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User
Posted 16 Nov 2016 at 22:07
It's sometime since I've posted. I have been reading updates regularly. David has completed his RT, & HD Brachythearpy. We have spent the summer gardening, coming to terms with our life changing experiences and we are hopefully beginning to make some sense of it all.

We are both feeling less ' punchdrunk'we went away for a wonderful holiday, this also contributed to feeling ' normal' again, what ever that is.

David is getting stronger & fitter, although he still gets days of feeling tired. He has had an ongoing pain in his lower back and haunches, he's seen our GP and the radiologist consultant ..... none seem to have any suggestions :-( we just hope it's not the dreaded PCa. His bladder is a lot better, and he feels his flow has improved.

It really resonated with us talking about the anticipatory grieving process...lets be honest, we think and wonder about the future.... and what ever it holds. David will always be G9 and he's planning on living a long time yet..... we have soooo much to do. We hope he will....

We have had some conflicting advice from the consultants a) the onco, b) radiologist .... onco wants him to have a scan in January the radiologist is saying 6 monthly PSA tests .... any advice would be welcome. Not having too many cancer appointments has been good, but we are aware of the G9 needs constant monitoring.

On the ED front he tried with the pump and hated it, tried the viagra and it was ok.... but left him with a feeling of being light headed and hungover ....he's keen to keep going and said he had a few sexual feelings again which delighted him. The pump gave him days of discomfort... he felt awful.

It is now over a year since his diagnosis, a journey of tears, laughter fear and now we hope to move in to calmer waters, where we can emotionally heal, find space to plan and think.

To any newbies starting on their journey, talk to each other, be patient with each other... and value times of laughter.... use this site and value the advice here, it has been invaluable to us.

Thanks again

Leila x

Edited by member 17 Nov 2016 at 10:24  | Reason: Not specified

User
Posted 24 Apr 2021 at 18:11

Just a little update, we had 5 tons of gravel delivered this morning, and between us we’ve managed to shift and spread about half. What has this to do with PCa you ask, well chaps David is nearly 71 he was diagnosed with Tb3 Gleason 9 he had the full luxury ticket of  treatments HD Brachytherapy, followed by 25 sessions of RT and 3 years of Prostrap. His PSA has wobbled between 0.1 - 0.3 Due to the current circumstances we can’t really go abroad travelling,so we’ve concentrated on our garden and growing food. 
Our physical relationship continues to blossom, its different and not the same as it was before treatment, but when we are not too knackered from gravel shifting we have lots of fun. I have advanced arthritis in my hip, so our sexual manoeuvres are a little more delicate than in former years, but the mind is willing on both our parts.

I suppose my message is finding joy in everyday things has more meaning to us both, we’ve matured,that’s a posh term for us getting older 😉

We enjoy decent wine, decent foods, and life is good for us. David was diagnosed in in September 2015, and he really thought he’d not have much life left. 
My message is, Gleason 9 is serious, and it isn’t easy. For us it’s been a time of sadness, trauma, loss grief,pepperd with laughter, fun and lots of joy, and we still plan, and have plans.

I hope this message gives you a smile and a bit of hope.

Leila x

 

  

 

 

. 

 

 

 

 

Edited by member 25 Apr 2021 at 07:54  | Reason: Not specified

User
Posted 16 Nov 2016 at 22:07
It's sometime since I've posted. I have been reading updates regularly. David has completed his RT, & HD Brachythearpy. We have spent the summer gardening, coming to terms with our life changing experiences and we are hopefully beginning to make some sense of it all.

We are both feeling less ' punchdrunk'we went away for a wonderful holiday, this also contributed to feeling ' normal' again, what ever that is.

David is getting stronger & fitter, although he still gets days of feeling tired. He has had an ongoing pain in his lower back and haunches, he's seen our GP and the radiologist consultant ..... none seem to have any suggestions :-( we just hope it's not the dreaded PCa. His bladder is a lot better, and he feels his flow has improved.

It really resonated with us talking about the anticipatory grieving process...lets be honest, we think and wonder about the future.... and what ever it holds. David will always be G9 and he's planning on living a long time yet..... we have soooo much to do. We hope he will....

We have had some conflicting advice from the consultants a) the onco, b) radiologist .... onco wants him to have a scan in January the radiologist is saying 6 monthly PSA tests .... any advice would be welcome. Not having too many cancer appointments has been good, but we are aware of the G9 needs constant monitoring.

On the ED front he tried with the pump and hated it, tried the viagra and it was ok.... but left him with a feeling of being light headed and hungover ....he's keen to keep going and said he had a few sexual feelings again which delighted him. The pump gave him days of discomfort... he felt awful.

It is now over a year since his diagnosis, a journey of tears, laughter fear and now we hope to move in to calmer waters, where we can emotionally heal, find space to plan and think.

To any newbies starting on their journey, talk to each other, be patient with each other... and value times of laughter.... use this site and value the advice here, it has been invaluable to us.

Thanks again

Leila x

Edited by member 17 Nov 2016 at 10:24  | Reason: Not specified

User
Posted 09 Feb 2020 at 17:38

Just a few lines to encourage you young men in the G9 club. The ED situation has improved as we are able to have  both intimacy and fun 🤭though we were reminiscing about years ago and giggling.... well what else do we do when the weather is too windy to play out. David was not able to get on with the NHS pump provided, so he bought an battery pump from eBay it was the princely sum of £15.00 and it’s much better, as long as he remembers to change the bloody batteries, it works a treat.

We have also been busy cutting back a big tree and chopping logs for fire wood. Though our muscles ached, and we were knackered it was good to see the wood stacked up. More important it’s just good to get on with life, do our stuff  and forget about the cancer for a bit.

We had a brilliant week away In Northumbria too, walking and enjoying a new area. 

Another  project will be a concert where David will play and sing to raise awareness, about living with PCa 

I’m not posting  just to share our mundane lives, but to share how good life can be , most of the time, and how

we enjoy life. 

 

That doesn’t mean we don’t have dark days especially near the dreaded PSA time.  But it ain’t all bad, and good

times can be had. David’s last PSA was 0.3 and he’s been  off treatment  over 18 months. I hope this gives some encouragement and puts a smile on a few faces. 

Leila 

 

 

 

 

 

 

 

Edited by member 10 Feb 2020 at 15:14  | Reason: Not specified

User
Posted 21 Nov 2020 at 14:45

Thank you for you’re lovely responses. This horrible disease has blighted too many lives. The physical & physiological impact touches each man, their family and partner. David has been through the mill both physically and emotionally, three years of HT was hard going, to have the man I love next to me in bed without a speck of sexual interest was hard on many levels. His pain and angst, combined with my feelings of rejection, intellectually I could deal with it, but emotionally it was hard. He had pains, mood changes, hot flushes and skin irritation. The GP was not particularly helpful, having what seemed like a cursory understanding of the side effects. This led to my reading, learning and trying to understand this bloody disease and it’s impact on our lives. The skin irritation was awful, he was prescribed lotions and potions, and eventually we found an a cream that helped. The GP was all for prescribing  Pregabalin but David declined. He finished the HT and slowly his interest in sex returned, his skin improved, his moods swings and hot flushes abated. This took about 18 months, we rekindled our physical lives, it was different, we used what resources we could to get an erection, laughing, crying yet  continuing to explore our new sexual experiences. He couldn’t use viagra it gave him a headache, I laughingly said I thought that was my line. We can now achieve penetration sometimes, and we can enjoy each other once again. David has always had skin irritations the HT seemed to make it so much worse. Today we are older wiser, with a decent physical relationship, and a PSA of 0.1 this week. We’ve had comments about this being one of the better cancers, oh you’ll

 

 

 

be fine and other crass comments. We’ve also learned a lot about each other, this disease and it’s impact. 

This site had helped a great deal, the support, care, concern and humour has kept us going, sometimes when the world seemed a bleak place. David was Gleason 9 tb3 so he had the full works of treatment options. For each man and partner the situation  is different, and personal. I hope this gives some insight not just the factual medical, but the reality of some of the feelings, emotional pain, the ups & downs of this all to common disease. 

Lets hope the treatments and understanding improves. This year has been hard for all humanity, but especially hard for this with complex health needs. Take care all, and value the insight this community gives each one of us. It has been invaluable.  Leila x

 

 

Edited by member 21 Nov 2020 at 14:50  | Reason: Not specified

User
Posted 02 Jan 2018 at 15:47
Just had David’s PSA it’s still <0.1 and he has one more injection to go, to complete the treatment. He’s happy, we are happy and now planning some holidays. Looking at health insurance and thinking warm sunny places.

A Happy

New Year, and my thanks for the information, sharing of support and experience it has carried me over the bumps on more than a few occasions.

User
Posted 01 Nov 2023 at 11:23
Another happy <0.1 once again. David was diagnosed in in September 2015. He has weathered a heart attack and the ongoing awful Welsh weather we’ve endured lately and he’s doing well.

The pre PSA stress doesn’t get any easier for either of us, but today we smile, and book our holidays for winter.

He still takes enough medication and supplements to make him rattle, but as long as he’s doing well and the score on the doors remain where they are we are happy.

Who’d a thought it with a Gleason 9 Tb3 diagnosis eh?

Weather today is beyond awful, so I’m baking bread, reading my book and David’s writing music and playing, Happy days.

We are still working our organic veggie garden and David sings and play every day, writes music and has a post doctoral qualification in moaning.

Thanks for being there, the support is so appreciated.

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 02 Jan 2018 at 21:40

I'm so glad for you, getting such good news at the start of a new year.

