Hi all, just wondered if anyone can help me. I’ve already posted on friends and family but thought i’d try and pick your brains. My sister who has liver mets is unable to have her second cycle of xeloda as her bilirubin levels are too high. Her feet are quite swollen and she has started with the heartburn but i wouldn’t say that her skin and eyes are yellow. I’ve researched all about jaundice and the bile duct and understand that it would be dangerous to let her take the chemo when this is not right but i’m worried that this will stop her having the chemo altogether. The onc said last friday, have some blood test on tuesday and come back on wednesday. That’s six days waiting and to me i’m sure there is something they could’ve done in between. Has this happened to anyone else and do the bilirubin levels rectify by themselves. I’m just so worried that she won’t be able to carry on with her chemo. Hope someone is able to help me.
Desperate sister Julie x
Hi
I dont think that 6 days is a really funadamental problem, but I do sympathise - you and Helen need an answer now ! and any time is too long to wait,are they looking at her tumor markers and seeing if they are rising ? Maybe you can ask them what they plan to do on wednesday if that is OK with Helen…I think if the bile duct is blocked thet can put a stent in, but if there is progression in the cancer they may need to change the chemo.
I don’t have any answers at all - just want to send you two a cyber hug,
Cathy
Hi Cathy,
thanks so much for your quick response. No one replied on family and friends which concerned me even more.
I’m not sure about the markers Cathy, to be fair our Helen doesn’t ask many questions as she is so afraid of what they might say. Which is understandable in her situation i suppose. It’s the not knowing that helps to keeps her so strong i think.
I have read about these stents but would have thought they would have tried that while waiting for her onc appointment. Clinic is only on one day a week so maybe that’s why things take so long. Who knows how they work eh!
I have also read about chemotherapy and how it may aggrivate the liver so if that’s the case hopefully they might change it for something a little milder.
Thanks so much for your words of support Cathy it does help and is so much appreciated. Hugs to you too.
Julie x
Hi Julie
I am sorry to read about your concerns about your sister. While you wait for the other forum users to reply with their experiences as well as support and advice you may find it helpful to talk through your concerns with one of the BCC trained members of staff on the helpline. You can talk in confidence about your worries and you will be able to have some of your questions answered. The number to call is 0808 800 6000 the lines open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.
I hope this is of some help to you.
Kind regards
Sam
BCC Facilitator
My wife had the same problem on Xeloda, they took her off for a short, I think about two week, break and she was fine, they did give her some medication but I cannot remember what it was. I think it is fairly normal when the drug kicks in, also as it is body mass dependant on how much they give you, they usually drop the dose and then build it up again.
Hope that helps
Hi Terryj, thank you so much for your comment it is very reassuring. You just think that it’s a catch 22 situation don’t you, where if the bloods are not right she can’t have the chemo and so, no chemo the C will become worse. She is on quite a high dose of xeloda at the moment and I can totally understand how our Helen feels that if she not having her chemo the c’s growing which makes her very anxious. Her onc appointment is today so we shall see what happens.
Terry, did your wif’e’s feet become very swollen with water retention. Our Helen’s are huge. She is struggling to get any shoes on. The doc has given her some water tablets and some special socks to wear which are so difficult to get on. Her tummy is swollen and she has started to get indigestion as well which makes me wonder whether they might put a stent in.
I’ll be glad when they have decided what they are going to do, it’s absolute torture waiting especially when she is in discomfort.
Many thanks Julie x
Hi Julie,
No my wife did not suffer from the water retention in her feet. She was actually very lucky re the side effects, she did lose most of her toe nails but did not get the hands and feet syndrome. I am quite sure they will lower the dose and start again.
Have you looked up Xeloda on the net. there is a good amount of information especially re the side effects and the way they rate them.
Hope she is OK today, let me know.
Terry
Julie
I’m sorry your sister is having such a hard time.
Regarding bilirubin levels I wonder if her levels were originally “normal”. I say this because some years ago I had a BUPA health check and they discovered that my levels were outside the usual range and so I was diagnosed with Gilbert’s Syndrome - they have a website. Some people are affected by it and others, like me, live in ignorance and just have it noted at my local surgery as it is not so bad that it needs to be treated. It didn’t affect my chemotherapy at any time so I was able to have all treatments as scheduled.
I hope things settle down soon and that Helen can proceed with her treatment and soon see the benefits of it.
Best wishes
D
Hi Jules
Sending you two good wishes for today - hope you get some answers.
I had to smile in a wry way reading your comment, often I don’t ask things as I don’t want to know the answers. I have some relatives who are always pressing for more information - what I want to say is- it isn’t you has to hear the answers only - its me too!! I only ask what I want to know and what I feel i need to know…helps me keep going.
good luck today
Cathy
Hi All, just to let you know our Helen has got to have an ultra sound scan in the morning to see what’s actually going on with her liver. The onc said that they will most probably do a drain because of the fluid around her stomach and also mentioned that they might do a stent if the bile duct is blocked.
Apparently your bilirubin levels should be below 17 and our hel’s is 33 which they said is very high.
All the water retention in her feet tiredness etc are because the liver is not functioning properly.
The most annoying thing is that her appointment was at 3:50pm, we actually went in to see the onc at 5:40 and came out at 6:30. This is a regular occurance as well. I realise that there are hundreds of people in the same situation but i get so frustrated, especially when i know that she is not well enough to be sat there for that length of time and in so much discomfort.
Anyway, thank you all so much for your help and support, i will keep you informed of the results. Fingers crossed.
Julie x