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Why can’t they treat my Lymph node PCa

User
Posted 12 Jun 2024 at 20:21

Hi Phil

Good luck with the second cycle,I'm just getting over my 8th cycle last Wednesday,had a bad time last night and today a lot of stabbing pains from the tip of my toe to above my eye,think I've done to much the last few days,17miles on me bike 16000 steps round the zoo cutting the lawn trimming the hedge light weights in the garage!!!! I sometimes forget what I've got but when the pain kicks in it reminds me,brought us a static down Devon so moving stuff down there Friday could never have done it without the help of big C,look at the positives ah !

All the best Phil........Phil 

User
Posted 14 Jun 2024 at 11:00

Wow Phil you have been busy … 😳… Not surprised you were zonked out.

Ive was very tired yesterday and had a 4 1/2 hour sleep in the afternoon. Still slept ok last night though. And no leakage in the night at all which I am pleased about. Hope that continues.

Headache gone now too. 

Helping youngest move house today and already knackered. So sitting watching for a few minutes… They are moving themselves so should only have the one Luton van load as they’ve moved a load of stuff to a storage facility in preparation. Plus a load of stuff at ours. But still looks like all our cars are gonna be packed full… 

Might have a beer tonight watching Scotland. 

take care buddies

Phil

User
Posted 14 Jun 2024 at 13:25

Keep cracking on Phil. You're doing great mate. πŸ‘ 

Enjoy the football. 

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

User
Posted 14 Jun 2024 at 16:14

It’s great to hear how well you’re doing Phil.  Not only coping with the treatment but carrying on with everything else.  I noticed when Keith was having chemo he had days when he was knocked out but made up for it on his better days.  Amazing where this inner strength comes from.  Pleased to hear you’re coping with the cold cap, I don’t think Keith would’ve been happy to lose his full head of hair.  Keep going Phil, your amazing!!

Enjoy the match tonight and then England -v- Serbia on Sunday night too.

Ange x

User
Posted 17 Jun 2024 at 11:25

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 

User
Posted 17 Jun 2024 at 13:36

Great to see your update Phil. And thanks for the reminder, I need to cut my grass too!

Still got my fingers crossed for you 🀞🏻

Keep going and keep us updated with your progress πŸ‘πŸ»

Good luck. 

Kev.

User
Posted 17 Jun 2024 at 15:32
Glad you ok Phil and bearing up. Thinking of you as ever. Your friend Chris πŸ’ͺπŸ’ͺ
User
Posted 18 Jun 2024 at 07:58

Hi 

2 down,keep it up and try not to overdo it trust me I know from experience.

Take care Phil 

User
Posted 18 Jun 2024 at 08:15

Originally Posted by: Online Community Member
Been out this morning to get my hearing aid sorted

Keep going Phil.

I said, "KEEP GOING PHIL"

😁

 

User
Posted 18 Jun 2024 at 08:18

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
Been out this morning to get my hearing aid sorted

Keep going Phil.

I said, "KEEP GOING PHIL"

😁

 

 

🀣🀣

User
Posted 19 Jun 2024 at 16:18

Just another quick update. Had a telephone appointment booked with consultant yesterday for 4.30 but as they hadn’t phoned by 6.30 I kinda forgot. Anyways they phoned at 6.45. Said my PSA had gone up slightly, which I guessed it might after only 1 chemo session. ( blood test was the day before my 2nd one). 
But they’d like another CT scan so already got that booked in for Sunday morning at 9.45 …! 
We are at a party in Suffolk Saturday afternoon but driving home afterwards (2 hours drive) so hopefully I’ll be up bright and breezy. 
She asked how I was feeling and I mentioned the tiredness. Guess she wasn’t surprised. But I forgot to ask about flying in August. So I need to call my specialist nurses and ask if they could run it past my consultant.. I still want to go even if it means having the platelet injections if I can. 

Been keeping busy, another smooth down on the speaker cabinets and another layer of oil . Couple of jobs indoors then a new fancy glass dimmer switch for the conservatory lights came so fitted that. Works first time too 😊.. 

Suns out so I’m hoping a little tipple in the summerhouse later with the missus 😁. Even though I’m suspecting my leakage is partly down to alcohol… πŸ₯΄

Out with a couple of mates for a meal tomorrow evening so low alcohol beer for me as I’ll drive there. 

