Hi all, I have posted about my mum before, she was diagnosed with liver secondaries a few weeks ago but was only due to start chemo yesterday as they couldn’t fit her in before. Between the appointment to discuss treatment and the appointment to start the treatment (1 week) my mum got so ill that we were constantly terrified that she wouldn’t make the appointment, she hardly woke up and was too weak even to sit up. We tried to get help from the oncologist, my dad and sister spoke to her on the phone, I tried the chemo unit at the hospital and spoke to a critical cancer care nurse and she got a doctor to call me, she said that my mum may need the fluid drained from her stomach but they couldn’t fit her in and finally we tried the hospice and they told us to keep her appointment yesterday which she did. At this appointment they kept her in and said she would be there for at least a few days. They did seem very shocked at her condition, she is now on an oncology ward and seems more comfortable there at least. She is so so ill but still hasn’t had any treatment for the cancer.
Does this mean she also has mets in her bones? Has anyone else had this before? I feel so bad for my mum, she was so ill and confused and I think they’ll go round and tell her this today and I don’t know if she’ll be able to take it in.
Thanks for reading.
Julie x
Hi Julie
Really sorry to hear about your mother’s condition and the difficulty in getting treatment. Mets in the bones usually cause a great deal of pain - is you mother in pain as well as with liver problems? There is chemo that is in tablet form as well as others that need nursing/cannula IV administration - I’ve had FEC that was IV and helped my liver mets and now am on the tablets Capecitabine that I know others on this forum have been given successfully for liver mets - the tablets don’t take up much medical time so it might be worth asking about them as well as the IV treatment.
If she is on the oncology ward then she should see a doctor today so hoping this brings you some idea of possible treatments and start times.
Thinking of you and your family
xx
Thank you for replying, she hasn’t had any bone pain that she’s mentioned, the pain she’s had seems to have been in and around her liver, her stomach looks massive now so I don’t know if they’ll drain that. She was supposed to start the Capecitabine yesterday but that’s been delayed now. She had FEC with her primary diagnosis so I think that’s off the menu now.
They had sent my mum an appointment for a bone scan this Friday but my sister phoned them to cancel it and the lady said she would try to get it done while my mum was in hospital so I guess we’ll know soon, although I won’t hold my breath. Do you know if bone mets would show up on a CT scan or xray? She’s had loads of both recently. I suppose she needs a whole body one anyway though.
I’ll go to the hospital later on and find out what the doctor thinks I hope. It’s quite a long way away from us on a train so we’re taking turns.
Thank you for replying
Julie x
Hi again Julie, after posting on your other thread last week I wondered how your Mum was over the weekend. Bone mets can cause hypercalcaemia and hypercalcaemia does make you feel very confused and very ill.
I hope now your Mum is in hospital the doctors can get everything under control…Take Care, both of you…xx
Thank you Belinda, I’m at the hospital now, she’s still asleep. They said her calcium levels were as high as they could be without actually being in a coma. Apparently the normal is level is 2 and hers was 4 but is now 3.5, they said it’s going in the right direction but not as quickly as they’d like. She is really uncomfortable because she still has the massive stomach. Hopefully tomorrow will see more of an improvement. Last week I thought we’d tried all we could to get someone to see her, the oncologist actually phoned in the end after we’d badgered them so much but now I realise we should have taken her to a&e. This is dreadful but a relief that she’s here and not at home. Julie x
Hi Julie, I’m so sorry to hear you have had to badger and battle to get help for your Mum. Thank goodness they are now treating your Mum’s hypercalcaemia. I have checks taken every chemo cycle as I have bone mets. I do hope things now start to improve for your Mum.
Take Care…xx
Hi Julie,
Sorry I haven’t been on the site for a few days so have only just caught up with your posts.
I really feel for you Julie, it shouldn’t have to be such a battle to get your Mum the care she deserves. I know how hard it is seeing someone you love so much in discomfort & not being cared for in the way you want. I hope so much she is now more comfortable & you have been able to speak to someone about her care. If you haven’t keep hassling them until they do speak with you.
I think of you often & am sending an even bigger cyber hug than before.
Love, Dugsy xxx
Ah thank you so much, I think a lot of the problem is you always see or speak to different people. I’ve just got home, I was at the hospital for about two hours, my mum was awake for about two minutes. The nurse said that once her enzymes are right she might improve very quickly but to be honest I don’t trust anything they say anymore.
I feel like I’ve absolutely had enough of this roller coaster of hope and devastation but I’m sure you have all felt the same. The trouble is there is no ‘get off’ button and the only option is really to hope and believe.
Feeling obviously down, sorry.
Julie x
No need to apologise, it’s beenreally tough for you. TRY to get a good nights sleep. Hope things have improved when you see your Mum tomorrow.
Hugs, Julie x
Thanks Julie, the hospital have just phoned to say there is no improvement today and ‘the team’ are going to review this afternoon. They said they’re giving her loads of fluids but she’s not producing much urine. I just don’t know anymore, it’s just gutting to see her like this or to imagine a way back from here.
Sorry, i know I’m depressing you again, I’ll be going back to visit again soon and I just dread it.
I hope you’re having better days.
Julie x
Hi Julie
Just seen this thread about your mum, how heartbreaking for all of you. I have liver mets that initially responded well to Capecitabine, but when it stopped working it took me weeks to convince my oncologist that it had stopped. Like your mum, I had no effective treatment for a couple of months and my tummy was very swollen and all I did was sleep or cry with the pain of the enlarged liver. I do hope the medical team caring for your mum help her really soon. Capecitqbine is an oral chemo and it may well help her. I am now on a combination of Lapatinib and Capecitabine which is currently holding things at bay. hope thing improve really soon for your mum.
Cat 
Hi Cat,
They haven’t even started on the Capecitabine yet because of the hypercalcaemia, she is basically unconscious. Did they ever drain your stomach? Why wouldn’t they listen to you? This has been going on with my mum since February, it all feels too late now. I’m pleased your new treatment is working, do you feel well on it?
Thank you for replying.
Julie x
I’m so sorry to hear this Julie…it reminds me of how we battled for my Mum. xx
Hi Belinda, I’ve just got home from the hospital, my dad asked what were the chances of him being able to take my mum home and she told him less than 5%.
I’m gutted as I know you will understand, I hate seeing her there looking so vulnerable.
I don’t know what else to say really, I feel so so sad for us all.
Thank you for remembering us.
Julie x
Hi Julie
Just a quick message to say I’m thinking of you and your family. Hope your mum had a reasonable night and is bring well cared for.
Cat xx
Hi Julie,
Just wondering how things are today? Hope your Mum is comfortable & that you & your Dad are looking after each other.
Love,
Dugsy x
Julie
I have just been reading your posts here and you are very much in my thoughts.
Esbee x
Hi Julie,
Just popped by to see how you are doing. Hope your Mum is comfy and your Dad coping. Thinking of you all.
Julie x
Hi Julie,
Thinking of you,and hoping they were able to make mum more comfortable today.
Mary xxx
hi, like everyone else I’ve been thinking of your Mum today…xx