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Why can’t they treat my Lymph node PCa

User
Posted 10 May 2022 at 09:37

Hi Guys, Don’t post often on here but this is just on my mind so here goes.


Brief recap of my situation:


Diagnosed Jan 2018 PSA 26 Gleason 9. Decided on RT with HT. Started Prostap Feb ‘18. Brachytherapy June ‘18 and RT July. Finished HT Oct ‘19 and PSA was 0.07.


PSA then steadily rose to 4.9 in June ‘21. Choline-PET scan and MRI discovered lymph nodes with PCa from my stomach to top of my lungs. PSA now 5.2. Consultant says nothing can be done except keep it at bay now. Talk about sucker punch.


Zoladex implant Aug ‘21. PSA went to 1.02 by October but next PSA showed 1.34.


So, I know I have to wait till next PSA to see if I have Castrate resistant PCa or not and it could just be a blip.


My question is what is the reason they can’t zap all my lymph nodes? I know they do it as I’ve seen it on here but maybe I really do have too many to treat … at the time my consultant asked if I wanted to see the scan showing them all and I said no, I wish I had now.


 


I’d like to know more before I talk to my consultant again in June. Back to telephone consultations next and don’t usually talk to the consultant but one of his minions ( not meaning to be rude just don’t know what they are called).


Next PSA 6th June, consultation 16th June and not in a particularly good place at the moment but trying to be strong…..


Thanks , and sending good luck to you all out there in the same rickety boat…


Phil

User
Posted 26 Jul 2023 at 09:59

Morning guys, saw my consultant yesterday and my PSA has dropped to 7 from 9.3 2 weeks ago. So well pleased, was prepared for the worst. I nearly burst into tears… in my head I was even thinking about my funeral 🤦‍♀️
Still keeping me on 2 weekly visits and tests for a while yet as Testosterone is still not as low as it should be. So hoping that will drop soon. Only been on the Abi 26 days.


My other readings are all ok so far, like liver and BP so that’s good. Just the random fatigue being the only side effect that I notice. 


Take care peeps
Phil

User
Posted 29 Aug 2023 at 13:03

Well finally we have our little Grandson, Flynn Bailey. He’s so gorgeous, but then I am biased 😁.


Was a difficult birth so ended up with a caesarean but Mother and baby both fine and at home now. He was 9lb 14oz and 53cm long so a bit of a bouncer. He’s actually 4 times the weight I was as a prem baby. 😳

We are flying out Thursday to see him . Hope they get the flights sorted out by then. Can’t wait now… 


Take care everyone, 


Phil

User
Posted 10 May 2022 at 09:37

Hi Guys, Don’t post often on here but this is just on my mind so here goes.


Brief recap of my situation:


Diagnosed Jan 2018 PSA 26 Gleason 9. Decided on RT with HT. Started Prostap Feb ‘18. Brachytherapy June ‘18 and RT July. Finished HT Oct ‘19 and PSA was 0.07.


PSA then steadily rose to 4.9 in June ‘21. Choline-PET scan and MRI discovered lymph nodes with PCa from my stomach to top of my lungs. PSA now 5.2. Consultant says nothing can be done except keep it at bay now. Talk about sucker punch.


Zoladex implant Aug ‘21. PSA went to 1.02 by October but next PSA showed 1.34.


So, I know I have to wait till next PSA to see if I have Castrate resistant PCa or not and it could just be a blip.


My question is what is the reason they can’t zap all my lymph nodes? I know they do it as I’ve seen it on here but maybe I really do have too many to treat … at the time my consultant asked if I wanted to see the scan showing them all and I said no, I wish I had now.


 


I’d like to know more before I talk to my consultant again in June. Back to telephone consultations next and don’t usually talk to the consultant but one of his minions ( not meaning to be rude just don’t know what they are called).


Next PSA 6th June, consultation 16th June and not in a particularly good place at the moment but trying to be strong…..


Thanks , and sending good luck to you all out there in the same rickety boat…


Phil

User
Posted 10 May 2022 at 20:36

Pro-merit clinical trial is recruiting across the UK


https://clinicaltrials.gov/ct2/show/NCT04382898#contactlocation


It may be worth asking


 

User
Posted 11 May 2022 at 11:07

Hi Phil,


I’m sorry to read you are having such a hard time, seems you are really having a rough time.You have had more than your share to deal with. David has been offered Apalutamide, is that, or enzalutamide a possible option for you? 
He has also changed his diet and we’ve read quite a few books on diet and cancer. 
How to Starve Cancer by Jane Mc Lelland is the regime David’s following, his last PSA was 0.3 a reduction from the previous 3.9 


He is also doing the Care Oncology Clinic protocol, it’s not NHS though. 


This dammed disease really tests us, you G9 lads are so special and brave, of course David is my special lad, but each one of you is in my thoughts.


I’m aware David will at some time have a more difficult time, and I’m so thankful he’s doing well, every day is such a blessing. 


Take care Phil, 


Leila x


 

User
Posted 12 May 2022 at 12:16

Thank you Peter, I will have a look 👍.


Leila, I’ve just ordered the book ‘ healthy eating. The Prostate care cookbook’ and I’ll take a look at the book you mention. So pleased to hear David’s PSA has gone down. The diet can only help.


Ange, thank you for your kind words. I am going to have so many questions for my consultant this time. I’m not going to sit back and let it take me…


Off out to garage now to work on my old motorbike for a bit then fitting some skirting board to new summerhouse. Got to keep busy , you don’t realise when your young how much you have to savour each and every day. Went out last night to see ‘Anything for love’ the Meatloaf show - really good and brought back memories of us seeing him live in a theatre in Ipswich back in the early ‘80s….. bloody hell how time flies…….


Take care everybody, and in the words of the old Prince Buster song ‘Enjoy yourself, it’s later than you think’


Phil

User
Posted 13 May 2022 at 12:26

I know stage 1 clinical trials are never ideal but things are progressing quickly and this Sexily named! CB307 does sound interesting:


https://findastudy.uclh.nhs.uk/#/trial/61aa4c4f28192a29cf4f4186

User
Posted 16 Jun 2022 at 20:18
Bicalutimide is a good next step - particularly as the onco isn't convinced that you are hormone independent. The bicalutimide will help the Zoladex to be more effective and, if it doesn't work, withdrawal from the bicalutimide may stop the cancer in its tracks for a while, delaying the point at which you have to introduce enza, abi, apalutimide or chemo.

If they had evidence that you are hormone independent, they would have gone straight to plan B.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Nov 2022 at 20:49

We met at 14 messed about for a while as mates stared going out when 15 …oops pregnant at 16 our first born when 17. Parents would not accept us and refused wedding so married at 18 …….. that was 43 years ago.


recently diagnosed and waiting for biopsy and scan results due Friday my wife is positive and supportive however as I read this forum  there is lots and lots of talk about sex and how it could effect the relationship .


don’t misunderstand me as a man it is a big deal for me and I am horrified by the lack of erections the possibility of a reduction in size etc. But my wife has not had a lot of fun with her menopause and the huge effect it has had on her libido and to be blunt vaginal dryness and what she describes as a shrinking space….


however she understands that it, sex, has been great and understands it is important to me and her but she gets little from it now. Her words my clit does not work any more 😢


I guess my point is that the forum does not seem to grasp the partnership and how they will deal with it….maybe your darling will be relieved 😱


we are both 61 and I really really want her and I am not ready to give up on that but I want to stay alive  and it is a real dilemma that sex leads you to a bad life decision


thoughts?


 

User
Posted 30 Nov 2022 at 21:56

Originally Posted by: Online Community Member
I guess my point is that the forum does not seem to grasp the partnership and how they will deal with it….maybe your darling will be relieved 😱


Good point. Something that doesn't get a mention here is that ADT, in eliminating testosterone, has almost exactly the same effects for men as menopause does for women. For both sexes effects vary from one person to another with some people getting more extreme versions. Common to both are emotional changes, brain fog, impaired memory, hot flushes, depression, loss of physical strength and of course loss of libido but basically menopause for women = HT for men.


For many men here who are suffering the possibly temporary effects of chemical castration it's important to acknowledge that at the same time (maybe earlier or later) their wives/female partners have already gone through the experience of pretty much exactly the same hormonal changes as they are experiencing with the difference being that the change for women is permanent.


I don't know if there's some sort of poetic justice in this but for those of us who might be thinking that HT is the end of the earth it's worth remembering that every woman who's been through menopause has had the same experience and managed to survive ok.


I found it slightly easier to deal with HT the longer I was on it. I understand that reaching some state of ease is also present with menopause, though women can take advantage of HRT for a period. HRT for menopause is usually not prolonged, with most women stopping because they don't feel the need to continue.


Jules


 

Edited by member 01 Dec 2022 at 01:31  | Reason: Not specified

User
Posted 14 Mar 2023 at 10:33

Wow Phil, fantastic to read your update.  You certainly have such a lot planned and so much to look forward to this year with your wife and family.  Just got to do everything you can when you’re able to with this precious life. Keith finds his daily workout on his cross trainer helps him physically and mentally.  
We’ve not been able to plan anything during the last six months as Keith’s brother (who only retired three year’s ago at the age of 72 and then found out he had a progressive chronic lung disease) became virtually bed-bound in October last year and being single/living on his own has needed our help. Unbelievably sad/depressing to see as he was such a fit, independent person who has now become so reliant on others to care for him 😢 


As we all keep saying, do what makes you happy and enjoy life while you’re able!


Love to all on the forum.


Ange x

User
Posted 12 Oct 2023 at 15:16

Hi its me again with a quick update. 
Just had a call from the hospital and my PSA has gone down to 4.75 and my T to 1.0 . So Abi and Zoladex working albeit quite slowly. 
To be honest I was expecting it to be bad news so I’m a bit emotional at the moment and quite tearful. No one knows how long it will keep working but I’ve got to just take each day as it comes. 
Off to Jersey tomorrow from Luton… getting a lift there and back as it’s supposed to be chaos in the remaining parking areas. We were booked in the car park which burnt down…. 
Hoping everyone is doing well ?


Phil

User
Posted 07 Dec 2023 at 12:15

Latest update: PSA same as last time at 4 and strangely Testosterone is back to 1.0. 
All other bloods are ok so staying on the 1 prednisone tablet. 
Although we decided not to find out where my cancer had spread to other than the lymph nodes I’m pretty sure now it’s to my bones as my consultant has booked me for a bone scan in 2 weeks. I do have some pain started in my left hip. I’ll find out if it’s PCa related or not after the scan.
Was a bit tearful before the call but overall I think the Citilapram is working better than the Mirtazapine even though I’m still tapering on/off. 


Been out in Jersey every month now and back out for Christmas and our son, his wife and our grandson are flying back with us for a few days in the U.K.


