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Why can’t they treat my Lymph node PCa

User
Posted 26 Jun 2023 at 15:44

Ahhh Phil, not what you wanted to hear, I hope your counselling helps put you back on track a bit. Please let us know how you get on.

Delighted to read you had a good holiday, what an adventure, and a bump to look forward to, when is the bump due?

Take care 

Leila 

User
Posted 26 Jun 2023 at 16:01

Hi Leila, yes so excited to be Grandparents at last… bump is due early August. A little bit sad we will be long distance grandparents, but that is how it is. I also see that Jersey seems so much safer to grow up than the U.K. There are crimes and there are drugs but so much less than here. Everyone, including the kids are so polite and happy. 
Holiday was a fantastic adventure. As well as New Orleans and Memphis we stopped at some plantation houses on the Mississippi and heard the stories of the owners and slaves. So fascinating. Feel very privileged that we can do that. 

Phil

User
Posted 27 Jun 2023 at 13:27

So sorry to hear the outcome of your tests Phil… pleased to hear you had a fantastic time away in the States and then a super time with your family in Jersey.  Keep on looking forward Phil - not long before you have the pleasure of greeting your first Grandchild (yay).  

Hope you get the answers tomorrow that will enable you to do all you have planned for next year and many years to come🤞 

Keith has a telephone appointment next Tuesday for his latest results.  Can’t believe it will have been 4 years this August since his diagnosis followed by chemo and RT and two years since his last HT (Prostap).  We wait with bated breath!!

On a brighter note, we had a great time celebrating Keith’s 70th in Kefalonia, Greece, two weeks ago (decided we just ‘had to go all out for it’) so glad we did.  Keith’s brother was well cared for while we were away and we have more energy to be there for him.

Lots of Love,

Ange x

User
Posted 28 Jun 2023 at 12:04

Saw one of my Oncology team yesterday, not my main man though.

PSA now gone up to 8 point something which she said shows the Prostap isn’t working properly.

So was expecting the Docetaxel discussion but she instead said they are putting me on Abiraterone and leaving the Chemo in the back pocket. I have read that getting the chemo in early tends to give better extension of life so i will ask about that in 2 weeks.

Got to keep having the Prostap injections but stop the Dexamethazone and start Prednisalone.

I didn’t think to ask where my new lesions were or what my Testosterone is. But they want to see me every 2 weeks now for a while to make sure it’s all working ok so I’ll ask next time. I can just walk in to the department with the blood test form the day before and they’ll do it there and then which is handy. Just means another trip to the hospital which although its only 20 mins drive away its taking over 40 mins to find a parking space. 

Never thought id get to this stage as it feels like nearing the end of the road. I do feel guilty feeling like that as i know all the guys on here that are on Abi and Enza and they are so strong and i wish i was like that …..and i know i have to stay strong for my wife and the boys.

Going to be interesting at counselling tomorrow! Last time i went I said I don’t want to talk about my childhood anymore and she said ok but why. I said I don’t feel any emotions about what happened to me (i was emotionally repressed) . So i carried on talking and she stopped me and said she can see that i still blame myself for what happened. I just broke down. So plenty to be getting on with … 40 minutes isn’t long enough 🤦‍♀️. Sorry if that upsets anyone ! Please tell me if I should delete that but it just explains me a little bit and the machinations going on in my little brain as well as the damned PCa   🙃🙄

So, onwards and upwards….

Ange, so pleased you and Keith had a lovely time in Kefalonia, and hopefully also completely forgot about PCa for a while. It’s a beautiful island. We went there when our oldest got his GCSE results by telephone on the beach and we lost our youngest in Lassi for an hour one evening .. A good few years ago now 😜

Best of luck for the next appointment on Tuesday, i’ll cross everything. He should be pleased with himself at 2 years without HT , keep it up. Reading about other peoples PCa journeys does really help and does give inspiration to others.

Been rambling long enough,  sat here looking at the garden and the grass is saying ‘i need a haircut’ but my tummy says i need food and i have badminton this afternoon. 

Take care everyone, and be kind to yourself, 

Phil

User
Posted 28 Jun 2023 at 17:06
Yes, early chemo can extend life but abiraterone is better than early chemo. The only thing that you could have been offered that might be even better (according to the research) is docetaxel combined with daralutimide or apalutimide - but I think these might only be available on a trial
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Jun 2023 at 17:13

Hi Lyn. Yes I expected Docetaxel as he’d already mentioned chemo but they were firm they want to hold it in reserve. 
I’m happy they chose Abi for me 😁and they’re keeping a close eye on me until they’re sure it’s the right course.

