The million dollar question

User

Posted 29 Jul 2024 at 15:34

Another Incurable here!

Heading to Reggio Calabria in September and then a mad 3 City trip to America in November.

Went to see Bruce Springsteen at Wembley on Saturday, 23,000 steps was a lot for me, but a smile it put on my face!

User

Posted 29 Jul 2024 at 18:50

Hi linda

Yes,for now I'm on no treatment.

Regards Phil

User

Posted 30 Jul 2024 at 11:00

Went to see Bruce Springsteen at Wembley on Saturday, 23,000 steps was a lot for me, but a smile it put on my face!

WOW , 23,000 steps Awesome… And the holidays sound brill too .

Yes,for now I'm on no treatment.

Does that mean you’ve finished the HT as well Phil ? And no steroids either ?

Phil

User

Posted 30 Jul 2024 at 13:01

Hi Phil

Yes I'm still on the 3 monthly prostap injection,I'm slowly decreasing the steroids tablets so should be totally off them in a few weeks.

Regards Phil

User

Posted 16 Aug 2024 at 08:00

Hi all

Update time,had my first chemist appointment and blood test result yesterday since finishing my 10 rounds of chemo, unfortunately my PSA has risen from 9 to 11,the chemist did not seem to concerned she said that this was not unusual with Docetaxel and we will wait and see the results of the scan which I'm having in a few weeks,I'd like to hear anybody's views on this PSA rise,I thought that after 6 months of chemo that my PSA would not start to rise so quickly after finishing my treatment,onco appointment end of September.

Regards Phil.

User

Posted 16 Aug 2024 at 08:44

Hi Phil

Sorry to see your PSA has risen, after completing your docetaxel treatment.

Sorry no advice, just sending you my good wishes and hope your scans show things are stable.

Mrs MAS

User

Posted 16 Aug 2024 at 08:56

Hi Mrs Mas

Thanks for that,I've read Dr Google he says words like PSA bounce and flare I'm hoping it's just a blip but next months scan results and another blood test will be the one,I hate living month by month waiting for results.

Regards Phil

User

Posted 16 Aug 2024 at 10:11

Hi Phil. I can imagine the worry about another rise in PSA . Hopefully it will settle down next time. I’ve have heard it can bounce around during and after chemo.
The wait for results is so hard to do. I think people think you just forget about it for a while but you don’t do you.

Also my Onco does seem to use the scans as much as the PSA as an indication of progress or not.

Best of luck Phil. Thinking of you 👍

Phil

User

Posted 16 Aug 2024 at 13:55

Hiya Phil we all seem to run our lives one PSA result to the next, so best of luck and keep fighting, cheers

User

Posted 16 Aug 2024 at 15:59

Hi airyarris

Never a true word said

Cheers phil

User

Posted 16 Aug 2024 at 19:58

Keep at it Phil. You humble us all with your guts and stoicism. I reckon it’s a blip. Set a target Always set a target to look forwards to.

User

Posted 17 Aug 2024 at 08:24

Cheers Chris

I rang the specialist nurse yesterday,there great,we spoke about my blood test results which are slightly different to what I mentioned,last month it was 9.87 this week's was 10.6,we spoke about how small the rise was,about PSA bounce,waiting for scan results and how Docetaxel is still doing its job 4 weeks after my last session,it put my mind at ease and put things into perspective,I'd recommend anybody to ring them if your unsure .

Regards Phil

User

Posted 27 Aug 2024 at 11:01

Hi Phil.

Good to see you’re using the specialist nurses, they are so helpful and will look into stuff for you if you need.

They are a good sounding board and can help to put things into perspective.

How are you feeling in yourself now? Are you slowly beginning to get your old self back ?

Phil

User

Posted 28 Aug 2024 at 09:22

Hi Phil

I ain't to bad almost feel normal,few aches here and there but only when I do to much(which is every day!)CT scan tomorrow will see the results at next onco appointment the end of September.

Vegas and New York in 2 weeks time so really going to let my hair down there.

How are you Phil?how you coping with chemo are they thinking of giving you the 10 cycles like they did with me?

