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Why can’t they treat my Lymph node PCa

User
Posted 29 Oct 2024 at 12:35

Hi Phil

I've just caught up on your thread, and am really sorry you're having such a rough time of it mate. Glad to hear you are a bit better today. Hopefully you'll be back tinkering with your bike again before long πŸ‘

Stay strong pal.

Ian.

User
Posted 02 Nov 2024 at 17:11

Quick update : Feeling much better now and eating better. Lost 1 stone 8lbs … 

 

Blood results encouraging. Potassium back up and anaemia better. CRP also better. Nurse pleased with progress . She also doubled my steroids for 1 week and also said keep taking one laxative a day. 

 

Trying not to think about the remaining chemo sessions. Will see my consultant in a few weeks and find out my PSA and results of CT scan. Hopefully the chemo I’ve had has pushed the PCa back a bit.

 

Had our oldest here for a week with his missus and our grandson. Hard work but lovely. And we booked a holiday together with them for next April. Only to Portugal and an all inclusive which we never ever do but looks lovely. Used our BA Avios and an almost run out companion voucher to get very cheap flights. Flying business both ways which seems ridiculous for a 3 hour flight but it was so cheap. You get a row of 3 to the two of us plus food on board, priority boarding and use of the BA lounge before both flights. Had to do it. 😜. Meeting our son and family at Heathrow as they fly in from Jersey to transfer. Need to sort some travel insurance out now … ! 

 

I also felt well enough yesterday to think about sorting my motorbike out. So ordered 3 new coils and a new throttle cable as the old one is a cheap s*** one and doesn’t fit and the coils are 51 years old . Gonna remove all 3 carbs and re-set as well … 😁

 

So got another blood test next week for the P/nurse and hoping all will be good with the results. 

 

The missus is taking her friend out tonight to see the Stylistics and a meal . I was meant to go but still not up for a night out yet.

 

Hoping y’all doing ok πŸ‘ 

Take care

Phil

 

User
Posted 02 Nov 2024 at 19:17

Great news Phil, it's good to hear that you're feeling better and thinking about fixing the bike. 

A trip to Portugal will be an excellent tonic, and hopefully you'll be able to enjoy the food. We recently spent a weekend in Porto, and I have to say that I had more than my fair share of Natas, yum!

Cheers, 

Kev.

 

User
Posted 02 Nov 2024 at 19:47
Great news Phil. Been thinking about you a lot but burying my head in the sand at the moment , so my apologies. I’m just concentrating on living and not my incurable cancer. Best wishes my friend. You’re doing so well and so brave πŸ™
User
Posted 02 Nov 2024 at 21:12

Good to read this Phil, and you’ve booked a holiday. Get that bike going. I was a bikes girl, love my bikes. 
Leila.

User
Posted 02 Nov 2024 at 21:34

Originally Posted by: Online Community Member

Good to read this Phil, and you’ve booked a holiday. Get that bike going. I was a bikes girl, love my bikes. 
Leila.

Hi Leila. I can imagine you as a biker moll 🀣. 
When I met my missus I had a Ducati SS which didn’t really suit a pillion so I bought a Suzuki 1000 which was a beast with lowered bars and a bikini fairing. She was only 15 and very petite and I can remember riding at 150mph two up for miles and miles. I can’t believe I did that now but we was very young 😬… Think I sold the bike to fund our first holiday together… πŸ˜‰

Phil

User
Posted 03 Nov 2024 at 18:48

Haha, 

I had a 125 until I passed my test, then I had a 250 super dream. My brother  had a Laverda, I can remember  me riding pillion, we went far too fast, and cornered wonderfully, I loved it. 
My biking days ended after an accident in my 30’s when I large van went in to my rear end. Thankfully I also rode horses and was skilled enough to bail out without too much injury. I continued with the horses but the bike went,it was cost and my love of my horse was the deciding factor. 