Look after yourselves guys, πŸ‘

Phil

User
Posted 19 Jun 2024 at 16:24

Have a great time with your pals Phil. Friends are so important.

User
Posted 02 Jul 2024 at 09:19

So blood test today for my Chemo tomorrow. I have a mild cold so hoping they’ll still do it. 
I’m still getting very tired needing the odd nap. It’s been like that the whole 3 weeks. Also breathless if I exert myself. I even woke in the night feeling I couldn’t breathe properly so I got up and slept in a chair downstairs for a couple of hours as my breathing was more comfortable like that. 
Will be asking about it at the Chemo. 

Swollen ankles don’t seem so bad now. Also need to try to diet a bit as barely any of my clothes fit anymore, and my face is now round as a balloon. Even my phone doesn’t recognise me anymore and I’m having to use passwords again… 

Cheers

Phil

User
Posted 02 Jul 2024 at 10:28

Ey up Phil.

I'm sorry that you're struggling a bit. Your energy has always amazed and it's a shame that the chemo has obviously sapped it. I know, from previous posts, that you take pride in your appearance and the bloating effect of your treatment will hit you harder.

I'm lazy, scruffy and overweight, infact the wife used to nickname me Onslow, (after Hyacinth Bucket's brother from Keeping up Appearances.) So if I ever need the same treatment, and suffer the same side effects, no-one will see a difference.😁

Good luck mate

 

 

Edited by member 02 Jul 2024 at 10:50  | Reason: Additional text

User
Posted 02 Jul 2024 at 10:54

Hi Adrian.
Yes just having a bit of a down day today. I suppose we all get them .

Yes I don’t like being scruffy and I feel so fat 🀦‍♀️… But I should get out and walk more. I see lots of guys on the chemo are still out on bikes etc and that’s brilliant. Not sure I’d get very far at the moment 🀣

I remember Onslow , what a character and a classic TV show. 

I admire people who can be themselves and don’t care what others think. I was always trying to be the smartest kid at school. Probably because I lacked confidence in myself. 🀷‍♂️. 

Hoping you never need to use the chemo πŸ‘

Take care 

Phil

User
Posted 02 Jul 2024 at 21:16

Hi both 

No pain no gain Phil,try and keep moving but in moderation,9th chemo done for me 1 more to go,sorry to be a sticky in the mud but guess what onslows actor passed with?Goggle it

Regards Phil 

User
Posted 02 Jul 2024 at 22:03

Originally Posted by: Online Community Member
sorry to be a sticky in the mud but guess what onslows actor passed with?Goggle it

Poor old Onslow. He was only 68. πŸ™

I loved Geoffrey Hughes in his other well known roles. Eddie Yeats in Coronation Street, Twiggy in the Royle family and Vernon Scripps in Heartbeat. He always made me smile.

Edited by member 02 Jul 2024 at 22:24  | Reason: Additional text

User
Posted 04 Jul 2024 at 12:30

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

User
Posted 05 Jul 2024 at 07:19

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 

User
Posted 05 Jul 2024 at 21:03

Phil, we are going to San Fran, Vegas, NYC in November!

User
Posted 06 Jul 2024 at 17:51

Oh I’m right jealous of you two. New year holiday for us . Not sure where yet but a while yet to go. 🀷‍♂️… Hopefully I’ll get some energy back by then. 

Trying not to worry about the PSA. Be nice to see a reduction next time. 

We both tested positive for Covid this morning. Hoping it’s only mild as I really don’t want to have to rock up at A&E with a high temperature… 

cheers 

Phil

User
Posted 06 Jul 2024 at 20:48

Hi Goalhanger,

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

Best wishes,

JedSee.

User
Posted 09 Jul 2024 at 20:00

Still feeling crap. So very tired and a bit breathless , but no fever or cough. I’ve also just started with diarrhoea which is not great. Just gotta make sure I drink enough. The missus is a bit better but still tired. 

By the way my hair is starting to go curly when it’s normally dead straight. 

Oh well tomorrow is another day… ! 

Stay safe, take care 

Phil

User
Posted 24 Jul 2024 at 10:27

Ok so sat in my Chemo chair now for my 4th Session. I missed my cold cap last time and my hair is falling out already so nurse said the damage is done so not having the cap anymore.  Had my hair cut nice and short this morning so bring it on 😁. Also bought a straw trilby hat to cover my possibly bald pate… 

Got my frozen fruit ready as I have been suffering a bit from metal mouth. Also got a tin of peppermints as they help too.

