. I await the actual result with interest 😁

Edited by member 25 Dec 2017 at 19:36  | Reason: Not specified

User
Posted 25 Dec 2017 at 19:13
Thanks Ian Ido4

Good luck with the treatments. I was PSA 26, T3b, N1 NO and so I wasn't surprised that it recurred. I have the road map for the journey.

Edited by member 25 Dec 2017 at 19:37  | Reason: Not specified

User
Posted 25 Dec 2017 at 19:29
I posted this on Facebook

Tom...feels grateful and privileged to have been part of the Inverness Christmas soundscape on Christmas Eve and today, Christmas. I cycled to the Cathedral to ring bells at 11:00 pm last night and got home at 1:30 am this morning after the Watch Night Service. This morning I cycled back to the Cathedral and wished loads of walkers and cyclists a "Merry Christmas." I rang bells at 9:00 am then cycled to Hilton Parish Church where I was delighted to be joined by Ruth. I think we all deserve our Christmas dinner. Merry Christmas Everybody xxxx

Not bad going for a non believer 😂
User
Posted 26 Dec 2017 at 10:00
It continues to amaze me that "the system" is so willing to use hormone treatment for recurrence and so unwilling to use chemo.
It seems to me that if there's the slightest evidence that hormone therapy is not 100% effective, then chemo should be offered as a matter of some urgency.
And also for men who have had problems coping with HT.
With virtually every other cancer, doctors agree that the sooner chemo is started, the better chance it has of doing the job, but with PCa, the fact that "50% don't die of the disease" seems to have blinded them to the obvious.
Does anyone know of any other cancer where maintenance takes priority over potential cure? I don't.
.
-- Andrew --
"I intend to live forever, or die trying" - Groucho Marx
 
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