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A daughter who wants to be prepared for what's next....

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User
Posted 11 Nov 2020 at 14:37

Hi all!

I've only joined up today but have actively been using this website for over a decade now and even managed to do a bit of fundraising back in June for the #MoveForMen campaign raising almost £2000 for this much need charity.

The reason I signed up to the community today is that my brave, determined dad has just had news today that his prostate cancer has spread further throughout the bones (as we expected after 2 recent chemotherapy treatments failed) and now in to the liver.

As you can imagine he is trying to remain positive and is even beginning a trial drug next week (though he knows he's more than likely playing lab rat more than it helping him) so I don't want to ask him if he enquired re a timeline from his consultant.  In September when he was just about to embark on chemo type no.2 his consultant had vaguely advised that he had not envisaged he would be at this stage so quickly, having had 12 years of treatment where his body has always reacted well, but that the writing was on the wall now.

I too, like my dad, have a very positive mental attitude towards life, and, indeed, his whole prostate cancer journey but I am also a realist and prefer to know than be kept in the dark so I was just wondering can any family relatives here advise if they have gone through a similar pattern....and is it likely he will reach his 70th birthday next September?

We are an extremely close family but I feel he struggles to tell us the really tough stuff as he has always been our protector and wants to continue to carry more of the burden than he needs to.

Thank you, Claire x

User
Posted 11 Nov 2020 at 16:35

No one can tell you that Clairest and I would be very surprised if the onco was able to give anything other than a guesstimate to your dad. It also depends on which treatments he has had which have then failed, apart from the chemo, and which trial he is on.

If the oncologist believes that dad has less than 6 months to live, he will be entitled to claim attendance allowance - some GPs, oncos or CNS will sign the form if they believe the patient has less than 12 months. The benefit is not means tested and the money can be used to pay for equipment that will make his life easier and / or for nursing / domiciliary care if he needs it further down the line.

https://www.gov.uk/terminal-illness-benefits 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Nov 2020 at 09:57
Dear Claire

Thank you so much for your kind words and sorry we are both facing a similar worrying situation.

My dad was also an active fit golfer until last year...he is 84 so enjoyed a healthy and full life until prostate cancer arrived! I see your dad is a lot younger so really hope the new trial can help him.

Wishing your dad & your family good results and hopefully many happy years to come.

Take care

Anne

Xx

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User
Posted 11 Nov 2020 at 16:35

No one can tell you that Clairest and I would be very surprised if the onco was able to give anything other than a guesstimate to your dad. It also depends on which treatments he has had which have then failed, apart from the chemo, and which trial he is on.

If the oncologist believes that dad has less than 6 months to live, he will be entitled to claim attendance allowance - some GPs, oncos or CNS will sign the form if they believe the patient has less than 12 months. The benefit is not means tested and the money can be used to pay for equipment that will make his life easier and / or for nursing / domiciliary care if he needs it further down the line.

https://www.gov.uk/terminal-illness-benefits 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Nov 2020 at 17:25

Thanks for that info Lyn...his trial will be CCS 1477....on it's own I believe as he had enzulatamide but it stopped working after a while.  He is just taking steroids alongside this to help ease the pain in the bones.  They're also talking of giving him a low dosage blast of radiotherapy on the right femur to see if they can try and improve mobility as he's extremely fatigued and was a very active golfer a year ago...though will only give this if doesn't affect the trial....they'll decide Monday when he goes in to begin trial.

He didn't even ask for his Psa result as he feels that it's irrelevant now.  His original Gleason score back in 2008 at diagnosis was high, at 8.5.

A few weeks ago the Psa had doubled to 586 (and had done so within 6 weeks). This was the reason the cabazitaxel chemo was stopped, after the docetaxel chemotherapy sessions had ceased to do anything after 4 doses.

He's understandably very concerned at the results of the ct scan today as his biggest fear has been hitting a major organ...though is it a small mercy that it's gone for the liver instead of the lungs??!

Thanks again for your link etc....just need to keep our positive energy going right now and hope the trial slows progress a little.  Just wish covid would bugger off too so I could give him hugs again and we could spend more time together! 😪

User
Posted 11 Nov 2020 at 21:56

Hi Claire

sorry to hear about your dad.. it’s a really horrible place to be....and so so worrying for you all.

we are in a similar situation with my dads advanced prostate cancer which was diagnosed 2 years ago (though now I realise my dad protected us with the real facts) and he was advised in May this year it had spread to lymph nodes and bones. My dad has seriously deteriorated the past 5 months and is now so weak can hardly walk...he has his 6 month scan next week but going by symptoms can’t see it being good news. It seems by his blood tests they were aware the hormone injections had stopped working in February 2020 but he only got started on Abiraterone end of July...too late for my dad as the cancer has been spreading.. maybe it would not have changed things but i suspect the 3 month lapse of nothing was due to the usual Covid excuse.

It seems every mans journey is completely different and what works for some does not work for others...I can only advise you speak direct to his consultant as they will have specifics and fingers crossed there will be some treatment for him.. there are good stories! But push the consultants and don’t be fobbed off with Covid excuses.

My dad got fast tracked via the Macmillan nurse in August for attendance allowance (bless him he did not want it...just to feel a little better!) so assume he comes under the 6 month terminal status.

best wishes for you & your family 

anne

xx

User
Posted 12 Nov 2020 at 21:10

Oh Anne....so sorry to hear of your dad's quick progression from diagnosis to where he is at now....as you suggest damn Covid has stalled so much since March, and continues to, which makes things so much harder right now as even the simple things like a meal out together isn't even possible with lockdowns.....it really makes me want to scream!

Big hugs to you all with whatever next week's appointment brings, Claire xx

 

User
Posted 13 Nov 2020 at 09:57
Dear Claire

Thank you so much for your kind words and sorry we are both facing a similar worrying situation.

My dad was also an active fit golfer until last year...he is 84 so enjoyed a healthy and full life until prostate cancer arrived! I see your dad is a lot younger so really hope the new trial can help him.

Wishing your dad & your family good results and hopefully many happy years to come.

Take care

Anne

Xx

 
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