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Advice on testosterone replacement after gleason9 t3c

User
Posted 11 May 2022 at 01:15

Hi. i have been on Nebido - Testostene rplacement injections for over 15 years and works very well for me. used to take every 10 weeks but recently reduaced to 13 weeks to be on safe side

User
Posted 17 Nov 2022 at 20:25

Hi everyone new and old just an update as not posted in a while, latest psa is 0.09,  its around 5 years post diagnosis so were  pleased with the way it's going  no side effects from treatments, still on testosterone replacement 3 monthly injections oh feels fine so all in all couldn't ask for anything more, take care everyone and there is hope after gleason9 diagnosis but we don't even take anything for granted just feel so lucky with this outcome as one of  o.h longterm friends diagnosed with prostate cancer 11 months ago with a psa of 2000  bone mets in spine now spread to sternum after chemo  and hormone therapy  also on abriteronre psa came down to 300 but rising again were so sad about this as looks like it's going in the wrong direction devastated to say the least keep keeping well..jo.x

User
Posted 17 Nov 2022 at 22:22

Thanks for your post. A good recovery like that is what we all aim for so it's heartening to hear your OH is doing so well.

Jules

User
Posted 22 Nov 2022 at 16:30

I have the same diagnosis as jt but he was Gleason 9 and  I  am Gleason 7 with  sv invasion, my urologist refused me trt and now  I have osteoporosis. 

User
Posted 24 Nov 2022 at 10:32
A gp has sent a letter to endocrinologist regarding my osteoporosis treatment and that my testosterone has not recovered ,don't know what they will do, been reading horror stories regarding osteoporosis drugs can't take bisohosphonate infusions because of my hiatus hernia so it looks like romosozumab with increased risk of heart attack and stroke they are serious drugs that's if I decide to take them.
User
Posted 01 Dec 2022 at 16:45

Since my last post, my PSA is now down to 1.05... so the combination of enzolutamide and triptorelin seem to be working well to supress the existing cancer in my groin lymph nodes. 

Nov 2023

This year is a year of two halves. As my PSA had come down to 0.3 in April, I agreed to halve my enzolutamide dose to two tablets per day. I felt much better - less fatigue, breathlessness.  Unfortunately, my psa started to rise again. So two months ago, I reverted to full dosage (4 a day). The psa has continued to rise and is now 8.91. I'm waiting for a review by my consultant and hope to have an mri to establish where the cancer has migrated to.

Feb 2024

A psma scan in December showed cancer in two lymph nodes under my diaphragm - in addition to the seven in my groin. Consultant recommended  I have a BRCA gene test which, if positive, means I can be treated with the same drug as breast cancer patients. Still waiting for the result ( 8 weeks since giving a sample). Meanwhile, my psa has climbed to 80.6 so I'm hoping to go on a clinical trial asap

Nov 2024

I didn't have the BRCA gene and by the time that result was known, my psa was 125. Many lymph nodes lit up on an mri scan.I then had 10 cycles of cabazitaxyl. After 5 cycles my psa was 40 but after 10 it had gone up to 123. An mri scan in October revealed that although my psa was high, most of the cancers in the lymph nodes had disappeared leaving only 3 with cancer! I am now on an additional hormone called stilbestrol and am due for a review at the end of the year. Feeling tired, poor appetite but very relieved.

Edited by member 05 Nov 2024 at 22:41  | Reason: Update

 
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