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Moving forward after PSA 8.7, G9, T3b. HT, HDR Brachytherapy & whole pelvis RT.

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User
Posted 16 Jul 2023 at 22:34

Moving forward after PSA 8.7, G9, T3b. HT, HDR Brachytherapy & whole pelvis RT.

 

It's 12 months since our PCa journey started. 7 1/2 months since brachy & 5 1/2 months since RT finished.

No blood or mucus in his stools for 4 months, and only getting up once during the night to pee. 

He's regularly using the pump we got from Lovehoney. And since getting it, we've had lots of fun & laughter using it, as he says he's 10 times more sensitive, and everything tickles πŸ˜‚

His hot flashes happen mostly in the evening, with only a couple during the day, and they don't last long.

The fatigue isn't too bad during the day, but around 6/7 o'clock, he's more than ready to chill. 

The muscle & joint ache is fine while he's moving around, but after sitting down for just 10 minutes, he says he feels 100 years old when he stands up again.

He's keeping as active as possible to fight the weight gain that's showing itself round his middle.

On the 28th of May, we celebrated our 20th wedding anniversary, with a three day motorcycle trip around the NC500. We did Wigan to Inverness, through the Cairngorms. Inverness to Thurso, over Bealach na Bà, and through Gairloch, Ullapool & Durness. Then Thurso back to Wigan. He expected to be exhausted when we got home, considering he doesn't feel quite as strong as he used to, but he said he felt fine. 

He asked me a while ago, to stop telling him about things I'd learned on here. He said he doesn't need the constant reminders, would rather think that he is cured, or pretend he doesn't have it, and that he'll deal with side effects or problems, if & when they arise. 

He takes a multivitamin & a vitamin D every day.

 

I have a few questions that I'd like to ask please.

A friend mentioned that eggs are the worst thing he could be eating, and also that milk isn't good either. Does anyone know if this is true?

He's had four Prostap3 injections so far, with 4 more to go. What would happen if he decided not to have anymore? Not that he's thinking that way, it's just me wondering.

He's spent most of his life around motorbikes & lorries. Up to his eyeballs in grease and oil, & occasionally swallowing a bit of petrol after syphoning it between his motocross bikes in his youth. Could this be the cause of his cancer?

He was also a heavy drinker, going to lots of rallies & bike meets. It's almost 10 years since he decided he'd had enough of it, and never touched a drop again. Could that be the cause of his cancer?

His first 6 monthly review is at the beginning of August. So we're off to our favourite place, Scotland, for a few days with the kids the week before. 

Thank you in advance to anyone who can answer my questions.

Elle x

 

 

 

 

User
Posted 07 Aug 2023 at 13:05

If he had a prostatectomy then his PSA should be near zero. But he has a prostate and that means he will have some PSA. I assume that 0.3 is the lowest result he has ever had (this is called the nadir) by current guidelines if his PSA stays below 2.0+nadir=2.3 he is in remission (no medic will ever use the term cured for a cancer patient until he has died of something else, a medic may say "consider yourself cured").

If you correct your "busybody" on their incorrect assumption, they will only search for something else and misinterpret it in some doom ridden way. If it is one of your children they deserve to be treated with respect and informed of the situation correctly. Anyone else I would just smile, and ask them if they would like to make his remaining short life as good as possible by buying him his dream motorcycle.

I used the word "fine" in my previous post. I would have used the word "excellent" if it had been 0.2, because there is some evidence that if his PSA drops to 0.2 or less within the next four years, then he has 98% chance of remaining in remission for another ten years. Just because it is not yet 0.2 does not mean it won't drop in the future, and even if it does not drop, it just means it's chance of returning within a decade is some figure greater than 2% though it may still be a very small number.

Obviously your busybody friend would misinterpret the above paragraph as anything above 0.2 means imminent death.

 

Dave

User
Posted 21 Feb 2024 at 20:27

Hi Elle, 

I had a prostatectomy a year ago and I'm not on any cancer medication but I can relate to the holiday incident.

About 6 months ago we went away for a 4 day break at a hotel country park. We'd only just unpacked and I felt dreadful, anxious and insecure. This mental anguish started to make me feel physically unwell. We got changed for dinner and I couldn't eat a thing.

I couldn't settle all night, hardly slept a wink. My wife could see how much I was struggling. We packed our cases before breakfast and headed back home. I'm sure in my case it was a psychological problem, like a lengthy panic attack that was so powerful it lead to physical symptoms.

Edited by member 21 Feb 2024 at 20:28  | Reason: Typo

User
Posted 21 Feb 2024 at 20:37

Oh Elle, I feel for you and Gee, how awful for all the family.

I remember shortly after starting on Prostap 3, I completely lost ALL my sanity, I went into a spiral of anxiety. I would be fine one minute and then in a terrible state of despair the next. I distinctly remember(and I’ll NEVER forget), my wife and I had organised a trip to Arran for the day with my son and 2 wonderful grandsons. I was trying so hard to stay strong and cheerful for my grandsons but all I wanted to do was sit down and cry my eyes out. We managed to get through the day….just! But that was a turning point for me. I knew I had 3 years of this and if I was to be like this for 3 years I would not survive it. So, I decided I was going to give sertraline a go and although it took a while to kick in(4-5 weeks) it has made such a difference to me. I can’t say it will help Gee and as you say he’s close to the end of his Prostap(lucky man😊), but from my point of view the anxiety is going to get worse when I come off the HT as that’s when I’m really going to know whether the treatment has worked. so, I think it might be worth talking to his GP about it….what has he got to lose? He won’t be put on a high dose so should be able to wean himself off it. My GP was very understanding and had no issues in prescribing it for me.

As for Maggies I would have NEVER tried it…..until my wife cajoled me INTO trying it and the support I’ve had has been incredible.

You’re family member just has no idea and should be pitied. They have no idea what Gee and you are going through.

I hate this Prostap, I hate what it’s done to me and I can’t wait to be rid of this poison. Yes, it’s hopefullyhelping cure me, but from what I now know I think there are kinder ways of achieving the same result. If you’ve followed my journey you’ll know the side effects I’ve suffered and I wouldn’t wish them on my worst enemy. Very much like Gee in fact except for fatigue ..which for some reason I’ve NOT suffered from.

I’m determined though to give myself the best chance of a cure but if my Onco turns round and says to me that I don’t need it any more I think I will kiss him…maybe not the wisest thing to do because he’s not the most empathetic character.🀣🀣🀣

Whatever you do, I hope Gee starts to feel a bit more normal, and that when he stops Prostap he will regain some of his mojo back quickly.

Derek

User
Posted 21 Feb 2024 at 21:32

Originally Posted by: Online Community Member
... if it's worth it with being so close to the end of treatment. ...

