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

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.

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

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?😉 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

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

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.

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

Worrying doesn't change anything, stop worrying.

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. 

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 🎉

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 😂

Best wishes to all on the forum.

Elle & Gee

xx

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