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Why can’t they treat my Lymph node PCa

User
Posted 20 May 2024 at 21:29

Take care me dear, we are thinking about you.

Love Leila x

User
Posted 21 May 2024 at 09:28

Good morning everyone. Well had a good night although I did have to get up twice for wees. Usually i don’t need a night wee , just occasionally one time. 
Also had 2 soft number twos. So we’ll see how that goes today. 
Otherwise feel fine with just a very slight headache above one eye. 
Had all my extra steroids 😳… and the other pills including the anti nausea one. 

So we’ll see how the day pans out. 

Gotta make sure I fill out the diary book they gave me. 

Been checking what I can and can’t eat and had to stop myself having some lovely Cornish ice cream my DiL brought over Sunday - gutted… 😞 

Cheers people, hope everyone is doing well?

Phil

User
Posted 21 May 2024 at 10:50

Ey up Phil,

I was going to PM you to see how you're first night had gone, but I knew you'd only bollock me for being too much of a mothering hen. 😉😁

I'm glad you got some decent kip.

User
Posted 21 May 2024 at 11:05

Adrian, you can be a Mother Hen if you wish. I think we all need a Mother Hen in our lives 👍. Thank you for thinking of me .

Yes slept well , just had a couple of wees to take care of. Not my usual straight through till 7.30-8. 

So far so good with side effects. Sat here after watching catch up of the F1 on Sunday and didn’t fall asleep 🤷‍♂️…

Out to the garage now with my multimeter to check my speaker drivers now they’re out of the cabinets. Then it’s online to order new Capacitors and resistors and some new internal wire.

Take Care buddy 

Phil

User
Posted 21 May 2024 at 12:45

Glad you're feeling OK Phil, I was wondering how you were after yesterday. Yes, avoiding ice cream is probably a good shout! I remember them telling my brother not to drink anything below room temperature. He learned his lesson when he burnt his fingers getting a cold one out of the fridge! It's weird the effect that stuff has on you, but hey, if it works who cares?

Enjoy tinkering in the garage mate.

Ian.

User
Posted 21 May 2024 at 18:59

Hi Phil

Good to hear your over the 1st hurdle,had my 7th cycle last wednesday,I get the sharp headaches over the eye which lasts a few seconds,not been sleeping 2 well last few nights a lot more growing pains in the legs and arms but if it's the price to pay I'll take it,last stomach self injection today as a gauge I find that things start to get a little better day by day from now on.

You may feel a little rough over the next few days but by this time next week you'll be jumping and clicking your heels.

All the best Phil 

User
Posted 22 May 2024 at 11:55

Hi Phil.

Well still feeling ok just that slight lingering headache. Dont feel tired at all. Hoping I’m a lucky one with side effects… I know it’s only my first one though and the effects are cumulative.

Is your injection for blood platelets ? How’s your test results going , still showing a drop? 

We have a wedding to attend in August in Maine, USA and I will speak to my consultant in a couple weeks and ask if I can have an injection for the platelets so I can fly. Won’t cancel till he says no way. 

I’m looking forward to jumping and clicking my heels as I couldn’t do that before 🤣

Take care 

Phil

User
Posted 22 May 2024 at 12:24

Hi phil

Injections are to encourage white blood cells to grow to counter the chemo.

All the best 

User
Posted 22 May 2024 at 17:10

Originally Posted by: Online Community Member

Hi phil

Injections are to encourage white blood cells to grow to counter the chemo.

All the best 

Ah I thought so. I wonder if I’ll be able to get the injections. I will have to ask .. 

Thanks

Phil

User
Posted 26 May 2024 at 11:37

So a quick round up of how I’m feeling after my first chemo.

Felt pretty good on day 1 and 2. But got the tiredness/fatigue every day since . So needed a sleep in the afternoon . 

Also getting acid reflux on some foods and drink. Had some wine Friday night and was ok other than the reflux. So took a Gaviscon which helped. Also found some foods taste different . Got some small fruit to freeze for the next session to help with the taste buds. 

Also having occasional diarrhoea in the mornings. Hoping that goes asap. 

Still feeling a bit tired after we just had a 2 1/2 round trip to Luton to take our oldest to the airport. I didn’t even drive, and had a kip in the back on the way 🤷‍♂️. 

I’ll be looking for ways to lose weight now as need to try my suits on for the weddings we have lined up - 2 in 2 weeks. 

Hoping I’ll get back to normal now and I’ll be ok till next session. 

Take care guys, 

Phil

User
Posted 26 May 2024 at 11:46

Thanks for the update, Phil. Keep strong mate.

User
Posted 26 May 2024 at 15:13

Great to hear from you Phil, keep fighting. 

Cheers, 

Kev.

User
Posted 26 May 2024 at 15:26

Good to see you are coping, the fatigue is inevitable, pleased to see you have the weddings to look forward to.

User
Posted 30 May 2024 at 10:17

Hi Guys. Well still feeling the tiredness a bit. It’s like a could go to bed at any time, shut my eyes and have a sleep. 3 hours yesterday after noon. Still went to bed normal time though. Not having a sleep today though, gonna battle through it.

 

Getting a bit of aching knees occasionally, but i expect that is more likely the Degarelix, which I had the 4th injection of yesterday. Tummy now a bit swollen and very tender as usual.

 

I tried to come off the Domperidone as I didn’t think it was doing anything but the next day had the trotters quite bad so back on it again and seem ok now.

