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A New Chapter

User
Posted 10 Sep 2018 at 22:58

Thank you, everyone, for your kind replies. 


The PSA results did come as a surprise.  I just suddenly thought that my journey could be shorter than I had hoped for if my main treatment showed signs of failure so soon.  


I needed to let the news sink in and decide what to do for the best.  I'm not due to see the oncologist until December and next week I'm should have my next Zoladex implant.


If that's not working for me then I wondered if I should change to Prostap rather then commit myself to 3 more months of Zoladex.


Anyway I've decided to have a testosterone test in the next few days to see what the situation is.  Maybe have another PSA test next month just to see how things are going.  I know trends are more important than individual tests so I'll see what happens.  If it does continue to rise then I feel I should see my oncologist earlier. 


I think at this stage, she would say let's see how things go over the next few months. 


Steve 

Edited by member 10 Sep 2018 at 23:02  | Reason: Spelling

User
Posted 10 Sep 2018 at 23:11
I think another injection and then another blood test is a sensible approach. You may just have had a bad batch last time that didn't last quite long enough.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Sep 2018 at 23:12
Hi Steve have you thought about a psma scan to try and locate the recurrence? If it's still localised you could be a candidate for more local treatment??
User
Posted 18 Sep 2018 at 02:22

Hi, 


Just had my testosterone test result come through, which was 0.8.


In June last year, I had a result of 0.3, even though, at that time, I had ended my original hormone treatment nine months before.  Does this mean that this time the Zoladex isn't working as well for me? Could this be the reason why my PSA has increased recently?


My next Zoladex implant is due tomorrow morning. 


Steve 

User
Posted 18 Sep 2018 at 08:27
No - you are very very close to castrate level. It may just be because you are so close to having your next jab.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Oct 2018 at 19:18

Hi, 


I had a PSA Test a few days ago to see if the test I had last month was just a "one off". Then the result was that my PSA had risen to 1.30 from 0.75 in mid June and 0.925 at the end of June.  This was in spite of restarting my Zoladex treatment again in March when I was told my PCa was incurable as my PSA had been doubling every 10 weeks. 


I was hoping that my PSA would fall again but this evening my results show that it's risen again to 1.40.  Only a small rise but the trend is still upwards.


I'm not due to see my oncologist until January.


Steve 

User
Posted 30 Oct 2018 at 20:09
Hi Steve ,
I know we are all different But have a look at my PSA results and treatment from

15th Nov 2015 0.6,

15th Dec 2015 1.14,

15th Jan 2016 1.2 slowed at last.

22nd Feb 2016 0.9 going down testro 16.04

Appointment at the RM back on six monthly

5th May 2016 PSA 1.11 Testro 16.6

Update on the UCLH ,in London my efforts on getting an AUS fitted takes another step this Friday 22nd May 2016
I go in for another stretch as it is closing up again

27th May 016
Had a stretch at the UCLH , when I came home I went straight into retention cathetering a couple/three times a day

10th August 2016 PSA 1.15 up .04

Oct 2016 1.73 Psa up .6

Nov 2016 1.52 Psa down .21

Jan 2017 1.40 Psa down .12

June 2017 3.2 Psa doubled and a bit



Scan results tomorrow

Had PET/CT Scan results on the 27th July

Opps not so good three hot spots
neck
shoulder
groin

Back on Hormones Prostap
User
Posted 30 Oct 2018 at 23:53

Steve


None of us like to see a PSA increase, no matter how small.


Ulsterman

User
Posted 31 Oct 2018 at 10:59

Hi Steve,


Sorry to hear your PSA has risen again, try to keep positive.


Best wishes


Arthur

User
Posted 31 Oct 2018 at 12:10

Sorry to hear this Steve. Is it worth contacting your specialist nurse or the oncologist‘s secretary to see what their thoughts are?


Ian

Ido4

User
Posted 31 Oct 2018 at 15:55
Sorry this has happened Steve.

Thinking of you all
We can't control the winds - but we can adjust our sails
User
Posted 01 Nov 2018 at 08:19
Time for a psma scan, to see what's been missed and if it's locally treatable.
User
Posted 01 Nov 2018 at 14:13
Agree a PSMA scan might be helpful. You could check whether you could have this on the NHS.Certain hospitals have already indicated they wish to do this and I am not sure whether lack of implementation is due to any one or more of three considerations, namely NICE approval for NHS, lack of funds, the need to have nearby source of generating the ligand. Unfortunately, the cost of the scan privately is of the order of £2500 depending where you go which unless things have changed recently means in the London area for UK.