Enjoy yourselves, make the most of every minute

We can't control the winds - but we can adjust our sails
User
Posted 16 Jul 2019 at 21:57

Thanks for the update Leila

From October I will be in the same situation as David was, albeit with PSA undetectable and only on HT for 18 months. It’s great to hear such a success story, just when I’m about to embark on the same second part of my journey as you have experienced

Edited by member 16 Jul 2019 at 21:58  | Reason: Spelling

User
Posted 09 Feb 2020 at 17:50

Leila 

thanks for such an upbeat posting I am now four months post treatment and have four weeks before I get my key PSA and testosterone blood test. For the last two months I haven’t even thought about my prostate cancer but now I have to book my blood test ready for my next review it starts to pray on my mind again. But like you I am trying to enjoy myself to the full and I am out cycling every day as long as it’s not raining and even when it does I have a turbo trainer in my garage

User
Posted 23 Feb 2021 at 17:48

Good to hear fom you Leila. Glad things are going well from another G9er. 

Dave

User
Posted 19 May 2021 at 23:35

Thanks Leila, I'm glad you got him to read it, and see how one can be positive. I do worry (ha ha, and I said I'm not a worrier) that some of my posts can be taken the wrong way, so I do appreciate knowing that I'm getting the tone right. 

Dave

User
Posted 16 Aug 2022 at 10:06
I’m hoping my treatment is going ok Lyn ? We have never once discussed my T level. I’m just assuming it’s ok or he would be pushing me for Enza ? The psa is still on the fall so far and it will be 21 months on Decapeptyl next month. To be honest I’m suffering very few of the side effects. Mainly fatigue and hot flushes. But to be truthful although lowered my libido is still fine and probably higher than my wife’s. And due to continuing use of the pump and 4x5mg Tadalafil per week I’m still waking up with a semi and get an erection no probs with stimulation. Maybe ( probably) I’m just weird heh x
User
Posted 16 Aug 2022 at 11:15

‘Maybe ( probably) I’m just weird heh’  You said it Chris 🤣…

But, seriously the one thing i have gleaned from following posts on the forum is everyone is different…

I’m actually getting more happening ‘down there’ lately even though I’ve added the Bicalutamide to the Zolodex.  I didn’t lose my libido when was on Prostap and my specialist nurse explained that its many things that create libido, including memory and how you feel about yourself 😳 !

My consultant doesn’t seem to like to measure Testosterone either, no idea why. Although he may do if my PSA is still going up at the next test. Keeping busy so I don’t think about it too much 😬

Leila i would say waiting a month till next test would be fine especially as you have testosterone checked as well. That will tell you if the treatment is working or not. But as Lyn says it could just be a rogue injection that didn’t take properly. So you will likely have to wait till after the next injection and test to see if there is a trend or not. At the moment the only thing worrying you is the slight erections and as you can see many of us still get that when the treatment is working fine.

I will have my fingers crossed for you that there is nothing to worry about.

Phil

User
Posted 06 Sep 2022 at 12:01

Happy days PSA below <0.1 

Leila. 

User
Posted 22 Nov 2022 at 19:54
David’s PSA has just arrived, it is a good <0.1 I’m happy to say.He feels good, and seems to be doing well. Of course we’d both like him to have a libido, but sadly it’s not on the cards.

Thankfully I’m not chewing the door knobs with sexual frustration. I suppose us growing older together goes have its plus sides.

Delighted with the PSA and a decent glass of red wine is in my sights. So it could be worse.

Leila

User
Posted 23 Nov 2022 at 19:45

Haha Phil, just realists managing a challenge in a grown up way. 

 

User
Posted 03 Aug 2023 at 13:33

Just got David’s PSA results a happy < 0.1 😊 Lyn, time  for you to have a celebratory fag 😉we will celebrate with a decent red wine, and maybe dance around the garden. 
It’s eight years since he was diagnosed, been a bumpy ride sometimes. The supplements, and alternative treatments seem to be doing their stuff along with the mainstream HT. 

To be able to write this eight years on with an original Gleason 9 Tb3 diagnosis. Every days a good un. 
Time to plan some autumn & winter holidays.

Leila. 

 

User
Posted 01 Nov 2023 at 15:49

Thanks Chris, it’s such a relief. So pleased you are enjoying your planes. I bought David a drone, on its maiden flight it was caught in a tree, took ages to get it down.  Definitely a wee celebration will be happening soon. 
Keep going young man.  

Leila 

Edited by member 01 Nov 2023 at 15:51  | Reason: Not specified

User
Posted 27 Dec 2023 at 17:21

A Merry Christmas and the most Healthy of New Year to all.
David’s  has upped his exercise regime, eating sensibly and taking his meds and supplements. His last PSA was <0.1 

He has constant aches & pains, but he manages them well. Diagnosed over eight years ago, now stage 4 and on lifelong HT. His fatigue levels have increased, but he is 73, so I expect it’s a mixture of age and PCa. 

He is mostly positive, but as the years progress he does wobble. 
Another year awaits us, hoping for the best of times.

Leila 

 

Edited by member 27 Dec 2023 at 17:22  | Reason: Not specified

User
Posted 23 Jan 2024 at 12:00

That is really great news Leila. Long may it continue. I’m sure you’ll get the blood count sorted. 
Funny how the anxiety gets to you. I have my blood test later today and see my consultant next week. Results of my scans then and I’m a bundle of nerves and so tearful. 
I know how David feels…. Hope you’ve got a while till the next one. 

Phil

User
Posted 23 Jan 2024 at 12:39
Nice news Leila. We all understand the test anxiety. It’s awful. I too am now an 8 year survivor with T4 diagnosis. I get my jab in a fortnight which is exactly 3 yrs on HT , and my blood test also which is showing signs of turning 😢. I think a low blood count is not too serious and can be helped with diet and medications hopefully. Sending love to both x
User
Posted 23 Jan 2024 at 17:49

Thank you so much for the lovely messages and comments. This group has become an important part of our PCa world. David is planning to celebrate watching the footies on his computer and having a bottle of beer. I am looking  at planning a long awaited holiday now he’s in the right frame of mind. 

Love and heartfelt thanks to you lovely lads.

Leila xx

User
Posted 24 Jan 2024 at 08:32

Great news about the PSA, so pleased for you both. I just hope one day soon I will be able t9 join the ’undetectable’ club🤞

All the best for the future,

Derek

User
Posted 19 Dec 2024 at 14:36

Another PSA results at <0.1.  I persuaded David to have the test before Christmas. We didn’t have much worry time before as we had five days without power due to the recent storms. We were getting in logs, carrying heavy containers of water ( we have a bore hole no power no water) our generator needed daily love care and tweaking. PSA came round the day after the electricity came on, good timing. 
Whether it’s the red wine, HT, my research into supplements, ivermectin or metformin, and the other supplements he has , who knows, but he’s doing ok, we never get complacent. I try and read about what’s going on, both mainstream & alternative.

My view is it’s my  careful nagging, loving support and our rebellious nature and way of life. It’s over nine years since diagnosis Gleason 9 Tb3, a day I’ll never forget. 

David gets tired and drops off to sleep easily, but we are still managing our acre of land growing food, he’s still writing music, and playing every day. He’s getting one piece recorded by a well known artist. 

A dear GP friend has suggested David’s alternative meds are clearly part of his undetectable situation. 
We celebrated his <0.1 with friends last night, and we are planning our Christmas at home, house decorated logs in, generators at the ready, just in case.We are thinking about what to grow next year, our planned holiday in January and enjoying every day. So you lovely G9 lads, stay strong, and I hope you and your families have a good Christmas & NY. 

Leila. 

 

 

 

Edited by member 19 Dec 2024 at 14:39  | Reason: Not specified

User
Posted 17 Nov 2016 at 00:30

Hi Leila,

Re : '...He has had an ongoing pain in his lower back and haunches...'.

After I had brachytherapy the first few months were just fine, then I developed a slight pain in the nether regions, noticeable when I sat down on a hard chair.  I was also getting slight fevers, it felt like I was going down with a cold.  I mentioned this to my consultant and he immediately prescribed a course of antibiotics to clear up an infection in the radiated prostate.  He didn't need any blood or urine tests to confirm his diagnosis, it seemed like he was half expecting it as a regular side effect of brachytherapy.

On the Viagra front, I find that if you save a few up, and then take them on consecutive days, the effect gets stronger each day.

:)

Dave

User
Posted 02 Jan 2018 at 21:26

Totally gunning for you. Get travelling , have some fun ,,and enjoy every single day. Good luck x

User
Posted 02 Jan 2018 at 22:21
Hi leila great news for you both what a good start to the new year, reading your news also filled me with a bit of positivity as my OH has very similar dx to yours, hes just had HD brachy 29th december then onto 5 weeks external beam radiotherapy starts 15th jan, hes also to remain on zoladex for 2years, its good to be able to see that this awful journey does have some good outcomes..good luck sending love and long may it continue..jo.xx

User
Posted 03 Jan 2018 at 15:57

Thanks, for the lovely responses. j.t. It is hard dealing with this horrible disease. It has taken us a long to settle,down grappling with the enormity of the situation. Having said that, we also get times of fun, joy and lots of laughter. David found the HD Brachy quite easy going, but found the EBRT hard going, his sleep patterns were poor, and he felt extremely fatigued, though he did make himself walk an hour every day. He had to stay away from home to have the treatment as we live very rurally, he found this hard going as he’s a real home bird. It has taken him a while to regain his strength. He still gets days of fatigue, but they are less. The Prostrap has caused fatigue and all the other expected symptoms. Having said all that we have painted the outside of our house, grown all our own veg, and managed to do some changes to our garden. We are up beat most of the time,some days it’s hard to be positive. David is 67, fairly fit and keen to squeeze every bit of life he can. We are both anxious about how he will be when the Prostrap finishes, we hope his PSA stays low, and we can get on with the stuff of life. In the meantime back to exploring holiday options.