We had a few days in Spain in November visiting friends and it was so lovely and warm. Made me feel so much better sitting in 24deg sun.  And needed a day in France stocking up on wine. It is still so cheap there. The wine supermarket even pay for your ferry ticket plus you get the tax back 😁. And it’s a nice day out 👍


Hope everyone is doing ok and you all have  a brilliant Christmas and New Year.


Take care,


Phil

User
Posted 09 Jan 2024 at 13:21

Counsellor is right, unless you are able to care for yourself, then you can’t really care for others. Might sound selfish, but in reality it isn’t, it’s quite the opposite. 

User
Posted 09 Jan 2024 at 18:27

Originally Posted by: Online Community Member


 🤦‍♀️… I looked again and realised it’s for ED clinic…. What a wally… 



At the ED appointment, let's hope it'll be more a case of.... What a willy!.... 😁


 


 


 

Edited by member 09 Jan 2024 at 18:43  | Reason: Not specified

User
Posted 31 Jan 2024 at 14:28

So, latest update from my consultation yesterday. 
PSA has gone up to 5 from 4 so not so good. He told me I have spread to my spine and some ribs, which is slightly worse than the last scan in June. We didn’t know about this spread as I told them I didn’t want to know but he told me this time. 
Interestingly the cancer in my lymph nodes has shrunk a little. 
No mention of any change of meds except Dexamethasone replacing Prednisone because of my tiredness. 
So obviously the Abi + Zoladex isn’t working too good. 
So if I still have cancer which is responding to testosterone would it be a possibility to have the Op - you know the one where they mess with your balls so no more testosterone??? Not something I would like but if it gives me a year or so then maybe … ! 
Was a bit down last night and couldn’t sleep but bit brighter today 👍


Take care everybody


Phil

User
Posted 31 Jan 2024 at 15:10

That’s not so good Phil, the op you’re talking about I think is more common in India, as the medication is too expensive for some men there, but maybe it can be done here. 
I'm keeping my fingers crossed it’s a blip. Maybe think about some of the supplements and stuff we talked about, just a thought. It’s helped David immensely. 
Take care.


Leila.

User
Posted 31 Jan 2024 at 19:47

Hi Phil,


The op you’re thinking about is an orchidectomy. I’ve been reading through your profile and this thread Phil, and am sorry after everything you’ve been through that the results are not as good as you hoped.


If I’m ever in a position where I face a lifetime of HT I would seriously consider orchidectomy. If you’ve followed my journey you will see that Prostap certainly DOES NOT agree with me and I did wonder if switching to Zoladex would improve my side effects, although my CNS told me that Prostap was one of the kindest for side effects! Scary😱 


Some people say that it’s the lack of testosterone rather than the drug itself  that causes the side effects but I’m not convinced.


One thing that this disease has taught me (for the better I might add) is to enjoy every day as best you can and I’m pleased you are doing that too. Spending time with my family is so important to me and I’m lucky(some might say unlucky!🤣🤣🤣) that we have my son and our 2 grandsons living with us part of the time. It keeps my wife and I very busy and the laundry is through the roof, but you know just having them around has helped me get through this.


All the best,


Derek

User
Posted 14 Feb 2024 at 16:55

Hi Adrian. I started the changeover from Citalopram back to Mirtazapine 2 nights ago. The difference is amazing. Just on 10mg Cit’ and 15mg Mirtazapine and went out like a light… 🙂 My first solid nights sleep for 2 months… 


Just have to ween off Citalopram slowly now . I’ve done it before years ago and all I got was ‘brain zaps’ like an electric shock . 


Blood test next week then see Consultant again week after so obviously gonna be a bit anxious about that. 😬… 


Take care 


Phil

User
Posted 14 Feb 2024 at 18:45
Hi Phil , I have a Zopiclone each night. It’s not a sleeping tablet as such but just tips you into sleep. I get little electric shocks in my eyes. Mirtazipine is a very powerful drug. First time I had it I slept on and off for 24 hrs. Heaven 😀. At higher doses it becomes an anti-depressant and doesn’t add to the soporific effect. I rarely take it but have a packet upstairs. Maybe I should treat myself lol. Keep well mate 👍💪
User
Posted 15 Feb 2024 at 21:35

Hi Phil,


Enjoy your evening, we shared a decent bottle of red last night, and had an evening  with friends earlier in the week. This PCa isn’t easy for you lovely lads, you have my utmost respect. Sometimes in the small wee hours I think about the future, then remind myself to value each day. I am not a good sleeper, so I have a few wee small hours to think, not all negative thankfully.
Managing emotions and feelings is such a complex process, and has so many layers to deal with, and harder for some than others. 


Take care Phil, you are in our thoughts . 


 

User
Posted 10 May 2022 at 10:14
Hi Phil. Sorry to hear you’re going through it again. I think with multiple lymph involvement ( I have 4 that I know of in various positions between stomach lungs and shoulder ) it is pointless trying to zap or remove them. From my little knowledge your lymphatic system is like a super-highway in the body , and once it’s in there it just won’t go away whatever they do. Hence just starve them with the HT !
I feel for you as I’m just behind you and dreading the PSA eventually turning even though I know it will sooner or later. Keeping strong and positive is very difficult at times but my wishes and strength go to you
User
Posted 10 May 2022 at 12:47
It could well be because you've already had your "lifetime dose" of pelvic RT and they can't give you any more. It would certainly be worth asking why.

Best wishes,

Chris


User
Posted 10 May 2022 at 20:29

Good Luck Phil


Did my suggestion to ask about Lu-177 get removed?


I thought I’d suggested you ask about it?


Fingers crossed they have a plan. Maybe a clinical trial could be considered too


 

User
Posted 10 May 2022 at 23:06

Hi Claret , it does appear that your post was removed 🤷🏼‍♂️. No idea why …. ?


But I remember what you said and I’ll investigate the Lu-177 and the link you sent , thank you .


Phil


 

User
Posted 10 May 2022 at 23:44

Hi Phil, I am so sorry to hear of the situation you find yourself in.  It must be really hard for you and I am thinking of you. I hope your Consultant is able to offer more RT/further alternative treatments going forward.


Ange x

User
Posted 11 May 2022 at 17:52

Hi,  Replying to your request for information.  I read a few places but there's a YouTube channel called The Prostate Cancer Research Institute which has a lot of interesting, basic and short videos.  It's American.  They don't like names on here, Dr S....z is the one I prefer to view, he's a prostate focussed oncologist.  Here's a link  https://youtube.com/c/ThePCRI


 

User
Posted 17 Jun 2022 at 11:53

So sorry to hear about the increase in your PSA level Phil.  Fingers crossed the Bicalutimide will be effective without giving you side effects to cope with, as well as those from the HT.  You’ve kept strong Phil and I’m sure you’ll continue to do so.


Good to hear you’re continuing working on your old motorbike and your new summerhouse, as you say you have to make the best of every precious day.


I know what you mean about time flying by, we were talking with friends about Jimi Hendrix and I remembered going to see him live on stage in the 60’s (great experience).  So many lovely memories over the years and hopefully we all have many more years making memories with our families and friends…


Best wishes to all on the forum, stay strong and take care of yourselves.


Ange xx

User
Posted 17 Jun 2022 at 22:20

What a difference another day can make. So glad you feel better about moving forward. Look forward to seeing a picture of your bike soon!! Ange x

User
Posted 12 Jul 2022 at 12:04

Tried to post a photo of my almost finished bike but the site doesn’t like it so I’ll just change my profile picture ….


1973 Kawasaki 350 Triple.


Not a good photo I’m afraid. The bike was a pile of rust not used since 1979 completely rebuilt down to the last nut and bolt.


It’s kept me busy for 6 months and my mind off other stuff. 


Phil

Edited by member 12 Jul 2022 at 12:12  | Reason: Couldn’t post a photo

User
Posted 12 Jul 2022 at 13:18

Wow, looks like you’ve made a fantastic job of your motorbike Phil.  Keith is really envious!!  He had motorbikes in his teens/twenties and would love to relive the thrill again.


Its so good to have an interesting project/hobby to keep you focused.  These have certainly helped to keep Keith going since he was diagnosed in September 2019.  Feeling nervous as it’s his second PSA test coming up since finishing HT.  I don’t think that worry will ever go!!


Hope you’re doing okay since your Consultant has added the Bicalutimide to boost the Zoladex.


Look after yourself and enjoy great family times.


Ange x

User
Posted 12 Jul 2022 at 21:23

Great positivity Phil.  Have a wonderful time in Jersey with your family and, as you say, savour each day x

User
Posted 12 Jul 2022 at 23:54

Hi Phil, 


The bike is marvellous, and it does provide time away from worrying about PCa. Keep going Young man. David is is doing the Care Oncology Protocol might be worth a look. Keep going, lots of bikes need attention. 
Leila x

User
Posted 07 Oct 2022 at 10:23

Hi Phil,


It’s good to read your update and hear that your PSA is staying steady.  Keeping everything crossed that it stays that way, or even lower, for a very long time.  You’re certainly not letting the grass grow beneath your feet, a three week trip to Canada must have been amazing!!  I imagine a trip to Jersey to see your family again will be next on the agenda.  


Ange x


 

User
Posted 07 Oct 2022 at 14:51
Hi Phil good news I guess , and great to hear you’re coping better than you expected. Glad that holiday worked out. Looked stunning. Keep up the fight brother 👌
User
Posted 07 Oct 2022 at 15:29

So pleased you had a good trip to Canada, a place I’d love to go. A stable PSA, pleased for you, another three months of decent autumn life before the next test.


I hope you are managing to stay positive young man. 


David’s PSA is currently <0.1 and he’s doing well. Though the mood swings are a bit of a pain sometimes. I try to remember it’s not his fault, though sometimes I am less patient. 😉 


I’m still working in  on perfect wife role, never managed it so far. I’ve got a lot of work to do in that area.  I’m still working in his dietary needs, and he’s found a sugar free carb free Italian beer, that tastes ok, so he delighted. 
Our lives are good, and we are thankfully quite positive.


Take care.


 


Leila x


 


 


 


 


 

User
Posted 22 Nov 2022 at 19:47

Hi Phil, 


This bl%#dy disease will definitely get more than a run for its money. We ain’t giving it a chance. What a wonderful story you met the love of your life at 15, how special is that. We met in 2003 sadly a bit later in life but I know I’ve met the right one. He’s a keeper, we are delightfully happy. We’d both been married before, and this was unexpected for me, as I wasn’t looking to meet anyone, I was happy alone.
Dave’s PSA was < 0.1  we are delighted. The mixture if prostrap & the London clinic seem to be the right recipe for him. He’s careful with diet and stuff, but he feels good and we seem to be toddling along quite well. 



take care Phil, 


 


Leila. 