If only a very few hotspots are found it may be possible to treat these and slow the progression of cancer, either as stand alone or with systemic treatment.

In view of your other medical condition it would be best to establish whether the foregoing would be helpful.
Barry
User
Posted 01 Nov 2018 at 19:22
Sorry to read your latest result. Worth asking for an earlier than planned onco meet?

Ray
User
Posted 02 Nov 2018 at 08:22

The oncologist at the Royal Marsden Hospital told me they have a PSMA scanner there but it’s only available for patients within their catchment area. I think it would cost me more than £2600 to move from Coventry to Sutton in Surrey to be included in that group, should I ever need such a scan!


I think there is also one at UCLH, and at the Mount Vernon Hospital: https://www.stricklandscanner.org.uk/


There does seem to be a dearth of these sophisticated scanning facilities in Britain and the Birmingham Prostate Centre say they have had to send over 30 patients to Germany for such scans in the past. So much for the miracle of the NHS (although it has been miraculous for me recently).


A recent post here noted that a new Thorium isotope is showing good promise as an even better PET tracer than Gallium 68, the gold standard up till now. This nuclear medicine is advancing rapidly, almost daily, so we all might be completely cured one day soon! 😉


Cheers, John.

Edited by member 02 Nov 2018 at 08:30  | Reason: Not specified

User
Posted 03 Nov 2018 at 09:38

Thanks everyone for replies and good advice. 


I would really like to have a PSMA scan just to let me know what's going on. It's the "not knowing" that's the worst thing.  If there's nothing much they can actually do once they have the information then I suppose they would regard it as an expensive way to deal with my curiosity.


Sometimes I feel frustrated that I know if I spoke to to my oncologist now, I'm sure nothing would change.  She'd say "Well it's not going up (PSA) as quickly as it was before we put you back on treatment".  I would have expected the figures to remain around the level they were in June, especially this early in the treatment plan.


Steve 

Edited by member 03 Nov 2018 at 13:17  | Reason: Not specified

User
Posted 03 Nov 2018 at 16:34
There are lots of cases out there who really seem benefit from further salvage radiation if there are only a couple of hot spots to deal with.

I think it would be worth asking about.
User
Posted 08 Jan 2019 at 21:28

Hi,


Finally had an oncology appointment this afternoon (last time I saw her was back in June) and found I was not only surprised by what was said but a little shocked and disappointed.


As I said in previous posts, even though my PSA had fallen quite nicely from 4 to 0.775 and then 0.925 in June after I'd restarted Zoladex last March, but now my most recent PSA is 1.7. 


The oncologist said she wasn't surprised by that but I wasn't expecting what she said next.  She said that my PSA would now continue to rise but she didn't expect it to fall again under this treatment.  She said that she would consider changing or adding to my treatment but not until my PSA reached double figures.  I asked if I could have a PET Scan as I'd like to know where the cancer is and she said she would be happy to send me for one, again when the PSA reached double figures.


I was hoping my Zoladex treatment would work longer for me than it now seems it might.  I keep being told that some PCa patients last for years on this treatment before having to go onto the next treatment. 


I just feel now that my remaining years will be less than I was hoping for.


Steve

User
Posted 08 Jan 2019 at 22:04

Steve


Sorry to see this. It's all very unsettling. 


I'm wondering if we are with the same oncologist.


Ulsterman

User
Posted 08 Jan 2019 at 22:18

Steve,


l’m sorry to see your latest update, I hope and pray that you will receive the treatment you need to get your PSA back under control and the outcome is more positive for you.


Best wishes,    Arthur 

User
Posted 09 Jan 2019 at 06:36
That sounds really disappointing Steve. So your first HT hasn’t lasted a year then ? Hope the next one does a lot better for you

If life gives you lemons , then make lemonade
User
Posted 09 Jan 2019 at 08:37

Sorry to here this Steve. I hope your oncologist will send you for scans soon rather than wait and then plan any additional treatment based on the scan results.


My wife and I have renamed my oncologist Dr. WTF because of the number of appointments where he has taken a completely different tack from the expected one. Usually a more pessimimistic one too.


Is it worth contacting specialist nurses and getting a second opinion?


 


 

Ido4

User
Posted 09 Jan 2019 at 11:55
Yes, If I were you I would request a second opinion on the NHS with an eminent oncologist of your choosing.

Best of luck.