User
Posted 16 Jul 2019 at 21:20
Brilliant update - enjoy the sunny evenings :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Jul 2019 at 22:11

It’s always wonderful to read such a lovely story, enjoy every minute and every nice evening with a glass of something good.

lots of love Devonmaid xxx

User
Posted 02 Oct 2019 at 17:48

David has his latest PSA results today. 0.2 he has been off the HT now for 15 months, strength has returned and his libido is rising.He has bought a new ladder to cut the hedges to celebrate.

 

User
Posted 02 Oct 2019 at 17:56

Fantastic news Leila. So pleased that you are getting your lives back. I have one last injection in a couple of weeks and I can’t wait to get the HT out of my system . It’s so good to hear a happy story.

Long may the low PSA last.

Phil 

User
Posted 02 Oct 2019 at 18:28

It’s great to hear good news on here. I’m in the G9 club and at PSA level less the 0.1 I’m starting to get optimistic. It’s now 24 days till my final HT jab expires 

I have kept myself active all the time since I was diagnosed in March 2018 and in fact I have cycled at least five times a week with a total distance of about 120 miles over the seven day period. Yes I suffer with prolonged periods of exhaustion so I take care I allow myself to recover but I can now manage a 60 mile ride once a week in about four hours.

 As for the libido I surely hope it will return over the next six months and at my 68th birthday in April I’m already considering how I’m going to celebrate , lol

User
Posted 02 Oct 2019 at 19:17
Oh Lord, Leila - was there nothing more exciting to do than the hedges????

Great update x

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

User
Posted 06 Jan 2020 at 18:49
Leila, this is a fantastic result, it seems today is a good day for a number of members. As long as his PSA stays below 2.0 you can breathe easy, and at the minute you are a long way below that 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jan 2020 at 19:04

Originally Posted by: Online Community Member

If I’d mentioned this to David he’d have to lie in a darkened room with a cold flannel on his head. 

John would be horrified if he knew what I have written on here over the years 😬

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

User
Posted 06 Jan 2020 at 19:07
Super news Leila. So happy for you and thanks for all your support x
User
Posted 06 Jan 2020 at 19:47
Great Leila, best to you both

Lyn have you got a blog somewhere..I love your humour

User
Posted 06 Jan 2020 at 20:02
David still has a prostate, albeit one which has been turned to mush by radiation, so a slow increase in PSA is entirely to be expected. I’m in the same boat myself having had EBRT 😁.

User
Posted 06 Jan 2020 at 20:51

Thanks Leila for the post. I was also diagnosed G9T3 and have had very similar treatment to David. I'm having my last hormone injection in a few weeks, so I too will be on the slightly worrying journey you are currently on. I'm glad things are going so well for you. Keep posting it is very reassuring for a G9 person to hear ongoing good news. 

Dave

User
Posted 09 Feb 2020 at 17:54
How lovely Leila xx Rock on both of you
User
Posted 09 Feb 2020 at 22:02

Great to hear from you Leila. You and David keep up the good work and having fun. I'm looking forward to the end of my HT. 

Dave

User
Posted 10 Feb 2020 at 13:22
What a lovely posting.

Thank you for sharing.

Clare

User
Posted 10 Feb 2020 at 19:09

Thank you Leila for such a great post. It gives me confidence for my future.

I am 4 months now since my last Prostap injection and don’t feel any different yet. I’m hoping I’ll feel the HT wearing off soon.

Hoping the future is bright for you both.

Phil

User
Posted 18 Apr 2020 at 13:08

David is due to have his PSA in April, he is understandably a bit reticent in the current climate. He has also been advised he’s due to have a bone scan, again a bit of reluctance on his part. He is thinking of leaving the above for a couple of months and then review. Our underlying concern is his G9 Tb3 diagnosis. He has been off treatments for two years now, last PSA was 0.3 

He has the usual aches and pains of a 70 yr old, still working in the garden, playing and singing every day. When I suggest he moans too much his response is “I’m 70 there is  a lot to moan about” said with a huge grin.

Other wise he’s happy enough, we are so pleased we have a large garden to wander in during these interesting times.So, advice, do you think it’s ok to wait, or should he have the scan and tests, GP surgery seem ok with the wait.... but they are not the most informed up to date folk. I’ve written to his consultant but it takes a while to filter through the system. 

Thanks

Leila 

 

 

Edited by member 18 Apr 2020 at 13:13  | Reason: Not specified

User
Posted 04 May 2020 at 16:13

Thanks for the update Leila. Best of luck for the PSA and bone scan results.

I am G9 and T3b with a relatively low PSA on diagnosis of 27 and I am feeling confident I have this licked now. I can’t think about what could happen because that will only hurt my today’s .....

I am gonna miss my next 3 monthly PSA due to Covid restrictions which was only at my behest anyway as the hospital were happy to leave it 6 months . So may try to fit it in or wait , not sure yet. 
My biggest worry is getting my T back as it’s caused me a lot of mental issues. But it does seem to be easing as I was told on here and by my consultant.

So , hope all goes well tomorrow. 🤞

Phil

User
Posted 04 May 2020 at 17:04
I don't think the test anxiety ever really goes away - some would say it gets worse as time goes on!

Good luck tomorrow x

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

User
Posted 09 May 2020 at 08:49

That’s great news Leila, fingers crossed for the bone scan.

Phil 

User
Posted 09 May 2020 at 12:05

Fantastic news Leila, good luck with bone scan results.

Enjoy the weekend together.

Ange

User
Posted 09 May 2020 at 17:11
Brilliant - happy days x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 May 2020 at 18:52
Best wishes and great news Leila x
User
Posted 10 May 2020 at 23:37

That's lovely!  

Best wishes for more of those...

User
Posted 27 May 2020 at 12:15

David’s bone scan results, he had a call yesterday from the hospital. It seems he has some levels of age related damage to his shoulders and elbows, hardly surprising for a musician of 70 I suppose. The specialist nurse seemed to think the scan was otherwise clear. So, he’s had a clear bone scan and a 0.1 PSA. A great result me thinks. The sun shines, the results are good, and the garden is looking lovely. Happy days, shame we can’t go to the beach, it’s so near yet so far. 

I hope all you G9 (Tb3)club lads take hope from this result, and long may it continue. 

David does take alternative stuff, whether this has helped, or the treatment has, who knows, but he’s smiling.

Thanks for the ongoing support.

Leila 

 

 

 

 

 

User
Posted 27 May 2020 at 12:36

Wonderful news Leila. I didn't want to tempt fate, by thanking your earlier posts, until the bone scan  results were back. I'm delighted for you both.

Dave (another member of the G9 club)

Dave

User
Posted 27 May 2020 at 13:29

That’s great news Leila. So pleased for you both.

User
Posted 27 May 2020 at 14:04

Great news Leila. I’m sure this will give hope to many.

Best wishes to you both and long may the good results keep coming for everyone.

Angex

User
Posted 27 May 2020 at 23:21
I am smiling for you Leila - a beach sounds like a wonderful dream right now
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Aug 2020 at 16:07
I wondered why she’s always got her eyes closed and biting her lip in the tub ....

And yes it helps me too lol

Good luck xx

User
Posted 13 Aug 2020 at 17:17

Great news Leila. 0.2 is excellent result considering Davids T is obviously climbing back up 😉.

Theres been a lot of sad news recently so it is good to hear something encouraging.

I had my last PSA in June , last injection Oct ‘19 and it was 0.97 which I was a bit concerned at but the hospital (and Lyn 👍) didn’t seem worried and haven’t called me in. My next appointment will be telephone as so far they are happy.
Next PSA in September so fingers crossed it’s not above the dreaded 2.0.

Enjoy the weather, and your hot tub ....

Phil

User
Posted 14 Aug 2020 at 00:12

Thanks Leila, we like hearing good news. The wife and I were in our hot tub last night, so relaxing after the heat of the day. 

Dave

User
Posted 17 Nov 2020 at 20:34

PSA test tomorrow at 11.30am, the angst doesn’t seem to go away does it. David’s like a cat on hot bricks today, quiet but clearly wobbly. This group give us so much support, thanks for being there.He’s better in the summer when he can gets lost in the garden.Today he’s played guitar got under my feet and watched tele.Not like him at all.

I’ll post when he gets the results.

Leila

 

 

 

Edited by member 17 Nov 2020 at 23:43  | Reason: Not specified

User
Posted 17 Nov 2020 at 21:21
Good luck Leila. I’m sure you won’t need it x
User
Posted 17 Nov 2020 at 23:28
Good luck Leila x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Nov 2020 at 15:47

Great news Leila. Long may it continue 👍

Phil

User
Posted 20 Nov 2020 at 18:04

Brilliant news Leila.  Really pleased for you both.

Angex

User
Posted 23 Feb 2021 at 15:45
Lovely to hear from you Leila and it’s all sounding good x
User
Posted 24 Apr 2021 at 22:15

Brilliant post Leila, very uplifting.  Keep smiling and enjoying your life together.

Angex

 

User
Posted 25 Apr 2021 at 00:45

Wonderful post. 

Dave

User
Posted 25 Apr 2021 at 10:47
Hi Leila, what a brilliant update. Whatever you are doing, it seems to be working! Xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Apr 2021 at 11:02

What a brilliant, uplifting update Leila.

So pleased you’re both enjoying life to the full.