 


 

User
Posted 23 Nov 2022 at 00:48
That's lovely - I was 16 when I met John and we married as soon as I was 18. He had a Vauxhall Viva - it is our ruby wedding next May.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Nov 2022 at 11:03
Haha my first wife was 16 when I met her (I was 19) 34 years later she p****d off and left me with cancer and debt.

Best thing she ever did for me!!!
User
Posted 23 Nov 2022 at 11:59

Originally Posted by: Online Community Member
Haha my first wife was 16 when I met her (I was 19) 34 years later she p****d off and left me with cancer and debt.

Best thing she ever did for me!!!


Sorry this worked out badly in your case, relationships are a lottery and sometimes people grow apart or become strongly attracted to somebody else.  I seem to remember you saying that in your case it was your PCa that precipitated your partner leaving which is hard and the opposite of the great support the most of us men receive from partners. 

Barry
User
Posted 01 Dec 2022 at 07:53
Menopause in women is not the same as HRT in men. Do not let them kid you it is!!

HRT stops the production of tostesterone more or less completely.

Menopause in women reduces the production of progesterone and oestrogen over time (but does not stop it). Tostesterone production in women is unaffected by the menopause, it does reduce as they get older (like men) but it is unaffected by menopause.

https://www.menopause.org/for-women/sexual-health-menopause-online/changes-at-midlife/changes-in-hormone-levels
User
Posted 06 Dec 2022 at 19:59
I think a lot of us feel we are just hanging onto the edge of sanity - even without PCa, it has been nearly 3 years of trauma and uncertainty and fear. If we are all on the same window ledge, we just need to have someone holding on.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Dec 2022 at 15:56

Hi Phil, I would think it was helpful for you to write about your childhood experiences, etc., even if you deleted what you had written.  Life can be so cruel in so many ways for so many people.  I always say to myself when I have a bad day forget today and start again as ‘tomorrow is another day’ and I can usually see things in a different light.  You do have strength Phil, just look at how you have coped with what life has thrown at you.


I hope today has been a better day for you.  The camaraderie on this forum is amazing - just knowing we are all there for each other.


Take care,


Ange x

User
Posted 31 Jan 2023 at 12:38
I think matron will give you the best answer. Probably next step is to try Abi or Enza. Abi technically not authorised in England yet , but my Onco said I may get it as less side effects and he knows I’m keen on QOL.
Don’t think changing to Deca would help as they all pretty much do the same job. Sometimes Chemo is offered upfront with either drug or can be saved for later.
Keep strong brother 💪
User
Posted 31 Jan 2023 at 12:44

Cheers Chris. Didn’t know Abi wasn’t authorised yet. Fingers crossed I won’t need it yet but not holding my hopes up. 
This has really hit me and just started back at the gym and I find myself thinking why am I bothering …. But then I give myself a good talking to as it’s not just about me. 


Phil

User
Posted 31 Jan 2023 at 16:58

Originally Posted by: Online Community Member


So, been thinking, which is probably not such a good idea but here goes. i have 2 possibilities with a rising PSA . I haven’t added the possibility of a blip because I really don’t think its that. 


1 - Zoladex and Bicalutimide not working to reduce my Testosterone enough.


2 - Cancer has become resistant


So, if it’s option 1,  can they increase my Bicalutimide to 100mg or even 150mg , or put me on Decapeptyl instead ?


If it’s option 2 , what are my options Aberitone or Enzalutamude ??


Whats the likelihood of Chemo treatment to reduce the tumours for a little while. 


Take care


Phil



 


Seems a good summary of where you are. The way to determine whether you are in situation 1 or 2 is to have a testosterone test; it is a bit disappointing that your onco hasn't suggested that. If your testosterone is below 0.7, the HT is working but the cancer has become hormone independent (or castrate resistant) so time to add abi / enza / apa. Another possibility is that the cancer has learnt how to turn the bicalutimide into food. If your testosterone is above 0.7, the HT isn't working effectively enough - there is still some testosterone floating around for your cancer to feed off.


Withdrawing bicalutimide might get you a bit of breathing space - this is known as anti-androgen withdrawal response (AAWR) as the bical is removed and the cancer thinks it is being starved again. Some men can have an AAWR that lasts for months; others don't get an AAWR at all. 


 


If you have become hormone independent, the next step would probably be to add one of the third generation drugs. Apalutimide is also now approved alongside abi and enza and, in theory, is even more effective although I think it has turned out to be more expensive than anticipated so we are not seeing many men get it. 


I think abiraterone is approved in England for men who are hormone independent so it should certainly be on the table unless you have other medical conditions that would preclude it. The confusion may be with apalutimide which is approved for men who are hormone responsive but only available as a trial for men who are hormone independent? 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Mar 2023 at 22:14
I’ve never once had a T result since start of HT and would rather not know unless something was bad. I know it would be lower if I’d accepted early Enza , but I’ve maintained a QOL way beyond my dreams. Just doing my own thing as ever much to my Onco’s annoyance.
My councelling has run out also at every avenue and it’s just too hard to start with someone new with a long previous history. Good luck though friend 👍
User
Posted 09 Mar 2023 at 23:04

Ahhh, sorry to read about having to start off with a different counsellor, that’s hard for you. I suppose at least you have been offered it Phil, I hope it helps you. Keep going.


Leila

User
Posted 10 Mar 2023 at 15:26

So sorry to hear you’re struggling again mentally Phil.  Hope the counselling sessions will help to put things into perspective again.  Keep looking forward and making plans for holidays to look forward to. 
Thinking of you and everyone on the forum.


Take care,


Ange x

User
Posted 13 Mar 2023 at 13:06

Thank you guys/gals for your kind thoughts. Although I’m having a few really down days I am better than I was at the start when I was on Prostap. No idea if the Prostap caused it or it was just time for me to try to deal with my demons..  Hoping to get a call from the counsellor soon to arrange our first session. 

Really looking forward to our holidays … Wednesday off to Jersey (again) and down the Mississippi in May. Our oldest and his wife are expecting so we’ll be back out there in August… so excited about that. Hoping to fit in a visit to friends in Spain sometime too. 
Next year , hoping I’ll still be feeling ok , we’ve a wedding in Maine USA and possibly a visit to Japan with our youngest and his wife. 
Glad this disease isn’t yet stopping us getting away, or the exorbitant travel insurance…!



Regarding my Testosterone, I’d like to know just to see if it’s my treatment failing or if the cancer has become independent. Although I suppose either way it would mean onto the next Gen drugs. I still have a ridiculous hope that the PSA might have gone down. 🤷🏼‍♂️. 


I’m visiting the gym 2 or 3 times a week now and I’d recommend it to anyone to help not just physically but mentally as well. It’s been 4 years since my Tough Mudder and I’m enjoying trying to get back to that fitness again ( and lose my wine belly)…. 


Take care everybody, 


Phil

User
Posted 16 Mar 2023 at 09:08

Hi Phil, 


Thanks for your reply, we’ve had a week of swimming and walking in Cornwall at a lovely spa holiday complex. David’s swimming about 3/4 mile a day I’m doing  about 1/2 with a bit of walking as well. A glass of wine in the evening and a decent meal out. 
Counselling can be such a challenge, I admire anyone who has the strength to go trough it and address their demons from their earlier days, people sometimes think it’s the weaker people who choose it, but it’s not is it!


Reflecting and addressing past lives and learning how to manage our demons can be one hell of a challenge. 
Also delighted to read you are going to see your grandchild, such a joy.


We have a home gym that we both use, regularly, with weights rowing machine and a bench, it does us so much good in the winter when we can’t get out enough. He’s going to do more weights, we’d join a leisure centre if we lived nearer, but we live quite rurally. 
The garden is our summer exercise,  we have plenty to do here. We tend to go on holiday in winter as we have our veggie smallholding to manage, that keeps us busy. 
David seems to be doing well, PSA < 0.1 bloods all good, and he on the whole quite positive, though he does enjoy a good moan. His rationale is there is a lot to moan about. He has lost about a stone in weight, with his change in diet, sadly I have to work harder to loose weight, it’s my demon. 
 Keep going Phil, and take care.


Leila 


 

User
Posted 28 Mar 2023 at 11:43

Hi Phil, 


No advice, I’m afraid, just hope you get it sorted out  soon. Remember, you did go to the gym, you did get out of bed. 


Take care


Leila 

User
Posted 28 Mar 2023 at 11:49

I haven't heard of that before, so may be unrelated.


It might be an idea to get a GP appointment (if you can).

User
Posted 27 Apr 2023 at 19:17
All the very best wishes Phil. I hope it’s good news or at least not bad news. Keep in touch and keep well. Battle those demons and stay busy. You know as well as I do that it keeps us sane 👍
User
Posted 28 Apr 2023 at 16:45

Hi Phil, I’m hoping for a miracle for you too!! You have been doing everything you can to keep yourself as fit as you can and as busy as you can, so you’ll certainly have the strength to keep fighting.


With very best wishes to you and, as you say, summer is on the way…


Ange x

User
Posted 04 May 2023 at 14:51
Try cutting out the carbs too, worked wonders for me...
User
Posted 10 May 2023 at 12:37

Hi Phil 


Oncologists always say urgent this and urgent that mine is the same had to have an 'urgent' scan and an 'urgent' full bone x ray last month for my next appointment on the 1st of June then the nurse says there just routine because it was 12 months since I've been diagnosed,maybe them saying 'urgent' makes them feel good,at the end of the day what will be will be just keep looking after yaself eating well and keeping fit,not a lot you can do about those nasty little cells inside us,just try and keep them at bay for as long as possible.


Regards Phil 

User
Posted 10 May 2023 at 13:37
I think 'urgent' is so that it isn't put on the routine scan waiting list. In our area, the wait for routine scans is over a year.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 May 2023 at 17:12

Such an anxious time for you Phil. Hope you can go away and chill out for the two weeks.  Everything crossed for the Prostap to work well for you and for good results to come back to.


Ange x

User
Posted 10 May 2023 at 18:22
I have everything crossed for you - have a brilliant trip x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 May 2023 at 19:22

Fingers firmly crossed for you. Have the best of holidays and I’m not at all jealous ( honest) 


Leila 

User
Posted 17 May 2023 at 10:27

Hi Phil,  just wanted to say, now your scans are done, have a great holiday and all the very best for your results.  


Take care,


Ange x

User
Posted 04 Jul 2023 at 21:24

Originally Posted by: Online Community Member
To be honest I find it fascinating to hear about the mind works. I told my counsellor that i had to write down about my childhood to try to get it in chronological order as its as all over the place. She said during trauma they brain struggles to put the memories in the right place and they get jumbled up. We’ll i would never have guessed that, so interesting.


Apols first to anyone who doesn't want to read about abuse - don't go any further.


