Why can’t they treat my Lymph node PCa

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

Well here we are again, sitting in me lounger at the Spa - oops in mean chemo department… Just had my first cup of tea and a kitkat 😁

I’ve also got ice poles in a thermos to suck on to hopefully help with the metal mouth. Fingers crossed it helps as we’ve got some meals out booked 🥴. Fatigue and ankle swelling no worse, which is good. Getting a little bit of tingling in my left foot which is obviously not so good but so far I only really notice it at night. So I put Savlon on which seems to help a bit. Hoping it doesn’t get worse. I’ll mention it to Consultant next Tuesday when I see him F2F. Hair not really growing much but stopped falling out now. Haircut tonight - she hasn’t got much to do 😬… When I see consultant I will ask about my white and red platelets. I’d like some guidance on when I can fly again as we’d like to plan something for early next year. We’ve got 2 BA companion vouchers but one runs out 6th May…. 
One other thing is I’ve just had a few days of not dropping off to sleep very quickly. Normally the Mirtazapine kicks in perfectly. Unfortunately when I don’t go off I often start ruminating about my childhood stuff which is not so good. Was hoping my counselling would help me to stop thinking too much about it but even though she got me more sessions we run out in the end. So gonna start taking my Mirtazapine a bit earlier and see if that helps. 

Booked up a long weekend on a Norfolk Broads cruiser in October so hoping I’ll be ok for that. Let the others do the hard work and I’ll play on my fatigue a bit 🤣🤣 while I sit and eat nibbles and watch the world go by. 

Been keeping busy at home. Had downstairs ceilings flattened Monday and  yesterday while I carried on painting the walls where I could get to . Got a week or so now before ceilings can be painted. Got plenty of other little jobs to do. 

So, still presuming I will be ok for the full 10 sessions. They just asked if it was my last one. I told them I see my consultant Tuesday so I’ll know for sure then. 

Keep going guys, 

Phil

Edited by member 04 Sep 2024 at 13:50  | Reason: Spelling, grammar and additions

Just a quick update: Catheter removed this morning . Everything working ok 👍 Fingers crossed it stays that way. 

Started eating a bit more as the chemo mouth wears off. Still no where near normal but better. Had a very little piece of Shepherds pie last night..

Had a call from palliative nurse today to see how I am. She’s coming to take blood on Thursday. That should show if the potassium, anaemia and CRP are at better levels. 

It’s just annoying that I’ll have to do the chemo at some time again. Also still waiting for bone scan. Then in 3 weeks see my consultant again to see if everything is ok with CT scan and bone scan. 

It’s just so good to feel a bit better. And to sleep tonight without a wee bag… 

Take care everyone 

Phil

Thank you everyone for your kind words and support. Much appreciated. 

I just been looking up PCa in bone marrow. Wish I hadn’t 🤦🏼😬… Not a brilliant prognosis. I can see why they want to target it now. Nice of them to give me Christmas off treatment just hoping it’s not my last… 🥴 Only joking of course got too much to do yet 🙂

Take care of yourselves my friends. 

Phil

Pro-merit clinical trial is recruiting across the UK

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

It may be worth asking

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

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?

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

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

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

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.

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

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 . 

I’ll be back on tomorrow. Not good news at the hospital today. 

Phil

So sorry to hear this Phil.  I’m glad you were able to go to your grandson’s Christening in Jersey with your family and friends prior to your appointment and not after.  Thinking of you. Ange x

Ok so, latest update… Not so good .! PSA up to 10 and T still at 1.2. I think she said something about the PCa possibly Hormone Naive now and some more bone mets showing up. So we are moving onto the Chemo Docetaxel.
Got to stop my Abiraterone straight away but stay on the Dexamethasone and Degarelix injection. They will change the Dexa to Prednisone before the Chemo which is due to start in 3 weeks. 
I am presuming then it will be a 21 day cycle. Hoping I can tolerate it as well as Phil is doing. Might have to pick his brains a bit. Also like to know about the cold cap … 

So not what we wanted to hear , especially about the little bugger being T resistant now. That probably means the Orchidectomy is pointless. 

Had to tell our boys and i can tell they’re both upset. So hard for them , and of course my missus. I don’t know how she keeps it together 🥰. 

Anyway, onwards and upwards. Still loads to do and see… not stopping yet 😎

Take care of yourselves guys. 

Phil

Hi 

Sorry to hear about the US,make up for it with some good hols in blighty,I've brought a static in Devon with wonderful see views and going down as much as we possibly can,finish my 10 chemo sessions on 17th July then I'm on the hunt for insurance for Vegas/new York in September and winter hols in the canaries....let's live life ah lol..

Don't worry about your PSA it will begin to fall,your looking for a slow and gradual fall over months my next blood test will be in a few weeks I'll log it on my tread when I get it.