Well there's a lot to take in with that post. The only bit I can attempt to answer is the above question. Yes it is worth it.

A lot of us with health problems and men in particular just plod along hoping it will get better, and procrastinating. He is not near the end of treatment he may have another two prostaps and even if he doesn't have any, it will be six months to a year before his hormones are back to normal. 

It may not even be the hormone treatment which is the cause of his current problems. So if he delays getting this mental health problem sorted now, it will probably be another year before he actually goes to the GP about it, and that is a whole year of misery for something which may be an easy fix.

I don't know whether sertraline is the right answer, that's for your GP to decide, but getting help now is the right thing to do.

 

 

Edited by member 21 Feb 2024 at 22:07  | Reason: Not specified

Dave

User
Posted 23 Jul 2024 at 00:40

A PSA bounce at 18 months post RT is very plausible. I do believe for most people the HT keeps the PSA so low that a bounce can't be detected, but I can't remember the timeline of PSAs for everyone on this site so you could do with further replies to get a better picture.

With his nadir at 0.2 you should not worry unless his PSA gets to 2.2 . I would be surprised if the onco said continue HT in September there is nothing at present to say his treatment is not going to plan.

Dave

User
Posted 16 Jul 2023 at 23:27

Hi Elle Jay,

interesting to hear your/his story, I’m amazed at the number of wives/partners on this forum.

I can sympathise with the side effects, I know what you’re both going through.

I found the Lovehoney pump ok apart from the ball used to squeeze the air out…didn’t seem to work effectively. I’ve now got the Somacorrect for my Peyronie’s disease and it’s infinitely better. Don’t be fobbed off, if you think it will help fight for it. I also know about tickles😊 I find I am ultra sensitive to being touched in the right areas and gives immense pleasure. I don’t have ED but because of Peyronie’s,  penetration is just too uncomfortable. Still have lots of fun though and even the big O at times even though I have zero libido.

Ive (so far) not had any blood from either end, but it’s good it’s improved for you.

hot flashes…well you kind of learn to live with them. Nuisance but nothing like as debilitating as the joint aches. Yes getting up of a chair I feel like 100 at times and first thing in the morning is not good…my knees are the worst. I’ve started doing a lot of exercises to try and build up my muscles, going to the gym and pushing myself, more walking and less cycling(ebike). I also find swimming helps. I’m also exploring other things to see if they help with the aches.

weight gain….yes, put on about 5 kg since the end of RT, before then I was doing fine but now I struggle. Been on HT for a year now and another 2 to go😟 I tend to lose weight during the week and then put it all back on(and more!) at the weekend. I suppose the bottle of wine or two doesn’t help but you need pleasure in life. I’m VERY active but it doesn’t seem to make much difference at the moment.

glad you enjoyed he NC500…did you managed over to Applecross? really scary but beautiful.

to your questions…

I would have thought eggs would be good as they have protein, but maybe not with chips?πŸ˜‰ Milk also good because of calcium for his bones, but maybe drop to skimmed. I was actually surprised to learn that skimmed milk contains more calcium than full fat!

hes luckynhe’s only getting 8 jabs, I’ve got 12 in total. As I understand it the effects of the RT and HT together can kill off any microcells which weren’t detected by scans, so I think it’s worth putting up with the HT. incidentally I am also T3b so I’m told I the chances of having microcells is higher…which is why I was turned down for surgery.

It’s funny how different men have different ways of dealing with this disease. I was a bit like ‘him’(sorry don’t know his name) but once I started talking about it and joined Maggies it helped me come to terms with it and deal with the issues. Sounds like you are doing that for him which I suppose is the next best thing?

Sorry I can’t answer the questions about what could have cause the cancer…I don’t think any of us know.

Scotland is a wonderful place…..but I DO hope the weather improves for you, it been lousy recently.

All the best for you both,

Derek

 

User
Posted 17 Jul 2023 at 00:34

Glad you had a good trip on the NC500. I did it last summer, it is fantastic (weather permitting) and I'm convinced motorcycle is the only way to do it, though I have to give credit to a middle aged couple on a 1964 two stroke vespa, who I kept bumping in to, which implies they were keeping up with me on a 650. This summer I did the Northern Ireland coast.

As for your diet questions: eggs, dairy, etc. I don't know what the current thinking is, the advice changes about once a decade, so if they are currently bad just wait a few years and they will be good again.

Oil, grease and petrol: well unlike eggs and dairy which alternate between good and bad once a decade, no one ever says drinking petrol is good, ever. Glyphosate weed killer, sunlight, artificial sweeteners, natural sweeteners and sugar (well being fat anyway) all cause cancer, so in short the environment any person is going to find themselves living in probably all contributes to cancer, but unless you live on a dessert island (and have a good parasol) you are going to encounter knows and unknown carcinogens 

Alcohol and excessive partying: you can probably guess by now that I am in favour of these.

Originally Posted by: Online Community Member
... It's almost 10 years since he decided he'd had enough of it, and never touched a drop again. Could that be the cause of his cancer?..
it's an interesting theory, I've not heard anyone else say stopping drinking causes cancer, but I'll raise a glass to that theory.

Regarding stopping HT: It is almost certainly diminishing returns, the first two or three were almost certainly very beneficial, by the time you get to the last one it probably makes hardly any difference. If the side effects were intolerable stop early, but if reasonable carry on. If he stopped early and the cancer returned in five years, then you would be saying if only...

 

Dave

User
Posted 17 Jul 2023 at 01:28

Originally Posted by: Online Community Member
He asked me a while ago, to stop telling him about things I'd learned on here. He said he doesn't need the constant reminders, would rather think that he is cured, or pretend he doesn't have it, and that he'll deal with side effects or problems, if & when they arise.

As Decho said, we all have different ways of dealing with cancer and I have to thank the people here who have the dedication to deep research into the very complex details of the our challenge.

One of the side effects of suppressing testosterone is that cholesterol levels tend to rise, plus of course weight tends to go up and strength comes down. It could be worth keeping an eye on cholesterol levels. In terms of diet it's worth eating foods that aren't going to exacerbate the cholesterol problem. 

For your husband I'd say, keep physically active as number one, eat well without getting obsessive and do everything you can to keep enjoying life.

Jules

User
Posted 17 Jul 2023 at 16:55

Originally Posted by: Online Community Member
do different places do blood tests differently?

The only psa reading you've given us was pre treatment. Now, with him still on HT, the psa reading should be a lot lower but getting to your question, different testing services can give slightly different results and they can also vary in sensitivity so "undetectable" can vary from place to place. The key here being if a reading is given as <, the symbol for less than, it basically means they can't detect anything. For example < 0.01 is a very low reading, a satisfactory result and you can breathe easily. There are places that measure to much lower levels, like 0.000x but that level of measurement is uncommon and of dubious value in most cases.

