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User
Posted 22 Nov 2021 at 11:00
4 weeks post final fraction and my body is recovering although I feel a bit rough some days. 3 steps forward and 1 step back - potentially embarrassing when there is an urgent need to use the bathroom. Next consultation on Feb 15 with an oncology ACP, whatever that means. I guess I will have bloods prior to renewai of xtandi prescription, which I guess will move from monthly to three - monthly.
User
Posted 22 Nov 2021 at 11:01
4 weeks post final fraction and my body is recovering although I feel a bit rough some days. 3 steps forward and 1 step back - potentially embarrassing when there is an urgent need to use the bathroom. Next consultation on Feb 15 with an oncology ACP, whatever that means. I guess I will have bloods prior to renewai of xtandi prescription, which I guess will move from monthly to three - monthly.
User
Posted 22 Nov 2021 at 17:53
User
Posted 25 Nov 2021 at 10:39
@ CAYAMBE

Very interesting read. Thanks for posting it.
User
Posted 25 Nov 2021 at 15:18
Ongoing refinements and new innovative treatments together with more appropriate individually tailored treatment for patients, are very encouraging. We tend to look back on past outcomes but it is good that we can look forward to the situation continuing to improve.
Barry
User
Posted 03 Dec 2021 at 14:41

Blood test on Monday with results today when i picked up 3 month supply of Enza. PSA remains undetectable and no worries at all on other measures. Oncologist type telephone meeting Feb 15 and next Enz prescription pick up a few days later, but with monthly monitoring of bloods. Almost receovered from RT so it looks like a happy Christmas. And a happy Christmas / festive season to one and all.

User
Posted 07 Feb 2022 at 10:56
I had my 3 monthly chat with the oncologist. All good with last weeks blood test showing PSA undetectable. She put my mind at rest about a few things. Also said it would be OK to come off tamusolin as this was prescribed before HT and RT and to see what happens. So about a year in to this journey and all as good as could be expected.
User
Posted 07 Feb 2022 at 11:22

Great news. Long may it continue 👍🏽

User
Posted 07 Feb 2022 at 16:16

Great news. 

Ido4

User
Posted 27 Mar 2022 at 12:52

March 18, PSA and testosterone remain undetectable. Came down with COVID on March 19. Severe sore throat but having had two boosters I got off lightly and I am now fine and ready to go to Spain tomorrow to celebrate my daughter's birthday.

User
Posted 28 Mar 2022 at 16:37

Enjoy Spain and the birthday celebrations.

Ido4

User
Posted 21 Apr 2022 at 15:09
Bloods 18 April, PSA and testosterone not detectable. COVID effect goes on with sinusitis.
User
Posted 21 Apr 2022 at 21:23
Great news with PSA 👍🏽 Hope you are feeling better soon with the sinusitis x
User
Posted 22 May 2022 at 21:55
Exactly a year ago I posted "Went today for second month supply of Enza. Result of blood test done on Monday - PSA at 0.33 and liver and kidney functions within the range. Lowering of red cell count to 4.3 from 4.5 and HCT at 0.381 from o0.395. Neiltrophis from 4.5 to 2.7".

This months bloods continue to show PSA < 0.03 and testosterone <0.5. Now 13 months of enza and no change in side effects - tiredness and libido, but may be affected due to covid in late March followed by sinusitis. Red cell count at 3.98 and HCT (0.366) the only blood measures below normal range and that may account for some of fatigue.

The treatment goes on - next telephone conversation with oncolgist end August and monthly blood tests. Zolodox every 3 months and enzo 4 tabs daily.
User
Posted 04 Dec 2022 at 18:12

How are you getting along now?

User
Posted 06 Dec 2022 at 18:18
Last blood test showed PSA < 0.03 and testosterone not detectable. Rest of bloods in normal ranges. Blood pressure good. I felt a bit rough after my most recent zolodox injection 10 days ago but now better with only slight fatigue. I took a look at my life and changed a few things and I am feeling more positive. Maybe because I am looking forward to Christmas in Valencia
User
Posted 06 Dec 2022 at 18:58

Glad to hear that your feeling more positive. Must be a difficult psychological journey. Enjoy your Christmas in Valencia!

User
Posted 06 Dec 2022 at 19:09

Glad to hear that your continuing to respond to the treatment also!

User
Posted 06 Dec 2022 at 21:33

Christmas in Valencia sounds perfect…so pleased you are continuing to respond to treatment. We went to Valencia a couple of weeks ago, the day after we received my husbands treatment plan…have a great time in the sun, it’s a gorgeous city :) 

User
Posted 06 Dec 2022 at 22:52
Sounds like a perfect way to spend Christmas - have a great time!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Dec 2022 at 20:16

Cayambe welcome 


you don’t mention if you had a digital exam? I would have expected that to have happened?


My experience was that the scans are important but a biopsy is essential before a cancer diagnosis is made


has this not been mentioned to you?

User
Posted 07 Dec 2022 at 21:32

Nigel, this thread is nearly two years old. Cayambe started treatment a long time ago!


Cheers,


Chris

User
Posted 08 Dec 2022 at 14:25

Hi 44 nigel - please look at my details. DRE right away after high PSA (64?) first by GP and then within 10 days by urologist. Thus started the process.  

User
Posted 15 Dec 2022 at 20:58

Maybe I am posting this in the wrong thread  but I had a PSMA PET scan yesterday and the tracer was  flourodeoxygloucose-18


seems like this is the way for now.


btw as I waited for an hour and a half I was freezing cold so if you get offered this I would take a blanket!!


really tired of waiting for results and a treatment plan


i was diagnosed as  Gleason 3+4=7 and T3 a N1


so very impatient to understand the way ahead   Hopefully before Christmas!


 


 

User
Posted 27 Jan 2023 at 16:40

Monthly blood test showing no change. Still fatigue and some aches and pains that I will discuss with my oncologist in February. 

User
Posted 22 Feb 2023 at 13:59

February blood test all remains good and three-monthly zolodox tomorrow.


However, I have become increasingly  fatigued (i reckon grade 2) and 4 months after first mentioning it to the oncologist on Monday he  suggested I reduce xtandi dosage to 120 mg per day and to monitor any improvement over 2 weeks. Lets see - I have no idea about how quickly any benefits of reduced dosage will  become evident. Ideas anyone? I asked about a  new scan and he said absolutely no need as PSA had been undetectable for 18 months. That is fine, after reading about side effects of xtandi it seems clear that aching legs, and muscle and bone pain are common and not symptoms of mets. 


 

User
Posted 22 Feb 2023 at 14:42
Have you spoken to the PCUK nurses? The charity did some research on HT induced fatigue 4 or 5 years ago and may have suggestions
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Feb 2023 at 16:36
Really good news on the blood results.

Hope you can mange to get the medication sorted to help with your fatigue and muscle/bones aches.

Best wishes
Elaine
User
Posted 24 Apr 2023 at 19:49
April blood test - PSA and testosterone remain undetectable. Only bloods out of sync were white cell count and neutrophils, but apparently nothing to worry about as probably a response to a tummy bug that has now gone away. Feel much better on 3 Xtandi regime but still tired, so started taking them in early evening.
User
Posted 02 Jun 2023 at 18:10

Blood test earlier this week - PSA and testosterone not detectable. Reducing daily xtandi from 160 mg to 120 mg has certainly reduced side effects. Thank you NHS. Continue with monthly blood tests and 3 monthly telephone call with oncologist that lasts about 2 minutes. 


 


 


 

 
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