Goalhanger, there are a few members here who have made reference to their childhood experiences of trauma - I think for some children who have been sexually abused, anything below the waist is blocked off emotionally as much as possible so a prostate cancer diagnosis forces it out of the box simply because of where the prostate is situated. The DRE during the diagnostic process doesn't help. And statistically, almost 1 in 20 children experience CSA so not surprising that there will be active members on a forum (about any topic) who share that history of trauma. You should not apologise about posting - if people feel uncomfortable, they will click on.


Re the jumbling up - imagine that the brain has a bookshelf in it or filing cabinets or a series of storage boxes. Normally, we have an experience (going on holiday, watching a film, reading the news) and then we file it on the bookshelf or in the box. The next time we have a similar situation, we scan our bookshelf "now, what do I know about this situation? Ah! I saw another film by the same director and enjoyed it." That helps us to decide whether the new situation is safe / familiar / likely to be fun or unsafe / a bit scary / something we don't want to do. When something happens, we deal with it and then say things like "I needed to close the lid on that" or "I am glad to have that sorted" which is a description of filing it away on the bookshelf or in the box. When a child experiences trauma, they can't always make sense of or rationalise it so it remains unresolved and can't be put on the bookshelf or filed away. Instead of a nice neat filing system, the brain is filled with boulders of unresolved stuff so the now grown adult can't find memories in the places where they expected them to be ... timelines don't make sense, or memories of who was there and what happened next are unclear. It is a known phenomenon and there is specific guidance for professionals now that when a child is telling about harm or neglect, a lack of consistency or inability to give details does not mean it didn't happen. We have moved on a lot in the last few years!         

Edited by member 04 Jul 2023 at 21:25  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Jul 2023 at 16:45

Ok so very quick update , as I’m not feeling very talkative today ☹️


Saw my consultant yesterday and my PSA has gone up to 9.3 now , from 8. something 2 weeks ago. My consultant isn’t worried , yet, as I’d only been on the Abi + Predisolone for 14 days. She’s said keep going with current treatment. Back to hospital in 2 weeks time and another blood test. 
 
Still forgot to ask about my new lesions… 🤷🏼‍♂️. 


So feeling a down at the moment. Can’t stop thinking about what’s next . Don’t worry I’ll be back to my chatterbox self soon enough. 

Take care y’all… 


Phil

User
Posted 12 Jul 2023 at 17:11
Showing great strength Phil. You may feel like a mouse inside but you’re a regular lion. Keep on talking as much as you want on or off the forum. You got this and we all got you ok. Best wishes mate 💪
User
Posted 20 Jul 2023 at 14:10

Hi Guys, its me again… 


Just got back from a night away in a swanky hotel with the missus for her 60th birthday. We set off home straight after breakfast as she is working this afternoon. Well we got about 200 yards and i had to stop as i felt sick, and ended up barfing my full English over the Rectory wall with a builder looking on. He’s probably thinking I shouldn’t have drunk so much last night , which I didn’t by the way. The missus drove home. Ive been getting this a little while now, not every day and not often fully sick. I will be mentioning it to the consultant next Tuesday in case its related to one of the pills I’m taking.


I’m also getting some fatigue like I’ve never experienced before even on the Prostap or Zoladex. So exhausted i can barely walk and just need to lay down for a couple or 3 hours. Not every day but fairly often now. I’m hoping this will pass eventually but I’ll mention this also. I really don’t want to have to change off the Abi now as it’s reducing the options i have left. It’s getting me down a bit although wont mention this to the missus.


Hotel was lovely by the way, service was perfect, room was excellent albeit it a bit noisy ( thanks to the upstairs guest who decided to start talking at 3am and TV on loud at 6am). It is in a Suffolk country village renowned for its medieval architecture and all that stuff. We had half a day and the night and it was interesting but we are city people really. We love the buzz of a city and we also love the sea/water. We had to dodge all the couples in their funny hats, walking boots and hiking sticks studying the plaques on the walls saying how old the houses were ……. Each to their own 😄. Apologies to those reading who own funny hats, walking boots and hiking sticks 🤣. I probably looked well out of place in my polo shirt, shorts and white trainers…. 🤷


Take care everyone, I’m sure i will be back again with some comments about Life, The Universe and Everything…


Phil


 

User
Posted 26 Jul 2023 at 19:02

Thanks Goalhanger,


Yes, you can put away the funeral plan for a while yet.  So far, so good.  Long may it continue.


Best wishes,


JedSee.

User
Posted 26 Jul 2023 at 20:32

Congratulations, great news.

User
Posted 26 Jul 2023 at 22:18

Great news Phil, just what you needed to hear.   Take care, Ange x

User
Posted 26 Jul 2023 at 23:49
Whoop whoop!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Jul 2023 at 12:30

A reduction in PSA!!! 


Absolutely brill.

User
Posted 27 Jul 2023 at 13:03

Fantastic news Phil really pleased for you 👍gaz

User
Posted 27 Jul 2023 at 14:28

Congratulations good news long May it continue 


ann

User
Posted 27 Jul 2023 at 19:26
Really fantastic news Phil. You’ll be here for a good while yet I’m sure. Take care buddy
User
Posted 10 Aug 2023 at 13:24

My fortnightly update : PSA now gone down to 6.1 ( from 7, 2 weeks ago and 9 2 weeks before) so 9 to 6 in 4 weeks not too bad. Feeling very relieved as I was worried the last drop was going to be a blip. 
Testosterone also dropping now , so the Abi definitely doing something. Blood pressure perfect and no other issues to worry about. Still keeping me on 2 weekly checks for a while though. Just a pain going to hospital for blood test, then back again for consultation and then again to pick up more tablets, every 2 weeks. But I’m not complaining, really 😁. Just hoping that things progress so I can get back to 3 monthly checks as every 2 weeks can be quite stressful. 


I did ask about my new lesions , and said I wasn’t sure I should know or need to. She said I don’t need to know , just that the treatment is working. I suppose she’s right really. I’d only worry if it was now in my bones or even elsewhere.


On the grandson front we are still waiting. Due date tomorrow. I just phoned them and they are on the beach having a swim. Hopefully he will pop out this weekend and we can get some flights sorted and be out there Sunday or Monday to see the new addition to our family. Keeping fingers crossed they add Jersey back into Southend airport soon. It’s only 20 mins away whereas Luton is a s*** hole airport and takes over a hour by car (then of course there’s the exorbitant parking fees).



Anyway it looks like the weathers taking a turn for the better now so gotta enjoy it while we can. 24.5deg in my car yesterday…. ☀️ 

Hope everyone is ok out there ?


Take care all of you. 
Phil

Edited by member 10 Aug 2023 at 17:27  | Reason: Added new lesion information.

User
Posted 10 Aug 2023 at 17:59

Great news Phil, really pleased to see your testosterone and PSA dropping.


Best of luck for the new arrival and enjoy your time with the family x

User
Posted 10 Aug 2023 at 19:11

Brilliant news Phil.  Hope it won’t be too long before you’re on 3 monthly checks.  The arrival of your Grandson will be the ‘Icing on the cake’.  Enjoy some precious time with your family xx

User
Posted 11 Aug 2023 at 10:55

That’s sounds really good Phil, excellent news. Keep going, try to keep positive and enjoy the forthcoming grandchild.


 


Leila 

User
Posted 24 Aug 2023 at 12:24

So here we are again. Latest 2 weekly consultation this morning. Knew it wasn’t great news when i saw my main man coming into the room. PSA still at 6 , so not so good. Testosterone is just above 1 and he said he’d like it below 1 . He thought i was on Degarelix so i corrected him that i was on Prostap monthly. Wonder if changing would make any difference ? I seem to doubt it.


Still not feeling any side effects of the Aberitone so that’s good. Still managing 2 hard 2 hour gym sessions a week plus badminton. I do push too hard but i like that feeling afterwards so as long as its not hurting me ill keep pushing.


He has reduced the Prednisolone to 1 tablet of 5mg instead of 2 . Not sure why that is ? Maybe due to my lack of side effects. Keeping me on 2 weekly visits although he was going to go to a month but i will need a new prescription before then so he said come back in 2 weeks. Hoping to see a reduction in the PSA then and moving onto 1 monthly visits. 


So, all in all not feeling so great . Trying not to think of the reasons for the static PSA. Just hoping my PCa hasn’t become castrate resistant. Also wondering what they will do if it stays static next time and what that means. Will they say stick on the Abi, or will they want to try Enza. Also wondering if it’s ok to have static PSA at 6 ? Does it mean the PCa is still growing but very slowly?


Counselling still interesting … She asked me last time if she had 3 pills but i could only have one which would I choose. First pill would stop me thinking of the past, second one to stop worrying about the future, and the third to make me like myself more. I chose the third straight away, and promptly broke down again.. bloody hell she knows the triggers all right. 


Grandson still not popped out , so still waiting to book flights to see him. Got to be soon as she is 2 weeks overdue tomorrow. 


Gonna have a coffee and a sneaky bit of chocolate bar. I think I’m owed that !


Hope every one is doing ok? 


Take care all,


Phil

User
Posted 24 Aug 2023 at 15:28

Originally Posted by: Online Community Member
Testosterone is just above 1 and he said he’d like it below 1 . He thought i was on Degarelix so i corrected him that i was on Prostap monthly. Wonder if changing would make any difference ? I seem to doubt it.


Changing can lower Testosterone. I have heard of people switching both ways between Prostap and Zoladex. It's not that one is always better, but in some people the other one works better.


I don't know the comparison with Degarelix. It gets Testosterone down much faster when you start. It requires 4-weekly injections, which usually generate more inflammation.

User
Posted 25 Aug 2023 at 11:14

Hi Phil,


Please don’t be too hard on yourself!!  All each of us can do is our best and I know from our conversations on the forum you have certainly done that.  You come across as such a lovely family man and the joy you will feel when you meet and hold your first Grandchild will be absolutely amazing, take it all in Phil and enjoy those precious moments with the love of your family.  I used to worry about what everyone thought about me and I was so easily intimidated by all but now at the age of 71 I cherish each day with my family and friends and I know each day going forward matters more than what’s past and I focus on all the happy memories I have.


Keep doing what you’re doing and stay strong.  


Love to you and your family.


Angex

User
Posted 29 Aug 2023 at 13:09

Lovely news, congratulations Phil. Fingers crossed for your flights, have a great time x

User
Posted 29 Aug 2023 at 15:35

How wonderful, congratulations!

User
Posted 05 Sep 2023 at 12:37

Hi Phil


Glad you had a good time with the family,I know exactly where your coming from when getting home to reality to bloodtests and appointments and preparing yourself for results and what the oncos are going to say,but as long as your feeling well,sleeping got your appetite that's gotta be a good thing,there's not a fat lot you can do what's going on inside you,just keep active,eat a good diet and be positive.