Jules

User
Posted 17 Jul 2023 at 20:08

Hi Elle Jay,

I can't answer most of your questions, but the issue of eggs was raised by Dr. Michael Mosley (of the Zoe Health organisation, if that means anything to you?) recently in a podcast.  You can sign up to a weekly Zoe Health 'briefing' if you're interested.

His advice wasn't specific to people with cancer, so take it as worthy of consideration, rather than anything more. 

Regarding eggs, he advised that several eggs per week were fine, but don't overdo it.  It seems that they boost the immune system and increase the white blood cell count.

Hope this helps.

Best wishes,

JedSee.

 

 

 

User
Posted 28 Jul 2023 at 21:35
There is nothing to do before his blood test as nothing will change it one way or another.

As for your previous questions about the cause of his cancer, given the high percentage of men who have/will have PCa (>12% detected) there is no lifestyle choice that influences it positively or negatively - the only one thing that seems to be prevalent for some men is their hereditary history - father, grandfather.

If it was skin cancer or stomach/pancreatic/liver cancer etc then one of the things that you mention might be a contributing factor, but not PCa.

User
Posted 28 Jul 2023 at 22:01

L or J, not sure which is which :-) is still on prostap so it's  highly probable that his psa will be low and at a quite acceptable level. Some time after he stops taking prostap his testosterone levels will start to rise and with that his psa will go up somewhat and that's normal, but that's still a way off for you. 

Jules

User
Posted 31 Jul 2023 at 22:24
Good luck and all I can say is try not to let the anxiety feed off each other. One of you needs to break the cycle and look for the positives - even if you don't feel it.

Of course if you are both reading this then it ain't gonna work LOL

Best of luck!

User
Posted 31 Jul 2023 at 22:25

Worrying doesn't change anything, stop worrying.

Dave

User
Posted 01 Aug 2023 at 00:40
Regarding diet, HT will make any metabolic condition worse. The remedy for metabolic disease (blood sugar, cholesterol etc,) is low carbohydrate.

Stop worrying about fats, eat unprocessed low carb foods, so eggs are actually ideal. Un-fermented diary (milk) is probably an avoid, but traditional cheese and natural full fat yogurt are good. Lots of fatty fish too along with grass fed meats Inc offal. Leafy veg is "unlimited" potatoes and bread are a no no, fruit is probably in the same category as milk IE moderation.

I speak from personal experience by the way, I was on blood pressure medication for years as a vegetarian, since swapping to low carb I have lost 10kg and been able to come off all my meds (supervised by the GP). No other lifestyle changes.

User
Posted 04 Aug 2023 at 19:11

Yes that result is fine. Some of the cancerous cells are still alive, but can't reproduce. He also has healthy prostate cells, releasing PSA. 

Dave

User
Posted 08 Aug 2023 at 18:28

Diagnosed March 2018. G4+5, T3N0M0 PSA 25

HT straightaway for 2 years

HDR and EBRT Sept 2018.

PSA <0.1 all through HT.

Last HT April 2020.

Testosterone recovered Dec 2020. Now have ED but Viagra is sufficient to deal with this.

All PSAs since April 2020 have been either 0.1 or 0.2. 

I would never describe myself as fit, though I would describe myself as healthy.

I rather hope I will be in the group of people who never have recurrence, though being 59 and having a life expectancy of about 85 I am a realist and would expect a recurrence at some time over the next 26 years, but I'll cross that bridge when I get there.

 

Dave

User
Posted 19 Jan 2024 at 19:09

Where we're at, almost twelve months since RT ended.

Urology appointment yesterday, the first one since diagnosis. Nothing to report, though the consultant insisted on an immediate PSA test. A tiny bit annoyed at this, as even though it's due in three weeks, Gee had joined the PEASS pathway at The Christie, so that he doesn't have to have any face to face appointments unless requested, and to be able to be emailed his PSA results on the same day, so we were worried we'd have to wait til next week for the results, as the test wasn't done through one of The Christie's 'closer to home' phlebotomy clinics, meaning they wouldn't be able to access the results. Thankfully we received a phone call today from a urology nurse, to say his PSA is now 0.2, down from 0.37 six months ago πŸŽ‰

 

Current side effects;

Hot flashes during the day.

Fatigue.

Heartburn when lying down, so goes to sleep propped up.

Sleeping 9pm til 4am, and waking 2 - 3 times to pee.

Two bowel movements every morning before 7am.

Recently started feeling much weaker, and says his motorbike feels twice as heavy, though he's still riding.

Joint & muscle ache, which has become considerably worse since the 6th Prostap3 injection two months ago. He says his elbows are the worst affected.

ED, so using the pump every day.

Zero libido.

Brain fog.

Emotions constantly up & down.

Still on Tamsulosin.

Had 6 of 8 Prostap3.

 

Other than all that, he says he's feeling good, is living life as normal as possible, and is looking forward to 5 months without thinking about a PSA test. No doubt the anxiety will start creeping in a month before the next one.

At the moment he's only taking a multivitamin, and eats & drinks like before diagnosis, which was already quite healthy. The only thing he's given up, is anything fizzy, as it gives him terrible gas, and the farts seem to rattle his cheeks in a deafening manner πŸ˜‚

 

Best wishes to all on the forum.

 

Elle & Gee

 

xx

User
Posted 20 Jan 2024 at 13:08

I just looked back at some previous posts, and saw that I used "fine" to describe a PSA of 0.3 and said I would use "excellent" if it were 0.2. 

So Excellent it is then.

I bet your hypochondriac friend will be sad to hear the good news.

Sorry to hear about all the aches and pains etc. it's not the best weather for motorcycling I'm sure come spring things will start to feel better.

Dave

User
Posted 21 Feb 2024 at 19:28

Does anyone know if a side effect of Prostap3 is that it makes you feel like you're going insane?