Leila 

User
Posted 03 Nov 2024 at 19:08
Leila you ROCK haha. I’ve had bikes all my life. A superdream wow. We used to call it a wet dream. My love of bikes started at 12 when all the older boys in our road had them. They used to take me pillion on their 250 and 350 LC’s.

One day I went pillion on a spanking new Moto Guzzi Le Mans Mk 2. Boy it was fast. I bet the Laverda was a 1000cc Jota. Collectors item now ! I’ve mostly had big V twins, Ducati , Honda , Buell etc. Fastest bikes I’ve ridden are Yam 500 LC and Yam R6. Boy oh boy the red line on the R6. Endless third gear ……..

Respect lady πŸ‘

User
Posted 03 Nov 2024 at 21:52

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.  πŸ€£

User
Posted 03 Nov 2024 at 23:00
You lot are making me feel inadequate, passed my test on a 125 and didn't take it further.. Love my horses though and ultimately there is no better buzz than riding a horse cross country.
User
Posted 04 Nov 2024 at 09:44

When I was at school I raced sailing dinghies. Then after school I got a very fast 16’ racing dinghy and sailed it so hard and capsized so many times I bent the boom and did enough damage to need a full interior rebuild ( which I did myself) and a new boom and mast 😬. Was a bit crazy…

Phil

User
Posted 04 Nov 2024 at 10:21

Originally Posted by: Online Community Member
Then after school I got a very fast 16’ racing dinghy and sailed it so hard and capsized

Me and the wife remember it well.

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

 

User
Posted 04 Nov 2024 at 10:37

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
Then after school I got a very fast 16’ racing dinghy and sailed it so hard and capsized

Me and the wife remember it well.

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

 

 

🀣🀣

User
Posted 05 Nov 2024 at 18:51

Phil, I use to race the subs up the Gareloch in my Enterprise Sailing dinghy. Loved sailing when I was younger and use to terrify my future wife when I took her out and asked her to sit leeside.🀣🀣🀣🀣

Had a few capsizes as well.

Good to hear your feeling a bit better, hope it continues.

Derek

User
Posted 22 Nov 2024 at 14:44

Originally Posted by: Online Community Member

Phil, I use to race the subs up the Gareloch in my Enterprise Sailing dinghy. Loved sailing when I was younger and use to terrify my future wife when I took her out and asked her to sit leeside.🀣🀣🀣🀣

Had a few capsizes as well.

Racing Subs, hilarious πŸ˜† . 
We used to sail across to Kent from Essex in our Mirror Dinghy’s after we built then in woodwork at school . Was 11/12 years old. Good fun dodging the tankers and container ships.   
My missus never went in my Hornet . Just looking at the crew trapeze put her off .. 

Phil

 

User
Posted 22 Nov 2024 at 14:51

Quick update: 

Tuesday 19th Nov ‘24 saw Consultant registrar F2F.

PSA up to 19 from 12 from when chemo was stopped. But they’re not too worried it seems. Not restarting chemo yet if at all as she says I’ve had too big a break at 7 weeks, and it only seemed to work while I was on it with no lasting effects. 
See consultant again in 4 weeks to discuss next steps. She mentioned a radiotherapy treatment for my spine called Radium 223 , which I need to Google πŸ™‚.. as she said it’s in my bone marrow now.

Feeling like I’m running out of treatment options…. 😬

Very pleased to say I still feel ok albeit a bit weaker than I was. 

Cheers 

Phil

User
Posted 22 Nov 2024 at 16:04
So so sorry to hear this Phil my friend. All happening so quickly and I feel for you. I’d be a wreck. Hope you coping as well as you can ok
User
Posted 22 Nov 2024 at 16:27

Phil , sorry to hear about your situation. Hope you find some resolutions. 

Thanks Chris 

 

User
Posted 22 Nov 2024 at 16:46

Sorry to hear this Phil. I hope you can find a way forward. 

Cheers, 

Kev.

