My Mum had a followup appointment with her onc last week. He says that the mets have spread rapidly through her liver & bones.
He has said that the hormonal treatment she was on (Armidex) was not working & that the only option is to try a different type of chemo (she had 5FEC 2 years ago) but that we shouldn’t expect too much from it.
Mum is really bad at the moment. Her legs have swelled up (which onc says is due to the liver). She has completely lost her appetite & is struggling to eat anything. She has been sick a few times, as she has been forcing herself to eat & it has got too much for her.
Is that right that there is no other treatment & that this one may not even “do” anything? Is there any chance of tumour shrinkage or are we clutching at straws?
Will Mum be able to have chemo if her appetite has decreased?
We really have not had much support or information from the medical people. The MacMillan nurses are unreliable, not turning up when they say they will & being very vague & non-commital about things. The GPs have just tried not to commit themselves to anything, leaving it all for the onc, even though Mum had to wait 4 months to see him following her last appointment. The District Nurse might as well be the postlady for the use she is.
I don’t feel I can speak to anybody on the Breast Cancer Care Helpline unless there is some practical advice they can give. Sorry if that sounds ungrateful - it’s just that the medical people have been very good at dispensing tea & sympathy but haven’t given much practical help.
I have just posted this as a reply to your first post. If you want to send me a private message, I am happy to reply.
Psyche
I am so sorry that you and your family are having such a terrible time. My Mum had bc which had spread to her bones by the time it was diagnosed. In fact, that was how they found it, because she went to the doctor with shoulder pain. They didn’t operate but gave her Tamoxifen and then Arimidex. I think she had bone phos, too. She had radiotherapy on various bone hotspots, whenever they became a problem. In other words, they managed it.
As far as practical help goes, well when my Mum’s appetite deteriorated and we found it best if she had her food liquidised, as she couldn’t eat anything too dry. An idea is to have a sherry before meals, which helps stimulate the appetite. We kept as positive as we could with her, but sometimes elderly people just lose the will to carry on.
I am surprised you are having trouble with the MacMillan nurses. Perhaps it would be worth trying to get a different one. My friend who had bc, thought hers was absolutely wonderful and still stays in touch over four years later, so I think you may have been unlucky - or you could try Marie Curie.
I do think it would be worth ringing the helpline, as I am sure they can help with practical matters, or would know who you should contact, if not.
Thanks so much for your reply. It feels like you are somebody who knows what we are going through.
The sherry sounds like a good idea - we haven’t tried that. We’ve tried Mum on soups, which she likes. Trouble is, when it’s just my Dad looking after her, he opens up a tin of soup & that can be very tannic & hard on her stomach.
The trouble with the Macmillan nurses is that it has never been the same one; 4 different ones have turned up so none of them really “know” her. The one who did her original assessment a few weeks ago recorded that she had early onset dementia - she hasn’t - she’s just very hard of hearing & wears a hearing aid, which the nurse was told about. Then, they are given a load of questions by the family, to which they have no answers. They say they will find out & get back to us and that’s the last we hear of them.
The only practical thing has been to provide a device that helps lift Mum into & out of the bath.
On top of everything, Mum’s older sister died on the day Mum received her bad news last week. Now she has that news to contend with (which she took calmly) as well as dealing with her own situation.
This is like a slowly, painfully unfolding nightmare & not one I ever imagined we would be involved in.
Yes, Psyche, I truly understand how you are feeling. You keep thinking it can’t get any worse, but it does. My heart goes out to you.
Is it possible to get any help for your poor Dad? The Macmillan nurse should be able to find out. Alternatively, contact the Citizens’ Advice Bureau - or maybe the Helpline here would know. I am sure CAB can help put you in touch with all sorts of assistance, from something like meals-on-wheels, maybe, to benefits help, if applicable. Sometimes, these things can make all the difference - making the unbearable, bearable.
Regarding the Macmillan nurses, I do think it would be worth contacting their head office or regional office and explaining the situation and that you need to have someone who is reliable. There is no point otherwise, and I know they really want to help and would probably be horrified if they knew you were being let down.
Keep coming back to this site for support - because you need it, too. I only discovered it recently, when I was diagnosed, and would have loved to have had others to chat to when my Mum was going through it. These ladies have really helped me cope.