 

On Sunday, the four of us set off early for a few days away in Aviemore, while it's half term. Everything was fine on the journey there, with some lovely castle stops along the way. We checked into the hotel mid afternoon then went for a walk into town. On the way back we stopped for fish & chips, then strolled back to the hotel. Gee went for a soak in the bath, as he said he was stiff after all that driving (I don't drive). On coming out of the bathroom, he began to make us a drink, but said he felt strange, and was as white as a ghost. Before the kettle had even boiled he said he needed to go outside for some fresh air. We both went out, and he said he wanted to sit in the car and listen to some music for a bit. We hadn't been in the car five minutes when he started crying uncontrollably. Two minutes passed, then it changed to rage, and he was thumping the steering wheel. Another two minutes, and he was panicking & hyperventilating. He said it felt like he was having the life sucked out of him. It seemed to take forever to calm him down, and when he did, we went for a short walk. He did his best to compose himself as we went back to our room, but as soon as we stepped inside, he said he could feel the weird feeling washing over him, and that he couldn't stay in the room as it felt claustrophobic and was suffocating him. I asked what he wanted to do, and he said he would rather drive the 330 miles home than stay there. So I went to tell the boys to pack up their things, I packed up ours, and we left for home at 6.15pm, arriving back just after midnight. 

On Monday he said he still felt strange, like he was inside a glass case looking out. He said he felt dithery and had no appetite, but didn't feel ill.

Tuesday, he started to get his appetite back, but still wasn't feeling himself, so made an appointment with his GP, though it's not til next Tuesday. 

Today (Wednesday) he says the shakiness has gone, and he feels more like himself, but there is still an odd feeling lingering at the back of his mind. 

His 7th Prostap3 is on the 8th of March, and then his final one in June. 

He's trying to decide whether or not to ask about Sertraline, as some have mentioned on here, but is wondering if it's worth it with being so close to the end of treatment. I have looked to see where the nearest Maggie's group is, and it is at The Christie, though I doubt he would try that.

 

On a side note, I had a family member message me, to ask how we all were, and I, unfortunately, told her what was happening. Her response was that she thought Gee would've tried harder to stay there for the kids, (they're 16 & 20, easy going, lovely young men, who just want what's best for their dad), and that when 'men' get ill, they become selfish. Needless to say I have blocked and deleted said family member. 

Thank you to anyone taking the time to read this post.

Elle & Gee xx

User
Posted 22 Feb 2024 at 00:16
I'm with Dave, Elle - it sounds like an awful few days for you both but I wouldn't assume that it is to do with the HT. Anything else going on? Stress at work?

The family member .... yuck! You can do without that kind of negativity in your life.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Feb 2024 at 18:05
I was on Zoladex for 3 years including 2 years with abiraterone & enzalutimide as part of trial. Whilst I never got the panic/anxiousness etc that you describe I would certainly just start crying often for no apparent reason. I may have been driving, walking, having a shower etc and it would just start. Other times it would start for a reason such as seeing suffering on news, sad film, sad song etc. I was aware depression may happen and I ended up on antidepressants (prozac) for 12 months or so I think. I have to say that really helped.

As has been suggested ADT does affect us in many ways but always good to seek assurance it is 'just' the affects of medication & see if gp suggests any temp treatment.

Peter

User
Posted 05 Jun 2024 at 22:15

Hi Elle, 

Glad you got to the bottom of the Aviemore incident. Yes HT can have that affect, something quite trivial becomes quite upsetting, and indeed if he could have talked about it at the time it would have saved a lot of trouble, but such is life.

What an excellent idea having birthdays on the same day so much easier to remember them. Being on the Isle of Man with summer weather would be nice but, being on the Isle of Man with British summer weather is a different ball game.

Dave

User
Posted 22 Jul 2024 at 13:53

Gee had his latest PSA done last Thursday, through one of The Christie 'bloods closer to home' clinics, and received his results by email, mid-afternoon on Friday, from his PEASS (Prostate Easy Access Support Service) team. He also asked for a testosterone level test, as he had his 8th, and (hopefully) last Prostap3 injection six weeks ago, and wants to keep an eye on it going forward.

His results were, 

PSA 0.31ug/l (up from 0.2)

Testosterone 0.6nmol/l

He says that, since the last injection, the side effects have gotten significantly worse. Every joint, from his shoulders to his toes, is aching & stiff. He has to roll himself out of bed, and says his legs sometimes feel like they're about to give way. He's only getting around 2-3 hours sleep at night, but he'd rather be keeping active, than having an afternoon nap, and he still doesn't want to take the amitriptyline that his GP gave him.

Does anyone know if it is normal for PSA to rise while still on HT, and, when his case is reviewed in September, will the rise mean they want him to stay on HT for longer? 

Thanks in advance.

Elle & Gee x

User
Posted 06 Aug 2024 at 13:39

Thank goodness for that! Five days and a few emails later, we got confirmation this morning that the person who said he was due to have another had got it wrong, and he is only to have eight injections, as we originally thought. Just knowing that in five weeks time, the 'poison' will start leaving his system, has lifted his spirits no end πŸŽ‰

Elle x

User
Posted 06 Aug 2024 at 22:06
Great, it must be good to get that postive news. It will take quite a long time for the impact of HT to disappear, but I hope that month by month you will sense improvements.
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User
Posted 16 Jul 2023 at 23:27

Hi Elle Jay,

interesting to hear your/his story, I’m amazed at the number of wives/partners on this forum.

I can sympathise with the side effects, I know what you’re both going through.

I found the Lovehoney pump ok apart from the ball used to squeeze the air out…didn’t seem to work effectively. I’ve now got the Somacorrect for my Peyronie’s disease and it’s infinitely better. Don’t be fobbed off, if you think it will help fight for it. I also know about tickles😊 I find I am ultra sensitive to being touched in the right areas and gives immense pleasure. I don’t have ED but because of Peyronie’s,  penetration is just too uncomfortable. Still have lots of fun though and even the big O at times even though I have zero libido.

Ive (so far) not had any blood from either end, but it’s good it’s improved for you.

hot flashes…well you kind of learn to live with them. Nuisance but nothing like as debilitating as the joint aches. Yes getting up of a chair I feel like 100 at times and first thing in the morning is not good…my knees are the worst. I’ve started doing a lot of exercises to try and build up my muscles, going to the gym and pushing myself, more walking and less cycling(ebike). I also find swimming helps. I’m also exploring other things to see if they help with the aches.

weight gain….yes, put on about 5 kg since the end of RT, before then I was doing fine but now I struggle. Been on HT for a year now and another 2 to go😟 I tend to lose weight during the week and then put it all back on(and more!) at the weekend. I suppose the bottle of wine or two doesn’t help but you need pleasure in life. I’m VERY active but it doesn’t seem to make much difference at the moment.

glad you enjoyed he NC500…did you managed over to Applecross? really scary but beautiful.

to your questions…

I would have thought eggs would be good as they have protein, but maybe not with chips?πŸ˜‰ Milk also good because of calcium for his bones, but maybe drop to skimmed. I was actually surprised to learn that skimmed milk contains more calcium than full fat!

hes luckynhe’s only getting 8 jabs, I’ve got 12 in total. As I understand it the effects of the RT and HT together can kill off any microcells which weren’t detected by scans, so I think it’s worth putting up with the HT. incidentally I am also T3b so I’m told I the chances of having microcells is higher…which is why I was turned down for surgery.

