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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. πŸ˜‰

 

 

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 πŸŽ‰
"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.πŸ‘«πŸ‘¨β€β€οΈβ€πŸ‘¨πŸ€—πŸ€—

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

 
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