Grateful for information

My daughter was diagnosed with HER2 a couple of years ago. She had a masetomy and Herceptin for a year and everything was fine. Unfortunately about 6 weeks ago she discovered it had gone to the brain - one met. She has had 15 radiation treatments and is at the moment in a wonderful hospice trying to get over tiredness. the next suggestion has been Lapatinib and capcitabine.

Just wondered if anyone else was going down this oh so lonely road and would be so grateful for advice


So sorry to hear the news about your daughter. I don’t have brain mets so can’t help, but bumping it up in case someone else can.

Best wishes.

Alison x

Hi…I’m so, so sorry your daughter is dealing with this. Lapatinib and Capecitabine both pass the blood, brain barrier so I hope they work so very well for your daughter. I have bone mets and Capecitabine has given me well over a year of no active cancer. It is a ‘kinder’ chemo for many of us so I hope it’s the same for your daughter. One of the most common side effects is dry hands and feet so some good moisturisers will help and (I found) it was best to start moisturising before there is a problem of cracked heels.
Best Wishes to you both.

Hello, I am sorry you are having to watch your daughter go through this and feel so frustrated that there is not much on offer as far as treatment goes. I do NOT have brain mets but have numerous bone mets. I have been on Capacitibine on 2 separate occasions and have just finished an 8 month course which has significantly improved my condition. It is just as toxic as other chemo regimes but the side effects are much easier to cope with that some other chemos. I am sorry I have no real answers for you. Do you have a Breast Care Nurse who specialises in advanced BC who you could talk to about your daughter? I am so sorry that you are having to cope with this at all. Let us know if you get any answers. And feel free to come back on here if you need our support. Love Val.

Hi bellfire

I am sorry to read of your daughters recent diagnosis. As well as the support you receive from the other forum users you may find it helpful to talk with a trained member of staff on the BCC helpline.
Here you are able to share your worries and concerns with someone who will offer you a listening ear as well as support and information if required. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9am to 5pm and Saturday 9am to 2pm.

We also have a fact sheet on secondaries in the brain which you may
find helpful as it describes what it is, what the symptoms are and the treatments used.

If you would like to read this on-line or order a copy just follow this link:-

I hope this is helpful.

Kind regards
Sam (BCC Faccilitator)

Hi I am currently having Capecitabine and Lapatinib for brain mets which were first diagnosed 20 months ago. I am awaiting scan results to see how things are going but my last scans showed reduction in the size of the tumours. I hope your daughter makes a good recovery from the radiotherapy and that Capecitabine and Lapatinib are successful.

Thank you so much for your replies…I’m not exactly brilliant with computors so it’s taken me until today to find what I’d written and all your lovely support. She’s now five weeks out of the rad therapy and will have an MRI scan quite soon but I’m hoping that she will start on the two drugs quickly. She is still on some steroids and finds it difficult to walk - no energy - but her irritability is coming back which usually means that she’s feeling more in charge…lots of good thought coming from me to you all.