Phil

User
Posted 26 Apr 2021 at 12:51

Thank you for posting. It’s always reassuring to hear news of men who were diagnosed with Gleason 9 and you have a wonderful positive, but realistic approach.

Jonathan was diagnosed in January 2019, Gleason 9 PSA 38.

He has been on hormone treatment since then and has 9 months to go. He has also had chemotherapy, EBR and high dose brachytherapy. He has also used a whole range of supplements etc to maximise his health.

PSA is undetectable at the moment. He has some debilitating side effects from the hormone treatment, and quite possibly some effect on his bowel from the radiotherapy, but he’s been grateful for excellent, prompt and extremely kind treatment and we are both hoping that he will be lucky enough to reap the benefits for some time to come.

Best wishes to you both, Jane

User
Posted 05 Jul 2021 at 14:37

So sorry to hear this Leila. I hope David can get his stent done quickly and then hopefully back to normal - whatever normal is ….. 

Good luck 🤞 

Phil

User
Posted 05 Jul 2021 at 14:45
So sorry to hear this Leila. I freak out in hospitals too so I get that. Utter panic. Good luck and best wishes x
User
Posted 05 Jul 2021 at 14:56
Leila. I spent 3 weeks in Aber after my op, there is really good WiFi that is free but you have to register on your phone...
User
Posted 05 Jul 2021 at 15:03

Hi Leila,

You know we are always here for you. Yes it's a bit of a shame having the "cardiac event", it probably has nothing to do with the HT or the cancer. Life just throws these things at us and we do our best. It isn't that unusual to need a stent in your 70s or sometimes younger. I'm afraid us humans are a bit like an old car, the clutch goes, it won't cost too much to replace it, then the radiator goes, it won't cost too much to replace it, then the ... goes, eventually you realise it's time for the scrap heap.

I'm not saying David should be going to the scrap heap just yet, I'm sure there is a lot more patching up they can do, it might be years before the next thing that goes wrong. Though for my old car it was only six months between the clutch going and the radiator going, so off she went. 

Just seen francij post about wifi, sounds a good idea, you can then use WhatsApp or some other app to do free calls without needing a mobile phone signal.

Dave

User
Posted 10 Jul 2021 at 11:16

Well, after a very turbulent week and being moved from Aberystwyth to Swansea David is now home. He hates hospitals with a vengeance, but he managed to stick it out and had a stent fitted yesterday.It seems he had a cardiac event last Sunday. He did get to have a ride in an ambulance when the England match was on and felt well enough to cheer the lads on. The paramedic and driver were footy fans so it helped the journey with a bit of team spirit & fun. The surgeon cardiologist agreed hospitals were not good places to be and said he could possibly go home six hours after his stent had been put in. Apart from loathing the hospital atmosphere, and him being out of control,which he hates, when he got to the actual procedure of having the stent fitted he said it was fascinating, so much so he asked to see it again, with full explanations. 

The surgeon who did the procedure asked how old he was, he said 71 today, the guy was very complimentary about his fitness. David replied I'm in good fettle then for a 71yr old who has had PCa Gleason 9 and a  heart attack then? The Dr. said don't knock it, you are in pretty good shape for your age. They also asked about what he used to do, he said pro musician, it was suggested he could give them a song and play when he was finished, David said he could but they'd have to book him in. 

David seems to have been quite lucky, he only needed one stent, and has a cocktail of drugs that would make El-Chapo jealous. He has a selection of bruises and puncture wounds, needs a shower as he can't have one till tomorrow, but he is feeling better already. Full of praises for the technology and efficiency of the procedure, but sadly he hated the food, and the staying there until the deed could be done. 

He will have a few days to rest, then another PSA is due. When all that is done we have three dumpy bags of bark to move, and a house to paint. So, he'd better rest while he can and get strong. We have lots of living to do.

As I type he's fast asleep, he has hardly slept, all the time he was in hospital, he said he doesn't think they are good places for poorly people to be in😎machines going all night, bodily functions abound and the bed was uncomfortable. Other than that he seems to have survived the experience. 

Being an 'almost' dutiful wife I will prepare his breakfast and make him cuppa. I'm sure more updates will follow. 

Thanks for reading my waffle if you have.

Leila xx

 

User
Posted 10 Jul 2021 at 11:37
Ha! Brilliant news although I had to google El Chapo :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jul 2021 at 12:01

That's great news. Some moments in the football game could have gave anyone a heart attack. 

Dave

User
Posted 10 Jul 2021 at 14:09
Fantastic Leila:-))
User
Posted 29 Jul 2021 at 14:25
Keep the faith and get some beer in him ….

Best wishes

User
Posted 29 Jul 2021 at 17:21

As GoalHanger says the PSA rise has slowed down. You probably don't realise how good that result is. When he was on HT and had no testosterone his PSA was artificially low, and when he came off HT and testosterone recovered then his PSA should return to it's "normal level". Now no body knows what "normal level" is for David, because all the time you have been aware of his PSA he has either had cancer or been on treatment for it.

Oncologists consider under 2.1 to be normal for someone who has had RT. If you plotted David's psa against time during and since treatment you would see a low flat line whilst on HT followed by a steep rise about a year after finishing HT and most importantly now signs of it levelling out at a "new normal level" which looks to be about 1.2. 

I know I am always optimistic and who knows what might happen, but if my PSA behaves like David's in the next couple of years (I'm about two years behind him) I will be very happy. So get down that pub and celebrate a levelling out of the PSA at a number well below what an oncologist would consider troublesome.

 

Edited by member 29 Jul 2021 at 20:02  | Reason: Not specified

Dave

User
Posted 27 Nov 2021 at 13:54

Hi Leila,

You are not having to wait too long for the MRI and CT scan, if you start pushing for a PSMA scan you may delay these two useful scans, and as many people have posted on this site a PSMA scan can be cancelled several times due to problems with the tracer. So I would go with the flow, and once those two scans are done start pushing for the PSMA.

I can see that this is a lot more hospital visits than David would like. Maybe you should offer him a treat every time he goes to hospital. I'm told a trip to Peppa pig world is very good🐷.

Dave

User
Posted 20 Dec 2021 at 22:13

Always gotta do your best for the kids , I should know . Respect for your work 👏

User
Posted 09 Feb 2022 at 19:36

Let’s hope those paths are long …. I don’t mind winding either 🙃

User
Posted 10 Feb 2022 at 00:25

Hi Leila, a number of different things going on here. Until fairly recently,
- chemo was only offered at end stage to reduce symptoms / prolong life - then research showed that if you give it early, the HT can be more effective and many men live longer
- as a result, chemo (docetaxel) at diagnosis (advanced PCa) or at recurrence with new mets became the norm in many areas
- enza / abiraterone - originally licensed / approved by NICE only for men who had become hormone refractory and only after they have tried docetaxel
- research then showed that abi / enza given early (while men are still hormone dependent) can make HT more effective for longer - but NICE declined to approve it (because it costs a lot more than docetaxel) except for men who are hormone refractory and have alreaady had chemo or can't have chemo for some reason
- then Covid happened and hospitals didn't want to be bringing men in for chemo if they could avoid it, so enza was approved by NICE on a temporary basis even for men who are hormone naive or hormone dependent

One of the few silver linings of Covid! I suspect that NICE will withdraw permission in the near future for enza to be used this way but while it is still available, it seems to be a no-brainer to me. All Wales Protocol has also approved enza for newly diagnosed / newly recurrent, hormone dependent men - see here https://openrepository.awttconline.uk/app/serve/resource/pcpr7195 

There is also now apalutimide as well as enza and abi but apalutimide is not approved in Wales as a Covid alternative to chemo

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

User
Posted 10 Feb 2022 at 19:58

 HI Lyn,

Ooooh, I used to chair referral panel every Thursday in my smoking days I’d puff away afterwards, blimey that was a blast of memories. So I can appreciate the funding issues and the pressures, related to treatments, but as a dear friend said, you are an fu£%ing punter, and he’s yer man. Wales is still quite careful about covid, and still has measure in place, so he might get it. 
I’ve got all the thermometers and such I’m well prepared. I just hoped he’d dodged the bullet, ever hopeful me, don’t worry till I need to type.
When we get the info on the scans we will probably pay and see the professor who did his HDR brachytherapy, he’s a cool sensible man who David likes. We’ve kept in touch with him since then. I’m going to be a bit careful about telling him enzo is a type of chemo, he would get all dithery, David’s an artist and has arty traits, I edit stuff carefully for him. 

ahh thanks Lyn,your advice and support is appreciated xxx

 

 

 

 

 

 

User
Posted 17 May 2022 at 00:30
I think the onco is best person to talk that through with you - the initial PSA response to HT is great so it might make sense to push the apa back a while?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Aug 2022 at 01:03

This is NOT very worrying. It is a little bit worrying but NOT very worrying.

The thing which will be VERY worrying is when the cancer evolves to thrive without testosterone (which nearly always happens eventually).

What you are describing is a possible return of testosterone, but if that is the case another ADT can be used to block testosterone, and the cancer will then remain dormant (until it evolves to thrive without testosterone).

 

Dave

User
Posted 16 Aug 2022 at 09:26

Originally Posted by: Online Community Member

What you are describing is a possible return of testosterone, but if that is the case another ADT can be used to block testosterone, and the cancer will then remain dormant (until it evolves to thrive without testosterone).

If it were the case that testosterone was returning, it could just be that the most recent injection had failed in some way (stored incorrectly, injected incorrectly or from a poor batch?) or that the 3 monthly injection is no longer lasting 3 months (Bazza had to have the 3 monthly depot every 10 weeks to keep his testosterone down). This is why testosterone reading is so important to men on long-term HT. 

