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

Notification

Error

<12345>»

Why can’t they treat my Lymph node PCa

Email this conversation Print this conversation
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

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 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 14 Mar 2023 at 11:19

Hi Ange. I’m afraid I find it only too easy to look backwards, probably as you realise there isn’t so much in front as you expected… Looking back for me is painful and I don’t know why my brain does that 🤷🏼‍♂️. Gonna be one of my first questions to my counsellor is how to stop looking back . 
Can’t wait to see Daughter in laws bump tomorrow 😁

Making plans is a great way of forcing your mind to look forward. We are trying to balance having lovely holidays with enough left in the bank for my wife to survive when I croak !… as she is 8 years younger than me and doesn’t get her state pension for another 6 years. She won’t get my private pension as I decided to not have the spouse option. 🤦‍♀️

You are so kind to be looking after Keith’s brother . It must be very difficult. Would you be able to fit in some weekends away? Would McMillan nurses be able to help? I know some people say they don’t want help. My Dad was like that, he brought my brother and me up to be very independent and both of us don’t like asking for help. 

Cross trainer is a great exercise. I also do cardio , Rowing and Bike but also weights, which is to try to stop the muscles wasting away and to prevent osteoporosis. I do push myself a bit more than I should but that’s me, but it feels good after. I’m going to add swimming in later.
I used to be a very good swimmer when I was young. Living 100yds from the sea wall helps. I was unofficial life guard but one day when I was 13 my girlfriend and her mates went swimming alone as I was playing football . She nearly drowned and had stopped breathing but her Mum was called and gave her kiss of life and brought her back. Lucky they lived right next to the sea wall . I felt very guilty for a long while. Bloody hell I’m doing it again 🤦‍♀️… 

Best get on with my chores now 🤣

I think someone on the forum has a sign off which says something like ‘live every day as if it’s your last’ Great words.

Take care

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 10:43

Morning everyone 😊. Just thought I’d see if anyone can help me. … 

I’ve just recently started feeling a bit sick in the mornings. Not from my stomach but seems to start from my throat. I brought up a little yellowish bile this morning. I thought I was ok but went to the gym and I’ve got no energy at all.

I take Solifenacin, Tamsulosin and the Bicalutimide first thing with my tea, before breakfast. As my wife is a dispenser in a pharmacy she asked her pharmacist and he says the Bicalutimide can cause sickness. So I should take it after breakfast. I will try that , although the instructions say it’s ok on an empty stomach.

Anyone else ever had this ?

I’ve also emailed my nurse to see what she thinks.  Liver tests are listed on my next blood test so hopefully my liver is not being affected by the Bicalutimide. 

So feeling a bit down today, probably because I couldn’t finish my gym session . I am a bit silly like that and try to push and improve every day but I suppose I have to accept I can’t do that anymore 🤷🏼‍♂️

Hope everyone is doing ok ?

Take care

Phil

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 28 Mar 2023 at 12:05

Leila you sound like my counsellor  🤣🤣. She always told me to look for the good things as it’s easy to let the bad overpower them. You’re right , I did get up and go and did my best . I’m just not a very patient person …. 

Andy, luckily enough I have an appointment already booked for next week to look at me ears …. 🤷🏼‍♂️. Went to my hearing clinic couple of weeks ago and they said my ear looked odd inside and they’d never seen one like that before. They never mentioned it before so maybe somethings going on in there. I’ll mention the sickness to him.

Body is slowly falling apart ..🤣

Phil

User
Posted 27 Apr 2023 at 16:45

Just a quick update a week before my next consultation, which is a face to face as I asked my nurse to request for me . If, as I suspect my PSA has gone up again I will have some more questions and it’s easier in person.

I’ve started taking my morning pills after breakfast now and it seems to have helped a lot. Just had the odd day where I’ve felt sick when I get up.

Still going to the gym 2 or 3 times a week for 2 hours plus badminton, plus much reduced wine intake. Lost 5 or 6 pounds and pushing heavier weights and cycling/rowing further so feel better in myself. 

But , like we all do, getting very nervous nearer to consultation time… I am obviously hoping for a miracle that my PSA has steadied or stopped but I know it’s unlikely. So, I’m steadying myself for the inevitable. I expect I’ll be back on here asking for advice on which next Gen drugs to choose. That’s assuming my consultant gives me a choice. I’m also not sure if he’ll want another scan to see if the little bugger has spread its wings… 

Oh, nearly forgot… doctor says I have perforated ear drum so just gotta be careful and keep it dry till it heals. 

Hope you’re all doing well 👍 Soon be summer time 😃

Take care

Phil

 
Forum Jump  
<12345>»
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2025 Prostate Cancer UK