Phil

User
Posted 28 Jun 2023 at 18:19

Thank you Phil, very much appreciated.  I think you are much stronger than you realise, if you think about how you keep moving forward with your life, spending precious time with your family and having/planning super holiday experiences with your lovely wife.  You’ve certainly been keeping yourself physically fit too which takes a lot of motivation.  It’s reassuring to know they are keeping a close eye on how you progress with abiraterone.  I will keep everything crossed that this treatment works well for you.  The counselling will be helpful to continue with I’m sure, as it will give you the opportunity of expressing your feelings.  Don’t be too hard on yourself Phil regarding childhood experiences it’s easy when we are an adult to think that we should have known what was right/wrong when we were children.  I have to keep reminding myself of this when I occasionally feel really guilty when I think back to my childhood experience.  I have to keep telling myself that it was not my fault too, but it has had and still does have a huge impact on my adult life.

Take care and be kind to yourself.

Angex

User
Posted 29 Jun 2023 at 11:15

Oh Ange, thank you for your lovely words , and I’m so, so sorry if i caused you to remember old wounds. It wasn’t my intention to cause any distress to anyone. That’s why i asked if maybe i should delete that bit…

Been to see my counsellor this morning and we talked about how i still blame myself , not just for that but for some other stuff while i was at school. I even messed it up with our first foster parents and they said they couldn’t look after us anymore but luckily our Aunt and Uncle volunteered and it was great there although we had to change schools. You tell yourself you were just a kid but you think about it with an adult mind.

You’re right that all those things have an impact on who we are now. I try to tell myself I’m a better person for having those things happen and to understand that life isn’t always a bed of roses….( actually that sounds quite painful 😂)

Yes, be kind to yourself , good mantra, not so easy to do though is it. It’s funny i have talked about ‘triggers’ with my old schools friends and they just say ‘snowflake’ … They just don’t understand.

Anyway, had my first Abiraterone and Prenisone today . So fingers crossed no side effects 🙂.Feeling surprisingly ok with it all. Hoping i continue to feel confident this treatment will work for a good while yet.

Have to get used to taking the Abi an hour before breakfast . Seems like forever 😆

I was talking to the MacMillan Manager today before counselling and she said they have a nutritionist available so i might book something up. She said that the cancer beating foods are all very good but a sometimes it needs a bigger overview of your needs.

Anyways, many thanks again Ange,

Take care, 

Phil

 

User
Posted 30 Jun 2023 at 14:41

Hi Phil,

Pleased to hear you’re feeling confident about your new treatment regime, I sincerely hope this works well for a long long time.

How wonderful of your Aunt and Uncle to take you under their wing and protect you when you were young and needed to be loved and cared for.  You really haven’t caused me any distress at all, honestly.  I just hope your counselling will help you to move forward and you being able to talk about how you feel can only help you.

Keep fighting Phil and look forward to the arrival of your first Grandchild.  Keith and I have four Grandchildren and they keep us on our toes and bring us great joy and give so much love.

All the best,

Angexx

User
Posted 30 Jun 2023 at 16:44

Hi Ange,

I’m so pleased I didn’t upset you , or anyone else  😪

I suppose i feel confident because i trust my consultant, and grateful to have been put onto the Abi. I know how expensive it is…… Not sure how it compares with Enza or Apalutamide though.

Counselling is really helping and this new lady has some other ideas which is interesting and helpful. Very grateful the NHS are paying… 

My Aunt and Uncle were magic. She was 23 and i was 13 and i think i had a bit of a crush on her 😂. We really liked it there, and the school, but after 18 months we had to go back home and back to the old school as our parents came back. I missed choosing my options for CSEs and ended up not doing well. Luckily i was allowed to sit some of them again as GCEs at college as i had spare time on my engineering course and got all A’s 😁

Can’t believe we are going to be grandparents soon, and can’t believe our oldest is going to be a Dad 😳 He is going to take it so seriously…..