User
Posted 22 Nov 2024 at 17:30

Hi Phil 

Has Cabazitaxel not been offered to you,I'm guessing not because you had a rough time with Docetaxel but I would definitely ask the question if it's available.

All the best Phil 

User
Posted 22 Nov 2024 at 17:45

Originally Posted by: Online Community Member

Hi Phil 

Has Cabazitaxel not been offered to you,I'm guessing not because you had a rough time with Docetaxel but I would definitely ask the question if it's available.

All the best Phil 

Hi Phil. No never mentioned Cabazitaxel . I wonder if they’re concerned enough about the bone marrow involvement to want to knock it back asap… ? 
Feel a little shell shocked at the moment as I’m sure you do too. 
I will have loads of questions at the next consultation. 
it’s another treatment I need to Google 🀣… 

Take care 

Phil

 

User
Posted 22 Nov 2024 at 18:02

Hi Phil.

For once I'm lost for words, mate. My heart goes out to you and your family. I hope they find a way to make progress.

User
Posted 23 Nov 2024 at 14:58

Ahhh Phil, Not what you wanted to hear. Thinking about you and your family. 
Leila 

User
Posted 23 Nov 2024 at 16:16

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… πŸ₯΄ Only joking of course got too much to do yet πŸ™‚

Take care of yourselves my friends. 

Phil

User
Posted 23 Nov 2024 at 21:41

Originally Posted by: Online Community Member
 Only joking of course got too much to do yet.

Like watching Spurs thrash Man City. πŸ˜„

User
Posted 23 Nov 2024 at 22:07

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
 Only joking of course got too much to do yet.

Like watching Spurs thrash Man City. πŸ˜„

 

Yes that’ll do πŸ‘…. ⚽️ 

 

 

User
Posted 27 Nov 2024 at 10:15

Probably should start a new thread but I’ll try on my thread first. 
Does anyone know the likely progression of my PCa now it’s in my bone marrow? I can’t really find much information on here or online. Is it likely to spread , will it be quickly and where to and will the Radium 223 help slow down spread ?? 

I know I should wait to see my consultant in December but it’s playing on my mind. I’ve still got loads of things on my to do list πŸ™‚

I suppose I’m lucky I have no pain at all. I know that will likely change but I’ll take that at the moment. 

Cheers 

Phil

User
Posted 02 Dec 2024 at 12:44

Just catching up on the threads, and really very sorry to hear your latest update Phil. If nothing else, at least my somewhat belated response will bump you back to the top of the conversation leaderboard.

User
Posted 03 Dec 2024 at 10:16

Hi Guys, Well haven’t really found out much about the Radium 223 online any where. So i will have to wait for my hospital consultation and then when i know the start date etc I’ll start ringing round the travel insurance providers and see how it goes. Determined to get some time away this year …

Still got a credit note for a hotel in Appledore for 2 nights this year so that will be ok and we have friends on Exmoor we can stay at. But also got 10 days in Portugal booked for April so keeping my fingers crossed for that one. As we have flights and hotel booked.

I will find out the results of my latest bone scan at the next hospital appointment. Latest CT scan showed no worsening in the lymph nodes. So that’s good considering my PSA went straight up after stopping chemo 4 weeks earlier. I know there’s a specified gap between bone scans but not sure about the CT scans.

I had my last Chemo on the 25th September and my CT scan on 25th October and we had the results during our latest consultation on 19th November . I had my bone scan on that morning too so no results from that yet.

Still wonder why they keep giving you the hormone therapy even though it’s obviously doing nothing or very little…? I must admit i feel like my facial hair is growing quicker lately and so I wonder if my testosterone is raising slightly? They don't test for that anymore on the blood test.

So just a bit of nail biting for 2 weeks now …..

Keep going guys, keep strong and good luck

Phil

User
Posted 10 Dec 2024 at 09:55

Hi guys. 
Had my blood test yesterday in readiness for my consultation next week. I did notice there’s no test request for PSA or Testosterone. So presuming they’re not using those as any kind of guide now. 