Take care regards Phil 

Leila, I think I’m booked up for at least the next year 🤷‍♂️, especially at the speed I go at 🤣. Try to pace myself or I knock myself out .. It’s difficult as once i start I don’t like to stop… Been sanding this morning so sat watching Para Olympics now for a bit before I crack on again. 

Kev, I’ll need me captains hat won’t I so I can give the orders 😁. Against my advice we got a longer boat which will be harder to manoeuvre in tight spaces but the others wanted more room inside. We’d have still got separate en suites with the smaller boat but I was outnumbered and we went up from 35’ to 44’ and no bow thrusters to help steer… 

First day after chemo and mouth seems ok so far, fingers crossed. No tiredness as yet but we’ll see how it goes coming week. Nervous wait for my blood test result next Tuesday… 😬. Seeing my consultant face to face so got some questions for him. 

Take care guys, best of luck to all of you 👍

Phil

Best wishes,

Chris

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

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

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

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

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

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. 

Best thing she ever did for me!!!

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

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

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

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 👍

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

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 

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

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

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

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 

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

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

Leila 

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

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.

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

A reduction in PSA!!! 

Absolutely brill.

Congratulations good news long May it continue 

ann

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.

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

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

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

How wonderful, congratulations!

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 

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

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

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 

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

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

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

Adrian.

Hi Phil, 

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

Leila 

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

Ange x

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…

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

Hi Phil, 

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

Sent it just now. Leila 

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!

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

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

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

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 👍

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 .

Hi guys. Next consultation is only hours away now so been a bit fretful. It’s a 4pm appointment so will likely be late as well . 
Hoping for the miracle of a steadied or reduced PSA but not really expecting it. 
Not sure what we’ll do if it’s gone up again. Dont know how far it will have to go up before Docetaxel is brought into play. 
Just gotta wait now . Trying to keep busy and not think about it 😬… 

Take care chaps

Phil

Thinking about you and yours Phil from us both. 

Edited by member 28 Feb 2024 at 16:55  | Reason: Not specified

Sorry to hear this Phil, I will keep my fingers crossed for you that switching to degaralix does as Lyn says.

I would be very interested in a discussion about orchidectomy.

Don’t agree with Lyn about the Kit Kat though, they go VERY nicely with a triple shot Costa Flat White😋

All the best,

Derek

Also, in my experience, men are more likely to move on and have new partners and women less so. Obviously this is a generalisation but so much of second relationships is about companionship and intimacy (emotional not necessarily sexual) and I suspect that women are more likely to find companionship / intimacy with other female friends while men find it hard to be companionable or intimate with their mates so look for romantic / sexual relationships instead.

My mum & dad were marvellous together and I was devastated when he introduced me to his new partner less than 6 months after my mum died. Then, a few years later, she died suddenly and, within 6 months, he was telling me about his new new partner. It took a while for me to understand that it is no measure of how much he loved mum, he simply needs that closeness with someone. The super-strength Caverject helps, of course 😳

I suppose what I am saying is that a) this is a long way in the future for you and really not worth worrying about now; b) your lovely wife is not as likely to replace you as you might imagine and c) if she ever did, it would be testament to how much she loved you  

It is funny really as we wont even be here to worry. Just gotta hope we carry on for a few more years yet 😊

Before i do go I’ll make sure my boys are going to look after the wife and make sure she’s ok although only one of them lives here in the UK the other on lives in Jersey. My daughter in law in the UK is magic and i know she’ll always be there for my wife.

It is an odd feeling as i will probably go before my Mother in law as she is only 18 years older than me  …. My dad was a B*stard to me all my life but he managed to get to 94 which i must admit to feeling is a bit unfair …. 🙄

Anyway just waiting till Thursday for my first Degarelix injections and hoping it will give my system a boost and get the Abi working for a living !

Also having just moved back to Mirtazapin i am feeling much brighter and sleeping better. I also seem to have much more energy although my Consultant changed the Steroid to Dexamethazone because of my sleeping/energy levels.

Take care everyone,

Phil

Edited by member 04 Mar 2024 at 11:51  | Reason: M

It’s great to hear you sound more positive Phil.  Keith and I are praying for you.  Keep moving forward, you’ve got this!!

Ange x

Thanks guys. 
My neighbour already beat you to it … she said she’ll bring hers over later . I looked at our now huge driveway and said there’s no room… 

I was gonna start my bike yesterday but battery was flat so that’s been on charge overnight so might pop it back and give it a go. It’s an old ‘73 bike so no electric start … so see how I do … ! 

Cheers

Phil

Decho, you lucky man 🤣..

My youngest is like that and when him and his now wife lived with us he always helped me with the cars. He has a Lotus Elise so it was always immaculate.

