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The million dollar question

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User
Posted 18 Jul 2024 at 08:24

Hi guys


Its update time....10th and final Docetaxel chemo complete yesterday,usual effects to kick in the next couple of 3 days.PSA down again to 9.7,not as great a fall as the last few months readings but I've been told that the slower it falls the longer it lasts,maybe someone could confirm that,but it's all good for now,onco and CT scans to come over the next few months,so after 6 months of chemo and a 2 month window of opportunity I'm off to book a few holidays abroad,dam the expense,me and wife deserve it.


Stay safe and be strong all regards Phil 


 


 

User
Posted 18 Jul 2024 at 08:28

Well done and good news your PSA has reduced. My goodness you certainly do deserve a treat following all that!


Are you on your hormone treatment only now?


Hope you and your wife have a very lovely time.

Mrs MAS

User
Posted 18 Jul 2024 at 10:10

That’s great Phil, so pleased for you. 10 sessions must seem like forever . I have my 4th next week. 

Get out and book those holidays. You both definitely deserve it. 


Why do you say 2 month window of opportunity? Is that how long before you see your onco? 


Let’s hope it’s a long, long while now before anything starts to stir again. 


Take care 


Phil

User
Posted 18 Jul 2024 at 11:00

Hi Mrs Mas


Thanks for the feed back,yes for now it's 3 monthly prostap injections which I've been on for 18 months,there weaning me off the steroids over the next month and I daily take bone tablets.


Hi goalhanger 


Thanks for your comments,onco chemist appointment and CT scan August,onco appointment September,for holiday insurance I'm classed as terminal so as you can imagine is tough but all clear do it but not an annual insurance,is very complicated,I'm hoping my PSA doesn't rise to quickly but with this disease I've learnt you can't plan to far ahead.


Regards Phil 


 

User
Posted 22 Jul 2024 at 11:58

Hi Phil. 
How’s the holiday planning going? Did you sort out insurance? Mines run out so I will need to talk to them regarding changed treatment etc. 


Did you Onco actually say to you you are terminal?? . I suspect I am also classified as terminal but can’t imagine my Consultant actually saying that to me. Does it get you any benefits by being classified as such?


Now some questions about your chemo journey if that’s ok. How much did you energy levels drop as I can barely walk 100yds especially if it’s an incline. Mostly feel it in my legs. Also I suppose linked is that I get breathless quickly now. I fell over going up the steps in the stands yesterday at Brands Hatch. Scraped all my knee and felt just a little embarrassed. 


I’ve also just piled the pounds on, the obvious hamster face and also my belly. I’m taking peppermint capsules for the belly as I also get pains in the left hand side stomach area. Stomach also uncomfortable as it feels really bloated. Plus of course most of my clothes don’t fit anymore… 


I may start a new thread on Chemo Side effects … 


Cheers. 


Phil

User
Posted 22 Jul 2024 at 17:18

Hi Phil


Got a few trips in mind over the next few months,all clear do insurance but at a price,onco and specialist nurses class me as terminal for holiday insurance purposes.


Fatigue comes and goes 4 days after my 10th chemo I've been on my e/bike for just over an hour and done some light weights in the garage,yes I've piled the pounds on since starting my sessions and gone up a jean size,yes I also have the round face syndrome my biggest headache is the hot sweats during the night I haven't had a decent nights sleep this year but I'll pay that price if it keeps the big c away for a bit.


Regards Phil 

User
Posted 28 Jul 2024 at 20:40

Hi Phil


Hope you do manage a few trips in between what sounds like quite gruelling treatment.


My husband has advanced prostate cancer and I have had long conversations with several specialist insurance companies. I was told that advanced prostate cancer is classed as incurable but only terminal when no further treatment is possible. I did question the difference! Hope that is not the case for you but if you are having chemo then that is treatment isn’t it or am I wrong? we are fairly new to all this so not very knowledgable about treatments. we are still wanting to continue travelling and have found that insurancewith.com do very reasonable rates for a single trip policy. My husband paid £3.5k for an annual policy when he was first diagnosed a year ago but we were in a panic as we had a cruise a week later! You can’t do a cruise without adequate medical cover. If you have to be airlifted off a ship it can cost £100K! Cant do that every year so single trip is the way to go.


Good luck!


Linda


 

User
Posted 29 Jul 2024 at 08:52

Hi Linda


Insure and go will insure you even during chemo as long as your not end of life (6 months to live)but that will be at a price.


I have finished my chemo(for now)so not receiving treatment,so my quote was cheaper,in there eyes they do not class me as terminal so I could get an annual insurance (which was a cheaper option for me)I paid just shy of 2K for an annual worldwide insurance.


Regards Phil 


 

User
Posted 29 Jul 2024 at 10:16

Morning guys.


I will be trying to get my insurance sorted as soon as my chemo finishes end of November. Hoping to get away in the new year somewhere. Got our Avios to use up plus 2 companion vouchers…!


In the meantime we have a week down in Ilfracombe in September for a wedding plus a visit to Brother in law in Derbyshire sometime. Hoping I get to grips with this fatigue as it’s really knocking me out at the moment and could spoil anytime away…


Take care, enjoy these warm days we’re having at the moment. I’m lazing in the summerhouse while plumbers fit new rads downstairs. Just keeping out of the way 😁.


Phil


 

User
Posted 29 Jul 2024 at 14:27

That is not bad for an annual policy. It is a time consuming and depressing exercise getting insurance as many companies that say they cover cancer actually don’t for advanced prostate cancer. My husband is on hormone treatment and having 4 weeks of radiotherapy to the prostate starting Thursday. We have another cruise in 6 weeks and just hope he doesn’t have any adverse effects and we can still go. We will have to tell insurance company but oncologist thinks he will be fine to travel. He needs things to look forward and to. 
I take it from what you say that once you are on chemo you don’t have any treatment at all between courses? We know so little but my husband doesn’t want to know - just taking each day at a time.

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 

 
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