I understand that they’ll use the scans instead but it still kinda knocks it home how far down this windy old road I am now. 

So feeling a bit down today. Need to write some Xmas cards but I’m sat at the table with them in front of me and I can’t get going…! 

Hope you’re all feeling better than me and cranking up for Christmas 🀢. We got a new tree and it’s so much nicer than the old one … And all the decs up except the outside lights etc due to wind and rain. 

Take care everyone, 

Phil

User
Posted 10 Dec 2024 at 10:45

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. 

User
Posted 10 Dec 2024 at 12:14

Hi Phil,  there is so much I want to say but find it difficult to put into words….. I really feel your anguish and have admired your strength as you’ve been facing and clearing the hurdles.  Another huge hurdle next week and we’re all there behind you.

Take care and sending lots of love to you and your family xx

User
Posted 10 Dec 2024 at 13:59

Hi Phil, 

Writing Christmas cards is sometimes a bit like writing 100 lines of "I must not talk in class" at school, not that I ever had to do that of course πŸ˜‰

Good luck for next week mate 🀞🏻

Cheers, 

Kev.

User
Posted 10 Dec 2024 at 15:33
Best wishes as ever Phil and hopefully despite the circumstances you are still feeling well. Gunning for you ok
User
Posted 11 Dec 2024 at 09:19

Hi Phil

I know exactly where you are as I'm in the same place,we put a small tree up and a few decorations we're just not in the mood for Xmas but feel we have to go through the motions,wife just didn't want to be here for Xmas playing happy families so we're off to Lanzarote for 5 days for Xmas/boxing day etc as this will probably be the last time I'll be able to go abroad,went to bed last night a 11:15 was awake till 1:30 to much going on in my head have been referred by my specialist nurse to see a therapist which I'm going to see yet my wife is refusing to see anybody,it's mentally tough at the mo but physically I'm coping even tho my cancers on the spread and PSA is on the rise,out on my e/bike this morning to blow the cob webbs away.

Sorry for airing things on your thread Phil,stay strong pal 

User
Posted 11 Dec 2024 at 15:10

Hello guys and gals , lovely to read your messages of support. It really does help knowing you’re all there.  I’m feeling a little better today . Done a few jobs today which always helps. Empty Xmas boxes back up in the loft.

 

Hi Phil, good to hear from you. Yes we are basically in the same rickety old boat hoping it stays afloat for a while yet. I suppose we should liken any further treatments to a spare bucket so we can bale out a bit of water …

 

I started seeing a counsellor fairly early on in this journey and it was a Godsend. Mostly at the beginning it was helping me deal with some childhood trauma and emotional issues which id never ever spoken to anyone about before. I couldn’t move on until I’d started to deal with all that. I’ve seen 2 different counselors now and they were both amazing. Both NHS and although Ive finished now the last one did say if i get issues related to the cancer i can get maybe a couple more. I may well give them a call and see if i can do that. 

 

Certainly give the counseling a try Phil. I really found the whole journey of discovering why i am who i am incredibly interesting. I learnt so much about myself. But she did say I’d never be ‘normal’ when i asked her πŸ˜‚. One time she gave me an emotion wheel where you work out what emotions you are feeling. She said try it and straight away she put her head in her hands and said trust me to use it backwards. But we had a laugh about it.

 

I certainly understand the going through stuff in your head while you should be sleeping. I now used a low dose Mirtazapine to help me sleep. Doesn’t work 100% of the time but well enough.

 

Great to hear you’re still getting out on the bike. I last used my bike a couple of years ago. We are lucky to live 25yds from an entrance to a country park, but it is very hilly and I’m not sure i could get far now. I can get down to the sea wall from there which is a flat ride but have to get back up the hill at the end…!   I am still pretty weak from the time on the chemo and i think dropping the steroids for a while didn’t help. Back on the steroids now so feeling a bit stronger but still get knackered pretty quickly. Hoping that will get better. 