Cheers, John.
User
Posted 09 Jan 2019 at 16:13
What was your testosterone reading? If you are above castrate level then the HT isn't working - possibilities include the wrong dose being given, too long a gap between injections, it being injected in the wrong site or stored incorrectly. If you are below castrate level then yes, you are becoming hormone independent but it is sensible to delay adding another hormone like bicalutimide at the moment because it has a limited life span in terms of effectiveness. The only possible alternative I could see right now is chemo but a) there is no evidence of mets outside the prostate bed (so could be a sledgehammer / nut scenario) and b) your heart problems may rule it out anyway.

So waiting until the PSA is a bit higher and then having a body scan seems very wise.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Jan 2019 at 20:17
Hi Steve
I don't know if early Chemo would work for you , I have had eighteen months since chemo plus HT , they may give you early chemo plus Abbi tabs ,I am now 70 , psa 0.04 and feeling ok
Barry
User
Posted 10 Jan 2019 at 03:07

Hi, 


Thanks everyone for your messages of support and good advice. 


Lyn, I think what you said about delaying adding other treatments was really what my oncologist has in mind.  She wants me to get the maximum benefit from this treatment before moving on to another as each only lasts so long. 


I will ask for another testosterone test to check on my levels. The one I had a few months ago was 0.8 which you said at the time was very close to the castrate level.


I'm finding it a little hard to come to terms with this recent news,  I was hoping not to face this stage for several years.  It seems to have come far quicker than I ever expected. 


I have to admit that I do feel a little scared.


Steve 

User
Posted 11 Jan 2019 at 23:17

Hi, 


I had a testosterone test this morning  


If when I get the results they show that I'm not at the castrate level, is there any chance that if my HT was changed from Zoladex to Prostap, would it make any difference to the chances of the treatment working better? 


I'd be interested if anyone has done this and found the other treatment worked better.


Thanks 


Steve 

User
Posted 11 Jan 2019 at 23:50
That's one possibility - or maybe to have the 3 monthly dose every two months; there are a couple of men on here that have needed to do that. Adding bicalutimide is another possibility, or trying Stilboestrol (oestrogen) instead of ADT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Jan 2019 at 00:32

Thanks Lyn.


I suppose whatever I wanted to do would have to be approved by my oncologist. 


I had a long chat with my GP on Thursday evening and he said that he would support me in anything I wanted to do.  He reminded me that it was "My Life" I was fighting for and he would help me as much as he was allowed to. 


It's nice to know I have a wonderful GP.


Steve. 

User
Posted 12 Jan 2019 at 13:06

Hope you get a way forward soon Steve. Your GP sounds fantastic.


That level of support is very reassuring.


Ian

Ido4

User
Posted 12 Jan 2019 at 14:29

Good luck moving forward Steve, been following your fight for a while, inspired me mate. 


Best wishes


Chris.

User
Posted 12 Jan 2019 at 15:10

What they did was dose me a three monthly dose every six weeks. This kept me clear and PSA stable albeit a little high for three and a half years. It was only in July last year when the PSA started to take an upwards tumble with a low T reading which indicated the start of metastasis and therefore the chemo which I began on Monday this week.

Edited by member 12 Jan 2019 at 19:57  | Reason: Not specified

Ten. YES BLOODY 10 years since DX!!


I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 12 Jan 2019 at 20:45
Great to hear you have such a supportive GP Steve. Try and take heart in the fact that there is still much in the armoury

Bri
User
Posted 13 Jan 2019 at 08:25
Seems a bit of an oversight by your onco that they haven't checked your totesterone as a matter of course??

Definitely get that question answered
User
Posted 13 Jan 2019 at 14:40

Thanks everyone for your support and info. 


Bazza, it's an interesting idea to ask if cutting down the time between HT injections might be of benefit to me.  That seemed to work well for you. I'll see what my testosterone results are before any further discussions with oncology.


francij1, oncology have never suggested that I should have a testosterone test.  I know quite a few on here do so I don't see why they feel it's not of benefit to me. 


Interested to see what the figures are.  I shouldn't have to wait for long. 


Steve 

User
Posted 13 Jan 2019 at 15:30
Hi Steve

When I take my PSA blood request in to my NHS drop in centre I simply ink in other things I want to know eg testosterone and cholestorel. Perhaps things are a bit slack in the North West but so far this method has never been questioned.

Keep on truckin' mate.

John
User
Posted 13 Jan 2019 at 15:46

Originally Posted by: Online Community Member


francij1, oncology have never suggested that I should have a testosterone test.  I know quite a few on here do so I don't see why they feel it's not of benefit to me. 


