Hi,
I know there is no such thing as normal in life and certianly not cancer treatment but wondered if you could give me some guidance.
I have secondary breast cancer in my bones and liver. I had been on Ribociclib but in January was changed to Capectabine. After my first cycle of Cap my blood results have shown an issue with my liver ALT levels. They are being monitored and I’m having weekly blood tests but I am now heading in to week 5 of being on no cancer medication, and its been 9 weeks since my last denosumab injection.
I know I can’t be put on any more medication until my liver levels are ok again and I do trust my team to do the right thing but I’m starting to worry that the cancer is now being given the chance to start growing again.
Thank you
Hi Cubby3
Thanks for posting.
Even though you understand why treatment was temporarily stopped, it’s natural that you are worried about the effect this break in treatment may be having on the cancer.
Treatment is based on one’s individual situation, but it is difficult to predict how a person will respond to a specific treatment. Side effects of treatments such as capecitabine may result in treatment delays or a reduction of the drug dose. This is why people are monitored closely with scans and blood tests.
It sounds as though your treatment team are monitoring you weekly with blood tests, but I wonder if you have spoken to them about your understandable concerns. If you have not done so already, we would suggest that you ask for an appointment to speak with your oncologist, or you may want to discuss this with your secondary breast care nurse, if you have one.
At times like this, some people find it helpful to talk with others who are going through a similar experience. We have a secondary breast cancer online discussion forum including a private chat group for sharing information and support. There is also a weekly Live chat session which runs on Tuesdays at 8.30-9.30pm.
We also provide a number of different services for people living with secondary breast cancer aimed at providing both information and support online and face-to-face. These include Our Living with Secondary Breast Cancer Online groups facilitated by trained counsellors and speakers live sessions. Our face to face Living with Secondary Breast Cancer groups meet up monthly and also give you the chance to connect with and share experiences with other people who understand what you’re going through.
Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, If you have hearing or speech difficulties prefix our number with 18001 and the call will go through Relay UK. Our helpline has access to telephone interpreters if language translation is required.
If you would prefer one of our nurses to call you. To do this please complete this form ticking the box agreeing to a call back.
Our usual opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday.
Out of hours you can leave a message, and we will call you back when we next open.
Best wishes
Eve
Breast Care Nurse
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