Thanks so much for your advice again. I told my Dad about your sherry tip & he gave Mum a small glass. Said it must have had some good effect because she ate a bowl of chicken broth & a bit more solid food than usual.
Mum’s GP actually turned up in person today (unexpectedly). He has arranged for some anti-nausea medication & for some of those cartons of drink that are packed full of vitamins & minerals.
We are hoping so much that Mum will be fit enough to have the chemo. We have found out it is Capecitibine/Xeloda. The information pack gives a lot of very frightening information about side-effects which seem to be different to what she had on 5FEC.
I think I may phone the Helpline as I’m coping with this well on the outside but not at all on the inside.
Hope I can give you a bit of info which may help. I also have liver and bone secondaries.
Re: Xeloda, I was on it for 2 years and had good tumour shrinkage for about 18 mths. Compared to FEC side-effects I found Xeloda was one of the easier chemos. I did suffer foot problems (sore dry skin that peels) but we solved this by my husband Ian rubbing aqueous cream into my feet every night. Make sure that before the Xeloda (breakfast and evening) that your mum has a good meal or at least a full multi-vit drink. I have just started taking the Ensure drinks, the pharmacists reckons these are a bit nicer than the Vita-Sip drinks. Make sure she keeps her bowels regular with Lactulose and Movicoll. Drink plenty of fluids and eat plenty of veg if poss. Try fresh cartons of soup, e.g. New Covent Garden, much tastier and don’t have that metal taste.
Re: Macmillan, tell them you want the same person so they can develop an understanding. You will need to get into the habit of chasing and checking that all the “experts” and “professionals” have done what they said they will do. I am very lucky to have a great team at the hospital but things can get lost in the system and people forget to book things like a scan for you. I always take a little notebook to my appointments, it has proved invaluable to refer back to for dates when something was discussed, symptoms arose, promises of action made etc etc.
You must also ask questions of the oncology team. They might not volunteer certain information but in my experience they will answer a direct question
Hello Psyche,
Just to say I really feel for you and your Mum. I recently cared for someone very dear to me who had motor neurone disease and it was such a struggle to get practical help. The district nurses were pritty useless and so was the GP (if I’m honest). We had the ‘oh it’s probably eairly onset dimentia’ fob off - it wasn’t. All the help we had was too little too late.
Hopefully it will be different for your Mum if they can stabilise her condition with the chemo.
For practical devices try the red cross - they lend stuff for free. Try the Occupational Therapist in your local social services - they should do an assesment and provide equipment - you have to keep pushing for this but some will eventually come if you need it. They can provide a profileing bed, hoist, slide sheet - all things to help your Mum with her mobility.
For emotional support I found our palative care nurse very good (can be contacted through the local hospital or hospice).
The hospice might also be able to offer nutritional advice but like Debs says try the New Covent Garden soups - they also do a sort of risotto which is quite easy to swallow. The fortisip? drinks are also quite good - the GP should provide these, there are lots of flavours so ask for a selection if poss.
hope things improve for you both
cheers
caroline
I am really sorry your mum is so poorly. There is practical help out there and it makes me really angry that you are not being offered it. Macmillan should be offering some continuity of care and your mum shouild have a named nurse. If your mum needs help with washing and dressing etc, you could approach social services and ask for an urgent social work assessment-your dad is also entitled for his needs as a carer to be assessed. Make sure they are aware of your mums illness and prognoses so that she is prioritised. I wander if there is a hospice near you that could offer support. They useually have a social worker, and may be able to offer some respite/ day care. Your mum’s g.P or nurse can refer your mum.
Thank you so much for all your advice. It is helping, it really is.
Mum has been taken to the hospital this afternoon, to start the Xeloda - at least, we hope she is strong enough to take it. Her appetite has been so poor this last week that we have been worrying like mad that she may have become too weak for it.
They are picking up some of those vitamin/mineral drinks and we hope that they may help. They did before when she was quite ill with a stomach infection while on 5FEC 2 years ago.
My sister & I live quite far from our parents so although we come to visit & help as much as possible, it’s not as much as we’d like.
I think it would be a good idea to ring the helpline, too. You and your sister also need support, and I am sure they can give even more practical advice.
I am glad the sherry helped a bit. Yes, I remember those supplement drinks, but I can’t remember which ones my Mum liked best. It was a while ago now.