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

User
Posted 16 Aug 2022 at 21:09

I'd done 5 months on Zoladex and was just about to start RT when I got some unexpected spontaneous erections. I was fearing the latest Zoladex injection hadn't worked, so the GP gave me a Testosterone test (and extra PSA test). Testosterone came back as 0.2nmol/L, which is about as low as hormone injections can get it (1.2nmol/L or lower is considered OK). Also PSA was still dropping. So all was OK, and I could just enjoy the erections, although I think they went away shortly after that.

User
Posted 04 Sep 2022 at 00:10

I've just got back from the pub. Didn't need any hints.

Dave

User
Posted 04 Sep 2022 at 18:56

As it was raining and the pub is in a beautiful bay, well with sitting outside, it’s beautiful. So, we decided to share a bottle of red wine at home. 

Leila 

User
Posted 24 Oct 2022 at 14:17

This is not directly linked to PCa though it has been a useful purchase for David. Oddballs pants, since he's been back on he HT he has said the doesn't feel his underwear 'tucks him in' I found these pants called Oddballs, they are a bit pricy, a bit more than M&S maybe, but they do the job perfectly he says. The second lot arrived in the post today, and he was prancing around the bedroom in them, making me giggle! He reckons they are the best pants he's ever had. The colours and patterns are wonderfully bright, and a bit psychedelic. On the PCa front his last PSA was <0.1 he seems happy enough, and doing well. As I type he is up a ladder repairing a crack in the front or our house, he plans to paint the house next year. So he must be doing ok he's 72 and still working most days. 

Leila. 

 

Edited by member 24 Oct 2022 at 14:19  | Reason: Not specified

User
Posted 03 Nov 2022 at 21:38

Thanks Leila, I will certainly be an assertive wife…I’ve not stopped researching since he was diagnosed 2 weeks ago!! This forum and reading the different journeys has been so helpful.

Thanks for taking the time to reply, so pleased your husband is ok at the moment, I wish you both all the very best for the future and I’ll continue to follow your journey on here.

Best wishes

User
Posted 23 Nov 2022 at 02:12

Haha, Lyn, the deed has been done a while back. Just careful timing on usage.😉joking apart, these things have to be seriously addressed. By the way. I am the aged aunt in my family. 😏

Edited by member 23 Nov 2022 at 02:14  | Reason: Not specified

User
Posted 24 Nov 2022 at 13:59

Ahhh Phil, that's hard for you. It’s actually the same here as David’s on HT he’s about as interested in sex as I am in laying concrete. Well actually in a long gone former life I had to learn how to do that, another story.I’m not a young chick anymore either. 😉

We are happy and managing our lives well. T’aint easy, we find joy in each day.  David does the occasional gig, he sings and writes music, enjoys a good moan most days, so it’s ok really. 

Leila. 

User
Posted 07 Feb 2023 at 13:47

Thanks Phil, 

Firstly good to hear from you. I’m still in the persuading mode about the dentist, it’s an on going mission. 
PSA time is hard the stress in our house goes up, though over the years we’ve learned to plan for it. I’ll be thinking about you… let me know how it goes.

 David’s PSA last time was <0.1 he’s on a selection of meds. His main side effect is tiredness and the current tooth, jaw pain.  He’s due to have his prostrap & PSA at the end of February or early March.

We have  booked a week away in March, a place we both enjoy in Cornwall it’s a really nice lodge with a very good pool, spa and just a couple of miles away from St Ives. we can plan to go away as our dear old cat died a while ago, so we are free to go holiday.
 So it will be swimming steams sauna, walks and evenings in St Ives having a glass of something naughty and a meal. 
Then home to plan our veg garden, thankfully where we live live is beautiful in spring and summer, overlooking the Welsh hills and 10 minutes from the beach. 

keep in touch, stay positive Phil 

Leila 

 

 

 

User
Posted 08 Feb 2023 at 11:17

Thanks Chris, It appears I am also an oil witch,he’s been chewing cloves and now using the oil. David has had regular check ups and thankfully very little treatment required, then this. He has been prescribed toothpaste and with the cloves he  says it’s slightly better today. He says the salt water gargle and cloves are the most effective.

Yes, sad about Ted our cat, he was a lovely animal. The other two are thankfully in good health and quite a bit younger. 
David was diagnosed in 2015 Gleason 9 Tb3, then a heart attack in 2021, on the whole he feels well and has a good life, active and firing on all cylinders. No libido, but we expected that. Looking forward  a <0.1 PSA end of the month.
I’ve had cats for most of my life when living in the UK as a young woman I worked abroad for a while. One cat Tabitha Jane lived until she was 23, and Clarrie   until she was  21. A well loved cat will enjoy many years.

Thanks again Chris, hope you stay well and healthy.
Leila. 

 

 

 

 

User
Posted 06 Mar 2023 at 17:05

Hi Phil,Thanks for the post. David seems to be doing well, he takes his prescribed medication and a raft of supplements as well. Many hours of reading and looking at all angles of this dammed disease. Good to read you've got some counselling on offer, I hope it keeps you going, and helps. I'll be thinking about you, counselling can be quite challenging, as well as helping.  David thankfully seems to have managed the emotional mental health side of the HT well, though he does get a bit tearful now and again, but he did before he had PCa.  The main difference according to D with the Staladex is its injected into the stomach, something he'd not had before. We are off to our favourite UK holiday place next week, I'm trying to persuade him to renew his passport, and we can go somewhere further afield. We both done a fair bit of travelling  in out time. I lived overseas as a youngster, and he toured the states and lots of other places  as musician. We both loved travel, though I got into some ' hot spots' when I was in the middle east!  Travelling from the West Bank to Jordan I recollect was interesting for a single western woman. Wouldn't have missed it all for the world. We also backpacked around SE Asia in the early 2000's it was great. I'd be up for it again if we could. After the holiday it's operation veg garden.  Summer here can be lovely, and we both love our garden. Anyway less chat. Thanks Phil, keep going me dear.

Leila 

 

 

 

User
Posted 18 May 2023 at 18:27
Well, the three monthly PSA was on Tuesday and has come back at < 0.1 David is delighted, apart from the ongoing tooth jaw ache he feels good. The dentist thinks he might be grinding his teeth, I’m wondering if it could be stress as it seems to increase when he’s worried about stuff.

Planning a summer in our beautiful garden and thinking about autumn and winter holidays. We tend to enjoy summers at home as we live in a beautiful place.

User
Posted 18 May 2023 at 19:05
Great news Leila. So pleased for you both. Yes us too. Lazing and gardening in the beautiful New Forest. Ponies and calf’s everywhere. Birds singing. All good.

If you have the BBC sounds app , I’m listening to the sleeping forecast every night. Sends me straight to sleep and less stress. A mixture of the BBC4 shipping forecast and lovely soft music. Keep well x

User
Posted 18 May 2023 at 19:29

That’s great news Leila . Long may it continue 👍

Phil

User
Posted 18 May 2023 at 22:00

Leila, good to hear things are going okay. Always good to hear things are working out for people. I was talking to a guy today who had RT years ago, not on any medication and PSA <0.01.

Thanks Chris 

User
Posted 01 Nov 2023 at 12:13
Couldn’t be more happy for you both Leila. Celebrations for sure ok and live every day to the full. Yes the weather holding us back but I’m fixing up all the bits of damage on my RC planes in the garage. Bit of music , maybe a beer later …,

Let’s both make that G9 ten year club together ok x

User
Posted 01 Nov 2023 at 17:39

Leila, great news, really pleased for you both. We were down near kilgetty in our caravan a few weeks ago during storm Agnes. Brilliant beaches around there for flying my kites. 

Thanks Chris 

User
Posted 01 Nov 2023 at 17:41

Good news Leila, a < is the best news possible. Long may it continue.

Yes we never get used to PSA anxiety, my next one end if month and its started already!

Cheers

Bill

 

User
Posted 01 Nov 2023 at 18:18

Great news Leila, delighted for you both.

User
Posted 02 Nov 2023 at 12:35

That is absolutely brilliant news Leila , so pleased for you both. Obviously doing something right. And it’s great you are both keeping busy. That is so important for maintaining your mental health.


Take care 

Phil

User
Posted 04 Nov 2023 at 14:45

Hi JedSee,,

What a lovely post, thank you. I’m surprised your GP won’t play ball, you’d think it would  be in their interest to keep the customers healthy. 
David  pays for the Care Oncology Clinic medication, but he gets the blood tests done at the surgery, thankfully. 

We have worked very hard at keeping a good rapport with the clinicians and practice nurses at the surgery, and believe me it has been an uphill struggle. We have spent a lot of time researching and ensuring we are as well informed as we can be. David’s NHS oncologist was unaware of the Jane MacLelland  protocol, and not interested. He was a chemo and pharma man.

Ive been reading about the benefits of vitamin D quite a bit of research has been done about it, and it does seem to have good foundations.

Thankfully I quite like research and reading, and I’ve found some of it really interesting. 
Berbarine is good, metformin isn't an expensive drug, you’d think your surgery would be more obliging. 

Whether it’s the life style, the medication of the organic veggies, who knows.  
 Leila 

 

 

User
Posted 04 Nov 2023 at 20:25

Thanks Leila - you're an inspiration!  😀

Best wishes always,

JedSee,

User
Posted 27 Dec 2023 at 20:43

Thanks Dave, hope things are good with you. 

User
Posted 28 Dec 2023 at 00:36

Chris, Thankyou for your lovely message, and I hope the oncoming year is kind to you and your family. David’s been quite lucky too, he has down days sometimes, but bounces back the following day, his mantra is I have a lot of living to do. 


