Hi my name is Julie and my sister Helen has just been told that she has secondary cancer in her liver. She is due to start some tablet form chemo nxt wednesday and has been taking oramorph and steroids at home. She has been ok and comfortable for the last four days but has now got to start to reduce the steroids. This is starting to make her feel like she can’t breath very well and in a little discomfort, which she was trying to keep at bay. Does anyone know why she has to come off the steroids, especially when it makes her feel ok.Will this problem improve a little once she has started her chemo. We have also been told that she has a liesion on her lung which they say might improve with the chemo. The onc couldn’t give us a time as we have got to wait and see how well the chemo works. We all as a family feel so helpless and just want her to be as comfortable as possible. Any suggestions would be grateful. Thanks Julie
HI Julie,
I am sorry to hear about your sister and she is obviosly suffering some pain if she is on oramorph.
I was diagnosed in early April with liver secondaries, barely a year after I had finished radiation treatment after lumpectomy. I was not feeling at all well, had pain and ascites.
I have been having chemo (Taxotere, Cyclophosphamide and Herceptin) I have had 4 so far and am feeling so much better. I am only on steroids for 3 days around the day I have chemo so I cannot help you with that question. But I am back doing just about everything I used to, just a bit slower some days and feel well now. I hope that the course of chemotherapy will work as well for your sister. There are a lot of lovely ladies who post on here in the secondaries category and I found them invaluable help and inspiration. I wish you and your family all the very best and I will keep you in my thoughts.
Love Carolina
Hi Julie and welcome to the BCC forums,
I’m very sorry to read of your sister’s recent secondary diagnosis. I’m sure the other forum members will be along very shortly to offer support and share their experiences with you. You may also like to know about some of the other support services from Breast Cancer Care for secondary breast cancer which you and your sister may find helpful during this difficult time.
There is a telephone support group, the aim of the group is to give the opportunity to talk privately and confidentially to other people around the UK with similar experiences. Discussions cover issues such as relationships, work, money, living with uncertainty, treatment, as well as everyday life, for more information click on the link:
breastcancercare.org.uk/content.php?page_id=11306
There is also a secondary live chat, this Breast Cancer Care’s online chat facility where anyone with secondary breast cancer can talk to others in real time, it’s from 8.30 pm - 9.30 pm on Tuesdays. It is facilitated by an expert moderator and a nurse who are on hand to point you to sources of help and information. But for most people, the chance to talk to others in a similar situation is what counts, again for more information click the link:
breastcancercare.org.uk/content.php?page_id=6218
The following link will take you to Breast Cancer Care’s publications about secondary breast cancer, including one specifically about liver secondaries which you both may find useful to read, there is also a DVD called ‘Living with secondary breast cancer’ which has been recently introduced, you can order these via this link or by contacting our helpline on 0808 800 6000:
breastcancercare.org.uk/content.php?page_id=5258
I hope this is of some help to you and your sister.
Best wishes
Lucy
Hi Carolina, thank you so much for replying to my mail. You have given me hope at a time of desparation. I’m so sorry to hear about your secondaries as well. It makes me wonder how everyone copes. Our Helen was on taxotere for her breast cancer and after her surgery was given the all clear last june, so her’s has been bearly a year also. I can remember her having the steroids then before her chemo so perhaps thats why she has to reduce them now. I am knew to this site but i am sure i will find a lot of support and comfort from other people who chat on here. Thanks again for your support Carolina hope all goes well for you. Thanks Julie xx
Hi Julie
My mum was diagnosed with bone mets a few weeks ago so I’m new to all this too. I know exactly what you mean about feeling helpless and I’m really sorry to hear about your sister. Mum was given a course of steroids which only lasted a week. Her onc said that she can have a course every so often but that she can’t stay on them long term because they can cause other probs. She has tried a few painkillers but they all seem to upset her stomach and she has such a poor appetitie at the moment anyway. Once you know which chemo it is you will be able to search the site for more information - there are loads of really useful and encouraging threads. Mum has had rads to her hip and spine over the last couple of weeks and it sort of helps to know that treatment is underway. I hope it goes well next week
Best wishes
Lynn x
Hi Lynn, thanks for replying and i’m so sorry to hear about your mum to.It’s so hard isn’t it Lynn to see your close ones hurting so much.I do feel quite scared at times as well do you. It’s like a sick nervous feeling and i start to feel very anxious. Heaven knows how how my sister and your mum is feeling. If i can see that our Helen is comfortable and not in much pain i find it easier to cope with, but when she’s hurting it cripples me. She starts her chemo tomorrow (fri) 2 week on 1 week off. It’s tablet form, so at least she can take it at home. I think it’s called xeloda. The side effects aren’t going to be too bad, i think the worst will be the sore feet and hands. Lets hope she won’t be too ill on it. Hope everything goes ok with your mum Lynn, we can only try to stay strong and just be there for them. take care, be intouch. Julie
Hi again
We’re probably a few weeks further down the road from you and I have to say that I feel a little bit calmer. At first I couldn’t sleep and couldn’t concentrate on anything. My mum’s on her own too so I just felt panicky all the time I was away from her. Everyone said you shouldn’t search the net but a bit more knowledge has helped. There are loads and loads of people in similar situations to your sister and my mum who have been treated successfully and been able to get on with their lives. Like you say we have to be strong because we’re a lot more use to them that way. I really hope the chemo goes OK. Take care.
