Dad very breathless

User

Posted 16 Aug 2020 at 20:47

Hello

my dad (84) has been diagnosed metastatic prostate cancer in June this year with spread to lymph nodes and bones in pelvic area. He was diagnosed in 2018 with local prostate cancer and given hormone injections which have worked for last 18 months. His current psa is 145 but I don’t know past details but we have seen a big decline past 2 months.

he has been prescribed Abiraterone (with 10mg prednisone) but they waited 2 months to start this and we have seen a steep decline so not sure why the oncologist waited 2 months as he had only got weaker?! Anyway he has started a week ago but I think it may take a few weeks.

he is on various morphine based tablets so pain ok and sleeps well and is eating ok but he is so exhausted and breathless and can hardly walk 10 metres now!! He also looks really pale sometimes... I mentioned to my mum if he might have anaemia but she is adamant that no if that was the case this would be picked up via the blood tests? Would it be?

to date my dad has been very very fit and normally would work most of the day in garden and easily walk 2 hours+ per day... sadly now my dad can hardly walk 10 metres without becoming exhausted, breathless and dizzy!!

he does not have any underlying health issues. We know this is non curable (and now they say he is too weak for chemo but it was not 2 months ago) but it seems the breathlessness is making things really horrible for him.

so I guess my main question, is there anything that might help with the breathlessness?

If anyone can advise would really appreciate it

thank you & take care

anne

User

Posted 17 Aug 2020 at 00:19

Hi Anne, I think that you maybe only have part of your dad's story here - if the cancer has progressed from being contained (local) to being advanced (metastatic), the hormone injections stopped working long before the 18 months you have suggested here.

At this stage of your dad's disease, chemo does not treat the prostate cancer - all it can do is reduce symptoms and improve quality of life, so he and the doctors will have had to balance the very real risks of chemo against the possibly very small benefit it would have offered, even two months ago.

Anaemia may not be automatically tested with his other bloods - ask the GP practice to look at his recent results to see whether it has been included.

The breathlessness and fatigue are known side effects of both the HT and the abiraterone but they could also be an indicator of heart failure so I think it would be wise to call the oncology nurse (if one has been allocated to your dad), the consultant's secretary and / or the GP tomorrow to get advice.

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

User

Posted 17 Aug 2020 at 01:05

hello

many thanks for your reply.

its just under 2 years since he started the injections so it might his PC was worse then than he told us!

I think it was around February this year after blood tests that something was amiss and then during lockdown my dad had symptoms, pelvic pain, fatigue, breathlessness etc and following various scans and an appointment with his consultant early June was told it had spread into pelvic bones and lymph nodes and he was given around 2 years.

he just seems to gone down hill rapidly this past month and cannot walk anywhere without being exhausted and breathless and has to go to bed frequently which is a shame as he cannot do anything or go anywhere . Thankfully he his eating 3 small meals per day...

I will ask my mum to ask the GP about the anaemia as he has his first of fortnightly blood test this week and also has an appointment with the oncology clinic too.

He is one week into starting Abiraterone so we are hoping this will help for a while though understand it just provides a bit more time.

Its a total **** disease... slowly having to watch your loved one fade away

User

Posted 17 Aug 2020 at 12:00

Anne my dad hid the worst of his diagnosis from us. He wanted to protect his girls (we are all in our fifties!). He became anaemic which made him breathless and lethargic. A blood transfusion helped so worth exploring.

You're right, it's an awful disease.

User

Posted 17 Aug 2020 at 12:18

Hi Scabbycat

Thank you for replying and your advise... I think this may be the case with my dad too, he's not outwardly emotional and for the past 2 years he never even took my mum to appointments!

I have mentioned the possible anaemia to my mum but she does not think so as she has had anaemia for years and knows the symptoms but I think there are loads of different types of anaemia?

My dad is extremely breathless (and tired) and sometimes appears very white in the face which has seriously got worse this past month as in he can hardly walk due to becoming breathless, taking a shower is very hard and involves him going back to bed afterwards - he is getting blood tests every 2 weeks as he started Abiraterone and under the care now of a Macmillan nurse so I will mention to them again to ask...

The problem is both parents are extremely stubborn and refuse most offers of help!

User

Posted 17 Aug 2020 at 12:54

Originally Posted by: Online Community Member

The problem is both parents are extremely stubborn and refuse most offers of help!

My wife and I looked after her dad for his last 18 months (around 2007) when he had advanced prostate cancer (one of the reasons I got tested at 50 - glad I did). He had redeeming qualities, but was a very stubborn and awkward man and we came to the conclusion that "you can only help people to the extent they will let you". It is very hard though. 😫

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 17 Aug 2020 at 13:15

Yes I think my dad just wants to protect us all and both my parents are so kind and never ask for anything or expect anything, he's not awkward but he is a proud and once extremely fit man - its been difficult during lockdown when he got told the cancer had spread to bones/lymph nodes and then referred to oncologist, whom he has never met! My dad is hard of hearing and does not use the internet so not comfortable with a video call (though that did not work anyway so it was just a telephone call!) and really would benefit from face to face.