It’s funny how different men have different ways of dealing with this disease. I was a bit like ‘him’(sorry don’t know his name) but once I started talking about it and joined Maggies it helped me come to terms with it and deal with the issues. Sounds like you are doing that for him which I suppose is the next best thing?

Sorry I can’t answer the questions about what could have cause the cancer…I don’t think any of us know.

Scotland is a wonderful place…..but I DO hope the weather improves for you, it been lousy recently.

All the best for you both,

Derek

 

User
Posted 17 Jul 2023 at 00:34

Glad you had a good trip on the NC500. I did it last summer, it is fantastic (weather permitting) and I'm convinced motorcycle is the only way to do it, though I have to give credit to a middle aged couple on a 1964 two stroke vespa, who I kept bumping in to, which implies they were keeping up with me on a 650. This summer I did the Northern Ireland coast.

As for your diet questions: eggs, dairy, etc. I don't know what the current thinking is, the advice changes about once a decade, so if they are currently bad just wait a few years and they will be good again.

Oil, grease and petrol: well unlike eggs and dairy which alternate between good and bad once a decade, no one ever says drinking petrol is good, ever. Glyphosate weed killer, sunlight, artificial sweeteners, natural sweeteners and sugar (well being fat anyway) all cause cancer, so in short the environment any person is going to find themselves living in probably all contributes to cancer, but unless you live on a dessert island (and have a good parasol) you are going to encounter knows and unknown carcinogens 

Alcohol and excessive partying: you can probably guess by now that I am in favour of these.

Originally Posted by: Online Community Member
... It's almost 10 years since he decided he'd had enough of it, and never touched a drop again. Could that be the cause of his cancer?..
it's an interesting theory, I've not heard anyone else say stopping drinking causes cancer, but I'll raise a glass to that theory.

Regarding stopping HT: It is almost certainly diminishing returns, the first two or three were almost certainly very beneficial, by the time you get to the last one it probably makes hardly any difference. If the side effects were intolerable stop early, but if reasonable carry on. If he stopped early and the cancer returned in five years, then you would be saying if only...

 

Dave

User
Posted 17 Jul 2023 at 01:28

Originally Posted by: Online Community Member
He asked me a while ago, to stop telling him about things I'd learned on here. He said he doesn't need the constant reminders, would rather think that he is cured, or pretend he doesn't have it, and that he'll deal with side effects or problems, if & when they arise.

As Decho said, we all have different ways of dealing with cancer and I have to thank the people here who have the dedication to deep research into the very complex details of the our challenge.

One of the side effects of suppressing testosterone is that cholesterol levels tend to rise, plus of course weight tends to go up and strength comes down. It could be worth keeping an eye on cholesterol levels. In terms of diet it's worth eating foods that aren't going to exacerbate the cholesterol problem. 

For your husband I'd say, keep physically active as number one, eat well without getting obsessive and do everything you can to keep enjoying life.

Jules

User
Posted 17 Jul 2023 at 12:33

Thanks for your replies guys. Call us Elle & Gee, as these represent our initials.

Jules, I've passed that on about the cholesterol, thank you.

Dave, I see I could've worded it better as I meant was it the heavy drinking that may have triggered something, and not the actual stopping. Though now I think about it, he did used to say that when he died, he'd be perfectly preserved cos he was always pickled πŸ˜‚ 

Derek, yes, we went over Bealach na Bà, we were there before 8am, so had it all to ourselves. The weather was perfect too. We Premier Inn hop when we go with the kids, and do things like walking, kayaking, fishing, and fish & chip eating. And we're always well prepared for the changeable weather. Our first destination this time is Glenrothes, so we'll be exploring that coastline. I can't wait to go over the Queensferry crossing. We've been over many times, and its magnificence never ceases to amaze me 🀩 

 

Not sure how to word this, but do different places do blood tests differently? His first one, was done at the local health centre, but the one he's going to have in a couple of weeks is at a Hospice in Little Hulton. It was the nearest one on the list of places to have it done, given to us by The Christie. Hopefully our time away will help distract us from the upcoming PSA results 🀞🏻

Elle & Gee 

 

 

 

User
Posted 17 Jul 2023 at 16:55

Originally Posted by: Online Community Member
do different places do blood tests differently?

The only psa reading you've given us was pre treatment. Now, with him still on HT, the psa reading should be a lot lower but getting to your question, different testing services can give slightly different results and they can also vary in sensitivity so "undetectable" can vary from place to place. The key here being if a reading is given as <, the symbol for less than, it basically means they can't detect anything. For example < 0.01 is a very low reading, a satisfactory result and you can breathe easily. There are places that measure to much lower levels, like 0.000x but that level of measurement is uncommon and of dubious value in most cases.

Jules

User
Posted 17 Jul 2023 at 17:27

Jules, thank you for that. We only have one PSA reading, and that's the very first one. He did have a blood test before brachy, but wasn't told what it was, and never thought to ask. 

Elle

User
Posted 17 Jul 2023 at 20:08

Hi Elle Jay,

I can't answer most of your questions, but the issue of eggs was raised by Dr. Michael Mosley (of the Zoe Health organisation, if that means anything to you?) recently in a podcast.  You can sign up to a weekly Zoe Health 'briefing' if you're interested.

His advice wasn't specific to people with cancer, so take it as worthy of consideration, rather than anything more. 

Regarding eggs, he advised that several eggs per week were fine, but don't overdo it.  It seems that they boost the immune system and increase the white blood cell count.

Hope this helps.

Best wishes,

JedSee.

 

 

 

User
Posted 28 Jul 2023 at 21:16

Enjoyed our much needed family time away in Scotland. When we got home yesterday, there was a small amount of blood again when he wiped, though non today. 

The anxiety is definitely rising due to his upcoming blood test on the 3rd, and first review on the 8th of August.

Is there anything that he should or shouldn't do before his blood test? Or is it not influenced by anything?

Elle x

User
Posted 28 Jul 2023 at 21:35
There is nothing to do before his blood test as nothing will change it one way or another.

As for your previous questions about the cause of his cancer, given the high percentage of men who have/will have PCa (>12% detected) there is no lifestyle choice that influences it positively or negatively - the only one thing that seems to be prevalent for some men is their hereditary history - father, grandfather.

If it was skin cancer or stomach/pancreatic/liver cancer etc then one of the things that you mention might be a contributing factor, but not PCa.