Lynn x
I have been on capecitabine (xeloda) for the past 21 months for my liver mets (this is probably what your mum has as it’s in tablet form) and it has stabilised my liver.
I have had two lots of steroids to kick start my appetite each time but they don’t really like you being on them for too long because of the side effects as Lynn says.
Hi Julie,
I am so sorry to hear about Helen. You must all be very worried and in a state of shock. I was diagnosed last March with primary bc and liver secondaries. I’ve had surgery, chemo and now on tamoxifen and herceptin and feeling very well. Back at work and running around after the kids.
There’s a whole crowd of us on here with liver secondaries - you can read pages and pages of all our stories if you really want! (‘Anyone else with liver secondaries?’ thread) which might encourage you, and there are others like pinkdove who have been going for years on treatment for liver secondaries. So there is hope.
I don’t really know about the steroids etc, but pinkdove seems to understand. Just ask anything you like and someone will answer you.
Wishing Helen and all the family strength and good news,
Jacquie x
Hi Jacquie and pink dove, thanks for your support as it’s such a relief to hear that things are going so well for you. I must admit that when we were first told, we just thought it was so final as at the time Helen seemed to be so ill. Each day is very different, one day no pain at all where she doesn’t even take oramorph and the next she aches all over obviously having to take more. I suppose that is how things are going to be. Just wondering pink dove how your side effects have been on the chemo. when Helen was taxotere it floored her and it took her ages to recover from this in between. The bc nurse has said she should breeze through this chemo. Her daughter gets married in sept which should be around the end of her treatment. Jacquie i have also read on some threads about surgery which have said not to accept when they say surgery not an option from the onc and bc nurse and to get referred by your gp. Is this worth looking into. Also before your secondaries were diagnosed did you have many follow up appointments. Helen didn’t have one with in a year and they have said that it’s nation wide that this is not done for bc patients. I find this unbelievable as hers was the most agressive bc you can have apparently. Thanks again for the support it’s the positives that keep us all going. Julie x
Hi Julie
I just wanted to say I am sorry to hear Helen has been dx with secodaries. I have secondaries and don’t know if I would have managed so far without the support of my sisters its great that you are there for her. The steroids i am on at moment are making me feel better but when I asked onc about staying on them she said although they make you feel stronger, staying on them, eventually makes
you weaker ( or something along those lines)
Take Care
Liz x
Hi Liz, yes i think they’re given to boost energy levels aren’t they. The bc nurse has said that all the aches and pains should subside once the chemo kicks in. I hope so but then the side effects begin don’t they.The oramorph works but it just makes her sleep so she tries not to take too much. My sister and i are so close there’s two years part us but we are like twins. We do have quite a big support network of family and friends but i just want to camp outside on her back garden to make sure she is ok and to be close but obviously i can’t. She says she does like lots of people around her, i suppose it takes her mind off things a little but i could imagine this to be quite tiring at times. Hoping all goes well for you Liz take care julie x
Hi Julie
I think I must be one of the lucky ones in that I really don’t have any of the side effects that a lot of people have (the hand and foot syndrome). My oncologist said it must be something to do with my physiology but I have always responded well to all the chemos I’ve had. I was floored when I was on FEC for the first time, the pacitaxol the second time wasn’t as bad as the FEC (for me) and the Xeloda is the best of all (again, for me). I don’t know whether I’d have lasted on it for as long as I have (21 months) if I’d have lost my hair - sounds really vain but it’s a biggie I think.
