visit to London MO today for more hormones ( switched to 3 month Zolodex because last months Degarelix injection is still a nasty swollen red lump on my stomach) I picked up my Apalutamide and had blood tests as ever with a face to face consult.
I decided to ‘soft land’ the subject of a hormone holiday if I stay undetectable till July ( 18 months of ADT) and 12 months of advanced hormones.. He winced twice during the convo ( in Dec 2021 I had skeletal mets popping up everywhere). I did say Finland MO said we’d consider it in Juky 23. Despite the wincing he said it ‘ wasn’t a stupid idea’ and stated you can feel immediately better after coming off ADT. Anyway months to go yet but at least he thought/ convo is open/ on the table. I get to discuss my scans with the clinical trial docs ( OVM-200) on Monday so should have an up to date picture on my mets ( last scan showed NED but of course the micromets will be lurking! Should I consider a trip to Perth like MateoBeach for Lu-J590 before considering a hormone holiday?
still no feedback on an immune response from OVM-200 but will be asking!
I really would like a ADT holiday but what if I undo the undetectable position..,
Anyway mulling really whilst knowing there is great knowledge in this wonderful forum that may guide me!
Thanks all
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Brysonal
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They have to change regularly the site of the firmagon injection.
I having that injections since June 2018 and I know the problem.
If you hope for a drug holiday or BAT than Degarelix is the way to go. I understand all the issues with Degarelix. If they inject into the old scar tissue from the previous injection than it is bad. They should know better. I feel sorry for you. I also ended up in the emergency department with high temperature.
Can you do the injection yourself? I can sand you the video.
Thanks all for the input, lots of food for thought and reading here on moving to intermittent and what type of ADT to use. I don’t think Orgovyx is available at all in the UK ( even out of pocket funded ) but I will look into and start to learn about intermittent ADT v continuous. Thanks all for the input.
A massive dilemma. I can understand the desire for a holiday after all that you have thrown at it but equally understand the worry that you don’t want to let it back after all you have done. No easy answers I suspect and comes down to personal choice. Good luck with whatever you decide. I am currently on holiday but not non detectable and the plan is to monitor PSA until it gets to a level where I can scan but that has its own risks
TA recommends against a holiday except if you can't really stand the ADT well. It shortening your life expectancy according to TA.
For me ADT was nothing during the first let say 2 years, but now I feel it.
What's about BAT? I am not recommending it as I am not an expert, only my idea. At least you could build up some knowledge about BAT. You don't have to implement it now, maybe in the future.
I am also thinking about BAT, but difficult to make a decision as I don't have visible mets now. My last PSA 2 months after radiation of my prostate is 0.51 and going down on Degarelix alone.
I have been on Zoladex 3 monthly injections in the tummy for the last 5 years. My last Zoladex injection I got a big lump on my tummy that went red and has now scabbed over and is going away 3 1/2 weeks after injection.I put it down to an inexperienced nurse using the big needle.
I have done 3 out of 6 Lu177 infusions now. My PSA ( always low has come in at 0.02 to 0.03 the last 3 times down from 0.2 or so pre Lu177. The CT and bone scans indicate no new progression and some decrease in size of Mets at C3 and T8 to T12 .. my MO is ‘happy with the positive progress of the Lu177. Have got some dry mouth, thinking of getting a Salipen as food tasting bad and can’t handle any spicy!
The scans by the trial protocol are just CT and bone scan looking for any progression. It would be good to do PSMA PET or NaF PET to get a better idea how well the Lu177 is working?
I like your idea of a possible holiday Brysonal. After 5 years of Zoladex ADT / Zytiga and now Lu177 and Zoladex ADT I could sure use some testosterone. Maybe BAT or mBAT instead of your chemo and OVM-200?? I have lost 40lbs since June 2022 and I’m putting that down to loss of appetite and taste due to dry moth.
As well as I could wish for given in Dec 21 I had skeletal mets popping up everywhere:
CH Tower 5th Floor Institute of Nuclear Medicine
Tower 5th floor, University College Hospital, 235 Euston Road
London
NW1 2BU
Exam Time:
13/01/2023 14:08
Sex:
Male
Reason for Exam:
ovm 200 100 trial. prostate cancer with bone mets. needs staging bone scan at week 8 of trial
Clinical indication:
ovm 200 100 trial. prostate cancer with bone mets. needs staging bone scan at week 8 of trial
Comparison:
Wholebody bone scan of 19/10/21.
Findings:
There is mild uptake in the right patellofemoral, knee, ankle, midfoot, and first MTP joints in keeping with degenerative arthropathy. There is mild focal uptake of the acromioclavicular, glenohumeral, sternoclavicular, wrists joint which appears physiological.
No suspicious focal uptake.
The pevious areas of focal uptake at the 5th costovertebral region and in the upper thorasic spine posteriorly are no longer visualised.
Conclusion:
No evidence of bone metastases/metabolically active lesions on bone scan.
My old footballing injuries in evidence but not my mets
I had a lot of treatment Dec 21-June 22 in a ‘throw the kitchen sink approach’ finally going undetectable in June 22 but not idea what did what!
Hi Smurtaw, Thanks for this I haven't actually asked my private health insurance co in the UK this (BUPA) as i wasn't sure it was even available but I am going to enquire on the grounds i am reacting badly to the injection. Thank you for the prompt, things change all the time and I work full time and have been advocating for myself to get SOC plus for over a year and feel the ADT has impacted even on my drive to do this so its a kick i needed to ask 1 more non SOC question and see if i can force a hand here!
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