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

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

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

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

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