Take care, its a tough old world out there 

Phil

User
Posted 03 Jul 2023 at 18:14

Hi Phil, 

You posts are honest and reflective, being able to write about your past and life may help you, and also might help others along the road. Childhood for some of us can be a mixed bag of may experiences, the time with your aunt and uncle sounds good, I hope it gave you some resilience  for the future.

Having PCa and the HT seems to have raised memories for you, it has done so for David as well in some ways, he says it's a mixture of getting older, remembering both good and less good things. He was offered counselling by our GP and he had some art therapy, but it just didn't work for him, as a musician he will go off and play or work in his music room as his therapy. I don't think the paper therapist was able to connect with him. 

David is doing well, his PSA is still < 0.1, he takes a number of  supplements and he also sees a private oncologist. If you are interested in knowing more let me know. As you know David is also Gleason 9 Tb3 with lymph node mets, but the drug regime he is on is quite different from the NHS although he is on Prosap HT as well. We decided to do a bit of hunting around when he was diagnosed stage 4 as he feels he still has a lot of living to do, and life to enjoy. 

It's his birthday this weekend, he's 73, not sure what we will do, but we will enjoy it.

Please feel free to ask us about David's treatment regime of you are interested, but of course it's your choice. 

Just be aware its not too pricey, less than a trip on a paddle steamer ;-) 

I hope you don't mind me mentioning it, I've read your posts out to David and he was keen for me to make you aware of his treatments plans. 

Take care, keep posting your  feelings, and sharing what you feel helps.

Leila 

 

 

 

 

 

User
Posted 04 Jul 2023 at 11:11

Hi Leila, thank you for your kind words. I sometimes feel i am being a bit self indulgent putting some stuff on here but hearing that it may help someone get through something similar makes me feel better about sharing. It’s a big step sharing that you’ve been abused but it’s like a massive weight off your shoulders. It’s too big a step for some people to do, and also most people are not comfortable hearing it. It’s not about sympathy , its more about maybe understanding why we are different. 

For me , the counselling has been so good, helping me try to understand my feelings and why i did things in my childhood and not to blame myself. 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.

It must be amazing to be able to make music. I am so jealous. Can imagine how therapeutic it must be. Listening to me sing its probably a good idea I didn’t get into making music …….

David is in a similar situation to me with lymph node involvement and it’s really great that the Prostap is holding it back, long may that continue. My consultant did say i have more lesions but she didn’t tell me where and I didn’t ask. I will ask next Tuesday when i go again if I’m brave enough …

I would be very interested to hear about Davids treatment. Anything that may help. Willing to try anything. 

I hope David has a really great birthday and you find something special to do. I’m not far behind at 68 . We still celebrate the day we met, and i can still remember it like yesterday, me looking across at her and having that OMG moment, crazy i know.  Just having a meal out this year in our favourite restaurant with our youngest and his wife.

Please feel free to read my posts out to David. 

Take care 

Phil 

User
Posted 04 Jul 2023 at 12:17
Hi Phil, I’ll send you a private message, as David has a long list. 😉
User
Posted 04 Jul 2023 at 12:18

Thank you Leila 👍

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 05 Jul 2023 at 12:49

Thank you Lyn for your kind words. I actually feel I can walk a little taller now 😊

The information about memory is fascinating and rings so true with me.

I can barely remember any boy friends during my school years , they are just ‘ghosts’ . I recall the incidents but not who I was with. But I remember all the girl friends 🤷🏼‍♂️… 

It’s so good to understand more of how you think … 

I am still kinda processing what you’ve said. 

Thank you so much

Phil

User
Posted 05 Jul 2023 at 13:57

The same bookshelf / filing cabinet idea applies to some people when they are diagnosed with cancer, including men who find out they have PCa. We often see comments here about how hard it is to remember afterwards the derails of what the urologist said. It's because the patient hasn't been able to make sense of it, resolve it and then file it.

My husband, on the other hand, is able to put vad news in a box and then nail the lid down - this allows him to forget it ever happened and he is sometimes amazed when I tell him something about his diagnosis or treatment and he genuinely has no recollection at all! 

Edited by member 05 Jul 2023 at 13:59  | Reason: Not specified

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

User
Posted 05 Jul 2023 at 14:03

Lyn, I understand the box and lid thing. I did that from childhood right up till recently . All buried and hidden but the diagnosis plus Hormone Therapy flipped the damned lid off 🤷🏼‍♂️

Phil

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 💪
 
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