I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error


On going

User
Posted 18 Apr 2024 at 11:13

That’s brilliant news Leila, keep enjoying life together.

Ange x

User
Posted 18 Apr 2024 at 20:06
Love this Leila. Very pleased for you. Stay strong as ever 💪💪
User
Posted 19 Apr 2024 at 09:34

Thankyou for all the lovely messages, we are both so chuffed to receive them. Staying positive and strong can sometimes be a challenge, but giving in or giving up just isn’t an option. 
The week before his PSA our drains were blocked ,we live rurally and have a cesspit, without too many details it was because we had so much rain, we dealt with that, then the rain caused another few challenges for us. At least it kept our minds of the PSA. Celebrating the <0.1  PSA, less rain, birthdays and anniversary, with friends a meal out, and trip to the theatre. This evening I’m planning an evening in the garden lighting our chiminea, sitting there star gazing with a glass of wine. The skies here on a clear night are quite spectacular. So thanks once again, we will care for each other and David will enjoy watching Charlton on Saturday and he’ll be there in front ofhis  computer shouting if they score. I’ll be at the other end of the house keeping out of the way, and maybe learning a few new words, haha, I doubt it. 
Leila 

User
Posted 19 Apr 2024 at 12:10

My post tend not to be about the ‘technical’ aspects of PCa, but just how we manage it, David was diagnosed over eight years ago, nearly nine, he’s also had a heart attack. His diagnosis was Gleason 9 Tb3, he’s had HDR Brachytherapy, Radiotherapy & he’s now on lifetime HT. 

He gets tired, he has some pain most days, he can get emotional. He takes  supplements and alternative off label medications  privately prescribed by an oncologist.
Life is not what we had planned, but it’s fulfilling, mostly happy, he has no sexual feelings, which is hard for us both, he is loving, and we enjoy intimacy, sometimes sexual if I’m lucky.

I suppose what I trying to put across, is, yes life changes, yes it’s hard and we have to remind ourselves he’s nearly 74 still fit exercises daily, gardening, good social life, he writes music, plays, sings, keeps abreast of world events, and that’s enough to put a damper on life these days. 
David is always game to try new things and has also ventured into the world of painting, we now have a room decorated in his art. 
If he didnt have PCa we would have continued  travelled extensively, we love backpacking around. I suppose what we have done is reevaluated our lives to manage, and still enjoy. I hope this shows, life changes, and has challenges, but we’ve done our best to rise to meet the challenge, not too much rising  these days 😉 I hope this gives some positive outlooks for some of you lovely lads and your families. His last PSA was <0.1 .

Edited by member 19 Apr 2024 at 12:13  | Reason: Not specified

User
Posted 07 Aug 2024 at 13:31
David is on lifelong HT and he is experiencing hot flushes and what he describes as a cold tingling feeling. He’s been on HT for over 2 years, since he was diagnosed with stage four PCa. He gets tired, his energy levels are sometimes quite low, though as I remind him he is 74, still managing the garden with me, and still writing music and singing.

He finds the sweats and cold tingling feeling quite debilitating, has anyone who has these symptoms got any suggestions.

He is planning to take black cohosh from today, I take it for my ongoing hot sweats, so we hope it might help him.

If any of you lovely lads has any helpful suggestions I’d really appreciate your help.

Thank you

Leila

User
Posted 07 Aug 2024 at 14:17

The standard complimentary therapies are:

Sage (not with Enzalutamide);
Evening primrose oil;
Acupuncture.

If these don't work well enough, there are prescription medications which his oncologist can prescribe:

Cyproterone;
Medroxyprogesterone;
Megestrol.

Using any of these requires occasional liver function tests, to check his liver is handling them. If Cyproterone works, you can usually stop taking it and the effect persists quite a while, and when it wears off, you can restart it again.

User
Posted 07 Aug 2024 at 18:46

Thanks Andy, David is on apalutamide so I dont think he can take sage. He has tries oil of evening primrose and it didn’t really touch the symptoms. 
Acupuncture sounds like a possible way forward or maybe see if he can have the  Medroxyprogesterone, he wants to give the cohosh a go first. 