Decho, David manages his aches and pains in a number of ways, excercise, post doctoral studies in moaning 😉and on rare occasions he takes a natural herbal remedy that really relaxes him and relives any pain, it also relives some of the stresses he feels cos of the stage four cancer. He also goes into his studio in winter and writes music, he finds singing and playing a relaxant too. Summer he’s outside in the garden. We live  rurally  with log burners and a Rayburn so it’s bringing in logs and cleaning fires  every day in winter. Our lives can be quite active.

Wiosal, Yep, He follows the Jane McLelland protocol along with other supplements, David also has a consultant at the Care Oncology Clinic in London, they follow a similar regime to Jane, we aren’t veggies, we eat both chicken and fish mostly chicken, lots of fresh home grown veggies,  little diary, no red meat and no sugar, thou he’s had a few chocs over Christmas. The COC regime is statins, metformin, antibiotics and an anti parasitic like ivermectin or fenvezadole. These off label drugs really seem to make a difference. The daily regime takes a bit of time and some commitment, but it’s become part of his routine. We eat no processed foods and I make all our food from scratch including bread. I hope your husband can see the logic in following the protocol as it seems to be positive for David so far, thou we don’t be complacent. 

Thank you all for your messages. May 2024 bring us health and peace of mind. 

Leila 

 

 

 

User
Posted 28 Dec 2023 at 15:10
Happy Christmas to you both Leila - and wishing you a happy, healthy and uneventful 2024! xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Dec 2023 at 15:52

Hi Leila. Great to hear all is going well in your household 👍. 
Hope you’ve had a wonderful Christmas and wishing you and David a brilliant New Year. 
Phil

User
Posted 23 Jan 2024 at 11:56

David had his PSA on Monday just got the results, he’s a happy <0.1 once again. Though his red blood cell count is  low, so I’m gonna have to look into that. The week before his PSA he get more aches n’ pains, extra fatigue, and generally feels low. This morning we get the email, and he feel much better. Happy days, over eight years since disgnosis .

Leila 

 

 

 

User
Posted 23 Jan 2024 at 12:25

Great news

Dave

User
Posted 23 Jan 2024 at 13:54

Leila, great news on the PSA . Take care.

Thanks Chris 

User
Posted 23 Jan 2024 at 18:46

You’re right Leila - happy days indeed

 

Edited by member 23 Jan 2024 at 18:48  | Reason: Not specified

User
Posted 23 Jan 2024 at 19:17

👍Always good to see that less than sign, can't get better than that.
Get that holiday sorted and enjoy it.

Cheers
Bill

Edited by member 24 Jan 2024 at 18:46  | Reason: Not specified

User
Posted 24 Jan 2024 at 01:14
Yay! 🎉🍷☕

(Obvs the glass of wine is for you & the cup of tea is for me) xxx

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

User
Posted 02 Mar 2024 at 14:52

Have any of you lovely lads had really sore skin outbreaks, David’s groin area is red raw, he’s really suffering ( so am I 🙁) with the side effects. He’s had steroid cream, it helps but not much. He’s wondering if it might be a side effects of the Prostap ? Any ideas suggestions. It’s so bad he can’t even do his workout in our home gym.
Otherwise he’s doing well, energy levels low, but weather doesn’t help, roll on spring, we have lots of gardening plans. 

Thanks

Leila 

User
Posted 02 Mar 2024 at 16:39

I get heat spots in my groin when I sweat a lot, usually after walking or cycling. This only started after my RT so put it down to that. I use a zero base cream which I was given during RT for my bum and that seems to help.

User
Posted 17 Apr 2024 at 12:44

Just received David’s PSA results, < 0.1 so we are delighted. We have just been discussing the strain of waiting for the results, it really doesn’t get any easier. 
We are now  planning an evening out with friends ,to celebrate, and then a season of celebrations for our anniversary and  my birthday.

Looking forward to a lovely summer, less rain and more sunshine. 

This bl#%dy disease takes its toll, but we ain’t giving in, we are both staying strong and positive, well most of the time.

Leila. 

 

 

User
Posted 17 Apr 2024 at 13:38
Really happy for you Leila xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Apr 2024 at 14:26

👍

Dave

User
Posted 17 Apr 2024 at 16:35

That’s great Leila. It’s not fun waiting for results … I’m still on 4 weekly checks/consultations and it drives me mad. Soo looking forward to getting a bigger break… 

Hope you have a great time celebrating this result, your anniversary and birthday as well. Enjoy every day 👍

Summers coming ☀️, won’t be long and we’ll be enjoying those long evenings in the garden with a little tipple 😁… 

Phil

User
Posted 17 Apr 2024 at 23:18

Great news Leila I’ve just joined the <0.1 club and it’s a great feeling.

Long May it continue for us all🤞🤞🤞

all the best,

Derek

User
Posted 18 Apr 2024 at 20:06
Love this Leila. Very pleased for you. Stay strong as ever 💪💪
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 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 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 19 Nov 2024 at 11:23
Metformin modifies the cellular response to sugar and insulin, the same effect can be obtained by not consuming carbohydrates..

Ivermectin is cheap as chips and already proven to be safe in humans, I have no idea why it is not being trialled more widely for cancer treatment. Maybe they are concerned about parasite resistance and loss of efficacy for parasitic diseases where it has saved millions of lives already?

User
Posted 20 Dec 2024 at 12:25

Hi Kazzy, 

David does get side effects from the Prostap injections, muscle ache, fatigue and general pains. He tries to combat the side effects with exercise, we have a rowing machine. The gardening and our lifestyle tends to keep him active in summer, and rowing in winter.
He doesn’t take any steroids or abiraterone, he was offered apalutamide but declined after reading the side effects. 
David also had a heart attack four years ago, and had one stent fitted, the apalutamide increases his chances of further heart damage. 
He is also on a lot of supplements and follows a metabolic regime which the NHS doesn’t  support currently, although there is a lot of peer research papers to support it. 
We have read extensively about mainstream and alternative treatments for PCa and so far he’s doing well. 
David is 74, stubborn and has an iron will to keep going. He does rest when he needs to and his sleep pattern is late nights and late mornings, this comes from a lifelong job as a musician. Some of the treatments he has had privately and the metabolic regime is managed was managed by a private oncology clinic. We also have a friend who is a GP who supports  metabolic regime, and advises him on supplements. Our outlook and lifestyle is quite alternative. I hope this helps you both . Leila. 

User
Posted 20 Dec 2024 at 12:30

Thank you for all your lovely messages, I’ve just read all of them to David. This forum has been a lifeline for me over the years and I want men to know that even with a Gleason 9 diagnosis life can be good. 
I hope you all have a good Christmas and NY.

Leila x

Show Most Thanked Posts
User
Posted 17 Nov 2016 at 00:30

Hi Leila,

Re : '...He has had an ongoing pain in his lower back and haunches...'.

After I had brachytherapy the first few months were just fine, then I developed a slight pain in the nether regions, noticeable when I sat down on a hard chair.  I was also getting slight fevers, it felt like I was going down with a cold.  I mentioned this to my consultant and he immediately prescribed a course of antibiotics to clear up an infection in the radiated prostate.  He didn't need any blood or urine tests to confirm his diagnosis, it seemed like he was half expecting it as a regular side effect of brachytherapy.

On the Viagra front, I find that if you save a few up, and then take them on consecutive days, the effect gets stronger each day.

:)

Dave

User
Posted 17 Nov 2016 at 09:44

Try levitra or Cialis instead of Viagra perhaps?

I can't imagine how a pump can cause discomfort - wrong technique maybe.

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

User
Posted 16 Feb 2017 at 17:40

Hi

I had my brachytherapy on the 29th of April 2013, I had 57 seeds implanted and had a gleason score of 6. My tumor was the size of a malteser, about 10mm in diameter.

Prior to my operation I had problems with my libido and it was found that my testosterone was very low, Serum testosterone 7.1 I think my tumor was absorbing what my body was making, I had a PSA of 8.4. 

After my operation I asked my doctor if I could go on a Testosterone supplement (testogel) as this could help my libido. My own Doctor said I could under supervision. Now I go yearly to see a consultant, after I started the daily treatment at the Heath Hospital Cardiff, to monitor the testosterone.I currently have a normal level of testosterone in my body.

I have been using Testogel  since September 2013, today I was at my local hospital Velindre in Cardiff and my PSA was 0.1 so luckily it has not affected my cancer cells as some might think it would.

I now wake with an erection most days, as I did some many years previous, I still need some help maintaining this and Cialis is the real helper in keeping it going.

The side effects of low dose brachytherapy for me now; are dry ejaculations, loose stools and a need to go very soon after eating, sometimes followed by trapped wind. These symptoms are mostly normal according to my nurse practitioner, who sees many prostate patients.

I can recommend those that need it to use Cialis, I am not sure if you can get the testosterone treatment that I am on?

2ddesign 

User
Posted 02 Jan 2018 at 15:47
Just had David’s PSA it’s still <0.1 and he has one more injection to go, to complete the treatment. He’s happy, we are happy and now planning some holidays. Looking at health insurance and thinking warm sunny places.

A Happy

New Year, and my thanks for the information, sharing of support and experience it has carried me over the bumps on more than a few occasions.

User
Posted 02 Jan 2018 at 21:26

Totally gunning for you. Get travelling , have some fun ,,and enjoy every single day. Good luck x

User
Posted 02 Jan 2018 at 21:40

I'm so glad for you, getting such good news at the start of a new year.