 

I had my blood test on Monday ready for my consultation next week and noticed there was no PSA or Testosterone requirement on the form, i nearly asked the nurse to scribble them on the form. Obviously they don’t need to know anymore and I understand that but its still a shock to be reminded that that is where i am on the journey.

 

I hope you have a really amazing time away. The weather should be lovely there this time of year. We’ve only been to Gran Canaria in the Canaries and it was scorching hot… I also know where you’re coming from with regards to getting away in the future. We are booked to go to Portugal in April with our oldest and his family and just hoping we can still go. I’m feeling we wont as I’ll likely still be on the Radium by then. Still saving our Avios points and Companion vouchers though, so fingers crossed at some point we can get abroad again. I wont speak to travel insurance until after next weeks consultation.

 

Anyway, thinking of you Phil. Hope your next consultation goes well and you can relax a bit on holiday.

 

Take care everyone,

Phil

 

User
Posted 16 Dec 2024 at 16:51

Hi guys. I’ve been doing a bit of research , not much but a bit. I’ve seen it’s really common to try Cabazitaxel after Docetaxel doesn’t work. So I’m wondering if I should ask tomorrow at my F2F with my consultant. The Radium is interesting but it will only help my bone mets. I want to hear why they came to their plan… Of course the plan may have changed tomorrow…! 
Cabazitaxel seems to have less nasty side effects. So maybe I can manage a full course … 

Take care 

Phil

User
Posted 16 Dec 2024 at 17:12

Hi Phil 

Yes definitely ask about cabazitaxel,I've been offered it and it's on the table for me and like you I've had Docetaxel but I'm still weighing up my options with self funded letethium and clinical trials.

All the best Phil 

User
Posted 16 Dec 2024 at 17:28

Hi Phil.

What trials have you been offered? 

Just so’s I can ask .. 

 

cheers 

Phil

User
Posted 16 Dec 2024 at 17:50

Hi

None as yet,I've got a face to face interview at Royal Marsden in London on 7th Jan to discuss things,I'll update on my thread when I know anything.

I don't understand why your team have not mentioned anything to you about cabazitaxel or trials or is it the postcode lottery butting it's nose in.

Phil 

 

User
Posted 17 Dec 2024 at 09:35

Yes, got lots of questions this time and no idea why Cabazitaxel hasn’t been mentioned yet. I’ll update later or tomorrow. 

Cheers

Phil

User
Posted 17 Dec 2024 at 19:27

So quick update… 

Bone mets have shrunk a little but there are now 2 more lesions. Lymph nodes pretty static though. PSA was not measured at the last blood test. Added to my next one though. 

He mentioned quality of life quite a few times so I guess I’m at that point where it’s about being comfortable irrespective of the cancer progression. Bit of a punch to the gut but realistic I suppose. 

They aren’t starting anything new now for 2 months. He said not much will happen in 2 months. And the fact I have no pain from the bone mets means they’d rather wait with the Radium until I get pain. 

Good thing is I can now fly again… πŸ‘ 

Cheers

Phil

 

User
Posted 18 Dec 2024 at 09:47

Hi Phil 

Keep positive mate,did you ask about clinical trials, cabazitaxel or letethium 177?I find it strange they don't ask you to have a blood test before every oncology appointment I went yesterday for a blood test and my next appointment isn't until end of Jan,I have one every month.

Best wishes Phil 

User
Posted 18 Dec 2024 at 10:24

Hi Phil. No didn’t ask about trials as he said they think I can manage at least another couple of months without any treatment. Was a bit surreal having them talk about Q of L when up to now it’s been about kicking the cancer back.

Had a little cry last night in bed with the wife . We don’t really talk about what’s coming or end of life stuff. I’m not sure she can deal with it. But it upsets me she’ll still be young when I pop off as she’s 8 years younger than me. 

I do always have a blood test but sometimes they don’t put PSA on it, like last time. 

Take care 

Phil 

 
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