User
Posted 07 Aug 2024 at 21:56

Wild Yam  is a potent phytoestrogen rather than tablet form cream would be better bc it would bypass the liver trouble is wild yam is made into both estrogen and progesterone products - you would need the seller's assurance it is estrogenic 

 

User
Posted 07 Aug 2024 at 23:07

Hi Leila,

I had acupuncture and it helped with my hot flushes for a while. If you know of a good one, it’s worth a try.

Derek

User
Posted 13 Aug 2024 at 18:36
David has started sharing my black cohosh, it does seem to be helping him with the hot flushes, and he’s sleeping better too. So, now we are both taking it, as we both get hot flushes. I can see on many levels why it is sometimes referred to as ‘ the couples disease’ I’ve had to buy a double dose of the stuff. We were talking earlier and David reminded me it will be nine years in September since his diagnosis. He’s on life long HT and a myriad of supplements and stuff. His last PSA was <0.1, he had a heart attack four years ago and now has one stent. He fell over last week, and now has a misaligned sacrum, which seems to be easing off with the help of manipulation, excercise, physio and a lot of moaning. He also has Dupuytren’s contracture which he hopes to get a. Injection to help relieve the tightness Thankfully he can still play his guitar. Other than that he’s doing great, he enjoys life, I’ve advised him I’m not looking for a toy boy yet. 😂

Leila

User
Posted 13 Aug 2024 at 20:03

Thanks Leila.

I wish you both the very best of health.

JedSee.

User
Posted 13 Aug 2024 at 20:50

Hi Leila, sorry can help with the hot flushes, I am dodging HT for the moment. Take care of each other.

Thanks Chris 

User
Posted 14 Aug 2024 at 10:29

Great to hear your update Leila. And that things are going pretty good. Hopefully you can sort the hot flushes out - for both of you. It’s one of the side effects I’ve managed to dodge .. 

Ive had a couple of falls lately whilst out and ended up with cuts and bruises. It’s a bit embarrassing especially in front of a whole stand at Brands Hatch 🤦‍♀️ I probably need to get out and push myself a bit which will help with tired legs and breathlessness as well. 

As I just said to ChrisJ keep up the resistance and don’t let it grind you down. 👍

Take care 

Phil

User
Posted 01 Oct 2024 at 11:52

It’s that time again, just got David’s PSA results a happy <0.1 and all his bloods seem to be good. Just waiting for the vitamin D results to come in. 

David was diagnosed nine years ago this month,he takes a boat load of supplements and some ‘ off label’ prescribed meds along with his three monthly Prostap injection, lots of fresh veggies, no red meat, no processed food, and very limited sugar. Now whether it’s the regime, the diet, or whatever he’s happy. 
I tell him it’s my love  and a bit of nagging thrown in to keep him on his toes. 

Keep strong you G9 lovely lads.

Leila.

 

Edited by member 01 Oct 2024 at 13:18  | Reason: Not specified

User
Posted 01 Oct 2024 at 11:58

Hi Leila. What great result, so pleased for you both. I imagine it’s a bit of everything keeping it all on track. Keep it up 👍

Take care,

Phil

User
Posted 01 Oct 2024 at 12:09

Wonderful news. Best wishes to you both.

User
Posted 01 Oct 2024 at 12:29

Leila, great news, long may it continue. 

Thanks Chris 

User
Posted 01 Oct 2024 at 18:42
Nice news Leila. Good to hear some better news. Keep well both x
User
Posted 01 Oct 2024 at 19:22

Great new Leila, I’ve just had the results of my latest PSA test 6 months since a had my last ever(hopefully!) Prostap Jab. Testosterone and PSA both undetectable. I can’t believe how much better I have felt since this stuff was out my system. My energy levels are high, my joints get better by the day, flushes better. All this even though I have zero testosterone.

All this has made me think that if ever I was in the position where it was HT for life I would seriously consider having an orchidectomy.

Onwards and downwards(PSA!)

Derek

User
Posted 18 Nov 2024 at 12:52

Has anyone done any research into ivermectin, I’ve done a bit of reading and it does seem to have some interesting results.  

 
Forum Jump  
©2025 Prostate Cancer UK