Just had zoladex implant number 9. That means it will be out of my system on about 1st of May. I've been on HT for two years along with some HDR brachy and EBRT.
So what did I think of it?
Well side effects weren't too bad. Hot flushes were minor, I tried evening primrose oil, it may have helped but this was hardly a controlled trial.
My weight hasn't changed, but I think muscle has declined and fat gone up.
ED physically things do just about still work. Unfortunately I seem to have shrunk, I hope this is because I'm never actually excited about sex, and things may improve.
Complete lack of libido is worst problem. I still find women attractive but just don't get any frisson of excitement when interacting with them. I know you're thinking, "surely Dave didn't get excited just by going to the checkout at Tesco to buy a newspaper?" well no I guess not, but I'm sure life just seemed more lively before zoladex.
In the film Harry met Sally there is a scene discussing whether a man and woman can just be friends, I'm not going to rehearse the arguments see the film if you're interested. On balance I'd say I got on better with my female friends when on zoladex, but it's too high a price to pay.
As you can see I've tried to make the best of this treatment by treating it as an opportunity to observe life from a different perspective. So at least I'm still learning.
Anyway I'm looking forward to getting my mojo back. I know it will take a while probably a year or so. I also guess now I'm flying solo the psa tests will be rather important, they are <0.1 at the moment next one not due until mid May when zoladex will have been out the system a couple of weeks.
I'll keep you all posted on my recovery.
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Just had zoladex implant number 9. That means it will be out of my system on about 1st of May. I've been on HT for two years along with some HDR brachy and EBRT.
So what did I think of it?
Well side effects weren't too bad. Hot flushes were minor, I tried evening primrose oil, it may have helped but this was hardly a controlled trial.
My weight hasn't changed, but I think muscle has declined and fat gone up.
ED physically things do just about still work. Unfortunately I seem to have shrunk, I hope this is because I'm never actually excited about sex, and things may improve.
Complete lack of libido is worst problem. I still find women attractive but just don't get any frisson of excitement when interacting with them. I know you're thinking, "surely Dave didn't get excited just by going to the checkout at Tesco to buy a newspaper?" well no I guess not, but I'm sure life just seemed more lively before zoladex.
In the film Harry met Sally there is a scene discussing whether a man and woman can just be friends, I'm not going to rehearse the arguments see the film if you're interested. On balance I'd say I got on better with my female friends when on zoladex, but it's too high a price to pay.
As you can see I've tried to make the best of this treatment by treating it as an opportunity to observe life from a different perspective. So at least I'm still learning.
Anyway I'm looking forward to getting my mojo back. I know it will take a while probably a year or so. I also guess now I'm flying solo the psa tests will be rather important, they are <0.1 at the moment next one not due until mid May when zoladex will have been out the system a couple of weeks.
I'll keep you all posted on my recovery.
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Originally Posted by: Online Community MemberShould I ask to have Testosterone checks as well as PSA tests so we can correlate any rise in PSA with the rises in Testosterone? I don't know if this is standard procedure anyway or something I would have to ask for.
It's not standard, but it's difficult to interpret your PSA without it, so I would certainly suggest asking for it with PSA tests until your Testosterone has recovered. I did ask once while I was getting a PSA check when on hormone therapy, and my GP ticked the extra box without any problems.
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I would ask the onco - if the PSA rises without the hormone suppression, to what PSA level would s/he be comfortable with, at what level would s/he consider it to be biochemical recurrence and at what level would s/he start treatment.
It varies so much from region to region - Bri's consultant said (when he was finished with the salvage treatment) that she wouldn't take any action unless his PSA reached 20 ... others have a benchmark of 5 or 10.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi, Just had a six month checkup with onco (well clinical nurse to be precise), over the telephone, nothing exciting to report. Last PSA was <0.1 so I'm still under the influence of ADT. Nurse said expect about 6-12 months before improvement in libido, ED etc. which is what I was expecting.
Next appointment will be in six months. I asked about testosterone tests, she was indifferent to the idea. She said you can ask your GP if you want, but they wouldn't change treatment based on the figures coming back so little point in getting tested. Now I know Andy62 would disagree and being a bit of a geek myself, I would like to track Testosterone vs PSA so I will try and get both tests.
She was not very committal on a PSA level for BCR, and treatment, she seemed to suggest > 2 might start further investigation. PSA velocity and years since treatment would be as much a factor as absolute PSA level when assessing things. She said my onco would be unlikely to want to start any further treatment until PSA > 10.
Anyway nothing too surprising in any of that. I'm happy to wait until November for next tests and appointment. If I manage to go the rest of my life with cancer appointments as dull as that I will be very very happy.
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Chris, best wishes from me too. Very difficult decisions, and I admire your brevity.
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Nice post Dave, my fingers are certainly crossed for you. I’m finding it awfully difficult at the moment knowing I’m going to have to go on HT for the rest of my life soon at 52 , when essentially I’m fully recovered sexually after surgery 4 1/2 yrs ago. I’m finding all the posts from men and women about loss of libido heartbreaking :-((
If life gives you lemons , then make lemonade |
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I'll be interested in your progress reports, Dave. I come off bicalutimide in 12 days' time, having been on it for 18 months, so I'll be charting my progress, too. As I understand it, bicalutimide is flushed from the body relatively quickly, so I hope for some evidence of that before too long.