Enjoy yourselves, make the most of every minute

We can't control the winds - but we can adjust our sails
User
Posted 02 Jan 2018 at 22:21
Hi leila great news for you both what a good start to the new year, reading your news also filled me with a bit of positivity as my OH has very similar dx to yours, hes just had HD brachy 29th december then onto 5 weeks external beam radiotherapy starts 15th jan, hes also to remain on zoladex for 2years, its good to be able to see that this awful journey does have some good outcomes..good luck sending love and long may it continue..jo.xx

User
Posted 03 Jan 2018 at 15:57

Thanks, for the lovely responses. j.t. It is hard dealing with this horrible disease. It has taken us a long to settle,down grappling with the enormity of the situation. Having said that, we also get times of fun, joy and lots of laughter. David found the HD Brachy quite easy going, but found the EBRT hard going, his sleep patterns were poor, and he felt extremely fatigued, though he did make himself walk an hour every day. He had to stay away from home to have the treatment as we live very rurally, he found this hard going as he’s a real home bird. It has taken him a while to regain his strength. He still gets days of fatigue, but they are less. The Prostrap has caused fatigue and all the other expected symptoms. Having said all that we have painted the outside of our house, grown all our own veg, and managed to do some changes to our garden. We are up beat most of the time,some days it’s hard to be positive. David is 67, fairly fit and keen to squeeze every bit of life he can. We are both anxious about how he will be when the Prostrap finishes, we hope his PSA stays low, and we can get on with the stuff of life. In the meantime back to exploring holiday options.

User
Posted 08 Jan 2018 at 13:45

Any advice in travel insurance please, we a planning a trip to europe. Just to recap David is G9 T3b he's on hormone treantent until March 2018, he has hypertension and also takes tamsulosin. He currently feeling well and his PSA is <0.1 

I have asked this before, but things change so Im just checking for advice. We have the EHIC.

 

Thanks Leila. 

User
Posted 08 Jan 2018 at 14:40

Hi Leila

i used insurancewith last year for holidays in Europe found them really good, i am terminal and i think for myself and the rest of the family with everything covered was £140

i have just had a promo code sent through from them for 20% off it is "sun20"

Hope that helps

Si

PS just noticed on the email

* Please note, our online prices automatically include a 15% discount. The 'SUN20' code gives you an additional 5% off, making a total saving of 20% against our call centre prices

But every little helps

Don't deny the diagnosis; try to defy the verdict
User
Posted 31 Jul 2018 at 10:19
David has completed 3 yrs go HT, last injection was in March 2018. He is getting constant aches in his legs and feet, he finds it quite debilitating on some days. He continues to be reasonably active, though sometimes he finds it hard. Has anyone else found this after completing the Prostrap injections. He is also scared that being off the HT will allow the cancer to spread, he’s T3B G 9 so I can appreciate his fears. Any advice would be welcome. Thanks Leila

User
Posted 31 Jul 2018 at 11:37
taking hormone holidays when the psa is under control is generally considered to be beneficial in terms of quality of life and according to studies I have read doesn't impact life expectancy.

PSA needs to be regularly monitored of course and make sure any unexplained pain is investigated.

User
Posted 31 Jul 2018 at 11:57

Thanks for your reply, he has completed the course, and  hopes he does not have to use it again.He is concerned about the constant aches he has in his lower limbs, and if this is a side effect of coming off the  Prostrap or something else. 

 

Thanks Leila. 

 

 

User
Posted 31 Jul 2018 at 15:45

Stop worrying about it and get it checked out...

User
Posted 31 Jul 2018 at 18:05
Thanks, it’s in hand appointment made by me. You are right it needs checking out.
User
Posted 31 Jul 2018 at 18:34
Hi Leila

Tony was diagnosed in 2006 gleason 9 T3B , he had RT and zoladex. he has been on and off hormones from about 2 years after the rt, think the first time was for about 3 years then on it again for about a year and so on. he went back on it again at the start of last year I think it was and was told he would have to stay on it until it stopped working, his psa has just started to go up and they have now added casodex. I remember the start of hi journey so well and thinking he wouldn't be around for long and 12 years on he is still here and in himself quite well apart from he has started to get really tired lately. His oncologist told him when he first came off hormones that the longer he could stay off them the longer they would work and this has proved to be the case.

hope all is well with David

regards barbara

User
Posted 05 Jan 2019 at 18:31
David has been off the HT for just over 6 months now, after three years of it.He has developed pains and discomfort under his right rib cage, sometimes a sharp pain sometimes a dull ache. His PSA has been consistently <0.1 for over 2 yrs and since being off the HT.

He is also beginning to worry that being off the HT could open him to a reacurrance of the PCa, and every ache or pain is a worry.

As he was diagnosed locally advanced G9 Tb3 N0 M0 and told he is on a “curative path “ he has been really positive until recently. He has read that some types of PCa don’t give off PSA and his was 8.8 (quite low) at diagnosis, this has made him feel very uneasy.

Has seen a GP but tbh he’s not reassured.

I read regularly but I’ve not posted much, as we’ve been trying to forget about cancer for a while.

We are waiting to see the urologist for hopefully some reassurance.

Any advice would be appreciated.

All the best for 2019.

Thanks Leila

User
Posted 05 Jan 2019 at 19:13
Hi Leila. Nice to hear from you again. Basically your news is good although not being perceived as that which is a shame. I think all of us at a certain age are aching all over , and it only takes a certain extra activity to set off a raft of pains. My legs are simply awful and I couldn’t run across a road literally at 51. I’ve been told it’s nothing to do with cancer , it could be Cialis , but I’m worried it’s lymphodoarma tbh.

I would never compare or “ black cat “ someone , and I know our paths have been different , but even though I had surgery and was found to be G9T4N1M0 , I have done nothing bar 11 months of Bicalutamide. I’ve had zero treatment for two years and psa up to 82. As far as I know nothing has changed inside me and I feel well and healthy apart from my legs. I insisted on keeping a sex life if at at all possible and we have made the most of that. I know I’m running the gauntlet and am going to die very young, but in the vast majority of cases it is a very slow growing disease and nothing needs to be done in panic — as said the article that for localised low Gleason PCa doing nothing was as effective as having all the treatments over a 10 year scale. I’m solidly concerned with living with the best QOL rather than dying. I know the disease is unpredictable and I’m not a doctor , but it seems your OH could be looking forward to a great rest and new beginning and return of normality / even libido , rather than worrying about something that can be dealt with again later on. I know it’s not easy as I’ve been stressed all Xmas as I have my review next Weds. My Onco hates me as he’s used to everyone going in saying “save me “ , and I go in saying “ leave me alone “. I guess we will see just what happens. Try and enjoy some recovery and better quality of life. Happy New Year both x

User
Posted 05 Jan 2019 at 20:05
Hey Leila, you are correct that there are rare prostate cancers that don’t give off any PSA (or hardly any) but it would have been identified at the template biopsy stage. I think they would have mentioned it to you at the time so the fact that you are not aware suggests that he had a nice run-of-the-mill adenocarcinoma. But you could check with the GP or look back at the original diagnosis letters if you have kept them.

My instinct is that the pains are most likely to be unrelated.

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

User
Posted 05 Jan 2019 at 21:00

Hi Leila.   The worry never goes completely away does it? As others have said David's pain is more likely  to be non cancer related.

I do hope the consultant can give you positive news and that you can continue living "The Good Life"  on your smallholding. Sounds idyllic as I am a townie but feel like a country girl at heart. Just try to relax in the meantime. Easy to say I know.

 

Best Wishes

Ann

User
Posted 05 Jan 2019 at 22:24
Are different pains to what he had before? Sounds like you may be working him to hard on the smallholding!!
User
Posted 05 Jan 2019 at 23:49

Thanks for all the lovely replies, I’ve just read ‘em all out to him, and he’s smiling and touched. David is, a bit like a quality street sweet, hard on the outside and very soft on the inside, and sometimes very scared.
His diagnosis was andenocarcinoma, common as muck eh! He’s probably a bit on the autistic spectrum, if it ain’t clear, factual and no possible variations he panics, that and being a bloody musician ( drama queen)
He does panic, mostly I can thankfully keep his sane head on... sometimes I have to admit I fall into his world and join in for a day or so, then I have to make sure we get back on track.
The small holding continues, we still have parsnips, leeks and cabbages to eat, lots of them too. I have enough carrot soup to keep us going till spring.

Chris, I am not bi polar, I’ve seen it, and seen what it can do, I admire you, the mixture of PCa & bipolar, I cannot imagine how you and your lovely family manage, take me hat off to you, I do.

Thanks Lyn, I wanted him to hear your post, it helps, he feels better when he hears from people and families who are in similar situations.

Ann, yes keeping a sane balanced head can be hard, every pain is cancer.... isn’t it? Most days it’s good, just sometimes the cancer world takes over.

franclj1 Ha ha, we are planning to have a tractor load of the local farmers best well rotted manure delivered soon, hard work, we haven’t begun yet. The raised beds are clear, garlic planted,hedges to trim trees to prune, muck to spread.

We also fancy a holiday somewhere warm afore spring work sets in, so he’d best be alright. 😉

 

 

Edited by member 06 Jan 2019 at 03:06  | Reason: Not specified

User
Posted 14 May 2019 at 15:24

Have just got David’s latest PSA result, it’s 0.2 He has been off the hormone treatments for a year, and this is the first time it has gone up it has been <0.1 after treatment until now. He was diagnosed Gleason 9Tb3 so he’s understandably nervous with any rise in the PSA with such an aggressive cancer.

We are aware that as he still has a prostate the PSA will rise and he is hopefully making healthy cells, and has rekindled sexual feelings. Having this 0.2 has wobbled us a bit, I hate this three monthly PSA time.