All the best regards Phil 

User
Posted 06 Sep 2023 at 09:19

Congratulations to you and your family Phil on the birth of your beautiful Grandson, wonderful news.  I’m keeping everything crossed for you for tomorrow’s results.


Take care,


Angex 

User
Posted 07 Sep 2023 at 14:26

A reduction is good to hear Phil.  Enjoy your afternoon and a beer with mates later..


Angex

User
Posted 07 Sep 2023 at 16:30
Nice one Phil. Chuffed to hear your good news. You’re obviously a bit of a stud if they can’t get your T down. Always thinking of you friend 🙏
User
Posted 07 Sep 2023 at 17:19

Going in the right direction. Enjoy the grandchild, the sunshine and always a good book. 


Leila 

User
Posted 22 Sep 2023 at 12:28

Hi guys, just checkin’ in. Just had the first of my next round of Zoladex implants. Don’t understand why my consultant thinks it’ll work now as it didn’t earlier in the year. Got my consultant letter yesterday and he’s written he’s not happy with my T which is still at 1.3 . Feeling a bit down today about it at the moment.
Booked up our next visit to Jersey in a couple of weeks so that’ll cheer me up. And off to see ABBA voyage next weekend with a night in the Tower ( the hotel not the prison 🤣).


Hope you’re all doing well ? 
Phil

User
Posted 22 Sep 2023 at 13:13

Good luck with the Zoladex this time round Phil.  Great to hear that you’ve booked to go to Jersey to see your Grandson and family again, he’ll certainly put a smile on your face, enjoy those ‘special’ cuddles…
Angex

User
Posted 22 Sep 2023 at 14:57
Good luck Phil. Just keep on with all that living and nice times. Thinking of you mate
User
Posted 13 Oct 2023 at 23:22

That’s good news Phil.  So pleased to hear you’re off to Jersey again.  As you say, a day at a time and keep doing as much as you’re able to do.  I will picture you at your favourite pub in St. Aubin over the weekend.  Take care and enjoy yourselves with your family.


Ange x

User
Posted 02 Nov 2023 at 12:49

Hi Guys. Having a bit of a wobble thinking of my next blood test and consultant meeting next week …. 😬
So looking forward to going back to 3 monthly checks as the 2 weekly and even 1 monthly is so hard to relax in between although I do understand they want to be sure the Abi is working and no nasty side effects… 

Trying to keep busy , went to the gym Tuesday and still aching from that. But missed my badminton yesterday as me and the missus went to do some Xmas shopping in Chelmsford and out with friends last night to a restaurant we’d not been to and it was lovely 👍. 

Shame the weathers been a bit turbulent… Family in Jersey all ok after a bit of a battering last night. There’s a bit of food shortage over there as boats couldn’t sail and they can’t get Formula milk for the baby so hoping they get a delivery today. 

Hope everyone is ok out there in the big bad world? 


Phil

Edited by member 02 Nov 2023 at 12:50  | Reason: Not specified

User
Posted 09 Nov 2023 at 14:30

So, latest update after my consultation today . PSA has dropped further to 3.99 from 4.75, which is good. What’s not so good is my Testosterone has gone up to 1.5 . 
My consultant is going to try the 3 monthly Zoladex to see if it helps. 


Anyone any thoughts out there ? Presumably if my PSA has gone down that is good but I’m now worried that my PSA may rise due to the T rising . Like a delayed action. 


Should I be worried by the T or just concentrate on my PSA .


As you may have guessed I’m not feeling confident this treatment is working that well and even with a reduced PSA I’m feeling a bit deflated and tearful. 


This disease certainly takes you on a rollercoaster of emotions . 


Take care 


Phil

User
Posted 07 Dec 2023 at 12:19
Living the life, keep it up goalhanger..
User
Posted 08 Dec 2023 at 13:56
Hey Phil you will be having an upper body CT with the contrast that makes you feel like you’ve wet yourself. The Nuclear medicine is for a bone scan. They’re a pain. You get injected and then have to return 3 hrs later for the scan. Depending on the machine it takes an hour or a half hour. They may ask for additional pictures after. That’s normally when they’ve found something. Good luck friend and keep strong 💪
User
Posted 08 Dec 2023 at 14:12

Hi Phil, 


David had this scan, it was time consuming and we had to hang about in some draughty shopping centre rather then the hospitality of the hospital. He was there about an hour or so, he said it was manageable, the staff were great. He didn’t go into great details, and he got the results quite quickly. 
So pleased you are enjoying your grandchild, they are such gift, squeeze every day of fun with your family.


Leila 


 

User
Posted 08 Dec 2023 at 18:09

It’s so good to read your latest updates Phil, you’re certainly sounding in good spirits - what a great joy Grandchildren are.  Keep enjoying your time with your family and good luck with your upcoming scans.


Have a great Christmas and New Year.


Ange x

User
Posted 14 Dec 2023 at 12:13

Well that’s the CT scan out of the way. The aniseed tasting liquid wasn’t too bad. But took the nurse 5 attempts in different places to get the cannula in. So got plasters all over the place. 
Last time I didn’t really notice the contrast dye going in so much, but this time it was very weird. It felt like loads was going in and I got really hot for a few seconds, which is when you think you’ve wet yourself. 
My back is still really painful and my GP has put me on 30mg Co-codamol which is pretty powerful. It’s working but doesn’t last so I have a period where I’m using Ibuprofen to dumb it down. 
Just hoping it’s Sciatica as my GP thinks and not PCa spread.


Take care everyone 


Phil

User
Posted 02 Jan 2024 at 15:31

Hi Phil,


I hope things settle down for you, Christmas can be a hard time, especially all the hype and family stuff, as lovely as it is it can sometimes result in a bit of a post  holiday letdown. Getting back to routines will hopefully help stabilise your life a bit. Getting that appointment may help too.


We both had planned holidays and stuff, but I managed to get a chest infection that seemed to hang around far too long. Thankfully David didn’t get it. So our plans were royally scuppered. 
Let us all know how you get on. 


I hope 2024 is as good as it can be for you and your family. 


Leila. 
 

User
Posted 03 Jan 2024 at 17:08

Thank you Leila. Yes looking forward to getting back into a routine. Even eating times were all messed up which affected when I could take my Abi. Christmas Day I had to take it at 6pm instead of my normal 8am.. 
Sorry to hear you had to cancel your plans. So annoying especially if you’re not feeling well.


Hope you are back on form now? 


Let’s hope 2024 brings some good things 👍


Take care


Phil

User
Posted 08 Jan 2024 at 11:33

Hi Guys. Well I just received my next appointment at the weekend for this Thursday. That makes it a bit tricky to get my blood test done before. I’ve tried phoning the hospital, no answer so left a message. Also no blood test form in the letter. So in the end I will just go up there tomorrow ( they don’t do blood tests on a Monday) and say I need a blood test form and the test. Maybe he doesn’t need a blood test anymore and will just use scans for reviewing spread. 
My consultant said he’d leave it for 8 weeks last time but this has come at 5 weeks so I’m a bit worried what has shown up on those scans.. 


To say I’m a bag of nerves would be an understatement 😬. I feel very selfish feeling like this as I know I should appreciate every day that I am still relatively healthy. 


Take care everyone, hope you’re all good 👍


Phil


 

User
Posted 08 Jan 2024 at 12:38

Originally Posted by: Online Community Member


To say I’m a bag of nerves would be an understatement 😬.



Don't beat yourself up mate. Its perfectly understandable for you to be anxious. Very best of luck to you.


Adrian.


 

User
Posted 08 Jan 2024 at 13:25
Good luck Phil. Always thinking of you friend 💪☺️
User
Posted 08 Jan 2024 at 14:13

Hi Phil, 


Thinking about you, the stress times are hard going aren’t they. Let us know how you get on.


Leila 

User
Posted 08 Jan 2024 at 20:01

Hi Goalhanger,


You have nothing to apologize for, and you are not being selfish by being concerned about your own health.  Why shouldn't you be?  Yes, it's good to be glad for every day that we live, but if we're enjoying life then we want it to continue.  So, anything that reminds us of the precarious nature of our existence often brings on anxiety. 


Be kind to yourself.  Hope all goes well at your review.


Best wishes,


JedSee.


 

User
Posted 09 Jan 2024 at 09:49

Stay strong Phil.  Good luck for Thursday, we’re all there for you.


Ange x

User
Posted 09 Jan 2024 at 10:16

Thank you so much for your lovely messages of support. Really appreciate it and it does help. 
On my last counselling session we talked about being kind to yourself. My first counsellor told me that, and I don’t think I really understood what she meant. I think I finally got it on that last session with my next counsellor . I have to accept I’m not perfect and make mistakes. I think I’ve always thought more of other people and not myself. So maybe it’s time to be a little bit selfish ….. 


Thanks guys. I really appreciate the support. 


Take care


Phil

User
Posted 09 Jan 2024 at 18:07

Hi guys I went to hospital today and told them I needed a blood test for my appointment Thursday… she looked at my form and said this is for July and it’s not for your consultant 🤦‍♀️… I looked again and realised it’s for ED clinic…. What a wally… 


The letters all look the same and it’s hard to tell what they are for… 


So, haven’t got my consultant appointment yet , gotta wait some more…

User
Posted 31 Jan 2024 at 15:22

Hi Leila, I will definitely be looking at the list David sent me. I’ve already started the pomegranate juice 🙂. I did look before but I’m not very good at keeping a regime. 😬



Although I was half expecting this it still kinda gives you a shock . I was quite surprised I didn’t burst into tears but my consultant was so upbeat . Said the increase in PSA was a small jump … 


Just a quiet day today  gathering my thoughts. We have so much we still want to do. 


Thanks 


Phil

User
Posted 31 Jan 2024 at 15:24

New Avatar is me and the missus on the paddle steamer last year. 

User
Posted 31 Jan 2024 at 19:03

Hi Phil, Nice photo of you and your lovely wife.  Sorry to hear about your results, not surprising that you felt down yesterday after receiving them. As we say, tomorrow is another day and you can feel different.  Keep planning your trips to Jersey to see your family/Grandson and do as much as you are able to do.  Thinking of you, take care.


Ange xx

User
Posted 31 Jan 2024 at 20:15

Hi Phil, 


David’s regime isn’t too painful honest guv 😉 I’ve sent a msg to your inbox.

User
Posted 01 Feb 2024 at 13:22

Originally Posted by: Online Community Member


New Avatar is me and the missus on the paddle steamer last year. 



Fabulous photo Phil. It's nice to meet your wife. 


PS: I hope they're not concrete steps you're sitting on. My mum used to say to us as kids, "Sitting on cold floors causes piles." I wonder if I could get her to join the forum, and impart more of her medical expertise.

Edited by member 01 Feb 2024 at 14:33  | Reason: Additional text.

