Breast Cancer Now Forum

Hi Dellly i’m no longer on ribo, am waiting to start another treatment, but have been where you are and am now back there again. Aak if you can be referred to a dietician who can advise but most importantly prescribe supplement drinks/food. They are high calorie & much more palatable than the cheap nasty over the counter brands. you could try sea bands on your wrists - I’m not sure how much they help me but I figure they can’t make me feel any worse. Until you can speak to a dietician I old just try to eat what you can - we can put ourselves under so much pressure & everyone around you can’t hide their fear when they know you’re not eating well. Even if it’s rice pudding, chocolate biscuits anything high in calories throughout the day. Also, do you have any antisickness meds you can take that should take away some of the nausea? I have to say that out of all the cancer symptoms I have (my pain level isn’t that bad so far) the lack of appetite is the worst to deal with. Steroids seem to be the only sure way of getting my appetite back but of course they come with problems of their own. Sorry I can’t be anymore helpful but it really is a case of having to force feed yourself something, but definitely get in touch with your GP or onc about supplements or a dietician referral. good luck xx ... View more

Holly can you update us on whether a decision has been made on this? I read somewhere Novartis was providing this now for free in the UK.   Thanks in advance ... View more

Louise Yes I suffer with breathlessness because I have pleural effusions. I recommend you tell your oncologist about your breathlessness because if you have fluid around your lungs they can remove it for you to give you some relief.  Let us know how it goes. Alison  ... View more

Louise   thanks for the info - I’m currently on 3000mg/day so it sounds like a similar situation. will definitely request a reduction then & how it helps as I was under the impression I should feel relatively ok on Capecitebine. regards Alison ... View more

Gina I know this is an old thread but I am suffering with no appetite at the moment - can you tell me if this was resolved & how? many thanks xx ... View more

Gina I’m on 75% dose and that’s why I’m wondering because it’s already reduced.  I’m not sure if they would think reducing it anymore would be effective? I feel so rough, and have absolutely no appetite- I’m just living on supplements at the moment. xx ... View more

Kate   I'm so glad that you had a positive hospital experience and that they got plenty of fluid off. My drain no longer produces any fluid so I want to ask about having it removed because it's just a potential source of infection.  It sounds as if you're doing really well and you don't sound low to me. I understand your tearfulness at not being able to do anything, especially when we've been so active in life before all this.  Stay well, Alison x ... View more

Jan Have you had problems with your appetite on Cape? I’m on cycle 4, reduced dose to 3000mg and I feel better than I did on previous cycles on the higher dose where I felt like a zombie. But I’m still having eating problems and am wondering if I can expect that to improve. I only get around 2-3 days on my week off where I feel I can eat relatively ok. The rest of the time I have no appetite whatsoever & have to force myself to eat. You give me hope that things will improve, Alison x ... View more

Hi Kate I hope you have had your procedure and all has gone well. When I first had the drain (around September) it was quite painful for around a week but since then I don’t really notice it that much. I was in hospital in November for a drain where they inject drugs in through the drain (sorry I forget what it’s called!) to breakdown tissue & release the fluid from the effusion. They got around three litres off me and have since been on steroids & now capecitibine and my lymph area and breathing have improved. I had my cape dose reduced again last week (on account of my ever decreasing weight) but have felt better since and seem to be able to eat a bit more.  I think if they get the dosage right it makes a big difference. So I know exactly what you mean about feeling rotten & wanting to cry.  Let me know how the pleurodisis goes when you get a chance. Alison x ... View more

I’ve been reading about ERSO with interest & so pleased to see it getting some development but this was recently published so I’m now not sure if this is still going ahead. https://www.thedenverchannel.com/news/national/breakthrough-metastatic-breast-cancer-treatment-hits-snag?_amp=true fingers crossed the studies still go ahead - we need ER+ immunology research ASAP Alison ... View more

Hi I was diagnosed with lymphangitis carcinomatosa in Jul 2020. I agree it’s difficult to find much info and any news online is grim. I was reading about a prognosis of 3 months and each month that passed I realised that was probably an out of date  statistic. I am currently on Capecitebine and feel my breathing has improved and I’m waiting on a scan to confirm if it has shrunk the lymph involvement. I have a semi permanent pleural catheter in my left lung to keep my pleural effusion to a minimum. I’ve also had double pulmonary embolisms so am actually amazed I’m still alive given the 3 month prognosis I was expecting!!   I hope you are now receiving treatment that is working for you, please let me know how you’re doing if you can. Best wishes  Alison ... View more

Louise That’s great to hear that you’ve got back to some kind of normal and your appetite has settled down now. I saw oncologist today & she’s not convinced that Cape is helping with the cancer - says I should be feeling better than I am & will check with scan what’s happening. Thinks there may be some neurological involvement that hasn’t shown on previous brain MRIs. My imbalance is still a problem but physio has given me some exercises to try & help with strength in my legs (depleted thanks to steroids)  Happy New Year to you all - wishing you best of health with Cape Alison x ... View more

Hi Louise thanks for the explanation. how have you been feeling since the transfusion? Has your appetite been sustained since? Are you happy with how much you are eating? It sounds like you’re doing really well. This drug still worries me, that I’ll never feel normal again - I still feel so weak & can barely function normally. 😢   best wishes Alison x ... View more

Hi Shirley, and Louise! so good to hear that you’re both doing well on Cape. I feel that my breathing has definitely improved (I have lymphatic involvement - lymphangitis carcinomatosa) am just still feeling generally yuk, awaiting blood results tmrw. I’m curious, are you guys in the UK alike me? If so I’m wondering about tumour markers - I’ve never been told about these, they have never been mentioned. I’m wondering if it’s a health trust matter or whether I just need to ask for them. I’d be interested to know. best wishes Alison x ... View more

Louise  Thanks so much for your reply - it’s reassuring to know that your transfusion helped. The appetite is that thing that is worrying me most. I have next appt with oncologist New Year’s Eve so will see what they recommend - will keep you up to date. I am finding the lack of balance very debilitating and so walking is difficult. I just want to feel some way normal again ☹️ BoxerMum x ... View more

So glad to see this thread. I’m on Cape cycle 3 and am having terrible balance issues to the point where I feel I can barely function. Eating has become a real stress and concern, like you say the taste of the supplements is beyond me. How can they make Quorn taste like real meat and yet they can’t manage to make a palatable protein supplement for the malnourished. I am now anaemic and have been told a transfusion may be necessary - has anyone had one & did it help how you felt?  man looking for hope that I won’t feel this bad indefinitely  Boxer Mum ... View more