I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

«<1819202122>»

A New Chapter

Email this conversation Print this conversation
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

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 

 
Forum Jump  
«<1819202122>»
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2025 Prostate Cancer UK