User
Posted 28 Jul 2023 at 22:01

L or J, not sure which is which :-) is still on prostap so it's  highly probable that his psa will be low and at a quite acceptable level. Some time after he stops taking prostap his testosterone levels will start to rise and with that his psa will go up somewhat and that's normal, but that's still a way off for you. 

Jules

User
Posted 31 Jul 2023 at 22:00

Looking through all our letters last night, and by chance, noticed we'd marked down the follow up appointment date wrong. Thankfully we haven't missed it, it's this Friday (August 4th) not the 8th as we thought. We managed to change the date of the blood test to this morning, though the nurse said he could've had it done Thursday as originally planned. Now trying to convince ourselves that it's good that we don't have to wait as long for the results, but with the blood test now done, our anxiety is off the scale. 

User
Posted 31 Jul 2023 at 22:24
Good luck and all I can say is try not to let the anxiety feed off each other. One of you needs to break the cycle and look for the positives - even if you don't feel it.

Of course if you are both reading this then it ain't gonna work LOL

Best of luck!

User
Posted 31 Jul 2023 at 22:25

Worrying doesn't change anything, stop worrying.

Dave

User
Posted 01 Aug 2023 at 00:31

You're right, I know, worrying changes nothing, and what will be will be. We're both positive people, so I know we'll take this in our stride too. And I'm glad to say I don't share my anxiety about it with him, and that he only sees things on here that I show him. He's usually an "Ah, f*** it!" and just get on with it, type of person, but he says, (and I agree), that at the minute, this waiting feels almost as stressful as waiting to find out his results 12 months ago. 

Elle x

User
Posted 01 Aug 2023 at 00:40
Regarding diet, HT will make any metabolic condition worse. The remedy for metabolic disease (blood sugar, cholesterol etc,) is low carbohydrate.

Stop worrying about fats, eat unprocessed low carb foods, so eggs are actually ideal. Un-fermented diary (milk) is probably an avoid, but traditional cheese and natural full fat yogurt are good. Lots of fatty fish too along with grass fed meats Inc offal. Leafy veg is "unlimited" potatoes and bread are a no no, fruit is probably in the same category as milk IE moderation.

I speak from personal experience by the way, I was on blood pressure medication for years as a vegetarian, since swapping to low carb I have lost 10kg and been able to come off all my meds (supervised by the GP). No other lifestyle changes.

User
Posted 04 Aug 2023 at 17:55

Just back from The Christie.

G's PSA is 0.3

Is that good for a first 6 month reading? 

The appointment lasted less than 5 minutes, so he's signed up for The Christie PEASS (Prostate Easy Access Support Services) this means he doesn't have to go for any more face to face appointments unless he requests it, and all future PSA results will be given over the phone. 

Edited by member 04 Aug 2023 at 19:19  | Reason: Updated

User
Posted 04 Aug 2023 at 19:11

Yes that result is fine. Some of the cancerous cells are still alive, but can't reproduce. He also has healthy prostate cells, releasing PSA. 

Dave

User
Posted 07 Aug 2023 at 12:21

Was told this morning, by an unreliable source, that G's PSA results of 0.3, shows without a shadow of a doubt, that his treatment ISN'T working as it should, because the first 6 month reading should be undetectable. Is there any truth in this? 

(Said unreliable source is a busybody hyperchondriac family member, who constantly googles illness & ailments).

Elle x

Edited by member 07 Aug 2023 at 12:22  | Reason: Spelling mistake

User
Posted 07 Aug 2023 at 13:05

If he had a prostatectomy then his PSA should be near zero. But he has a prostate and that means he will have some PSA. I assume that 0.3 is the lowest result he has ever had (this is called the nadir) by current guidelines if his PSA stays below 2.0+nadir=2.3 he is in remission (no medic will ever use the term cured for a cancer patient until he has died of something else, a medic may say "consider yourself cured").

If you correct your "busybody" on their incorrect assumption, they will only search for something else and misinterpret it in some doom ridden way. If it is one of your children they deserve to be treated with respect and informed of the situation correctly. Anyone else I would just smile, and ask them if they would like to make his remaining short life as good as possible by buying him his dream motorcycle.

I used the word "fine" in my previous post. I would have used the word "excellent" if it had been 0.2, because there is some evidence that if his PSA drops to 0.2 or less within the next four years, then he has 98% chance of remaining in remission for another ten years. Just because it is not yet 0.2 does not mean it won't drop in the future, and even if it does not drop, it just means it's chance of returning within a decade is some figure greater than 2% though it may still be a very small number.

Obviously your busybody friend would misinterpret the above paragraph as anything above 0.2 means imminent death.

 

Dave

User
Posted 08 Aug 2023 at 17:07

Thank you for all your replies Dave. Can I ask how long it's been since treatment ended for you, and how you are these days?

Elle x

User
Posted 08 Aug 2023 at 18:28

Diagnosed March 2018. G4+5, T3N0M0 PSA 25

HT straightaway for 2 years

HDR and EBRT Sept 2018.

PSA <0.1 all through HT.

Last HT April 2020.

Testosterone recovered Dec 2020. Now have ED but Viagra is sufficient to deal with this.

All PSAs since April 2020 have been either 0.1 or 0.2. 

I would never describe myself as fit, though I would describe myself as healthy.

I rather hope I will be in the group of people who never have recurrence, though being 59 and having a life expectancy of about 85 I am a realist and would expect a recurrence at some time over the next 26 years, but I'll cross that bridge when I get there.

 

Dave

User
Posted 19 Jan 2024 at 19:09

Where we're at, almost twelve months since RT ended.

Urology appointment yesterday, the first one since diagnosis. Nothing to report, though the consultant insisted on an immediate PSA test. A tiny bit annoyed at this, as even though it's due in three weeks, Gee had joined the PEASS pathway at The Christie, so that he doesn't have to have any face to face appointments unless requested, and to be able to be emailed his PSA results on the same day, so we were worried we'd have to wait til next week for the results, as the test wasn't done through one of The Christie's 'closer to home' phlebotomy clinics, meaning they wouldn't be able to access the results. Thankfully we received a phone call today from a urology nurse, to say his PSA is now 0.2, down from 0.37 six months ago πŸŽ‰

 

Current side effects;

Hot flashes during the day.

Fatigue.

Heartburn when lying down, so goes to sleep propped up.

Sleeping 9pm til 4am, and waking 2 - 3 times to pee.

Two bowel movements every morning before 7am.

Recently started feeling much weaker, and says his motorbike feels twice as heavy, though he's still riding.

Joint & muscle ache, which has become considerably worse since the 6th Prostap3 injection two months ago. He says his elbows are the worst affected.

ED, so using the pump every day.

Zero libido.

Brain fog.

Emotions constantly up & down.

Still on Tamsulosin.