Steve 



 


I think the opposite is the case. Except for a small number of men here, it seems the testosterone test is not routinely used by oncos / CNSs as a monitoring tool for men on HT. Quite a few of the members only have it because they have read about it here and either requested it or, like Jasper, have added it to the blood test order form themselves. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Jan 2019 at 02:12

Hi, 


The testosterone test was very useful to me a couple of years ago when it confirmed that the HT was still blocking my testosterone a year after I had my last HT implant. 


My result then, showed that my level was only 0.3 when the minimum normal figure is usually 7, which confirmed why my HT side effects hadn't gone away.


Steve 

User
Posted 15 Jan 2019 at 17:07

Hi, 


I've just seen the results of the testosterone test I had on Friday.  They show that my level is 0.7 nmol/L. 


Not as good as the first time I was on HT when I was first diagnosed but slightly better than last September when it was 0.8 nml/L. 


How it will affect my PSA rate of rise, only time will tell.


Steve 

Edited by member 15 Jan 2019 at 17:11  | Reason: Not specified

User
Posted 15 Jan 2019 at 17:22

Steve


Instead of the usual good luck messages, I saw this quote and thought of you straight away.


Life is like a camera..


Focus on whats important..


Capture the good times...


Develop from the negatives..


If things dont work out, 


Take another shot !!


Im getting soppy in my old age, gotta be the ht ? 


Take care mate


Chris.

User
Posted 15 Jan 2019 at 17:38

Thanks Chris, 


I have that on a plaque our kitchen wall, I do try to live by it but it's so hard as times.


Steve 

User
Posted 06 Mar 2019 at 23:22

Hi,


I've just had the results of my latest PSA test.  It's risen again to 1.90 from the 1.70, the last test result I had eight weeks ago.  It's the fifth rise I've had since the first pleasing low result I had after restarting hormone treatment again last March.


My oncologist said in January that she expected my PSA to continue rising now as the Zoladex didn't seem to be working as well second time round. 


Unfortunately, it appears she was right.  


Steve

User
Posted 07 Mar 2019 at 09:26

Morning Steve,


sorry to hear that the numbers are on the way up.


Perhaps the Zolodex will need more time to get a hold second time round?


It must be very worrying for you.


Thinking of you,


 


Kevin

User
Posted 07 Mar 2019 at 09:47
Steve

Sorry to read of the continuing increase. Hopefully they wiĺl soon add something to reverse the trend.

Keep fighting

Ray
User
Posted 07 Mar 2019 at 12:35

Hello Steve,


I'm so sorry to hear about your rising PSA levels.


I was taking Prostap injections, until July of last year. I'm also still experiencing side effects.


Is there a particular reason, why your PSA levels continues to rise? Your oncologist doesn't sound very friendly, I must say.


You remain in my prayers, dear friend.


 


 


Frank.

User
Posted 07 Mar 2019 at 12:39
Any chance of early chemo or ABI??
User
Posted 07 Mar 2019 at 17:36

Hi, thanks for your messages  


Kevin - great to hear from you again after such a long time. 


Ray & Francij1 - My oncologist said she would introduce additional meds when my PSA got closer to double figures.  Her argument is that she wants me to get the maximum benefit from each stage of my treatment.  I have suffered quite badly from side effects (cardiac problems and fatigue) and she said she wanted to maintain my quality of life. 


Frank - my PSA is rising because possibly not all of the cancer cells in the prostate were killed off by the radiotherapy or I may have a spread to other areas.  She has said she will send me for a PET Scan when my PSA gets a bit higher.  I am desperate to have the scan as I need to know where the problem is.  It's one time where I wish I had access to private health care. 


Steve 


 

User
Posted 07 Mar 2019 at 18:15
Sorry to read this Steve. It's a fear many of us have that some cells are not hormone sensitive. I hope when the oncologist adds Abi, enzo or chemo you get a good response.
Thinking of you.

Ido4

User
Posted 07 Mar 2019 at 18:21

Steve


It's been a long slog so far and you have got past many hurdles along the way, keep going mate.


Thanks Chris and Dawn.

User
Posted 08 Mar 2019 at 12:06

Steve, Zoladex failed very quickly for me too. try Prostap 3 monthly then, if you show signs of failure, increase the frequency of dosage. i have 3 monthly injections every 6/8 weeks. it lasted four yesrs before failing again 

Ten. YES BLOODY 10 years since DX!!


I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

 
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