User
Posted 01 Feb 2024 at 13:41

Sent it just now. Leila 

User
Posted 01 Feb 2024 at 14:57

My mum used to say to us as kids, "Sitting on cold floors causes piles."



My mum used to say “ don’t lay in bed once you’re awake or you’ll get bad thoughts” .  I can’t imagine what she meant 🤦‍♀️🤣


Phil

User
Posted 13 Feb 2024 at 11:15

Originally Posted by: Online Community Member
Must admit I’ve not had a good last few months mentally and I’m trying to perk myself up a bit. Took me a long while with my counsellors to realise that the hard work has to come from within me , not from some magic bullet. 
Hoping better weather might help … 


Phil, it's bad enough feeling down, and its twice as bad, when you're feeling knackered.


I admire your resilience and hopefully the longer days and a bit of sunshine will help you feel brighter.


Adrian.

Edited by member 13 Feb 2024 at 13:17  | Reason: Typos again!

User
Posted 15 Feb 2024 at 13:08

Originally Posted by: Online Community Member
 I started the changeover from Citalopram back to Mirtazapine 2 nights ago. The difference is amazing. Just on 10mg Cit’ and 15mg Mirtazapine and went out like a light… 🙂 My first solid nights sleep for 2 months… 


Blood test next week then see Consultant again week after so obviously gonna be a bit anxious about that. 😬… 


Excellent news Phil. I'm sure if you manage to string together a few nights of good kip, it'll lift your spirit. enormously.


Best of luck with your next consultation.

User
Posted 15 Feb 2024 at 16:11

Thanks Adrian. I do feel better already 😁. 
In our position we have to do whatever we can to reduce anxiety. 
I just today had the conversation with my Mother-in-Law about the seriousness of my condition and the probable prognosis. She didn’t understand that my wife needs/will need her support. We both shed a few tears, but she understands more now. She kept saying she understood , but my Father-in-law was 94 when he died of Heart failure while suffering from PCa . I explained to her that her daughter is only 60 and living with the prospect of me dying fairly soon. It tears me apart to think of leaving her. 😥
My Brother-in-law also has PCa and is still on HT but hoping for curative. Fingers crossed 🤞 for him. 
So , chin up, get on with living. 
Out for a few beers with couple of mates tonight. Probably have one too many 🤦‍♀️🤣… 


Cheers


Phil

Edited by member 15 Feb 2024 at 16:13  | Reason: Not specified

User
Posted 15 Feb 2024 at 16:14

Originally Posted by: Online Community Member
Probably have one too many 🤦‍♀️🤣…


Good lad. Why the hell not


 

User
Posted 16 Feb 2024 at 13:08

Well chaps, my evening out didn’t exactly go to plan. We went to a micro brewery and last time both my mates were ill afterwards. But we went back anyway. 
After about 1 1/2 pints, 1 1/2 hours,  I started to get stomach cramps which were crippling and i told my mates I didn’t feel too good and could they phone my wife to get me. I then promptly passed out on the table. They ended up calling an ambulance which arrived same time as my wife . My wife decided to take me home and the ambulance guys were fine. 
I couldn’t walk and needed help to the car, got home and had a shower as I’d pooped myself 🤦‍♀️… Never ever done that before, so embarrassing!
I told my mates I didn’t want to die passed out on a table in a Pub…! 
Had a good nights sleep and feel ok today albeit a bit tired. 
Dont think it’s cancer related unless it the new Dexamethasone or the change in anti depressants… ? 
Was either fish I had for tea or the Dark beer I had (Black Bess) 🤷‍♂️
Was so looking forward to a night out with my mates. 
Maybe next time we’ll do lunch with coffee 🤣


Hope you’re all good


Phil

User
Posted 16 Feb 2024 at 13:26

Originally Posted by: Online Community Member
I told my mates I didn’t want to die passed out on a table in a Pub…!


I can think of much worse ways to go. In fact going like that, or during a bit of rumpy-pumpy, are top of my list.


I'm so disappointed for you Phil, I know how much you were looking forward to the night out. Bad luck mate.


I remember years ago, collapsing at our kitchen table. Out like a light, but it was down to too many bevvies. Embarrassingly it was the first time, I'd ever met the step-mother-in-law. Took months to live that one down.

Edited by member 16 Feb 2024 at 13:59  | Reason: Typo

User
Posted 16 Feb 2024 at 13:38

Adrian, I remember years ago, collapsing at our kitchen table. Out like a light, but it was down to too many bevvies. Embarrassingly it was the first time, I'd ever met the step-monster-in -law. Took months to live that one down.


That must’ve been soo embarrassing 🤣🤣 


I worked in Pubs from age 8 to 17 so never really got drunk as I’d seen it all. But I went on holiday with my mates once to Spain when we was youngsters. I got off with our Spanish dinner waitress and we’d all been out and got back to the hotel and I went and got a round of drinks on a tray. I was showing off but very smashed and I ended up letting the tray go about a foot above the table. So many hands came out to try to save their drinks 🤣🤣. Still makes me laugh now. Bacardi and coke - still can’t drink it now. 


Phil

User
Posted 16 Feb 2024 at 13:51

Originally Posted by: Online Community Member
That must’ve been soo embarrassing 🤣🤣


Indeed it was Phil. I can remember, the next day, being on the phone  to her for almost an hour. Profusely apologising, and trying to give umpteen excuses for my deplorable behaviour.

User
Posted 16 Feb 2024 at 13:59

Adrian, I can remember, the next day, being on the phone  to her for almost an hour. 


🤦‍♀️… I can imagine … ! 

My MiL is magic. Met her daughter when she was 15 and I was 24 but she never made me feel unwelcome. And we’re still married 45 years later. MiL is still around too 👍

User
Posted 16 Feb 2024 at 14:55


So's mine. She can fly on a broomstick. 😆 Only kidding.


Originally Posted by: Online Community Member
Met her daughter when she was 15 and I was 24 but she never made me feel unwelcome. And we’re still married 45 years later. MiL is still around too 👍


That's lovely Phil. Second time around for me, but we've been together almost 25 years. We've got a similar age gap. I suspect that, being quite a bit older than my wife, makes dealing with this disease a little more difficult. 

User
Posted 17 Feb 2024 at 18:15

Adrian,


Adrian,  I suspect that, being quite a bit older than my wife, makes dealing with this disease a little more difficult. 


Yes it’s definitely on my mind. Probably partly jealousy as she could have another 30 years with someone… I find that hard but want her to be happy .

User
Posted 17 Feb 2024 at 22:04

Originally Posted by: Online Community Member


Hi Phil, 


This bl%#dy disease will definitely get more than a run for its money. We ain’t giving it a chance. What a wonderful story you met the love of your life at 15, how special is that. We met in 2003 sadly a bit later in life but I know I’ve met the right one. He’s a keeper, we are delightfully happy. We’d both been married before, and this was unexpected for me, as I wasn’t looking to meet anyone, I was happy alone.
Dave’s PSA was < 0.1  we are delighted. The mixture if prostrap & the London clinic seem to be the right recipe for him. He’s careful with diet and stuff, but he feels good and we seem to be toddling along quite well. 



take care Phil, 


 


Leila. 


 


 


Show Most Thanked Posts
User
Posted 10 May 2022 at 10:14
Hi Phil. Sorry to hear you’re going through it again. I think with multiple lymph involvement ( I have 4 that I know of in various positions between stomach lungs and shoulder ) it is pointless trying to zap or remove them. From my little knowledge your lymphatic system is like a super-highway in the body , and once it’s in there it just won’t go away whatever they do. Hence just starve them with the HT !
I feel for you as I’m just behind you and dreading the PSA eventually turning even though I know it will sooner or later. Keeping strong and positive is very difficult at times but my wishes and strength go to you
User
Posted 10 May 2022 at 12:47
It could well be because you've already had your "lifetime dose" of pelvic RT and they can't give you any more. It would certainly be worth asking why.

Best wishes,

Chris


User
Posted 10 May 2022 at 12:49

Thanks for the reply guys, appreciate it.


I certainly have a lot more questions than I’ve ever had for my consultant…


I will look up the Lu-177.


cheers


Phil

User
Posted 10 May 2022 at 20:29

Good Luck Phil


Did my suggestion to ask about Lu-177 get removed?


I thought I’d suggested you ask about it?


Fingers crossed they have a plan. Maybe a clinical trial could be considered too


 

User
Posted 10 May 2022 at 20:36

Pro-merit clinical trial is recruiting across the UK


https://clinicaltrials.gov/ct2/show/NCT04382898#contactlocation


It may be worth asking


 

User
Posted 10 May 2022 at 23:06

Hi Claret , it does appear that your post was removed 🤷🏼‍♂️. No idea why …. ?


But I remember what you said and I’ll investigate the Lu-177 and the link you sent , thank you .


Phil


 

User
Posted 10 May 2022 at 23:44

Hi Phil, I am so sorry to hear of the situation you find yourself in.  It must be really hard for you and I am thinking of you. I hope your Consultant is able to offer more RT/further alternative treatments going forward.


Ange x

User
Posted 11 May 2022 at 11:07

Hi Phil,


I’m sorry to read you are having such a hard time, seems you are really having a rough time.You have had more than your share to deal with. David has been offered Apalutamide, is that, or enzalutamide a possible option for you? 
He has also changed his diet and we’ve read quite a few books on diet and cancer. 
How to Starve Cancer by Jane Mc Lelland is the regime David’s following, his last PSA was 0.3 a reduction from the previous 3.9 


He is also doing the Care Oncology Clinic protocol, it’s not NHS though. 


This dammed disease really tests us, you G9 lads are so special and brave, of course David is my special lad, but each one of you is in my thoughts.


I’m aware David will at some time have a more difficult time, and I’m so thankful he’s doing well, every day is such a blessing. 


Take care Phil, 


Leila x


 

User
Posted 11 May 2022 at 17:52

Hi,  Replying to your request for information.  I read a few places but there's a YouTube channel called The Prostate Cancer Research Institute which has a lot of interesting, basic and short videos.  It's American.  They don't like names on here, Dr S....z is the one I prefer to view, he's a prostate focussed oncologist.  Here's a link  https://youtube.com/c/ThePCRI


 

User
Posted 12 May 2022 at 12:16

Thank you Peter, I will have a look 👍.


Leila, I’ve just ordered the book ‘ healthy eating. The Prostate care cookbook’ and I’ll take a look at the book you mention. So pleased to hear David’s PSA has gone down. The diet can only help.


Ange, thank you for your kind words. I am going to have so many questions for my consultant this time. I’m not going to sit back and let it take me…


Off out to garage now to work on my old motorbike for a bit then fitting some skirting board to new summerhouse. Got to keep busy , you don’t realise when your young how much you have to savour each and every day. Went out last night to see ‘Anything for love’ the Meatloaf show - really good and brought back memories of us seeing him live in a theatre in Ipswich back in the early ‘80s….. bloody hell how time flies…….