My bloated and painful tummy has eased off a good bit now. Whether that’s due to peppermint capsules I’m taking 3 times a day don’t know but they are adding lamzoprazole to my meds to help anyway. So pleased it’s eased off though as it was very uncomfortable. 

Also showed them this morning my swollen ankles and they said just keep them elevated when I can and it’s not bad enough for any treatment which is good news. 

So all in all doing ok. Just gotta see my PSA from yesterday’s test 😬. Rest of bloods all looking good according to the nurse. At least we got over the Covid fairly quickly without any lingering symptoms. 

Looking at taking the ferry with our youngest and missus to Jersey for our grandsons 1st birthday end of August as I can’t fly. Fingers crossed for the weather as the party is in the beach. 

Jersey family over here in 2 weeks as we’re up to watch Tottenham play Bayern. Had to book a minibus taxi as not sure I could do all the walking between stations on the train/underground. Stairs, or inclines are the killer. If you never been to Tottenham stadium it is amazing. Very well thought out and loads of food/drink outlets and places to sit down and eat/drink. πŸ”πŸΊ

Anyway Onwards and upwards… 

Take care Y’all.

Phil

 

User
Posted 24 Jul 2024 at 13:22

Hi Phil

It's great to see that you're coping with the chemo and looking forward to the family dos. You'll look really dapper in that straw trilby. Keep strong mate. 

User
Posted 24 Jul 2024 at 15:05

Hi Adrian.

I found out today that I would need travel insurance to even go by ferry to Jersey as they don’t have reciprocal medical arrangements. Repatriation costs are covered by insurance. So as our travel insurance costs whilst on chemo would be silly money if you could get it we decided not to go. 
So our youngest and his missus are flying instead. We’ll have to watch the videos after… 

Oh well we’ll see them in 2 weeks and they’re over again in September. 

Looking forward to finishing the chemo and hopefully being let loose on the world again 🀣

Phil

User
Posted 25 Jul 2024 at 11:03

Hi Phil

Insure & go and all clear will insure you even if your on chemo as long as your not end of life which your certainly not,give them a ring you may be surprised.

I'm off to Prague,Vegas and new York in the next 6 weeks,craming them all in while off treatment and before PSA begins to rise.

Regards Phil 

User
Posted 25 Jul 2024 at 11:22

Originally Posted by: Online Community Member

Hi Phil

Insure & go and all clear will insure you even if your on chemo as long as your not end of life which your certainly not,give them a ring you may be surprised.

I'm off to Prague,Vegas and new York in the next 6 weeks,craming them all in while off treatment and before PSA begins to rise.

Regards Phil 

Thats good info thanks Phil. I will try them πŸ‘

Been to Prague , really interesting City. If you can do a visit to Terazin Internment camp. Very, very sobering, glad we did it at the beginning of our holiday so we could then see all the lovely parts afterwards. 

Want to do a Vegas flying visit and New York too. Done lots of the States but not those places — yet πŸ‘. 

Got to plan breaks even in the Uk as the Chemo is every 3 weeks and my Degarelix is every 4 weeks. Would be good if the Degarelix could be every 12 weeks like Prostap or Zoladex. 

Cheers, take care Phil

Phil

User
Posted 30 Jul 2024 at 17:20

Just come off phone to my consultant. PSA coming down now at 13 from 18.8 last time. Also bone scan and bloods showing my bone mets are responding to the chemo Yay… 

Having some alcohol free wine now … then fresh seafood from Leigh-on-sea for tea. 

Phil

User
Posted 30 Jul 2024 at 17:30

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

Phil 

 

User
Posted 30 Jul 2024 at 17:33

Originally Posted by: Online Community Member

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

Phil 

 

 

Thank you, must admit I came off phone and a little blubber… 

Phil

User
Posted 30 Jul 2024 at 17:46

Fantastic news Phil!

That should make the wine all the more enjoyable. 

Long may your response to treatment continue 🀞🏻

All the best. 

Kev.

User
Posted 30 Jul 2024 at 18:06

Originally Posted by: Online Community Member

Thank you, must admit I came off phone and a little blubber… 

I thought you were having sea food later? 

