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Secondary to Liver

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Bombie
Bombie Member Posts: 13
edited September 2016 in Metastatic breast cancer

Hi there, I have breast cancer which has now gone to my liver.  I had it under control but my last CT showed the tumours have all grown back and quite large.  I have been put on Everolimus and Exemestane (probably not spelt properly) but can't up my dose as I keep getting mouth ulcers. This is the last tablet they have for me before chemo again and I really don't want to go back there! I have been dropped to a 5mg tablet once every second day and have been on it a week and so far no mouth ulcers so fingers crossed I might be able to stay on this dose.  Is there anyone else who also has secondary in the liver or on the same tablet?  I'm just wondering how other people are finding their response to Everolimus/Exemestane.  xo

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  • wendy55
    wendy55 Member Posts: 774 ✭
    edited April 2015
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    HI bombie,

    I can understand exactly where you are at, I started on affinitor/aromicin or everolimus/exemestane last september when the femara I had been on stopped working,I have tumours in my liver and spine, so these drugs were the next step, my oncologist did explain a little about the mouth ulcers b ut not a lot and I found out for myself how debilitating they could be, they were like open sores in my mouth and on my tongue and trying to eat was near on impossible, I was sitting down to tea one night with tears streaming down my face because I could not eat, I lost 4kgs,in hindsight was good, but I tried to persevere but ended up ringing the nurse practicioner who is my oncologists offsider and it was decided to stop the everolimus for seven days, which I did, then started again, this worked for a while then they came back, and it was decided to stop me again for a further seven days, and lo and behold they have not come back, my oncologist believes that a stop start approach has shown that this works and they dont come back, I am on the full 10mg, and if they hadnt improved they were going to reduce me to 5mg like yourself, what remedies have you tried,i Have tried Gelclair, which was given to me at the hospital, I have tried all the pharmacy options, I did find that kenalog paste worked, but you need to use it at night just before you go to sleep, I used to put it on a cotton bud and then paste it on the ulcers, washing my mouth with warm salt water, and i also found that manuka honey at least 30+ also helped, it did sting a little but helped, I also just read that swishing a cup of sarsparilla soft drink around in your mouth is also supposed to work, its a matter of finding out what works for you, I know that its really hard but if your oncologist agrees with a stop start method that just might do the trick, I did find that stress made them worse and also anything citrus eg orange juice, eating things like rice makes meal time easier, my breast care nurse told me this and its true, either cook it yourself or cheat and buy the packet of brown rice already cooked and just needs reheating, I know it must seem like its too hard and of course you have the new diagnosis to contend with as well, we are in the same boat by the sound of it! please speak with your oncologist and see what he says, mine had got so bad they wanted me to go into the hospital but I declined and decided I would try and go it alone and do some research about mouth ulcer remedies, ulitimately it was my oncologist who made the call and stopped me and Im so glad that he did. I hope you have a breast care  nurse mine is a real gem,like you i hope the combination of the drugs keep on working as again like you I have been told that chemo is the next option and I really dont wan t to go down that track again, but what will be will be, so here I am nearly nine months on these drugs and I can honestly say that I feel okay, yes I get tired and Im sure that you do as well, I also found that my scalp itches and initially my skin did as well, but an antihistamine tablet fixed that, please dont give up, I know that we are all different and react to drugs in a different manner, but if you can in a few months you may be pleased that you did, if I can help in any other way please just connect with me and I will do all I can to help you, we advanced girls have to stick together dont we,

    wendy55

  • Danielle_BCNA
    Danielle_BCNA Member Posts: 64 ✭
    edited April 2015
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    hi all, great that you can share the tips around treating mouth ulcers from everolimus. Maybe this is something BCNA needs to develop as we are hearing lots of stories from women. What do you think? Would a fact sheet be helpful that we could get you all to contribute to? regards Danielle

  • pinklady1953
    pinklady1953 Member Posts: 19
    edited April 2015
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    Hi Bombie, I too have a full liver that is active and a lot of bone secondaries. I don't seem to feel anything in the liver and I was on everolumus but side effects were too sever

  • pinklady1953
    pinklady1953 Member Posts: 19
    edited April 2015
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    Hi again I seemed to lost my post. But I was going to sugest Pomegranite juice is supposed to help ulcers. I have not tried this as the oncologists has taken me off everything. I have recently had radiotherapy but have been left with radiation toxicity?? I am hoping that is just another hurdle to jump. Has anyone heard of radiotherapy toxicity I sleep a lot and I am anaemic. Big hugs too all. 

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