Best wishes Phil

User

Posted 28 Aug 2024 at 10:23

That’s brilliant that you’re starting to feel ‘almost’ normal again. I’m looking forward to that happening. Nerce wracking time waiting till end of September for the Ct scan results. But you’ll be too busy on your holibobs to think about crap stuff. I’m right jealous as both those places are on our list. Obviously I’ll have everything crossed for your results and hopefully you’ll get ages before anything starts off again.

We went to Finland in Jan ‘18 a few days after my first bone scan and a week after diagnosis. I asked them not to phone me till we got back. I never thought about the PCa the whole time but unfortunately the missus was a bag of nerves. So we’re all different. Hoping you will put it all to the back of your minds.

We might book an early spring to Boston then up to Maine as we missed the wedding this month due to my flying ban. One of my BA companion vouchers runs out in May so will try to use that up.

I’ve had a rough time after my last chemo , which was my 5th. Very tired, awful metal mouth and really bloated stomach. Taking some meds for the mouth and stomach and they’ve both eased off last couple of days. Energy levels a bit better too. Next chemo got to drink cold stuff to help with the taste buds and I’m learning to eat less and a bit more healthier 😳…

I was lucky my Onco arranged a CT and Bone scan after my 3rd session. He tells me that the chemo is working on the bone mets, so that’s good. PSA going down too.
I have an appointment to see him f2f on the 10th Sept so hopefully we’ll carry on with the chemo for the full 10 sessions.

Have a brilliant holiday and good news from your Onco on your return. 👍

Cheers

Phil

User

Posted 28 Aug 2024 at 18:08

All the best ti both of you, Phil and Phil….and have a great holiday Phil😊

Holidays really help in keeping you mind off thinking about PCa.

Derek

User

Posted 29 Aug 2024 at 08:02

Thanks decho and phi.

Will update thread after next appointment.

Phil

User

Posted 27 Sep 2024 at 09:27

Hi all

Update time....well 2 months after finishing 10 cycles and 6 months of Docetaxel chemo PSA is on the rise (20) CT scan not to bad,no lymph node involvement but showing signs on my ribs,strange cause no issue with ribs aching seems to be more neck and shoulders,pet scan being arranged lit 177 & rad 223 being mentioned we will see what the scan results say.

QOL not to bad, managed to get to Las Vegas and New York what a place.will keep you updated.

Take care all Phil.

User

Posted 27 Sep 2024 at 09:36

Hi Phil,

Thanks for posting your update, I've been thinking about you.

Hope you had a super time gallavanting!

Pity your PSA is going up again, but glad your scans don't sound too bad.

Is it Leutiutuim you're looking at next?

My Allan has just had cycle 2 of cabazitaxel and is suffering.

I had a look at leutiutuim as well, it's fairly costly so will have to consider further.

All the best

Melissa x

Mrs MAS

User

Posted 27 Sep 2024 at 09:56

Hi Phil. Really sorry to hear the PSA is rising again and some more mets showing up . I suspect as my consultant told me they will use the scans now for determining more treatment and not so much the PSA. Hoping they get your new scans booked in soon as I know the waiting is a nightmare when all you want to do is know what’s going to be happening. I’m hoping to talk to my consultant soon as one of my bone profile results wasn’t so good this week. Might indicate chemo resistant mets.

Glad you had a great holiday. Hoping I can get out to see those places some time.

Will be thinking of you mate. Please keep us posted when you’re up to it 👍

Cheers

Phil

User

Posted 27 Sep 2024 at 10:07

Hi both

Thanks for your thoughts,one is self funded the other is NhS I forget which one,cabazitaxel is still in reserve.

I'll cross that bridge when the pet scan results come in.

Cheers Phil

User

Posted 27 Sep 2024 at 12:55

Sorry to hear your news, best of luck with the results, curious how you coped with long haul flights, for me 41/2 hours to Tenerife is more than enough takes me a couple of days to recover

Look after yourselves

Daveh

User

Posted 27 Sep 2024 at 15:34

Hi Phil - well done for getting to New York and Las Vegas! Hope the scan is OK and you can plan further trips - we all need things to look forward to 😊Good luck!

User

Posted 27 Sep 2024 at 20:53

Hi Phil , as ever sorry to hear this news. My fingers are always crossed for you and your courage is totally admirable. Best wishes

User

Posted 28 Sep 2024 at 09:15

Hi Phil 🤞 and you can look forward to another holiday 😎

All the best

Jac and Al

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