I can totally relate to your feeling that it was final because that’s exactly what I thought as well - I just equated secondaries to dying within a short period of time but I’ve realised that it’s not always the case, it is for some people but there are more living with it now.
I’ve been told that I’m not able to have surgery because I have more than one tumour in my liver. I was in remission for 10 years before having mets and never had follow ups (except for yearly mammograms due to my family history).
Hi Pink dove, good to hear from you. Our Helen was on FEC for the first three mths and was ok on that.Just a little wobbly for about 4 days after treatment. I do agree though the hair loss was the most upsetting and traumatic thing for her. At the moment she is in quite alot of discomfort with pain in her shoulder, bloating and fullness around her liver. Is this normal as she is only on her third day of chemo. Will this subside once the chemo starts to work. She is also having a lot of shakey bouts when she attempts to do anything like take a bath, wash or do a little job. She has to sit down as she shakes quite violently can’t breath and feels sick. This soon passes with a few breathing techniques and does seem like a panic attack. I am quite concerned about this and know it’s not the chemo as she has had it for about two weeks now. Do you think we should contact th bc nurse or persevere with it. Also can i ask if you had breaks with your chemo or have you been taking it constantly for 21 mths. Thanks again for your support i find these invaluable. Julie x
Hi Julie
I had ascites (swelling round my abdomen) because of my liver and it was incredibly itchy as well and it took a while for that to subside which I suppose was when the chemo started to kick in. It might well be her liver rather than the chemo but worth mentioning it to the nurse.
I used to find it incredibly hard to do anything physical - even climbing the stairs was a real effort. A very good friend of ours actually bought me a seat so that I could sit down on it when I was having a shower and that made a big difference, I still use it now. It’s probably because the liver is having to work harder and I can totally relate to that. All I wanted to do was lie down on the sofa.
No, I’ve not had any breaks with Xeloda although my oncologist has said that it’s not that normal to have someone on it without breaks. She’s reluctant, whilst I’m responding to it, to take me off it because of the state of my liver 21 months ago (I was also severely jaundiced as it had gone into my bile duct) plus I haven’t had the hand and foot problems that a lot of ladies have on it.
I would mention all these symptoms to the health professionals as they can discuss this with you and Helen. Sometimes it’s really hard because you don’t really know what is ‘normal’ for the stage of disease and what might be something else.
Look after yourself.
Carol
x
HI, I’m really concerned now. Helen has hardly been awake all day. Just rang her husband who says she is in alot of pain. She is reluctant to ring the help line as they will refer her to a hospital 20 miles away which she hates. She says she will ring her nurse tomorrow but i think something should be sorted today. Am i panicking too much and is there anywhere we can ring and speak to someone at the wknds. thanks Julie x
Hi Julie
It sounds like you’re feeling quite concerned about your sister today. May I suggest you give her out of hours GP a call if you are worried this evening.
The BCC helpline will be open from 9am tomorrow morning and the number is 0808 800 6000.
I hope this helps
Kind regards
Sam
BCC Facilitator
Hi julie
I think she needs to call someone today or at least first thing tomorrow morning, maybe you can convince her husband to do that…I am not trying to be alarmist- its just that its going to be a long night if she is in pain and not fully taken care of.
cathy
Hi Julie
I’m really sorry to hear that your sister is having such a bad time. My mum has had a rough couple of days too and it’s hard to know what to do. I hope Helen gets some relief from the pain soon - thinking of you.
Lynn x
Hi Julie
Unfortunately this highlights what is wrong with the NHS - the out of hours system and not knowing who to contact but if Helen’s husband is concerned enough then he should ring the GP surgery tonight and not leave it til tomorrow. It can be extremely worrying and frightening when you’re the ‘carer’ and knowing what to do for the best.
I agree with you that something probably needs to be done tonight
Carol