We are all hoping it goes well for your Mum today. Like you, my brother and I didn’t live very near my Mum, in opposite directions in fact, and it was difficult to help as much as we wanted. I think I tended to overdo the ‘help and advice’ sometimes. As I felt so helpless, and was so anxious to do something, especially to help my Mum to eat, with the best of intentions it probably seemed like nagging to her.
Phoned up Mum and Dad to see how the chemo went. She has been given the packet of Xeloda but has been told not to take it yet as they need to carry out an ECG first and they can’t fit her in for it until Tuesday!!!
Is there no end to this nightmare? I thought cancer patients got treated as a matter of urgency.
On the plus side, they were given a box of those supplement drinks & she has had one and managed to keep it down and then managed some soup and a very tiny bit of solid food. Fingers crossed that it keeps her energy up.
Thanks Ann04, I think I might be brave and phone up the helpline. I wonder if it might help my Dad to do so too at some point.
Sorry your Mum has to wait for the ECG. I suppose from the hospital’s point of view, most people needing ECGs are urgent, by the very nature of what it is - but that is no consolation to your Mum, I know.
The supplement drinks will help her keep her strength up and give her confidence that maybe she can still eat.
The helpline would be of value for you and your Dad, as you say. I am sure they are lovely people. Talking about it can really help, especially to someone who isn’t involved, because you can say exactly what you feel without fear of hurting them. That’s why this forum is so useful.
The MacMillan nurse got a response from the onc who said that Mum can start the Xeloda tomorrow, even if she hasn’t had the ECG yet. Feel really glad about it but worrying of course that she is “too far gone” for the Xeloda to be of any benefit.
Apart from my own emotions regarding Mum, I am so angry with the medical people, that things were allowed to progress this far with none of them “owning” the problem or getting her in to see the onc before her scheduled appointment. I know I can’t do anything to change this but the anger is an emotion that helps me cope with the other side of things.
Incidentally, has anybody out there with liver mets been through this cycle of nausea, sometimes with vomiting and swollen legs?
Hi Psyche,
re the sickness I am taking up to 8 domperidone a day at the moment for my sickness they work if I keep them topped up so I take 1 every 3 hours and it really helps, not had the swollen ankles so sorry I can’t help you with that.
Love Debsxxx
Things have got an awful lot worse since I last posted. Mum started the Xeloda on Friday. Saturday morning, she couldn’t stand up on her own any more, not even with crutches. And she was confused about things.
After 3 of us helping to lift her, we managed to get her to the loo & everything & called out of hours GP who visited, made recommendations to give her plenty of liquids throughout the day, raise her feet & stop giving the Xeloda & prednisolone. We also had a visit from a Rapid Response nurse who did an extensive assessment.
By Saturday night, Mum seemed to recover herself - perfectly lucid & able to walk with crutches so we took a family decision to give her her day’s doses of Xeloda but not the prednisolone.
Then it happened again on Sunday, with deterioration followed by recovery. This morning however, mum couldn’t get out of bed without help again. Dad had to phone the oncology unit & now they have said that Mum must be admitted to the hospital for a few days observation.
We (especially Dad) are absolutely distraught as the word “hospice” implies that you are never coming out again.
Could it be the Xeloda or steroid? Could it be the BC (she has it in the liver, lungs & bones).
The rapid response nurse was really really good, as was the out of hours GP. They are the only healthcare professionals who have been good about Mum’s situation since she was diagnoses 2 years ago.
Hi, so sorry about your Mum’s deterioration. Please re-assure your dad and family that lots of people go into the hospice for symptom control and do come back home once things are controlled. It is very difficult to know what to say to you as I know how difficult a time it is for you watching your mum suffer.
I hope that Mum’s case will be one of those where symptoms can be effectively controlled so that she can come back home.
It has all happened so suddenly. It’s like the deterioration got a great deal worse once the onc had confirmed that there was rapid spread.
If the symptoms are not being caused by Xeloda, I wonder whether Mum will be allowed to continue with Xeloda. The onc told her that if she didn’t try Xeloda, there was nothing else he could do. The chemo she had before was 6FEC. I thought there were more types of chemo than just those that could be tried, including Herceptin, which he mentioned but did not prescribe.