We are hoping the Abiraterone kick in soon ... he seems to be declining so fast and its very scary and hard to watch.

xxx

User

Posted 22 Aug 2020 at 18:35

Hello all

Just an update on my dad, he’s now been on Abiraterone for 2 weeks and had blood tests ... psa is down from 165 to 101 so cancer nurse is pleased with this.

He is not feeling any better yet (main issue is extreme tiredness) but the nurse is hoping he will in next coming weeks. Nurse confirmed his lungs, liver, kidney, heart tests are all fine.

Does anyone have any experience or advise on Abiraterone please? Sadly we know it’s advanced but we hope he can have another year or 2 with a bit more energy.

best

anne

User

Posted 22 Aug 2020 at 20:26

My husband did well on arberatitone for almost two years until the psa started to rise again. He had few side effects apart from leg aches and fatigue up hills.

I hope your Dad does well - others did well for longer.

Edited by member 23 Aug 2020 at 12:09 | Reason: Not specified

User

Posted 22 Aug 2020 at 21:00

Hi Gillyflower

Many thanks for taking your time to reply. I recently followed your story and very sad for your loss.

Here’s hoping my dad gets just a bit more time (suddenly time becomes so precious doesn’t it?!). Regardless of age it’s never going to easy losing a parent... cancer is a slow nasty disease and I worry most about my mum, it’s so hard for the wife/husband/partner.

best wishes to us all

anne

xxx

User

Posted 23 Aug 2020 at 12:14

I hope you have a lot more time - my children are coming to terms with losing their Dad and are fundraising for prostate cancer UK in the hope that one day the cancer can be cured or kept at bay for much longer.

I am still reeling from the shock of losing my guy so suddenly in the end. My life is so empty without him but I am trying to stay strong as he did. His courage humbled me.

Be strong together and just keep on loving your Dad to keep him upbeat. Xx

Edited by member 23 Aug 2020 at 12:15 | Reason: Not specified

User

Posted 23 Aug 2020 at 17:08

Hello Gillyflower

thank you for your response.

That’s really nice your children are fundraising and will give them a focus...hopefully new drugs are being developed all the time and we can just hope that one day there will be a cure.

I can’t begin to understand how you must feel and I totally get the courage comment... my dad never complains, try’s to smile even when it’s clear he is feeling absolutely awful... I cannot imagine being so brave without complaint. I see and hear already my mum seems so sad without much hope...I hope she is not keeping things from us... its so sad so many families are going through this all the time.

My dad had to go to hospital last week as one of his legs (the one where most of the lymph nodes are affected) swelled up really bad - the gave him blood thinning tablets (more pills!!) which seemed to have helped take the swelling down.

we are hoping that the Abiraterone helps make him feel better for a while as at the moment he is getting more tired, sick and exhausted.

take care

xxx

User

Posted 31 Aug 2020 at 22:00

Hello there

It’s been nearly 4 weeks now since my dad started Abiraterone.

Unfortunately he has deteriorated rapidly past week or so despite big drop in psa first 2 weeks (160 to 101).

Not sure if this is the cancer advancing or side effects of Abiraterone but basically within 2 weeks he is struggling to move, spending most of day in bed etc.

Cancer nurse coming tomorrow so hopefully get some answers... sadly it feels like the 2 months it took the oncologist to prescribe Abiraterone for my dad (it was approved start of June but not started end of July) has taken away that extra chance of time... my dad 2 months was a lot stronger then and now I think he is too weak. The 10mg of prednisone prescribed start of June for 2 months is a pretty low dose and was certainly not enough to make him stronger... quite the opposite as he has just weaker and weaker. It’s not the time perhaps to question this as things can’t change now but I certainly want an explanation.

So we have gone from being told in June up to 2 years to now which could be weeks...it’s all very shocking and hard to get your head around.

Will be strong for both mum and dad but just so sad in this rapid decline.

User

Posted 01 Sep 2020 at 09:47

Hi Anne, my cancer journey started a couple of years ago, fortunately mine is probably curable. From what I have read on this forum, the symptoms can accelerate rapidly towards the end. I know two years life had been suggested, but maybe they were wrong. The delay between arbiterone being recommended and finally delivered seems unusual, but covid is delaying many things.

I think with your dad being 84 you may have to accept that he hasn't got long left.

Of course this may be a temporary set back, and he may respond to treatment, but once one gets to the mid eighties you can't expect a long future.

Dave

User

Posted 01 Sep 2020 at 10:05

Hi Dave

Many thanks for replying and your advice. I am really glad to hear your cancer is likely curable - it seems the key is getting it early.

Sadly, I think all our family realise in our hearts that this coming to the end but it’s still so sad and hard to accept. It’s our first experience of cancer in the family.

It is true my dad is 84 and he has enjoyed a long full life with great health and fitness until now and he has certainly been everywhere he wanted to go and done everything he wanted - I know many people are not so lucky and don’t get so much time.

Just have to stay strong and be there for them and hope.

Anne

xxx

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