Had 6 of 8 Prostap3.

 

Other than all that, he says he's feeling good, is living life as normal as possible, and is looking forward to 5 months without thinking about a PSA test. No doubt the anxiety will start creeping in a month before the next one.

At the moment he's only taking a multivitamin, and eats & drinks like before diagnosis, which was already quite healthy. The only thing he's given up, is anything fizzy, as it gives him terrible gas, and the farts seem to rattle his cheeks in a deafening manner πŸ˜‚

 

Best wishes to all on the forum.

 

Elle & Gee

 

xx

User
Posted 20 Jan 2024 at 13:08

I just looked back at some previous posts, and saw that I used "fine" to describe a PSA of 0.3 and said I would use "excellent" if it were 0.2. 

So Excellent it is then.

I bet your hypochondriac friend will be sad to hear the good news.

Sorry to hear about all the aches and pains etc. it's not the best weather for motorcycling I'm sure come spring things will start to feel better.

Dave

User
Posted 21 Feb 2024 at 19:28

Does anyone know if a side effect of Prostap3 is that it makes you feel like you're going insane?

 

On Sunday, the four of us set off early for a few days away in Aviemore, while it's half term. Everything was fine on the journey there, with some lovely castle stops along the way. We checked into the hotel mid afternoon then went for a walk into town. On the way back we stopped for fish & chips, then strolled back to the hotel. Gee went for a soak in the bath, as he said he was stiff after all that driving (I don't drive). On coming out of the bathroom, he began to make us a drink, but said he felt strange, and was as white as a ghost. Before the kettle had even boiled he said he needed to go outside for some fresh air. We both went out, and he said he wanted to sit in the car and listen to some music for a bit. We hadn't been in the car five minutes when he started crying uncontrollably. Two minutes passed, then it changed to rage, and he was thumping the steering wheel. Another two minutes, and he was panicking & hyperventilating. He said it felt like he was having the life sucked out of him. It seemed to take forever to calm him down, and when he did, we went for a short walk. He did his best to compose himself as we went back to our room, but as soon as we stepped inside, he said he could feel the weird feeling washing over him, and that he couldn't stay in the room as it felt claustrophobic and was suffocating him. I asked what he wanted to do, and he said he would rather drive the 330 miles home than stay there. So I went to tell the boys to pack up their things, I packed up ours, and we left for home at 6.15pm, arriving back just after midnight. 

On Monday he said he still felt strange, like he was inside a glass case looking out. He said he felt dithery and had no appetite, but didn't feel ill.

Tuesday, he started to get his appetite back, but still wasn't feeling himself, so made an appointment with his GP, though it's not til next Tuesday. 

Today (Wednesday) he says the shakiness has gone, and he feels more like himself, but there is still an odd feeling lingering at the back of his mind. 

His 7th Prostap3 is on the 8th of March, and then his final one in June. 

He's trying to decide whether or not to ask about Sertraline, as some have mentioned on here, but is wondering if it's worth it with being so close to the end of treatment. I have looked to see where the nearest Maggie's group is, and it is at The Christie, though I doubt he would try that.

 

On a side note, I had a family member message me, to ask how we all were, and I, unfortunately, told her what was happening. Her response was that she thought Gee would've tried harder to stay there for the kids, (they're 16 & 20, easy going, lovely young men, who just want what's best for their dad), and that when 'men' get ill, they become selfish. Needless to say I have blocked and deleted said family member. 

Thank you to anyone taking the time to read this post.

Elle & Gee xx

User
Posted 21 Feb 2024 at 20:27

Hi Elle, 

I had a prostatectomy a year ago and I'm not on any cancer medication but I can relate to the holiday incident.

About 6 months ago we went away for a 4 day break at a hotel country park. We'd only just unpacked and I felt dreadful, anxious and insecure. This mental anguish started to make me feel physically unwell. We got changed for dinner and I couldn't eat a thing.

I couldn't settle all night, hardly slept a wink. My wife could see how much I was struggling. We packed our cases before breakfast and headed back home. I'm sure in my case it was a psychological problem, like a lengthy panic attack that was so powerful it lead to physical symptoms.

Edited by member 21 Feb 2024 at 20:28  | Reason: Typo

User
Posted 21 Feb 2024 at 20:37

Oh Elle, I feel for you and Gee, how awful for all the family.

I remember shortly after starting on Prostap 3, I completely lost ALL my sanity, I went into a spiral of anxiety. I would be fine one minute and then in a terrible state of despair the next. I distinctly remember(and I’ll NEVER forget), my wife and I had organised a trip to Arran for the day with my son and 2 wonderful grandsons. I was trying so hard to stay strong and cheerful for my grandsons but all I wanted to do was sit down and cry my eyes out. We managed to get through the day….just! But that was a turning point for me. I knew I had 3 years of this and if I was to be like this for 3 years I would not survive it. So, I decided I was going to give sertraline a go and although it took a while to kick in(4-5 weeks) it has made such a difference to me. I can’t say it will help Gee and as you say he’s close to the end of his Prostap(lucky man😊), but from my point of view the anxiety is going to get worse when I come off the HT as that’s when I’m really going to know whether the treatment has worked. so, I think it might be worth talking to his GP about it….what has he got to lose? He won’t be put on a high dose so should be able to wean himself off it. My GP was very understanding and had no issues in prescribing it for me.

As for Maggies I would have NEVER tried it…..until my wife cajoled me INTO trying it and the support I’ve had has been incredible.

You’re family member just has no idea and should be pitied. They have no idea what Gee and you are going through.

I hate this Prostap, I hate what it’s done to me and I can’t wait to be rid of this poison. Yes, it’s hopefullyhelping cure me, but from what I now know I think there are kinder ways of achieving the same result. If you’ve followed my journey you’ll know the side effects I’ve suffered and I wouldn’t wish them on my worst enemy. Very much like Gee in fact except for fatigue ..which for some reason I’ve NOT suffered from.

I’m determined though to give myself the best chance of a cure but if my Onco turns round and says to me that I don’t need it any more I think I will kiss him…maybe not the wisest thing to do because he’s not the most empathetic character.🀣🀣🀣

Whatever you do, I hope Gee starts to feel a bit more normal, and that when he stops Prostap he will regain some of his mojo back quickly.

Derek

User
Posted 21 Feb 2024 at 21:32

Originally Posted by: Online Community Member
... if it's worth it with being so close to the end of treatment. ...

Well there's a lot to take in with that post. The only bit I can attempt to answer is the above question. Yes it is worth it.

A lot of us with health problems and men in particular just plod along hoping it will get better, and procrastinating. He is not near the end of treatment he may have another two prostaps and even if he doesn't have any, it will be six months to a year before his hormones are back to normal. 