Best wishes,
Chris
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Love the attitude, and it's very much what I'm doing too.
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Small milestone: Exactly 12 weeks since the last Zoladex. So I am officially saying today is my last day of treatment. As posted on another thread, and now updated in my profile: my most recent PSA was taken on 24 April result was <0.1 which I am very happy with. I wanted that PSA test as close to possible to the last day of ADT so I could draw a nice line in the sand and say "I finished active treatment and PSA was <0.1", that gives me a nice benchmark for all future PSA tests.
(I would have preferred PSA test about a week later, but with Covid I took first GP appointment I could get).
Next Onco appointment is 21 May, this will be by phone. These have all so far been six monthly checkups. A few questions for the community:
Should I ask to switch to 3 Month checkups as I am now off Zoladex and things could start to advance ?
Should I ask to have Testosterone checks as well as PSA tests so we can correlate any rise in PSA with the rises in Testosterone? I don't know if this is standard procedure anyway or something I would have to ask for.
My side effects weren't too bad, apart from obvious loss of libido. I know it will probably be from three months to a year to recover from Zoladex, and some people never fully recover, but I am certainly glad to be off the stuff.
Edited by member 27 Apr 2020 at 14:14
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Originally Posted by: Online Community MemberShould I ask to have Testosterone checks as well as PSA tests so we can correlate any rise in PSA with the rises in Testosterone? I don't know if this is standard procedure anyway or something I would have to ask for.
It's not standard, but it's difficult to interpret your PSA without it, so I would certainly suggest asking for it with PSA tests until your Testosterone has recovered. I did ask once while I was getting a PSA check when on hormone therapy, and my GP ticked the extra box without any problems.
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Thanks Andy (I almost typed in "this question is for Andy62 to answer") I shall ask onco on 21 May.
Edited by member 28 Apr 2020 at 12:31
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I would ask the onco - if the PSA rises without the hormone suppression, to what PSA level would s/he be comfortable with, at what level would s/he consider it to be biochemical recurrence and at what level would s/he start treatment.
It varies so much from region to region - Bri's consultant said (when he was finished with the salvage treatment) that she wouldn't take any action unless his PSA reached 20 ... others have a benchmark of 5 or 10.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thanks Lyn, I will add these to my list. Because my post treatment psa has always been <0.1 and side effects minimal, there has not been a lot to say at these meetings, but I do feel I'm now entering a new stage post ADT and I might need to be a bit more on the ball.
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Hi, Just had a six month checkup with onco (well clinical nurse to be precise), over the telephone, nothing exciting to report. Last PSA was <0.1 so I'm still under the influence of ADT. Nurse said expect about 6-12 months before improvement in libido, ED etc. which is what I was expecting.
Next appointment will be in six months. I asked about testosterone tests, she was indifferent to the idea. She said you can ask your GP if you want, but they wouldn't change treatment based on the figures coming back so little point in getting tested. Now I know Andy62 would disagree and being a bit of a geek myself, I would like to track Testosterone vs PSA so I will try and get both tests.
She was not very committal on a PSA level for BCR, and treatment, she seemed to suggest > 2 might start further investigation. PSA velocity and years since treatment would be as much a factor as absolute PSA level when assessing things. She said my onco would be unlikely to want to start any further treatment until PSA > 10.
Anyway nothing too surprising in any of that. I'm happy to wait until November for next tests and appointment. If I manage to go the rest of my life with cancer appointments as dull as that I will be very very happy.
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I just thought I would update this thread. Nothing exciting to report, but I guess that is a good thing. Zoladex has been out of my body for about four months. I have occasionally had a hot flush perhaps two or three times and that has tended to coincide with the hot weather we had in June/July. So that implies the ADT has not reversed.
Libido is still almost non existent. I did have an erotic dream the other night, so maybe some testosterone is thinking about coming back. I do occasionally think about having a "tommy the tank" (rhyming slang) but then often think "I can't be bothered".
Physically things do work, I have reasonable orgasms when I can be bothered, completely dry, but that saves on kleenex so I can't complain. Erection definitely not firm enough for penetration.
Four months is probably too early to expect recovery from HT, most people suggest at least six months going out to two years. I will probably next update this thread in December after my next scheduled follow up.
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An erotic dream seems encouraging Dave - don't forget that you are dealing with the emotional fallout of having finished treatment so the returning testosterone has a bit of an extra hill to climb.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Dave, watching this thread, as I've been told I can stop HT now. I already had my next injection waiting in the fridge and I'm not getting bad side effects, so I said I'd do that one more and then stop. It should run out in time for Christmas.
