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The million dollar question

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User
Posted 01 Jun 2023 at 22:08

Hi Phil I am sorry to read that your PSA is still going up the way. I can see what your Onco has started speaking to you about chemo now as with a quick doubling rate it can be on you before you know it.  I know you wanted Enza to keep things in check for a lot longer and as you know I feel your pain!  Of course it could be something else that is causing the rise and I am praying that your PSA comes down again. Sorry I have no clue regards stents, but i am sure someone will have knowledge.  

I think the holiday is a difficult decision for you right now.  I guess you can only discuss with family and friends and see how they all feel about it too.  Would your stents or any reaction be covered by the insurance?  

As I say, fingers crossed PSA will fall again mate.  Sending positivity your way. 

Michael 

User
Posted 02 Jun 2023 at 21:38

Hi gaz,thanks for response the pendulum is swinging towards going and stuff it,but I need to see how the procedure goes Wednesday and how I feel.

Michael,what can I say I hope you are starring to respond to your chemo,after speaking to my specialist nurse today who is brilliant and we talked for 50 mins over the phone about my test results which my oncologist wouldn't give me the time of day, I've found out that there is no lymph node involvement,I had 1 spot in my skull and 2 on my ribs,12 months ago I had 20+ spots on shoulders back and lungs so positive news there,the lid is still shut but the buggers trying to get out the box.

Stay strong Michael regards Phil 🙏 

 

 

User
Posted 02 Jun 2023 at 22:11

Hi Phil Glad to hear there are many positives for you mate.  Sounds like the battle is still being won in your body. Keep it up pal. I had to stop chemo unfortunately as it wasn’t effective.  

I will see what comes next. 

Take care pal 

Michael 

User
Posted 03 Jun 2023 at 11:55

So sorry to hear the chemo has stopped,what's the plan forward for you?can they do a bit of twicking with the chemo and you can restart?How's you QOL at mo?are you sleeping eating OK and managing to get out an about?

Regards Phil 

User
Posted 03 Jun 2023 at 12:53

Hi Phil, thanks for asking and I don’t want to take over your thread so a quick update.  PSA pushing way up.  I am hoping for Radium 223 but waiting on a scan result.  Otherwise it will be end of road and just management.  QoL is ok just now though I had a Haemoglobin crash and needed a transfusion last week.  My appetite is back now and I am eating again. The transfusion also helped my energy.  I am still mobile, retired from work and still walking.  Had to give up running unfortunately due to precarious bones!  So I am ok Phil, just had an awful aggressive type of this silly disease.  Crossing fingers for you pal and I do hope you get away on holiday ok. 

Cheers Michael 

Edited by member 03 Jun 2023 at 12:54  | Reason: Spelling

User
Posted 07 Jun 2023 at 19:06

Evening all

Just had nephrostomy tube removed and kidney stent fitted until removal of stones,wow what an experience that was felt like he pushing the pipe in my kidney and out of my penis,just had my first couple of wees and what an experience that is as well,the nurse on the ward explained it as a tooth brush being pushed down your urethra and I certainly agree with her there,hopefully the sensations will pass over time.

Take care all regards Phil 

User
Posted 07 Jun 2023 at 19:08

Goodness Phil, that sounds like quite the experience!!! I hope you are ok.  Hope things settle down for you soon and you can make a decision about travel. 

 

Best wishes

Michael 

User
Posted 23 Jun 2023 at 07:28

Good luck with everything Phil and MGF - KEEP FIGHTING LADS!

User
Posted 23 Jun 2023 at 12:38

That sounds horrible Phil

Keep fighting

User
Posted 23 Jun 2023 at 14:51

Thanks guys

I'm going under in the morning to have stones removed god knows what I'll wake upto but what will be will be,I'm convinced that my rise in psa is all the interventions I've had over the last few months as in uti,nephrostomy bag fitted and removed,kidney stent fitted and tomorrow's op,my oncologist begs to differ but I'll take her comments with a pinch of salt,all she talks is chemo chemo chemo and I'm not giving up on enza just yet with a rise of 0.9 to 2.4 in nearly 3 months when all this stones business all began.

Regards Phil 

User
Posted 23 Jun 2023 at 21:37

Phil 1969,

Best wishes for the surgery.

JedSee.

