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Why can’t they treat my Lymph node PCa

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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. 🍔🍺

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 👍

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 👍.

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. 🤞 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

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