You should force yourself on the issue of "tommy the tank". That's one of the things caused by hormone therapy - you have no impetus to have erections, but you must do so to keep the old John Thomas working - the old use it or lose it. You may find that using erotica or soft porn helps. For soft erection, ask for Sildenafil or Tadalafil - these amplify the effect of an erection in your penis. If it's soft because not much arousal signal is getting there, the Sildenafil or Tadalafil will help. You do want to get as hard as possible because that's what prevents, and to some limited extent, reverses fibrosis (only recent fibrosis can be reversed). If the Sildenafil or Tadalafil don't help, it may be soft because of fibrosis of the corpus cavernosum (erectile part of the penis). A pump can help here, as it can reverse some of the more recent fibrosis. Fibrosis prevents the corpus cavernosum expanding as much as it did, in both length and girth. Due to the way erections work, a reduction in girth reduces rigidity. If you can get a hard erection without the pump (e.g. with Sildenafil/Tadalafil), that's even better as it applies to the whole penis, whereas the pump only does this on the external half of the penis.
Just to add, hot flushes going is probably not a good indicator of testosterone return - it can continue some time after the return. It's caused by a complicated messing up of hormone signalling in the hypothalamus, rather than just simply by loss of testosterone.
Edited by member 08 Sep 2020 at 07:57
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Following this thread too, had my last prostap3 injection 21st Aug so runs out 21st Nov...its like I'm waiting for Christmas lol
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OK I'm a bit angry. I hope I don't rant too much.
[deleted this bit as they did do the right test, just added another test in for an unrelated issue which confused me. ]
In other bad news: testosterone result did come back as 1.3 nmol/L which is way below normal range of 8.4-28.7 so six months after finishing two years of Zoladex, the testosterone is not looking good. Not too sure what to do about that?
Edited by member 25 Jan 2021 at 22:50
| Reason: Deleted rant about wrong test being done.
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Well age is in your side. I spoke at length with my Oncologist last week in Acute Oncology ward , but he warned if I tried just one 3 month dose it may take 8 months to recover aged 53. So then I would have wasted 11 months quality of life maybe ?? Just too hard to make a decision
Edited by member 19 Nov 2020 at 21:17
| Reason: Not specified
If life gives you lemons , then make lemonade |
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I have some incomplete data to share if it helps anyone. This is just a single 3 month Prostap injection
14th May (before Prostap 3) - testosterone 15.7 nmol/L
26th May (Prostap injection) - 3 months
28 July - testosterone 0.4 nmol/L
26th August (Prostap out of my system?)
29 October - testosterone 1.1 nmol/L
10 November - testosterone 7.4 nmol/L (just below normal)
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Originally Posted by: Online Community MemberIn other bad news: testosterone result did come back as 1.3 nmol/L which is way below normal range of 8.4-28.7 so six months after finishing two years of Zoladex, the testosterone is not looking good. Not too sure what to do about that?
Make sure to include testosterone in all your PSA tests until it's back in normal range (that's what my onco has asked for). I would not be unduly worried, unless it doesn't rise anymore. From what I've heard, anything up to 15 months to get testosterone back seems to be not uncommon. One guy I know had it all back within 3 months, but I think that's rare. It was probably somewhere around 0.2-0.4 on Zoladex, and 1.3 is above castrate level.
I've had my last Zoladex now, and counting down the days until the 3 months expires. My next PSA test is due, but I'm slipping it until about 10 days before the end of the Zoladex, so I catch my final hormone therapy testosterone level too.
Sadly, I never knew what my normal testosterone level was - I never had it measured before starting hormone therapy. Knowing what I know now, I would have asked for a test before starting HT.
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OK my rant about the thyroid test, was not entirely justified. I have no idea why they did the thyroid test [edit: I now know why they did the test it was for another issue I just didn't know they were going to do it] , I assume it was a mistake, but anyway I have just had psa results come back, so they must have done two tests from the same sample.
Good news is psa <0.1 I expect that is not too surprising as per my previous post, testosterone is still very low. Anyway two and a half years after diagnosis. Two years after RT and six months after finishing ADT. That is the result. Needless to say with such low testosterone I still have no libido. I'm seeing onco next week.
Thanks Chris, I know you have had to make some tough calls with this disease.
Wonky donky, thanks for those figures. Three months ADT took about six months in total to recover from.
Andy, I just know we are going to get a detailed plot of your recovery as it happens. I'm looking forward to it.
Edited by member 25 Jan 2021 at 22:55
| Reason: Thyroid test not a mistake
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Hi Dave,
just noticed this conversation. I had 3 years of Zolodex and it was about 15 months before I was aroused and that started during sleeping., It was a nice shock to wake up with a hard on! lol, but it took another couple of months before a proper erection happened and that was with the help of Sildenfel! 30 months after my last Zolodex and i can maintain an erection hard enough for sex but sometimes i need that blue pill to help! the worst side effect was a reduction in girth and length, not nice but at least it still works.
Here's my PSA results since I finished Zolodex
April 2018 0.06 [ last Zolodex]
Oct 2018 0.06
April 2019 0.18
Oct 2019 0.91
April 2020 0.92
Oct 2020 1.50
I know its different for everyone else but you might find it helpful.
keep up with the five knuckle shuffles!