User
Posted 03 Jul 2023 at 19:36

Hi all

Thanks for your replies,latest update on todays oncology appointment which was 1 hour late she was on the phone 9m8sec and virtually put the phone down on me,PSA has not surprisingly gone up again to 3.23 that's a rise 3 months in a row but that co-insides with diagnosed with stones nephrostomy tube fitted and removed,kidney stent fitted removed and re-fitted,stones removed and cafitier fitted and removed,antibiotics painkillers and other meds,oh and a bout of covid in-between  all I hope attributing to the the rise,my oncologist is willing to give me a few more months for stent to be removed on Friday then I can  put the whole kidney stone fiasco behind me and monitor for now,great ain't it living your life month by month.

Take care all regards phil

User
Posted 03 Jul 2023 at 19:49

I hope things improve after all that you have gone through recently Phil always follow your progress and look forward to seeing you improve after the stent is sorted all the best gaz 👍

User
Posted 03 Jul 2023 at 20:07
You’re a rock Phil. Keep on soldiering. All sounds horrible what you have been through to be honest. But I get the living month by month. It’s bad enough for me 4monthly. My Onco isn’t even bothering to make appointments now. Just a waiting game. But I try to keep happy and busy.
User
Posted 03 Jul 2023 at 20:25

same to you Chris I follow your progress and think you are a great inspiration like Phil hoping you are doing ok I know it's tough but you both give all off us strength to move forward all the best gaz 👍

User
Posted 03 Jul 2023 at 20:31

Hi Phil 1969,

So sorry to hear of all that you have gone through (and are still going through).  It sounds like hell.

I hope they can resolve your health issues quickly, and as you say, then maybe you'll get a clearer picture of whether the rise in PSA is related to these other medical conditions or is actually related to a real progression in PCa.  Obviously, we hope it's the former.

I'm sure that many of us on this site are thinking of you and rooting for you.

Take good care of yourself.

JedSee.

 

User
Posted 04 Jul 2023 at 17:15
Hi Phil

Just read through your thread. I'm a bit shocked at how unhelpful your onco has been. I went through 7 different oncos at Weston Park and whilst one or two seemed to be in a rush, the others always found the time to talk and answer questions or alay fears. It's an important part of what they do and it's certainly made a big difference to my journey through cancer. Do you have specialist nurses at the hospital who are available to you? - I found them almost as knowledgeable as the oncos, and much easier to contact.

As for the kidney stones - back in the old days they used to present them to you later and you could keep them as some sort of weird souvenir. But the pain and suffering I am told is unbelievable - you have to experience it yourself to have any idea what it's like. A friend had the procedure where they stick the endoscope in the very last place a guy would wish it. Various guys who'd been through the procedure assured him it wasn't anything like as painful as he feared.

The day after he came back to work in a state of shock. The pain had been extreme to say the least, "if there'd been a gun around I'd have shot myself" he commented. Fortunately he didn't.

You deserve a medal for bravery after going through all that, and a much kinder oncologist. I hope your kidney problems clear up without further issue.

DeanA

User
Posted 04 Jul 2023 at 22:15

Hi Dean 

Thanks for getting in touch,hopefully this time next week the stones will be behind me with the stent being removed from yes you guessed it down below!

Your right the specialist nurse I speak to and meet up with at a group every 3rd week of the month is great all the questions I need to ask she knows and has helped me a lot in getting in touch with the right people and chasing up appointments.

All the best Dean,stay strong 💪 

User
Posted 07 Jul 2023 at 15:58

Hi all 

Quick update...had flexible cystoscopy to remove kidney stent today,passed that little bugger of a prostrate on way past getting it so I stuck me thumb upto it on the screen and said thanks for nothing,not the best experience I've had having the stent taken out but not as bad as I thought it was going to be,well no excuses now if psa keeps rising next onco appointment in October.

Take care all 

User
Posted 07 Jul 2023 at 20:12

Good luck Phil hoping everything stays positive you deserve all the luck going gaz 👍

User
Posted 08 Jul 2023 at 16:10
Best of luck Phil 👍
User
Posted 08 Jul 2023 at 17:52
Good luck Phil. Keep strong 💪 brother
User
Posted 31 Jul 2023 at 12:04

Hi all 

Latest update it's another PSA rise unfortunately to 4.06 but rise has decreased so I'm still clinginging to the hope that interventions that have been carried out due to stones being removed,cafitier being fitted/removed and kidney stent removel 3 weeks ago has contributed to the rise,I have mri scans,bone x-rays and ultrasounds booked in the following month so the proof will be in the pudding.

Oh the joys 

Stay as well as you can all regards phil

User
Posted 31 Jul 2023 at 17:25

Another slight rise but still well below your initial reading. I think this must be considered.