Ive only got the one bucket and I know I should buy the one with the grit trap in it 😁.

Remember back in the late ‘70s early 80s people used to over polish their cars and go through the paint. 

The first time I took my missus out to meet with my friends the Pub was having a 1600E meeting. She was 15 and very shy and still remembers that evening. 🥰 

Phil

I know you won’t think so Phil, but you’re amazing!! Keep the positivity going and enjoy everything you do.  Have a great time with your family at home and in Jersey.

Ange x

Happy birthday for tomorrow Phil. Looking forward to meeting up at the Airport. 

Thanks for the tips re eating out in Jersey, much appreciated. 

I agree with Decho, travelling also gives me something to focus on and look forward to. 

Good luck. 

Kev.

Edited by member 02 Apr 2024 at 14:12  | Reason: Added note

Phil, good luck for tomorrow.

Thanks Chris 

Best of luck mate.

I'll be thinking of you.

Didnt finish till nearly 6 after getting there at 1. So called in for a bottle of alcohol free wine and had an hour or so in the summerhouse in the sun. No takeaway but frozen packet curry instead as it was easy. Feeling ok at the moment, hope it stays that way. 
Got so many pills 😳… and yet more steroids … 🤦‍♀️

Phil

Ey up Phil,

I was going to PM you to see how you're first night had gone, but I knew you'd only bollock me for being too much of a mothering hen. 😉😁

I'm glad you got some decent kip.

Hi Phil.

Well still feeling ok just that slight lingering headache. Dont feel tired at all. Hoping I’m a lucky one with side effects… I know it’s only my first one though and the effects are cumulative.

Is your injection for blood platelets ? How’s your test results going , still showing a drop? 

We have a wedding to attend in August in Maine, USA and I will speak to my consultant in a couple weeks and ask if I can have an injection for the platelets so I can fly. Won’t cancel till he says no way. 

I’m looking forward to jumping and clicking my heels as I couldn’t do that before 🤣

Take care 

Phil

Great to hear from you Phil, keep fighting. 

Cheers, 

Kev.

Hey Phil, 

Great to hear from you and good that you're still fighting the motorbike 🏍

Need to get those speakers working so the neighbours can enjoy your choice of music 😁

As for suits.. I only have two, not sure if they still fit me, and a trip to lakeside is a bit daunting, my Mrs would probably buy more shoes there.

You're incredible mate, keep going strong and keep us updated. 

Cheers, 

Kev.

Keep cracking on Phil. You're doing great mate. 👍 

Enjoy the football. 

Edited by member 14 Jun 2024 at 16:23  | Reason: Typo and additional text

Hi chaps, just a mini update… still feeling the tiredness and having a little nap most days. It’s now 5 days since 2nd chemo and still feeling low in energy. Trying to push through it though. Been out this morning to get my hearing aid sorted , luckily only 10 mins away and it’s all done. Back home, chat with my neighbour who’s just getting over breast cancer. Coffee now then gonna cut the grass … 

This afternoon gotta wire wool my speaker cabinets so I can apply the Danish oil 😊…

Trying not to eat too much junk as I think my body thinks it’s tired due to lack of sugary foods. Gonna eat more fruit , especially bananas as they’re supposed to help. 

England game a bit worrying! 2nd half I felt was poor. Kane looked a bit lost… and I’m a Spurs supporter. 

Look after yourselves everyone 😎

Phil 

Keep going Phil.

I said, "KEEP GOING PHIL"

😁

So 3rd Chemo passed without any issues. Except they didn’t get my cold cap sorted and i gave up trying to get them to get it. 

I also asked them if i could stop my Dexamethasone tablet in the morning as it was prescribed by Oncology before the Chemo. Oncology told me to ask the Chemo and they said it’s ok to stop it. So I’ve been taking it for no reason since May. Hope fully i may lose some of the weight I’ve put on now as im sure its down to the that.

Also asked for a record of my recent PSA results. So just before i started chemo in May it was 13.47 which was quite a jump from 9.84 in April. 11th June it went up again to 18.66 then up again slightly on 2 July to 18.85. Can’t help worrying even though they told me this happens and not to worry.

You may recall we had a wedding to go to in the US in August , well as you can guess my Onco said not advised and so we had to cancel flights and hotel. I logged into BA and cancelled the flights and got back all but a small cancellation fee plus 150,000 Avios and a companion voucher. Not sure if it was because we are executive club members or not but it was very easy to do so that was good. We lost one nights charge for a hotel for cancelling and couldn’t claim it back on insurance as it was under my PCa excess.

But we still got another wedding in September down in Ilfracombe so gonna make that a whole week down there. And we also need a week oop North to visit the wife’s brother. 

