Mum's CA125 level now reduced to 175....

[jazzmum]

My 73 year old mother (fit and very healthy until November 2011) is still in the hospice after chemo being abandoned half way through first round. She was admitted to the hospice after 7 weeks low dose chemo (Carbo/Taxol) as an inpatient in hospital - with severe vomiting, dehydration, blood clot, ascites draining - all in all a bit of a nightmare time over Christmas and New Year.

We were told in mid-January that she only had a couple of weeks to live - she deteriorated into February and then we were told it was a matter of hours as her swallowing reflex had gone, she was not really conscious etc. After about 3 days she gradually started to come round and improve. Fast forward to today - 1st May - the palliative team don't seem to know what to do with her - she's been in the hospice for three and a half months, is "well" but is unable to move from the chest down - they say it's peripheral myopathy? The consultant took blood last week and told us today that her CA125 level has gone down from 700 in January to 175; there is no word of them trying to get her rehabilitated.

It seems to just be that she's been moved on from the oncology team to the palliative team very early on in her treatment - but there's no sign of them doing anything about moving her back....

She's eating well, has good colour, her hair has started to come back in, no sign of any more ascites.....

She's very frustrated as she feels fine but just can't move.......

Anyone else experienced this paralysis with peripheral myopathy?

[Hidden]

I think this is one for the experts. Please try the Ovacome help line 0845 371 0554. Beyond that, talk to the oncologist who was treating your mother, and the palliative care team. It may be she needs physio. It may be, sadly, that little can be done but you do need to know the answers, for your mother's sake and yours.

I wish yuo both all the best. Cx

[SueLR]

Hi Jazzmum,

I remember you posting before, and your Mum's situation made me angry then. In addition to being on this website because of I've joined this OC club, I am an Occupational Therapist. We provide OT services to both Palliative Care teams in hospital and our local Hospice, and it makes me angry that it doesn't seem your Mum has had these resources. OTs, along with physios, can look at rehabilitation even for people in late stage disease, if that is what they want. Also, there is an initiative which I'd assumed was national, about people's preferred place of death, and I apologise if this is too blunt and understand your Mum is doing well now, but our OTs provide equipment to help people return home if that is their wish, even if they have a high level of disability such as your Mum appears to, and people should be able to access rehab even if they go home. I appreciate it isn't everyone's wish and it is a very individual decision.

You and your Mum appear to be having a raw deal here and don't appear to have access to the facilities which you could have if you lived in another area.

I would suggest to talk to the team about what help is available, and if not, why not. If you, your Mum and your family know what you all want in terms of where she stays, you should tell the team and prod them along to working towards that. There may be local rehab facilities which would be appropriate even with her diagnosis.

Please let me know if you think I can be of any help or support. I hope I haven't said anything upsetting, and wish you and your Mum the very best.

Warmest wishes

Sue

x

[jazzmum]

Oncologist has replied to the hospice and they've started mum on Letrozole this morning; they are also now going to try to get her some physio and gradually out of bed into a chair, then hopefully a wheelchair..... will keep everyone posted with progress!