All the best.

User
Posted 01 Aug 2023 at 00:31

Really hope it to be the case phil 🤞🏼

Wishing you the best of luck with your scans x

User
Posted 01 Aug 2023 at 21:54

Thanks both for your support 

Regards Phil 

User
Posted 11 Aug 2023 at 21:50

Hi all

Take a look at Duran Durans Andy Taylor on BBC Breakfast on u tube from 9 hours ago,I really hope he gets 5 years out of lituem-177 (excuse my spelling if incorrect)

Take care all 

User
Posted 12 Aug 2023 at 19:27

Thanks Phil1969 for bringing our attention to this video clip.  I've just watched it.  Inspiring stuff.

Best wished with your own health.

JedSee.

User
Posted 13 Aug 2023 at 11:49
Hi Phil let’s hope life settles down for you now and your PSA drops as well, you’ve certainly been thro’ the mill, take care

DaveH

User
Posted 13 Aug 2023 at 13:26

Thanks for the come back yarris,next bloodtest in a couple of weeks,will have no excuses then,I wonder when my oncologist will pull the plug on enza,there will be no going back then,would have been on enza for 11months was hoping to get a couple of years out of the tablets,but we will see what the bloods say in 2 weeks.

Regards Phil 

User
Posted 13 Aug 2023 at 13:53

Ditto yarris Phil hoping things improve for you Phil you deserve all the luck going you are a inspiration to us all and hoping things improve for you gaz 👍

User
Posted 31 Aug 2023 at 16:44

Hi guys 

Hope you are all doing as best as you can to cope with this nasty disease,its that time of the month when it's bloodtest result time and a visit to the onco chemist,unfortunately it's another rise up to 5.37 that's a rise of 1.21 in a month,I'm trying to look on the positive side as its about a rise of 5 in 4 months and at least its not doubling every month my onco chemist said don't get to hooked on numbers let's wait for scans and x-ray results come in and to wait for my oncologist appointment in 2 months time,I'm not feeling to bad OK I have my off days and it will be 12months next week on enza any views on my psa rise would be greatly appreciated.

Regards Phil 

User
Posted 04 Sep 2023 at 09:29

Dear Phil, 

Psa rises in a row are alarming, as indicating cancer resistance to the chosen treatment, at least to some extent. However, it's worth waiting for the scan results, to check the magnitude of the progress (if any) of the disease. I think this is the most important part, especially in stage  IV cases. My father's onco always asks him if he has appetite and if he feels pain. So, as long as you eat well and have no significant pain, you are "OK". 

Regards 

Teta

User
Posted 04 Sep 2023 at 09:50

Originally Posted by: Online Community Member

Hi guys 

Hope you are all doing as best as you can to cope with this nasty disease,its that time of the month when it's bloodtest result time and a visit to the onco chemist,unfortunately it's another rise up to 5.37 that's a rise of 1.21 in a month,I'm trying to look on the positive side as its about a rise of 5 in 4 months and at least its not doubling every month my onco chemist said don't get to hooked on numbers let's wait for scans and x-ray results come in and to wait for my oncologist appointment in 2 months time,I'm not feeling to bad OK I have my off days and it will be 12months next week on enza any views on my psa rise would be greatly appreciated.

Regards Phil 

 

It least its slow progress on the PSA front mate, not doubling or whatever and 5.37 is still a very low number and within normal range for men of our age, although not "us".

Am praying for you mate and hoping it can be knocked back a bit at the next test.

 

User
Posted 05 Sep 2023 at 08:31

Hi both

Thanks for your reply,as you say teta I'm eating well and feel the best I've felt in the last few months and QOL is pretty good so I'm living the moment while I can,and Paulo your right on the positive side I'm only just above the average PSA range for my age I have mates who are on active surveillance on PSA higher than me so I'm not throwing in the towel yet.

All the best regards Phil 

User
Posted 11 Sep 2023 at 19:04

HI Phil, your positive attitude is inspirational. I know we both started our journeys at similar time. Like yourself I have my low days and I was in a bad place about a month ago! Keep up the good fight and you are often in my thoughts. Sending positive vibes and if you and the Mrs ever fancy a weekend away in North Devon send me a message. Take care. 

User
Posted 13 Sep 2023 at 21:39

Hi Phil I was diagnosed with a hi prostrate level of 3259 gosh but with the prostap 3 injection and apalutamide my psa now is 0.01...i feel OK and really good, I've had a tough time finding a blood pressure tablet but I've ended on a BP tablet and a beta blocker tablet and they work great . I've started getting very mild tinglings though n the odd pain.....any advise would be great....