Been outside this morning sorting out a lock on the side gate. Need to ransack my shed now to find a flat plate to screw on for the bolt….. or I’ll have to flatten one out from something and paint it. No peace for the wicked…!

Hope you guys are all doing ok ? Shorts on today as weather nice although gonna rain all day tomorrow.

Take care 

Phil

Hi Goalhanger,

Sorry to hear about the Covid.  Hope that you're both feeling better soon.

Best wishes,

JedSee.

That's great news Phil,that's what I like to read.

Phil 

I thought you were having sea food later? 

Joking apart, excellent news mate. I'm so pleased for you and your family. 

Hiya guys. Woke up this morning and my mouth is a teeny bit better. Wifey bought me some stuff to wipe round your teeth for dry mouths and it seems to help a bit. Still didn’t have any dinner last night though. 

Well Spurs didn’t help me feel better did they … Not the easiest team to support… 🤦‍♀️. 

Regarding my sessions… i actually assumed 10 sessions. I can’t recall if they actually said that or I just assumed. If so I’m halfway through. But certainly next session I will try my best to drink cold drinks to alleviate the metal mouth. Frozen fruit is too cold and hurts my teeth. 

Doing some painting indoors today. Did the filling round the edges yesterday. Just taking my time so I don’t get knocked out. 

Last weekend was the wedding we were meant to go to in Maine. Our youngest was best man. So sad we couldn’t go. We were meant to be in a place called Boothbay Harbor right now staying in a hotel built on a pier. One of our favourite places and we don’t often do places more than once. Hoping we can get out and about in the New Year.  🤞 Can’t believe it’s only just over a year ago we were up the Mississippi on a paddle steamer. 

Anyways, thanks for your support guys. It’s great to know you’re all there 🤣. Brings a tear to my eye 🥲

cheers, take care

Phil

Hi Phil, 

Great to see you're still powering through with your treatment, and all the DIY jobs. 

Have you got a captain's hat for your cruise? Let your ship's crew who's boss eh.

We've got our fingers crossed for you 🤞🏻

Cheers, 

Kev.

Been reading all of this you are doing so well my dads been diagnosed with TB3 his cT scan is showing slightly raised lymph nodes but not spread to bones and think any where else we will know more in October he had his first injection yesterday I’m hoping he will live a few years yet hope you are ok 😞

The chemo is doing its thing then.. and only four more to go, you're getting there.

Keep going Phil, best wishes. 

Kev.

We all have down days Phil, so don’t beat yourself up about it, but decorating?…that’s extreme🤣🤣🤣

I hope you enjoy the wedding and short break after it.

Take care,

Derek

Just a quickie: had my Degarelix injection today and bloody hell does it hurt. This is the worst I’ve ever had it.

Still feeling so ridiculously tired. I just want to curl up in a ball for 3 months and wake up when the chemo side effects are wearing off. Just want to go bed now , I’m not even hungry ( it’s 5.30)  Wonder how long I’d sleep for…?

Just needed a moan 😊

Cheers 

Phil

Cheers Mike. Only 6 more , that’s great. I’m on it for life now…. Wish they’d do a version that could last 3 months… 

I went to bed at 6 and slept through till 10 this morning.

Phil

I'm so sorry to see that you're struggling Phil. It must be awful. 😟

So sorry to read this Phil, it’s just so unfair isn’t it. You are in our thoughts 

Leila. 

Hi Phil

Sorry to read the chemo is knocking you about a bit,I found that the more sessions you have the greater the side effects,but you are almost there and you will have a good rest period after the last session.

All the best Phil 

Hi guys. Just spoken to chemo dept and as I’ve not recovered enough they’re postponing tomorrow’s chemo till next week. That’ll be my 8th of 10. 
They’re going to ask my consultant about reinstating the prednisone daily . See him the day before my next chemo.

Cheets

Phil

Oh Phil, Just seen your post, I hope the discomfort and pain gets to be managed soon. Keep strong me dear, our thoughts are with you and your lovely family. 
Leila 

Always been a bit of a speed merchant, bikes, horses driving my car too fast. Ahhh such fun hehe. Got stopped coming home from college as a very mature student, and the Bobby said, madam do you know how fast you were going, my answer was, yep, but I’m a safe driver. Luckily my mature charm and my day job kept me from getting a speeding ticket. 
The only reason I slowed down was cos I had the max in tickets eeekkkk, needed to drive for my job. Now I’m a stately lady wot drives carefully on these narrow rural roads.  🤣

Me and the wife remember it well.

https://youtu.be/ibLLuhd-h1M?si=hcA8K7cbC6yuHDIJ

Yes that’ll do 👍…. ⚽️ 

Morning Phil.

I'm sorry to hear that you're on a bit of a downer today. I admire your openess. You are still much stronger and more upbeat than I would be. I hope the black cloud passes and things brighten up.