Take care everybody, and in the words of the old Prince Buster song ‘Enjoy yourself, it’s later than you think’


Phil

User
Posted 13 May 2022 at 12:26

I know stage 1 clinical trials are never ideal but things are progressing quickly and this Sexily named! CB307 does sound interesting:


https://findastudy.uclh.nhs.uk/#/trial/61aa4c4f28192a29cf4f4186

User
Posted 08 Jun 2022 at 11:00

Hi guys and gals. 
I just tried to post this link to ‘Treatment’ but I don’t have permission…


Its regarding a piece on a drug for rectal cancer. Seems quite interesting. Obviously a long way off yet but good and encouraging to see so much is being done still. May help those yet to succumb to PCa.


https://www.sciencealert.com/every-single-patient-in-this-small-experimental-drug-trial-saw-their-cancer-disappear/amp

User
Posted 16 Jun 2022 at 12:22

Afternoon all, just had my telephone consultation which was with my ‘actual’ consultant, so I knew immediately it wasn’t good news.
it appears my PSA has gone up to 2.1 now. He said that’s not too bad… easy for him to say as it doesn’t feel like that to me.


He is starting me on Bicalutimide 50mg now in addition to the Zoladex. 
If he thought my cancer was hormone resistant wouldn’t he have started adding Enza or Abi?


He said he has seen this before but wouldn’t commit to saying it’s hormone resistant now.


Bit disappointed as I was obviously hoping the PSA rise was a blip. Trying not to feel too down , plenty of time left yet 👍


Anyone know what long term effects are from taking Bicalutimide?


take care everyone,


Phil


 

User
Posted 16 Jun 2022 at 20:18
Bicalutimide is a good next step - particularly as the onco isn't convinced that you are hormone independent. The bicalutimide will help the Zoladex to be more effective and, if it doesn't work, withdrawal from the bicalutimide may stop the cancer in its tracks for a while, delaying the point at which you have to introduce enza, abi, apalutimide or chemo.

If they had evidence that you are hormone independent, they would have gone straight to plan B.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Jun 2022 at 11:53

So sorry to hear about the increase in your PSA level Phil.  Fingers crossed the Bicalutimide will be effective without giving you side effects to cope with, as well as those from the HT.  You’ve kept strong Phil and I’m sure you’ll continue to do so.


Good to hear you’re continuing working on your old motorbike and your new summerhouse, as you say you have to make the best of every precious day.


I know what you mean about time flying by, we were talking with friends about Jimi Hendrix and I remembered going to see him live on stage in the 60’s (great experience).  So many lovely memories over the years and hopefully we all have many more years making memories with our families and friends…


Best wishes to all on the forum, stay strong and take care of yourselves.


Ange xx

User
Posted 17 Jun 2022 at 14:31

Hi Ange & Lyn.


I touched base with my specialist nurse and she said what you’ve said that my consultant isn’t convinced it’s castrate resistant and feels the Bicalutimide will boost the Zoladex.  So I’m feeling a bit better now - first pill today . 
Take care everyone.


Oh and the bike is nearly finished , I’ll put a picture on here somehow ? when it’s done even if it’s on my profile. 


Phil 

User
Posted 17 Jun 2022 at 22:20

What a difference another day can make. So glad you feel better about moving forward. Look forward to seeing a picture of your bike soon!! Ange x

User
Posted 12 Jul 2022 at 12:04

Tried to post a photo of my almost finished bike but the site doesn’t like it so I’ll just change my profile picture ….


1973 Kawasaki 350 Triple.


Not a good photo I’m afraid. The bike was a pile of rust not used since 1979 completely rebuilt down to the last nut and bolt.


It’s kept me busy for 6 months and my mind off other stuff. 


Phil

Edited by member 12 Jul 2022 at 12:12  | Reason: Couldn’t post a photo

User
Posted 12 Jul 2022 at 13:18

Wow, looks like you’ve made a fantastic job of your motorbike Phil.  Keith is really envious!!  He had motorbikes in his teens/twenties and would love to relive the thrill again.


Its so good to have an interesting project/hobby to keep you focused.  These have certainly helped to keep Keith going since he was diagnosed in September 2019.  Feeling nervous as it’s his second PSA test coming up since finishing HT.  I don’t think that worry will ever go!!


Hope you’re doing okay since your Consultant has added the Bicalutimide to boost the Zoladex.


Look after yourself and enjoy great family times.


Ange x

User
Posted 12 Jul 2022 at 18:31

Thank you Ange. Been hard work but worth it. Started with my first bike when I was 15 and had one on and off ever since. 
Good luck with Keiths next blood test , I’m sure it will be fine 👍. It’s pretty rare for the cancer to come back so quickly after stopping treatment, so the odds are in your favour.


Ive been getting lots of hot flushes after adding the Bicalutimide which I never got with just the Prostap or Zoladex. Not so good in this weather 🤣.


Off to Jersey in a couple of days to see our son and his wife . Looking forward to it so much. Savour every day 👍


Take care


Phil

User
Posted 12 Jul 2022 at 21:23

Great positivity Phil.  Have a wonderful time in Jersey with your family and, as you say, savour each day x

User
Posted 12 Jul 2022 at 23:54

Hi Phil, 


The bike is marvellous, and it does provide time away from worrying about PCa. Keep going Young man. David is is doing the Care Oncology Protocol might be worth a look. Keep going, lots of bikes need attention. 
Leila x

User
Posted 06 Oct 2022 at 13:36

Ok so, update from latest consultation…


My PSA is steady at 2.1 , exactly what it was 4 months ago. Wasn’t expecting that, I thought it would go up or down.. 
Consultant says that is OK and we’ll test again in 3 months. 
Anyone out there had a steady reading as high as that whilst on HT and Bicalutimide? 


Other than that I’m doing ok . No issues with water works or bowels. Just maybe get a bit tired / lethargic occasionally. 


I’ve had my 4th Covid jab now plus a flu one. I didnt realise before that Lymph node involvement meant my immune system wasn’t 100% .


Hope everyone else is doing OK ? Just got back from 3 weeks in Canada which was amazing , but tiring with lots of travel. 


Phil

User
Posted 07 Oct 2022 at 10:23

Hi Phil,


It’s good to read your update and hear that your PSA is staying steady.  Keeping everything crossed that it stays that way, or even lower, for a very long time.  You’re certainly not letting the grass grow beneath your feet, a three week trip to Canada must have been amazing!!  I imagine a trip to Jersey to see your family again will be next on the agenda.  


Ange x


 

User
Posted 07 Oct 2022 at 14:51
Hi Phil good news I guess , and great to hear you’re coping better than you expected. Glad that holiday worked out. Looked stunning. Keep up the fight brother 👌
User
Posted 07 Oct 2022 at 15:29

So pleased you had a good trip to Canada, a place I’d love to go. A stable PSA, pleased for you, another three months of decent autumn life before the next test.


I hope you are managing to stay positive young man. 


David’s PSA is currently <0.1 and he’s doing well. Though the mood swings are a bit of a pain sometimes. I try to remember it’s not his fault, though sometimes I am less patient. 😉 


I’m still working in  on perfect wife role, never managed it so far. I’ve got a lot of work to do in that area.  I’m still working in his dietary needs, and he’s found a sugar free carb free Italian beer, that tastes ok, so he delighted. 
Our lives are good, and we are thankfully quite positive.


Take care.


 


Leila x


 


 


 


 


 

User
Posted 07 Oct 2022 at 19:25

Hello guys and gals, thank you for the lovely messages 👍. I did feel a bit jittery after my consultant phone call but I’ve calmed down now and trying to be happy with a steady PSA !


Holiday was magic , such wonderful scenery in the Rockies and seeing grizzlies and black bears and whales breaching nearby we will never forget. We even had a bear walk out in front of the car. You can imagine me shouting ‘ bear, stop, camera’ …


We were also privileged to go to see an abandoned indigenous village where our guides family lived. People rarely go there but we had time so he took us. 

Hoping next year will be a Mississippi cruise…. Watch this space. 


Really can’t let this bugger of a disease beat us. Sometimes it’s hard, and Leila, I also get quite depressed sometimes and it’s difficult to pull out of. I have a lot of crap from my childhood and it forces it’s way into my consciousness sometimes and I have to find myself something to do to keep busy or it can engulf you. I’m sure you are doing a damn good job as a supportive wife as It ain’t easy looking after us moany old guys …. We forget sometimes you are on the same journey. My long suffering wife sometimes has to remind me she’s in this with me too… I love her so much . She was 15 when we met and I knew then she was the one I wanted to be with for the rest of my life. God knows what she saw in me 🤣


Eldest boy and his missus are flying to us in October so probably not out there till New Year now. Just got to get the spare room decorated … 


Anyway thanks again to you guys, it feels good to share 👍 and I love to hear your little stories of how you’re all managing. It feels like a little family… 


Take care, be good , love with all your heart and grasp every day.


Phil


 

User
Posted 22 Nov 2022 at 14:14

Hiya all, just a little addition to my situation. I asked my nurse for my testosterone reading as I always forget to ask. It is now 1.6 , from 8.8 in January. Was expecting it to be lower as I recall previously after my 2 years on Prostap it was 0.7 . 
Maybe the Zoladex and Bicalutimide are not working quite so well as the Prostap and that would explain my PSA not going so low this time round. 


Ta 


Phil


 

User
Posted 22 Nov 2022 at 19:47

Hi Phil, 


This bl%#dy disease will definitely get more than a run for its money. We ain’t giving it a chance. What a wonderful story you met the love of your life at 15, how special is that. We met in 2003 sadly a bit later in life but I know I’ve met the right one. He’s a keeper, we are delightfully happy. We’d both been married before, and this was unexpected for me, as I wasn’t looking to meet anyone, I was happy alone.
Dave’s PSA was < 0.1  we are delighted. The mixture if prostrap & the London clinic seem to be the right recipe for him. He’s careful with diet and stuff, but he feels good and we seem to be toddling along quite well. 



take care Phil, 


 


Leila. 


 


 

User
Posted 22 Nov 2022 at 20:34

Haha love that ‘he’s a keeper ‘ , glad to hear it though . So pleased Dave’s PSA is down at 0.1 , brilliant. Fingers crossed it stays there and you get many more years together.
Actually I wasn’t 15, she was . I was just turned 24 and she was nearly 16….. but I had that OMG feeling and had to go speak to her. We had a few people say it wouldn’t work but here we are at our 40th wedding anniversary on Sunday. 
I was just back from working abroad and had a brand new Capri , a boat, a motorbike, and a deposit for a house. A few months later we bought our first house together although she didn’t move in till we married when she was 19.  
Hoping we have many more anniversary’s yet.