Cheers Tonyc01 

 

User
Posted 14 Sep 2023 at 09:58

Hi Cole 

Thanks for your response and invite I'll certainly keep it in mind,I go to a monthly local support group but with respect I'm the youngest there and I think have the highest stage so it's good to keep in touch with other guys that are in the same boat as me.

Hi Tony 

I found that my psa dropped like a lead rock in the first month,don't think I can really help with your BP issue,I've just passed 12 months on Enzalutamide and 3 monthly prostap3 injection with 1 being next week,I have a lot of side effects odd tingling being one of them I just moan to the wife and it passes quite quickly,still having good QOL so I'm lucky in that respect.

Take care all regards Phil 

User
Posted 14 Sep 2023 at 10:00

Keep battling Phil you are a inspiration to us all on here gaz 👍

User
Posted 14 Sep 2023 at 10:45
Likewise Phil, I use the local support group but am the youngest member and most of the others tend to be in remission.or recovery. I'm feel very fortunate that my PSA remains undetectable but am acutely aware this could change at the drop of a hat. Outwardly I put on a smile and have just come off the back of twelve weekends in a row of gigging. I'm knackered and am taking a month out. It's the emotional impact it has on me, and ultimately my wife, who has been my rock. Keep up the good fight and hoping you get some positive new soon, you deserve mate.
User
Posted 17 Oct 2023 at 15:37

Hi guys hope you all keeping as well as you can.

Update here...been to support group today and asked about latest bloodtest results from a couple of weeks ago and scan/x-ray findings from about 6 weeks ago,I've took my time asking because there's not a fat lot I can do about the results,PSA has risen again now 8.5 !!! Up from 5.3 the month before Yet scan results have shown no further spread to my bone mets,so we will see what my oncologist has to say next week after another bloodtest result early next week,I'm hoping she'll leave me alone till the new year.

Take care everyone regards Phil.

User
Posted 17 Oct 2023 at 22:37
Sorry to hear this Phil truly mate. It’s just so testing and taxing mentally physically and emotionally , when you feel options are running low. Good luck next week and keep on doing what you’re doing , whatever feels right.
User
Posted 18 Oct 2023 at 08:44

Hi Chris 

Thanks for the response I'm hoping I'll be eligible for this olaparib,I don't know if anybody outthere has any experience with this drug.

Regards Phil 

User
Posted 18 Oct 2023 at 08:59

That’s tough news to hear Phil, all I can say is I hope you get whatever treatment you need to keep it at bay.

Good luck,

Derek

User
Posted 18 Oct 2023 at 09:55

Ditto what decho has said hope you will get all the treatment you need to help you going forward we are all behind you  gaz 👍

User
Posted 18 Oct 2023 at 11:59

At the end of the day, feeling well is much more important than sheer psa readings. Scan results showing no further disease progression despite psa rise are more than encouraging. 

User
Posted 18 Oct 2023 at 16:15

My husband was the same last year his psa was rising and scans showed no significant changes, he was put on Bicalutamide his last bloods 3 months ago there was a slight increase again his oncologist said we will wait and see what next results are before deciding if he’s going to change anything, his bloods are due Thursday and telephone appointment Wednesday 25th. It’s hard not to worry 

Ann

User
Posted 18 Oct 2023 at 21:04

Thanks for your responses guys I'll take them all on board,I'm in the lap of my oncologist next week will keep you informed of results.

Regards Phil 

User
Posted 25 Oct 2023 at 09:02

Hi guys

Big oncology appointment tomorrow and to be honest I'm bricking it,I know that after 14months enzalutamide is breaking down and psa is on the rise but scans show no further spread,I'm not a big fan of my oncologist I've never seen her face cause of wearing a mask and she's always looking at the screen,I know she has a difficult job and sees hundreds of people and she only sees me every 3 months but a little more tact would not go a miss,I'm hoping that olaparib is on the table rather than jumping head first into chemo

Will post again in next few days regards Phil 

User
Posted 25 Oct 2023 at 11:25

Best of luck Phil, hope you can get the treatment plan you prefer.

It’s really not great when there’s no relationship with your doctor….I know lots will say as long as they’re good at what they do, but for us it makes a huge difference. Positivity has a big role to play when going through all of this and if you’re not getting that and confidence from the ones looking after you then it’s easy to let that have a negative affect. 

Hope she’s having a very good day for you tomorrow 👍 x

 
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