Loss of appetite

Hi Qwerty, not sure your dad's cancer is ever truly under control - what was his last PSA? Did it drop back down from the last rise?

You have worried before about his appetitie and it does seem that in your case how much he is or isn't eating becomes an indicator of how well the treatment is working. Add to that the fact that he is on some pretty serious medication. On the other hand, lots of people find their appetite reduces when they get to his age. Old people simply seem to need less food and less sleep.

If you are concerned, give the nurse specialist a call.

hi qwerty
is it just dad eating less at meal times or not wanting meals, I am eating less at meals than I ever did but it doesn't seem to stop the weight gain, gone from 9.5 to 10.8 stone
have been getting more hip pain myself but dr seems to think its bone pain, waiting on results of x ray and will take it from their

regards
nidge

Thanks Lyneyre, I think I'm feeling more pleased because I already knew really that the arbi wasn't working and I was so scared about what the scans would reveal and that we would have no options left. Had worked myself into quite a state (not that anyone else would have known!) and was expecting the worst so feeling a little release of pressure tonight. Thanks for the further info about the stilbestrol side effects, all noted.

Edited by member 22 Apr 2016 at 21:11  | Reason: Not specified

I think if you haven't already done so, it would be a good idea to get a referral to the local Macmillan nurse or hospice. Hospital oncology teams are usually great at doing what they specialise in but are not always so good at managing pain relief etc. Hospices and palliative care services are the experts in this - finding a balance between pain-killing and not being completely zonked out is a very fine balance for some cancer patients.

Also, if not already done, ask about financial support. If a doctor is prepared to say that dad is moving in to the later stages, he (and you or mum / other family members) may be entitled to finances to help buy or hire equipment to make dad more comfortable and to keep up his level of independence in some way, and/or to pay for additional care at home if that becomes necessary. There will also at some point be an assessment done to see what services the local authority and health service need to provide. I think the financial support is for people who are expected to live less than 12 months (or it could be 6 months, I have forgotten) and that's not to say I think your dad is in that boat but if the doctor says so and then dad outlives the estimate, he will have been more comfortable along the way.

Have you had those difficult conversations about dad's preferences? Easier said than done but he may want to talk about things like hospice care v being at home and stuff like that. Be open to the conversation if he tries; when a loved one starts to say something like that, it is sometimes too easy to bat the conversation away (because we are frightened or sad or don't want them to be sad) and then regret it later.

Having said all that, the increased pain may simply be down to the tumours objecting to a new treatment and trying to fight back. It happens with chemo sometimes as well.

Edited by member 26 Apr 2016 at 00:26  | Reason: Not specified

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.

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?