It may not even be the hormone treatment which is the cause of his current problems. So if he delays getting this mental health problem sorted now, it will probably be another year before he actually goes to the GP about it, and that is a whole year of misery for something which may be an easy fix.

I don't know whether sertraline is the right answer, that's for your GP to decide, but getting help now is the right thing to do.

 

 

Edited by member 21 Feb 2024 at 22:07  | Reason: Not specified

Dave

User
Posted 22 Feb 2024 at 00:16
I'm with Dave, Elle - it sounds like an awful few days for you both but I wouldn't assume that it is to do with the HT. Anything else going on? Stress at work?

The family member .... yuck! You can do without that kind of negativity in your life.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Feb 2024 at 18:05
I was on Zoladex for 3 years including 2 years with abiraterone & enzalutimide as part of trial. Whilst I never got the panic/anxiousness etc that you describe I would certainly just start crying often for no apparent reason. I may have been driving, walking, having a shower etc and it would just start. Other times it would start for a reason such as seeing suffering on news, sad film, sad song etc. I was aware depression may happen and I ended up on antidepressants (prozac) for 12 months or so I think. I have to say that really helped.

As has been suggested ADT does affect us in many ways but always good to seek assurance it is 'just' the affects of medication & see if gp suggests any temp treatment.

Peter

User
Posted 04 Jun 2024 at 11:42

A little update before Gee's 8th, and hopefully final Prostap3 injection next week on the 11th.

After his panic attack in Aviemore, we discovered that the week before our trip, when Gee had been decorating the box room with the kids, they had been messing around, writing their names on the wall, but when Gee went to write my name, he spelled it wrong. It's a simple name (sister of Rachel in the Bible), and we thought he had done it on purpose for a laugh, so we all had a good chuckle, then thought nothing of it. He told me that it had really bothered him and had been playing on his mind, but he didn't want to say anything because he felt it was daft. Then on our way to Aviemore, we were sharing funny stories from work, school & uni, when our youngest mentioned the misspelling of my name, and we all laughed again. Gee said that at that moment he felt like breaking down, but knew he had to keep calm while driving, to keep us all safe. So when we finally arrived, all his built up emotions were released. 

I've told him that he mustn't keep things in anymore, no matter how daft or insignificant he thinks it is.

He did go to see his GP, who prescribed him amitriptyline to help him sleep, though he still hasn't taken any, and hasn't had anything similar happen since.

At this present moment, he says the fatigue & insomnia is by far the worst, with his joint & muscle ache a very close second. We have everything crossed that his PSA is still 0.2 or lower, when it gets tested mid July, and that his HT injection next week, is actually the last one, because he says he doesn't think he could bear to have to have another. I've said nothing to him but I personally am hoping that his potential "no Prostap Day" being 9/11 has no bearing on anything.

At this time of year he would normally be on the Isle of Man for the TT races, but he says he's not up to roughing it in a tent for 10 days, so we're enjoying the live stream instead. Our boys are named after two road racing brothers, as he's a massive fan, and, needless to say, he's getting very emotional watching it.

Tomorrow is Gee's birthday, and also my birthday. He will be 60 and I will be 50. When he was first diagnosed, I thought cancer was an imminent death sentence regardless of the stage, so I didn't think we'd see the next Christmas together, let alone be celebrating these milestone birthdays together. 

Best wishes to all on this journey that no one wants to be on.

Elle

& Gee xx

User
Posted 05 Jun 2024 at 22:15

Hi Elle, 

Glad you got to the bottom of the Aviemore incident. Yes HT can have that affect, something quite trivial becomes quite upsetting, and indeed if he could have talked about it at the time it would have saved a lot of trouble, but such is life.

What an excellent idea having birthdays on the same day so much easier to remember them. Being on the Isle of Man with summer weather would be nice but, being on the Isle of Man with British summer weather is a different ball game.

Dave

User
Posted 22 Jul 2024 at 13:53

Gee had his latest PSA done last Thursday, through one of The Christie 'bloods closer to home' clinics, and received his results by email, mid-afternoon on Friday, from his PEASS (Prostate Easy Access Support Service) team. He also asked for a testosterone level test, as he had his 8th, and (hopefully) last Prostap3 injection six weeks ago, and wants to keep an eye on it going forward.

His results were, 

PSA 0.31ug/l (up from 0.2)

Testosterone 0.6nmol/l

He says that, since the last injection, the side effects have gotten significantly worse. Every joint, from his shoulders to his toes, is aching & stiff. He has to roll himself out of bed, and says his legs sometimes feel like they're about to give way. He's only getting around 2-3 hours sleep at night, but he'd rather be keeping active, than having an afternoon nap, and he still doesn't want to take the amitriptyline that his GP gave him.

Does anyone know if it is normal for PSA to rise while still on HT, and, when his case is reviewed in September, will the rise mean they want him to stay on HT for longer? 

Thanks in advance.

Elle & Gee x

User
Posted 23 Jul 2024 at 00:40

A PSA bounce at 18 months post RT is very plausible. I do believe for most people the HT keeps the PSA so low that a bounce can't be detected, but I can't remember the timeline of PSAs for everyone on this site so you could do with further replies to get a better picture.

With his nadir at 0.2 you should not worry unless his PSA gets to 2.2 . I would be surprised if the onco said continue HT in September there is nothing at present to say his treatment is not going to plan.

Dave

User
Posted 01 Aug 2024 at 17:42

At the start of our PCa journey, we were told that Gee would be having 2 years of HT. His Prostap3 were three monthly, so we assumed that he would have eight of them. Today he was feeling upbeat, as his 8th one was back in June, and he's been looking forward to the 'poison' (the perfect word for it Decho πŸ‘πŸ») starting to go out of his system in a few weeks time, so he emailed to ask if he'd receive a letter, email, or phone call, to inform him of the end of treatment. He got a quick reply telling him that in fact he was due another injection in September, meaning 27 months worth of HT, not 24. Has anyone else assumed the time scale wrongly, as we did?

Thanks for your reply Dave ☺️ I guess no-one else has had a PSA rise whilst still on HT.

Elle x

User
Posted 06 Aug 2024 at 13:39

Thank goodness for that! Five days and a few emails later, we got confirmation this morning that the person who said he was due to have another had got it wrong, and he is only to have eight injections, as we originally thought. Just knowing that in five weeks time, the 'poison' will start leaving his system, has lifted his spirits no end πŸŽ‰

Elle x

User
Posted 06 Aug 2024 at 22:06
Great, it must be good to get that postive news. It will take quite a long time for the impact of HT to disappear, but I hope that month by month you will sense improvements.
 
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