 

Had a bit of a dip mentally yesterday and today. Just not confident the chemo will work as nothing else has worked so far. It’s hard to get out of that mindset once you've gone down that rabbit hole. I know there’s really nothing left if this doesn’t do anything. But I need to man up, its not fair on the missus and it doesn’t help anyway. Need to be thinking of all the things we’ve got planned plus the things we need to plan 😁

 

Well tried my suits on the other day and, well to cut a long story short I need a new suit…. ! Funnily enough it’s the jackets not the trousers as my new tummy seems to fit in the trousers ok . So a trip to Lakeside or Chelmsford required.

 

Motorbike saga for anyone that’s interested.

Fixed a blown transistor in the aftermarket electronic ignition which gave us great sparks on all 3 cylinders. Still not starting, so emptied carb float bowls and lo and behold it started and then re started 1st kick. So we permanently fitted the new transistor and closed the cover. Would the little b****** start again - nope. Sparks still good so checked all 3 carbs again….. perfect. So we’re now wondering if the oil pump is oversupplying and killing the sparks. Checked the pump and yep it’s not closing down properly on closed throttle . Run out of time to re run the cables so next weekend we have another job to do.

 

Speakers.

One tweeter has a blown voice coil but managed to find 2 obsolete direct replacement tweeters in an audio shop in France and I have them now. Voice coil rewinding too fiddly for my ageing eyes now. I have all the replacement capacitors, resistors for the crossover and new internal wiring ready to rock and roll when I have time…..

 

Hope you are all doing well, keeping busy and things are going to plan for you all ?

Take care 

Phil

Edited by member 30 May 2024 at 10:18  | Reason: Not specified

User
Posted 30 May 2024 at 19:50

Hey Phil, 

Great to hear from you and good that you're still fighting the motorbike 🏍

Need to get those speakers working so the neighbours can enjoy your choice of music 😁

As for suits.. I only have two, not sure if they still fit me, and a trip to lakeside is a bit daunting, my Mrs would probably buy more shoes there.

You're incredible mate, keep going strong and keep us updated. 

Cheers, 

Kev.

 

User
Posted 30 May 2024 at 22:14

Hi Phil

Don't be down hearted, docetaxel is tried and tested it will work and if worse worse case there's cabazitaxel to use then there are other treatments on the horizon.

Be positive mate, regards Phil 

User
Posted 31 May 2024 at 09:08

Yes Lakeside always a bit daunting … 😬 and the missus needs some shoes as well 🤦🏼… 

To be honest I don’t mind going and we’re going early Saturday so maybe a spot of lunch there… 

Yes I’ve not actually heard of anyone on Docetaxel where it hasn’t done anything. So fingers crossed. Cabazitaxel I really don’t know about as I tried to not think about getting this far along the treatment line.

Wonder how soon the immunotherapy treatments will become more widely used outside of trials. 

Off outside now to break down an old bed in the rain to go to the tip. Got a couple of old step ladders to go too plus other crap. Need some space in the garage. It’s only a dinky single garage compared to where we moved from where I had a really large garage, lots all cupboards I built down one side with a long workbench….. I do miss that 🥴 but I’ll be ok once I’ve done a tip run ( or 2 ) 😁

Cheers guys, thanks for the kind thoughts,  appreciate it 👍

Phil

Edited by member 31 May 2024 at 09:09  | Reason: Spelling 🤦🏼

User
Posted 01 Jun 2024 at 08:50

Morning chaps. Woke early this morning with very bad knee pain. I’ve had it before but this is the worst. 
I imagine it’s the Degarelix causing it. 
Anyone any ideas to alleviate as it’s stopping me going out today. Tried Ibuprofen but not kicking it.

Thanks

Phil

User
Posted 12 Jun 2024 at 13:38

Well hi guys. Me again. 
Sat in my chemo seat waiting for my 2nd infusion to start when the cold cap is ready. 
By the way I didn’t get a recurrence of the knee issue so that’s good news.
Had some out of breathe issues this last week but we were away in a hotel 2 long flights of stairs up with bags and it was a slog… My bad for not doing enough exercise. 
But I managed to Dad dance till gone 11 Monday night at a wedding so not so bad… And a lot of wine from 1 in the afternoon which probably wasn’t the wisest thing. Detox now for at least till Sunday night when England are playing 🍺 ⚽️ 

Had a bad night last night not sleeping and with needing to wee 3 times. Unlike me but could be the alcohol overload. The nurse here told me I can take the extra steroids at lunchtime instead of evening. So she’s given me some for today so I’ll have a sandwich shortly which should help with sleeping as she said it’s a very big dose to take before trying to get off. 

I’ve also started to have some leakage issues for a month or so which is new for me and not fun. It’s happening during the night too now so I’m gonna need night pads unless I can sort it . 

Worse I’ve had last night so wondering if it was the alcohol that made it worse. I must also get back to Kegal exercises. Could be the RT damage they said could happen in the future as I’m there now 6 years later … 

So overall side effects not too bad , just tiredness and weakness. I have also been feeling a bit down and contemplating getting back in touch with my counsellor to see if she’ll do me another couple of sessions. I should probably wait till a couple of chemo sessions in really as I won’t know till then if it’s working or not. 

Youngest son moving house this Friday so gonna be busy this weekend. They’re only moving a mile or so, so they’ve put almost everything in a storage unit and round ours so they’ve only got one van load Friday and the rest when they’re ready. 

Gonna bring his Lotus Elise round to park on the drive while they move so I can do a pose in it - if I can even get in it now 🤣… 

Still waiting for the cold cap to go on , hope they haven’t forgotten or I’ll be late out again. 

Take care guys,

be back on soon with 2nd infusion side effects update. 

Phil

User
Posted 12 Jun 2024 at 19:23

Great update Phil, and great to see that you're cracking on with your treatment.

Also good to see that you're keeping the wine industry in business 😁

Hope you can crack the weeing issue 🤞🏻

Good luck. 

Kev.

 
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