Hope no one minds this little story on the forum.


take care 


Phil

Edited by member 22 Nov 2022 at 20:36  | Reason: Not specified

User
Posted 23 Nov 2022 at 00:48
That's lovely - I was 16 when I met John and we married as soon as I was 18. He had a Vauxhall Viva - it is our ruby wedding next May.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Nov 2022 at 11:03
Haha my first wife was 16 when I met her (I was 19) 34 years later she p****d off and left me with cancer and debt.

Best thing she ever did for me!!!
User
Posted 23 Nov 2022 at 11:59

Originally Posted by: Online Community Member
Haha my first wife was 16 when I met her (I was 19) 34 years later she p****d off and left me with cancer and debt.

Best thing she ever did for me!!!


Sorry this worked out badly in your case, relationships are a lottery and sometimes people grow apart or become strongly attracted to somebody else.  I seem to remember you saying that in your case it was your PCa that precipitated your partner leaving which is hard and the opposite of the great support the most of us men receive from partners. 

Barry
User
Posted 30 Nov 2022 at 20:49

We met at 14 messed about for a while as mates stared going out when 15 …oops pregnant at 16 our first born when 17. Parents would not accept us and refused wedding so married at 18 …….. that was 43 years ago.


recently diagnosed and waiting for biopsy and scan results due Friday my wife is positive and supportive however as I read this forum  there is lots and lots of talk about sex and how it could effect the relationship .


don’t misunderstand me as a man it is a big deal for me and I am horrified by the lack of erections the possibility of a reduction in size etc. But my wife has not had a lot of fun with her menopause and the huge effect it has had on her libido and to be blunt vaginal dryness and what she describes as a shrinking space….


however she understands that it, sex, has been great and understands it is important to me and her but she gets little from it now. Her words my clit does not work any more 😢


I guess my point is that the forum does not seem to grasp the partnership and how they will deal with it….maybe your darling will be relieved 😱


we are both 61 and I really really want her and I am not ready to give up on that but I want to stay alive  and it is a real dilemma that sex leads you to a bad life decision


thoughts?


 

User
Posted 30 Nov 2022 at 21:56

Originally Posted by: Online Community Member
I guess my point is that the forum does not seem to grasp the partnership and how they will deal with it….maybe your darling will be relieved 😱


Good point. Something that doesn't get a mention here is that ADT, in eliminating testosterone, has almost exactly the same effects for men as menopause does for women. For both sexes effects vary from one person to another with some people getting more extreme versions. Common to both are emotional changes, brain fog, impaired memory, hot flushes, depression, loss of physical strength and of course loss of libido but basically menopause for women = HT for men.


For many men here who are suffering the possibly temporary effects of chemical castration it's important to acknowledge that at the same time (maybe earlier or later) their wives/female partners have already gone through the experience of pretty much exactly the same hormonal changes as they are experiencing with the difference being that the change for women is permanent.


I don't know if there's some sort of poetic justice in this but for those of us who might be thinking that HT is the end of the earth it's worth remembering that every woman who's been through menopause has had the same experience and managed to survive ok.


I found it slightly easier to deal with HT the longer I was on it. I understand that reaching some state of ease is also present with menopause, though women can take advantage of HRT for a period. HRT for menopause is usually not prolonged, with most women stopping because they don't feel the need to continue.


Jules


 

Edited by member 01 Dec 2022 at 01:31  | Reason: Not specified

User
Posted 01 Dec 2022 at 07:53
Menopause in women is not the same as HRT in men. Do not let them kid you it is!!

HRT stops the production of tostesterone more or less completely.

Menopause in women reduces the production of progesterone and oestrogen over time (but does not stop it). Tostesterone production in women is unaffected by the menopause, it does reduce as they get older (like men) but it is unaffected by menopause.

https://www.menopause.org/for-women/sexual-health-menopause-online/changes-at-midlife/changes-in-hormone-levels
User
Posted 06 Dec 2022 at 11:59

Really interesting reading your posts guys.


I just wrote a really long reply about my childhood and sex and love but I then deleted it - sorry! Bit too graphic and not in the mood to share at this moment, maybe you can guess. 


But, I know my own feelings about sex are not simple but entwined with all sorts of other emotions. I know I miss it terribly but how would I be had I not had cancer or HT as I’m now getting on a bit at 67 🤷🏼‍♂️ …?


I suffered and probably still do, from repressed emotions due to my childhood (from my counsellor) and it means I really struggle to understand how I feel about stuff. I’m sure I’m not alone in that. 


I wish I had the strength of some of you , especially the ladies looking after us blokes.. Hats off to you. 
I sometimes feel that I am just about hanging on to sanity and the tears flow. 
Take a deep breathe and think of the good things.
Wifey tells me she doesn’t think I’d be here now if they hadn’t discovered the PCa sooo grateful for that 👍.


Completely forgotten the reason I started to reply 🤦‍♀️…. Got carried away…. Oh dear … 


Take care, good luck 


Phil

User
Posted 06 Dec 2022 at 19:59
I think a lot of us feel we are just hanging onto the edge of sanity - even without PCa, it has been nearly 3 years of trauma and uncertainty and fear. If we are all on the same window ledge, we just need to have someone holding on.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Dec 2022 at 15:56

Hi Phil, I would think it was helpful for you to write about your childhood experiences, etc., even if you deleted what you had written.  Life can be so cruel in so many ways for so many people.  I always say to myself when I have a bad day forget today and start again as ‘tomorrow is another day’ and I can usually see things in a different light.  You do have strength Phil, just look at how you have coped with what life has thrown at you.


I hope today has been a better day for you.  The camaraderie on this forum is amazing - just knowing we are all there for each other.


Take care,


Ange x

User
Posted 07 Dec 2022 at 16:40

Thank you Lyn and Ange. 
Sometimes you get low and forget there’s other people way worse off than yourself. Count your blessings - an old saying but very true. 
Better day today , been playing badminton and it’s good to feel the blood coursing through your veins. Makes you feel alive. 
Thanks again for understanding 👍


Take care


Phil

User
Posted 26 Jan 2023 at 15:02

So… latest PSA today and unfortunately it’s gone up to 3.17 . Consultant says let’s wait to see what the next one does before any action. If it goes up next time then we look at different meds presumably Abi or Enza. 
Feeling pretty sh*t at the moment. You think you’ll be prepared but you’re not really. 


Take care people , 


Phil

User
Posted 31 Jan 2023 at 11:40

So, been thinking, which is probably not such a good idea but here goes. i have 2 possibilities with a rising PSA . I haven’t added the possibility of a blip because I really don’t think its that. 


1 - Zoladex and Bicalutimide not working to reduce my Testosterone enough.


2 - Cancer has become resistant


So, if it’s option 1,  can they increase my Bicalutimide to 100mg or even 150mg , or put me on Decapeptyl instead ?


If it’s option 2 , what are my options Aberitone or Enzalutamude ??


Whats the likelihood of Chemo treatment to reduce the tumours for a little while. 


Take care


Phil

User
Posted 31 Jan 2023 at 12:38
I think matron will give you the best answer. Probably next step is to try Abi or Enza. Abi technically not authorised in England yet , but my Onco said I may get it as less side effects and he knows I’m keen on QOL.
Don’t think changing to Deca would help as they all pretty much do the same job. Sometimes Chemo is offered upfront with either drug or can be saved for later.
Keep strong brother 💪
User
Posted 31 Jan 2023 at 12:44

Cheers Chris. Didn’t know Abi wasn’t authorised yet. Fingers crossed I won’t need it yet but not holding my hopes up. 
This has really hit me and just started back at the gym and I find myself thinking why am I bothering …. But then I give myself a good talking to as it’s not just about me. 


Phil

User
Posted 31 Jan 2023 at 16:58

Originally Posted by: Online Community Member


So, been thinking, which is probably not such a good idea but here goes. i have 2 possibilities with a rising PSA . I haven’t added the possibility of a blip because I really don’t think its that. 


1 - Zoladex and Bicalutimide not working to reduce my Testosterone enough.


2 - Cancer has become resistant


So, if it’s option 1,  can they increase my Bicalutimide to 100mg or even 150mg , or put me on Decapeptyl instead ?


If it’s option 2 , what are my options Aberitone or Enzalutamude ??


Whats the likelihood of Chemo treatment to reduce the tumours for a little while. 


Take care


Phil



 


Seems a good summary of where you are. The way to determine whether you are in situation 1 or 2 is to have a testosterone test; it is a bit disappointing that your onco hasn't suggested that. If your testosterone is below 0.7, the HT is working but the cancer has become hormone independent (or castrate resistant) so time to add abi / enza / apa. Another possibility is that the cancer has learnt how to turn the bicalutimide into food. If your testosterone is above 0.7, the HT isn't working effectively enough - there is still some testosterone floating around for your cancer to feed off.


Withdrawing bicalutimide might get you a bit of breathing space - this is known as anti-androgen withdrawal response (AAWR) as the bical is removed and the cancer thinks it is being starved again. Some men can have an AAWR that lasts for months; others don't get an AAWR at all. 


 


If you have become hormone independent, the next step would probably be to add one of the third generation drugs. Apalutimide is also now approved alongside abi and enza and, in theory, is even more effective although I think it has turned out to be more expensive than anticipated so we are not seeing many men get it. 


I think abiraterone is approved in England for men who are hormone independent so it should certainly be on the table unless you have other medical conditions that would preclude it. The confusion may be with apalutimide which is approved for men who are hormone responsive but only available as a trial for men who are hormone independent? 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Jan 2023 at 17:09

Hi Lyn. Thanks for the information 👍



My T was 1.6 in November and I asked this time as it was on my blood form but the consultant I spoke to said he couldn’t see it. Maybe I’ll ask my specialist nurse if she can see it on the results. 


Thanks again


Phil

User
Posted 09 Mar 2023 at 17:53

Just seen I left my last post without saying what happened when I spoke to my nurse.


She said my blood test form definitely didn’t have T on it so I have to wait now until my next test . They have added it on along with lots of other stuff. 

Still struggling a bit mentally but my nurse requested some more counselling and I have just had 12 sessions authorised. Unfortunately my counsellor has left so gotta start with someone fresh. Not looking forward to that.


Hope everyone’s ok out there in the big bad world?


Phil

User
Posted 09 Mar 2023 at 22:14
I’ve never once had a T result since start of HT and would rather not know unless something was bad. I know it would be lower if I’d accepted early Enza , but I’ve maintained a QOL way beyond my dreams. Just doing my own thing as ever much to my Onco’s annoyance.
My councelling has run out also at every avenue and it’s just too hard to start with someone new with a long previous history. Good luck though friend 👍
User
Posted 09 Mar 2023 at 23:04

Ahhh, sorry to read about having to start off with a different counsellor, that’s hard for you. I suppose at least you have been offered it Phil, I hope it helps you. Keep going.


Leila

 
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