Progressive Loss of appetite

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User

Posted 30 Jan 2021 at 12:45

P had a telephone appointment with the oncologist this week, who seemed to think things were going OK....but I'm worried. Over the past couple of weeks his appetite has gone right down, it's hard to think of anything he fancies to eat. He's wanting to re-mobilise after his spinal cord compression back in October, but most days he's too tired to even get out of the bed and into a chair....he moans because he doesn't get physio very often, but if he's as tired as that how can he hope to do any physio? I don't know if he's depressed (which would be hardly surprising in his situation) or if the cancer is progressing faster than we realise....if it's down to the medication (zoladex and enzalutamide) as the oncologist thinks....or could it be that his calcium level has risen further? He was prescribed vitamin D by the endocrinologist, because his level was very low, and I understand that can raise the calcium. He's due for blood tests on Tuesday, so maybe that will tell us.

Edited by member 30 Jan 2021 at 16:57 | Reason: Not specified

User

Posted 30 Jan 2021 at 16:59

I would be concerned as well. When you say he is in bed most of the time, is he sleeping most of that time as well? Is his appetite dropping because he is in a lot of pain?

I think if not already done so, now is the time to ask for a referral to macmillan or your local hospice. They are the experts in getting all the meds balanced so that he has the best quality of life. Community physio and / or occupational therapy should be available, if nothing else then to assess what support or equipment he needs .... he can't be in a normal bed much longer, for example, so the community team would assess whether he needs a medical grade bed to minimise the risk of bed sores, etc. The physio will also look at things like keeping his lungs healthy if he is laid down a lot of the time.

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

User

Posted 30 Jan 2021 at 19:06

He sleeps a fair bit, but not most of the time, and he's not in pain. He's already in/on a hospital bed, the OT has sorted various things and he gets physio from time to time. We have had contact with the hospice, but didn't think we were at that advanced a stage yet.....a lot of the time he feels fine apart from the fatigue, and is mostly fairly cheerful. He took an anti-nausea tablet earlier and has eaten a reasonable meal tonight.

User

Posted 30 Jan 2021 at 19:12

hi there

it seems like many diseases every person is different so I think consultants etc can only advise.

My dads cancer spread early last year (after 15 months approx of hormone therapy keeping his pc in check which seems is normal) and he got seriously ill (in bed 20 hours a day, hardly eating, dizzy, falling over etc)...he got offered the best drugs Abiraterone, which just made him more sick, so much so we did not think he would make Christmas 2020.

all the consultant could offer him in December was 4 shots of radiotherapy to help with pain (he indicated it would help for a month or so)....

fast forward nearly 2 months later and my dad is better than ever in last 6 months, can eat pretty much anything, no liquid morphine needed, walking further every day, swollen leg from lymph nodes gone back to normal...

we know the cancer is still there and will no doubt come back but for now it’s ok...

I can’t really advise how it will go for but neither can anyone... have hope and if the meds are not working for him then don’t be scared to say so.. what works for one certainly might not be the case.

Main message is have hope.... a positive attitude goes a long long way

User

Posted 30 Jan 2021 at 22:20

Hospices are not just for end of life care; many offer day centres, acupuncture, aromatherapy, massage and other holistic therapies as well as invaluable support and advice including on finances, etc.

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

User

Posted 31 Jan 2021 at 09:56

Yes, I know hospices do other stuff. We had a couple of visits from the outreach nurse, who did seem very downbeat and really depressed B, she seemed to want to talk about what he'd want "when the time came", and he wasn't ready to think about that. He seems bright enough this morning, and the physio is going to come at some point today.

User

Posted 09 Sep 2021 at 16:51

We're now 8 months further down the line, and P has been passed on to the palliative care team - the outreach nurse from the hospital is coming next Tuesday. Just after my last post, his calcium hit the threshold level for treatment, and they called him in for zoledronic acid treatment, which worked brilliantly - he was less tired and eating again almost straight away. But now he's sleepy again, and has no appetite - has just stopped feeling sick which we think was down to a course of antibiotics for a UTI, but his appetite is still low. I don't know if this is just the cancer progressing, or possibly calcium again - the GP is asking for blood tests (we've had none since June) so at least we'll find out. I guess I'm scared he's closer to end-of-life than we thought - though I veer between thinking he's at death's door and being a little more optimistic all the time.

User

Posted 09 Sep 2021 at 21:47

Hopefully the blood tests will show up something that is easily resolved - another infusion of zoledronic acid or possibly a blood transfusion. Men in advanced stages can become very anaemic so a shot of new blood can work wonders. Also, are you getting protein shakes or similar on prescription?

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

User

Posted 10 Sep 2021 at 09:45

We have Ensure drinks, which I can sometimes encourage him to have. Just hoping nothing untoward happens before the blood tests - I expect they'll be early next week.

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