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

User
Posted 01 Aug 2024 at 16:43

That’s brilliant news Phil.  Keep setting your sights high - can certainly recommend Las Vegas/New York trip.  One of our most memorable holidays.

All the very best to you and your family

Ange x

User
Posted 19 Aug 2024 at 10:42

Just a quick update after my 5th Chemo infusion.

Still suffering the fatigue which i know is pretty common in the first week after the infusion. Still get the breathlessness if i do too much and they’ve told me to let them know if it gets any worse. Like wise swollen feet and ankles.

Hair seems to have stopped falling out now and has halted at the point where i look like ive just had a number 5..!

Worse thing at the moment is the metal mouth. Permanent horrible taste in my mouth and anything i eat tastes disgusting. I didn’t even have any dinner yesterday as I just couldn’t face it. Hoping it will ease off in a day or two. Hoping my lack of appetite might help with the bloated belly but no signs of a reduction as yet !

Anyway onwards and upwards….

Take care everyone,

Phil

User
Posted 19 Aug 2024 at 12:41

Hi Phil,

I'm sorry to see the side effects are taking a toll on you. I know from your previous posts how you like to be busy and how much you enjoy your food. Talking about your favourite things, I'll be watching Spurs tonight on Sky Sports. I'll cheer them on for you. I've just had a good haggle with Sky. I got the same package for 50 quid less than they wanted, but have had to contract in again for another two years.

Keep as strong as you can mate.

 

 

Edited by member 19 Aug 2024 at 12:43  | Reason: Typo

User
Posted 19 Aug 2024 at 17:23

Hi Phil, 

Another round of chemo, and those side effects must be really difficult to contend with, I can't imagine what it's like. But you're powering on with your incredible battle, and yet still have the determination to carry out DIY jobs and help your wife wash her car. 

You're an inspiration Phil, keep fighting!

Cheers, 

Kev.

User
Posted 20 Aug 2024 at 08:21

Hi Phil

Totally know how your feeling but you gotta keep going which it seems like you are don't let it get the better of you

1 to go.....best wishes Phil 

PS your your thread views are getting close to mine!!!! Game on lol 

User
Posted 20 Aug 2024 at 08:58

Hi Phil

You're doing really well coping with them so far mate. I understand the metal mouth being such a frustration, given how much you enjoy food. That must be very frustrating. One more session to go? Hang in there pal.

Ian. 

User
Posted 20 Aug 2024 at 09:45

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.  πŸ€ž 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 πŸ₯²

cheers, take care

Phil

User
Posted 20 Aug 2024 at 11:28

Hi Phil, glad to hear your feeling a bit better today. Your inspiring us all. Roll on New year

User
Posted 04 Sep 2024 at 13:34

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 πŸ₯΄. 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

User
Posted 04 Sep 2024 at 14:28
You got this Phil

All the best

Jac and Al

User
Posted 04 Sep 2024 at 18:33

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.

User
Posted 04 Sep 2024 at 22:58
Well done Phil, we have some decorating to do, let me know when you are available.

You are doing so well me dear.

Leila

User
Posted 05 Sep 2024 at 12:28

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 πŸ‘

Phil

User
Posted 07 Sep 2024 at 11:05

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 😞

User
Posted 07 Sep 2024 at 18:44

Hi Terriex. Good luck with your Dads treatment, hoping the injection ,which i presume is a Hormone therapy , does the job for a good while yet. 

So far my results from scans and PSA show the chemo is working which is good news. I see my consultant Tuesday . 

Still struggling a bit with the side effects . Metal mouth again today and I’ve actually missed a family dinner out as I didn’t want to spoil it for anyone. Also tired from yesterday where I might have done too much… 

Hoping your Dads treatment will work for many years. The beginning of treatment is a difficult time but you’ll get through it and start to accept that there is hope. 

Phil

User
Posted 10 Sep 2024 at 07:10

Hi again I’m hoping so to I’m sick of the constant worrying and researching 😞 he’s 72 this year hoping he as atleast 5 years yet hope you are doing ok phill 

User
Posted 10 Sep 2024 at 16:53

So latest consultation today. PSA still 13 which is ok I guess. Scans showed slight decrease in bones and no spread to soft tissue. So carry on with next 4 chemo sessions and reduce daily steroids to finish in 2 weeks which I’m pleased about.

Onwards and upwards πŸ‘

Cheers 

Phil

 
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