Some reassurance, factual advice, would be appreciated 

Thanks

Leila 

 

 

User
Posted 14 May 2019 at 20:52
It looks like a great result to me - break out the wine and chocolate. As long as his PSA stays below 2.0, happy days 🎉
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 May 2019 at 21:38

Thanks lyn,

We managed to break out the wine, and supper by the  beach, talk it through, sometimes

a bit of realistic reflection is all that’s needed.

Leila 

Edited by member 14 May 2019 at 23:49  | Reason: Not specified

User
Posted 16 Jul 2019 at 18:08

David has been off the HT since March 2018, his PSA was 0.1 until six months ago, and the last two have been 0.2 the oncologist seems happy, so we are happy.Long may it continue.

David is now 69, today he's been up on the barn roof cleaning the solar panels. Not a job for the faint hearted. He says he feels his strength is returning since coming off three  years of HT. I  can see a well earned beer being supped in the garden later.

We are still growing all our own organic veg, enjoying the summers and feeling thankful.

I don't post much these days, I read regularly, so much more experienced people posting very useful information.

Thank you for all the help support, sadness and smiles I've had reading posts on here.

I've just noticed a reference to wine in my last post, we don't imbibe every night ;-) but sunny evenings in the garden are such a treat.

 

Leila.

 

 

 

 

Edited by member 16 Jul 2019 at 22:18  | Reason: Not specified

User
Posted 16 Jul 2019 at 21:20
Brilliant update - enjoy the sunny evenings :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Jul 2019 at 21:57

Thanks for the update Leila

From October I will be in the same situation as David was, albeit with PSA undetectable and only on HT for 18 months. It’s great to hear such a success story, just when I’m about to embark on the same second part of my journey as you have experienced

Edited by member 16 Jul 2019 at 21:58  | Reason: Spelling

User
Posted 16 Jul 2019 at 22:11

It’s always wonderful to read such a lovely story, enjoy every minute and every nice evening with a glass of something good.

lots of love Devonmaid xxx

User
Posted 17 Jul 2019 at 15:16

Hi Leila, agree with the others that it’s lovely to hear your updates. Stay positive as it all sounds like it’s going to plan.

My last injection of Prostap is in October and so I will begin to watch the PSA with baited breath ....

All the best and enjoy the wine ...

Phil 

User
Posted 22 Sep 2019 at 17:04
David has ongoing discomfort and sometimes pain in his right side. He has had this for a long time now about 3yrs, he has mentioned to both the GP's at our practice and the urologist when he's had a check up.He has been advised it is 'nothing to do with your cancer'

He's had x-rays & scans as well.

What he has yet to find out is what could it be to do with.

David is 69 until his PCa diagnosis healthy, and since treatment fairly heathy, with the well seasoned side offects of 3 yrs HT 5 weeks RT & HDR Brachytherapy.

He had his last Prostrap injection March 2018

He is on blood pressure meds, nothing else.

He plans to make an appointments to see a GP ( easier getting an appointment with the Pope these days) and go over the old symptoms yet again.

1. Could all these symptoms be side effects from his treatment

2. Just getting older

3. Gastro problems, he doesnt get indigestion, or after eating symptoms, has a varied diet etc.

4. He does drink wine & beer but is not a greedy drinker

5.His BM's are regular, no problems there.

Any suggestions as he is getting both exasperated and worried by the " nothing to do with your cancer" answer and little suggestions as what it could be.

A few idas about what he could ask, might help us.

I hope someone can advise as he wants an answer,rather than a blanket statement received so far.

We are prepared to pay for a consultaion if required, but would rather have the NHS back follow up support if possible.

Thanks

Leila

User
Posted 22 Sep 2019 at 17:34

I had my final Triptorelin injection mid July and am in similar nervous situation.  At my review in July my PSA was less than 0.1 

 So my final injection of 18 months HT expires mid October and my hormone therapy has been working on my 0.1 PSA for three months.

 But of course I can’t help being extremely nervous as my testosterone begins to return what will happen to any cancer cells that are left in my system.

My next  planned review will be February 2020 where I will have a PSA test and “ Face the music “

Edited by member 22 Sep 2019 at 17:36  | Reason: Not specified

User
Posted 02 Oct 2019 at 17:48

David has his latest PSA results today. 0.2 he has been off the HT now for 15 months, strength has returned and his libido is rising.He has bought a new ladder to cut the hedges to celebrate.

 

User
Posted 02 Oct 2019 at 17:56

Fantastic news Leila. So pleased that you are getting your lives back. I have one last injection in a couple of weeks and I can’t wait to get the HT out of my system . It’s so good to hear a happy story.

Long may the low PSA last.

Phil 

User
Posted 02 Oct 2019 at 18:28

It’s great to hear good news on here. I’m in the G9 club and at PSA level less the 0.1 I’m starting to get optimistic. It’s now 24 days till my final HT jab expires 

I have kept myself active all the time since I was diagnosed in March 2018 and in fact I have cycled at least five times a week with a total distance of about 120 miles over the seven day period. Yes I suffer with prolonged periods of exhaustion so I take care I allow myself to recover but I can now manage a 60 mile ride once a week in about four hours.

 As for the libido I surely hope it will return over the next six months and at my 68th birthday in April I’m already considering how I’m going to celebrate , lol

User
Posted 02 Oct 2019 at 19:17
Oh Lord, Leila - was there nothing more exciting to do than the hedges????

Great update x

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

User
Posted 03 Oct 2019 at 11:39

Well, we did find some more exciting than hedge cutting... but only just. 

David has been advised to have a testosterone serum test,  with his next PSA,his libido is recovering nicely for a man of 69. So, can anyone tell me a bit more about this test please, and why he’s been advised to have it. 

Thanks Leila 

User
Posted 03 Oct 2019 at 12:10

What's interesting is the PSA value when testosterone has recovered.

Testosterone often doesn't recover when hormone therapy stops, but can take up to a couple of years, and it's often not a linear return, but can be nothing for some time, followed by a sudden return. So you need to monitor testosterone as well as PSA when you come off HT, or you don't know if PSA hasn't risen because of no testosterone, or because there's really no extra prostate cell growth. Once testosterone has returned, the testosterone test can be dropped.

Also, if he's on metformin to reduce HT side effects and cancer recurrence (e.g. one of the STAMPEDE arms), he needs to stay on that until testosterone returns (or until a year after HT ceases).

It does sound like David's testosterone is returning from the reversal of HT side effects.

User
Posted 06 Jan 2020 at 18:00
Once again it is PSA time and this reading is 0.3 so it has gone up once again. Davids testosterone is 16.6. He has now been off any treatment for 18 months now, and all services are just about resumed. ED has improved greatly, not as before, but we have smiles on our faces, and enjoy ourselves.👫👨‍❤️‍👨🤗🤗

He’s always a bit wobbly afore the results and to see it go up once again, has unnerved him but I think it ok... comments appreciated.

Happy NY to you all.

Thanks for the supportive posts they are so welcomed.

Leila

User
Posted 06 Jan 2020 at 18:49
Leila, this is a fantastic result, it seems today is a good day for a number of members. As long as his PSA stays below 2.0 you can breathe easy, and at the minute you are a long way below that 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jan 2020 at 18:56

Thanks Lyn, a good day for us! I do hope you are keeping those thigh boots well polished. If I’d mentioned this to David he’d have to lie in a darkened room with a cold flannel on his head. Meanwhile keep those wonderful supportive, and funny posts coming please do.🤓😎

User
Posted 06 Jan 2020 at 19:04

Originally Posted by: Online Community Member

If I’d mentioned this to David he’d have to lie in a darkened room with a cold flannel on his head. 

John would be horrified if he knew what I have written on here over the years 😬

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

User
Posted 06 Jan 2020 at 19:07
Super news Leila. So happy for you and thanks for all your support x
User
Posted 06 Jan 2020 at 19:47
Great Leila, best to you both

Lyn have you got a blog somewhere..I love your humour

User
Posted 06 Jan 2020 at 20:02
David still has a prostate, albeit one which has been turned to mush by radiation, so a slow increase in PSA is entirely to be expected. I’m in the same boat myself having had EBRT 😁.

User
Posted 06 Jan 2020 at 20:49
Thank you for the posts, they mean a lot, living with this €$§€dy disease is one helluva ride, and not one I’d recommend to any one. You lads and lasses are a wonderful support that has carried me and ‘im through a lots of tears and laughter. Long may it continue

Leila

User
Posted 06 Jan 2020 at 20:51

Thanks Leila for the post. I was also diagnosed G9T3 and have had very similar treatment to David. I'm having my last hormone injection in a few weeks, so I too will be on the slightly worrying journey you are currently on. I'm glad things are going so well for you. Keep posting it is very reassuring for a G9 person to hear ongoing good news. 

Dave

User
Posted 07 Jan 2020 at 10:29

I agree with Dave , It’s great to hear encouraging stories on here. I’m sure as treatments get better there will be more . I hope so.

I was G9T3 locally advanced with a PSA of 27 and had EBRT and Brachy plus HT. My last (ever) Prostap injection was October ‘19 after 2 years. This Friday I will be 12 weeks from then 😳😳. Wait till March for next PSA.

Leila I hope your journey back to some kind or normality continues as well as it has so far. Good luck. 

Phil

User
Posted 07 Jan 2020 at 11:37

Thanks for your responses, it’s good to hear from the exclusive  ‘G9’ club. David is a bit cheesed off with the rise, as he hoped it would settle at 0.2. As time goes on he will adjust to the new normal, and we will trundle along. Please keep posting as it’s good to share info.

Leila 

 

 
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