My mum was first diagnised with breast cancer in 2002. The doctor thought she’d gone into remission but last year they found bone and liver metastases. A course of chemo with taxol and carboplatin with Herceptin was successful, particularly on the bones but herceptin on its own from January didn’t work and in March the cancer decided to concentrate on her liver. She has recently become jaundiced as the liver mets are very extended and unfortunately the jaundice is caused by the cancer not a bile blockage - no stent option for her.
She is now in hospital but apart from the lack of appetite and the tiredness (which she’s had for months anyway) and of course the jaundice, she is OK. Her oncologist is treating her with steroids, antibiotics and glucose and says that the situation could get worse but they are hoping the steroids will reduce the level of bilirubin in her system (she is now less yellow) and enable them to try with some extra chemo.
Has anybody been through this and has some experience of liver mets/jaundice/steroids… does she really have any chance of getting better? It is so hard for me … the first doctor who saw her in A&E (not an oncologist) told me there was nothing they could do and gave her a month or two, but now she is less yellow and her doctor has some optimism…I dont know who to believe. Should they really wait until the bilirubin goes <8mg? Can/should they do something now?! Should I ask them to? Am I hindering her chances of getting better if I don’t urge them to try with something now rather than to wait as the cancer is not being treated by the steroids?! Can you please advise?
Hello demare
I’m sorry to hear that your mum is having a difficult time at the moment. You have come to the right place for support as many of our users have a wealth of knowledge between them.
May I also suggest that you contact our free helpline and speak to one of our breast care nurses who are here to support you through this on 0808 800 6000, opening hours are Monday to Friday 9.00 – 5.00 and Saturday 9.00 – 2.00.
best wishes
June, moderator
hi, so sorry you are going through this, i was diagnosed with liver mets dec 09 , i am on herceptin and capecitabine, there are fantastic ladies on here with a wealth of knowledge and im sure they know a lot more thanme
take care
galen xx
Hi Demare
Sorry to hear about your mum. I too have liver mets (primary dx like your mum was in 2002 and then dx with liver mets nearly 3 years ago). I have had a lot of treatments over the last 3 years and have been mildly to moderately jaundiced several times over that period. Like your mum, it is felt that it isn’t a bile duct blockage but because of the cancer. Sounds as if your mum is more jaundiced than I have been (my measurements seem to be done on a different scale to your mum’s so can’t compare directly) and I’ve never been offered steroids etc. Does sound as if they are working though if she is less yellow - something to hold onto if you can.
My understanding (from what my onc has said to me about my rising bilirubin levels) is that it is too dangerous to give chemo if the bilirubin is too high because of the added strain on the liver. So they will have to wait until they are considered to be at a safe level. How quickly are her levels dropping?
Really hope that you and your mum can have a discussion with her onc soon about how he sees the next few weeks going.
Sorry I can’t help more.
Sending you a big hug.
Kay xx
Hi Demare,
I’m sorry too to hear about your mum. I also have liver mets (diagnosed along with primary last June) and it was severe, sudden jaundice which sent me to the doctor.
Not sure how the measurement scales work but my initial bilirubin levels were at the top end of the 200’s (280ish) with “normal” on that scale being 20 or below.
I have also been given steroids in an attempt to reduce the swelling in my liver (although not to treat jaundice), maybe this is the hope for your mum? If it’s swelling that is causing the jaundice and that can be reduced by the steroids maybe that will indicate something to the oncology team about the next best course of treatment for your mum?
I hope you’re able to get some more information from your mum’s oncologist.
Take care,
Bad Fairy x
Thank you so much to all who have responded and for your reassuring words. They really help. I think my mum’s bilirubin is measured in mg - so she would be around 200 or probably a bit more using the other measurement.
She started today on a low dose of chemo…I do hope it will work. Bad Fairy - Did you also try chemo whilst jaundiced? Or the steroids worked without the need for the chemo? I so hope she’ll get a little better even though she may get a little worse before getting better…
Love - demare
Hi Demare
Thanks for sorting out the 2 different scales. My bilirubin is in the low 100s and I am having chemotherapy so clearly they will offer chemo even when the bilirubin is raised.
Are you seeing your mum’s doctor regularly? Just thought it might be worth asking directly what the bilirubin levels are doing and at what level they would consider offering chemotherapy etc.
Hope you get some answers soon and that things improve.
Kay x
Hi Demare,
Yes I did have chemo whilst jaundiced. I had ten weekly doses of Paclitaxol (Taxol) and one three week cycle dose at the end. It took about 4-5 weeks for the visible yellowness to fade but my blood tests showed a week on week decline in the bilirubin. By the end of the Taxol course the tumours in my liver had shrunk by an average of 70% and my bilirubin was down to 20.
Since then I’ve had progression and am now on weekly, low dose Adriamycin chemo.
I hope the chemo they’ve started for your mum helps her and sorts out her jaundice quickly. I found with the weekly doses (which are obviously smaller than the ones given once every three weeks), that the side effects gradually built up rather than hitting you at the off with a hammer blow. Hopefully your mum will tolerate it well and reap the benefits.
Bad Fairy x
P.S. I still get given steroids as a part of the anti sickness chemo drugs. They do help reduce the “fullness” feeling that my liver has which in turn can cause pain.
Thank you Bad Fairy!
I am so glad the chemo worked for you and even if there has been progression since I am sure the one you are doing now will have good results.
One of the most important things is to keep a positive attitude, it does help along with the right treatment!
Lots of Love - demare
Dear Kay123
My mum started low dosage chemo yesterday - she is still jaundiced and I hope it will help her. She had taxol and carboplatin until December so they are now giving her epirubicin - having to try with a different chemo. Her bilirubin level is around 150 - she is feeling tired today but she is in good spirit!
Thank you for all the info - it helps so much knowing that we are not alone!!!
Love - demare
Hi demare,
Thanks for your kind words, I’m doing fine and stying very positve, I live for each day and deal with what ever each new day brings!
Just wanted to comment on your Mum’s chemo. Epirubicin is in the same group of drugs that my latest one is (Adriamycin which is also called doxorubicin I think). Although I wasn’t jaundiced when I started this one, I’ve had 11 weeks worth so far and a scan at 10 weeks showed a slight improvement in liver tumour sizes. Not as significant as the Taxol reduction but good enough to plan for at least a further 6 weeks worth.
I hope it does the trick for your mum too. Good to hear her spirits are up, I think for most of us feeling that we’re actually doing something by having active treatment rather than waiting for decisions to be made gives us a mental boost.
Bad Fairy x
Hello! I just wanted to give you an update…the chemo is working well - jaundice gone and bilirubin levels almost back to normal…Doctors talking about sending her home to continue the chemo. Thank you so much for all the info and encouragement - it really helped.
Hello! I just wanted to give you an update…the chemo is working well - jaundice gone and bilirubin levels almost back to normal…Doctors talking about sending her home to continue the chemo. Thank you so much for all the info and encouragement - it really helped.
That’s great news Demare…
Jx