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Loss of appetite

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User

Posted 30 May 2016 at 15:22

So sorry to hear this Qwerty.

I hope the combined knowledge of District, Macmillan and GP can make your dad more comfortable

We can't control the winds - but we can adjust our sails

User

Posted 02 Jun 2016 at 15:55

A gp has visited dad a couple of times now and told us that he feels dad is frail and declining rapidly. He has spoken about a 'just in case' box and broached the DNR question with us. Dad has definitely declined and the stilbestrol has not had the effect we so hoped for. He is losing a lot more weight as his appetite is so small. He is still independently mobile, managing small meals and up and dressed each day although only really up to watch some tele and read his paper. But still very much 'with it'. His last scans 4 weeks ago showed little change since the previous lot and neither the consultant nor cancer nurse specialist indicated at that time that things were as dire as the gp has now very explicitly made clear he thinks they are. Have felt terrible since these conversations. I mean I don't have my head in the sand and know that there will be no miracle but I feel like some hope is essential to deal with this and that has very been much extinguished for now. Any thoughts?

User

Posted 03 Jun 2016 at 00:35

Sorry to read this qwerty,

Just wanted to say thinking of you and your dad.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 03 Jun 2016 at 01:13

Originally Posted by: Online Community Member

Hi,

"thoughts" you asked about?

your dad may or may not know, and understand the reality of his situation/prognosis?

I see that there is "hope" that you are looking for, in that Dad may be managed to be pain free for the rest of his time, however long that may be.

This aim may not be in line with your hopes and aspirations, but may be more realistic for your Dad.

This is a situation we may all have to face at some point, sadly.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 03 Jun 2016 at 07:11

Qwerty, so sad that you are now at this stage with your dad. The best for him now is to be pain free and spend as much time with those that he loves to make the precious memories for all of you.

Stay strong for him and make sure you get the best care you can. My thoughts are with you.

Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 04 Jun 2016 at 14:53

Some weeks ago I arranged a trial of a mini clubman for my mum. Dad has been looking forward to this so we pressed ahead with it today and him and me drove across town to collect it and then back home with it for a couple of days. I was apprehensive but I think it did him good and he said he enjoyed the run, luckily sun was shining too. I'm not sure the the gp who made a house call earlier in the week would have approved had he seen us but it was nice to be out and about with dad. I feel like we have all been in limbo land the last few weeks just waiting but I don't know what for.

User

Posted 07 Jun 2016 at 23:30

Just a little update. Dad has been on dexamethasone for a week now and they do appear to be helping him. He is eating better - managing cereal for breakfast, small lunch of something like biscuits and cheese and a better tea of perhaps shepherds pie, fish (albeit a smaller portion than I would like) or the like, followed by a pudding. He is moving around more easily also. He takes ibuprofen 3 x per day and has declined anything stronger and insists on describing 'discomfort' rather than pain. He has been supplied with a couple of nhs cushions and I obtained a couple online so he changes between them but none is really enabling him to sit terribly comfortably - has anybody found anything else any help with this? as I posted before, stilboestrol was stopped as he was not feeling any better but now I worry it needed longer to work. Dad is still on firmagon injections but no other anti cancer medicines. He was on arbiratone from Jan to April but it was stopped due to rising psa. Initially, the firmagon brought his psa down from in the 200s to below one within one month but after 3 months psa was on the rise. I'm so very upset the initial extremely positive response was so shortlived. Has anyone else had success with a hormone therapy after another type has failed? Or if one fails are you classed as hormone resistant? I have read about casodex and Lupron but don't know how widely they are used or if they are worth trying when another hormone therapy has failed. Thank you for listening. It helps to write things down and know there are other people around. And thank you to all who post about their own journeys, I find it very helpful to read how other people are getting on.

Best wishes to all.

User

Posted 08 Jun 2016 at 01:13

Hi Qwerty, I am not sure why you have said 'but no other anti-cancer medicine' - have I understood correctly that he is still on Firmagon and dexa has also been added?

There are some men who become hormone refractory very quickly and it seems dad is one of them as he has not had great success with any of the different ones he has had. Some consultants would consider adding bicalutimide to see whether that has an impact but I suspect your dad is too far down the line for this.

I don't think you have ever posted exactly which prostate cancer your dad was diagnosed with. If he had a biopsy at the start of the journey, you should be able to find out whether he was diagnosed with the most common type (adenocarcinoma) or whether he has one of the rarer types that tend not to repond to hormone therapies.

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

User

Posted 08 Jun 2016 at 15:05

Hi Lyn, thank you for your reply. dad has never had a biopsy so we don't what that might have told us. Yes, dad continues on firmagon but this has not held his psa down since December and yes, he is on dexamethasone but I understand this only has an influence on the smaller amount of testosterone produced by the adrenal glands. I know that firmagon is a LHRH antagonist and I'm wondering if the agonist types can be beneficial if the antagonists are no longer having the required effect?

User

Posted 08 Jun 2016 at 17:57

They can often do so but I have never come across bicalutimide being added when someone has moved into palliative care. Worth phoning the nurse to ask though, unless he has an onco appointment coming up soon?

It is unfortunate that dad was diagnosed too late for a biopsy; it would have been useful to know if he had one of the rare types and might have saved time wasted in HT that failed. Probably not fair to put him through a biopsy now though.

Stay brave x

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

User

Posted 08 Jun 2016 at 18:17

No, certainly can't see the point of a biopsy at this stage so would not be in favour of that at all. Onco appointment is approaching on the 17th. Yes, the gp has talked about going into palliative care but then we only called him out because dad was feeling nauseous and his mobility had declined and we thought he may help. By his own admission he does not know about many of the drugs used in prostate cancer and nor has he had any conversations with the oncologist. I always expected the oncologist would be one to tell us the options at each stage and if all options had been exhausted. The gp had never met dad, or any of the family, prior to his visit and so that is another drawback I feel.

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