I’m 42, two kids at 15 and 12, and was diagnosed with secondary lung, liver, and bone mets in Sept last year. Had a fairly rough spell with lung clots (PE) after first treatment of FEC. After a spell in a local hospice started treatment on taxol and herceptin weekly for about 18 weeks with a good response (much to consultant’s surprise!).
This finished at end of Feb and I’ve been on herceptin and biphosphonates three weekly since then.
Recently had a scan that has identified brain mets (lucky me). Consultant has now told me that herceptin molecule is too big to cross blood/brain barrier. He briefly mentioned another drug that has a smaller molecule that can cross the barrier, but didn’t give any details. Only spoke about whole brain radiotherapy to address the mets and make my brain “leaky” (sounds wonderful).
Is this other drug lapatinib? If so, does anyone know about availability and if it is back to the famous postcode lottery?
I’m being treated at the Beatson in Glasgow, but recently travelled to the Marsden for a second opinion (before the brain mets) and lapatinib was mentioned in the letter following the consult.
Any advice would be great. Got to say the whole brain radio doesn’t fill me with delight so any comments from anyone who has been there would be helpful.
I am sorry to read that you are having such a difficult time at the moment, you may find it useful to know about some of the other support services from Breast Cancer Care for secondary breast cancer along with the support you will receive here:
There is a secondary live chat on Tuesday evenings, this is Breast Cancer Care’s online chat facility where you can talk to others in real time, it’s from 8.30 pm - 9.30 pm on Tuesdays. It is facilitated by an expert moderator and a nurse who are on hand to point you to sources of help and information, for most people, the chance to talk to others in a similar situation is what counts, again, for more information follow the link below:
The following link will take you to Breast Cancer Care’s publications about secondary breast cancer which you may find useful to read, there is also a DVD called ‘Living with secondary breast cancer’ which has been recently introduced, you can order these via this link or by contacting our helpline on 0808 800 6000:
I hope this information is helpful to you, please don’t hesitate to contact us either via the website or the helpline for more support and information.
Although I don’t have secondaries I am on the LEAP trial at the London Marsden (Lapatinib and Capecetibine combo) due to progression with my skin mets.
As far as I am aware the Marsden trial is closed but it may be worth giving them a ring. There is also a local trial in my area, started after the Marsden one, so perhaps your onc can advise you in this as your local area could possibly still be recruiting.
I’ve been on the trial since April and am having a good response so far. I had an appt with my local onc on Thurs and he was telling me that NICE will not be apporving the drug for general use (in West Essex) due to cost. So it looks like we could be facing postcode lottery probs similar to herceptin again.
I’m sorry to hear about your situation but the other drug you talked about could be Lapatinib.
I am about to start a new trial called ALLTO. I have had invasive grade 3 BC,full mx and recon. I am HER2+++ so after my op chemo and rads I was due to start Herceptin.But this trial was offered to me. It means I could be on a combination of the 2 drugs or either of them.I don’t know yet as it is randomised.
I was told the same as yourself about the brain barrier ,that is basically why I have said yes to the trial. Lapatinib is produced by GlaxoKline under the name Tyverb and has just become licensed in this country. In America it has been used for some time for people with secondaries. I am under the impression they believe this drug could be as good as or better than Herceptin.If that is the case I should imagine it probably will be a case of postcode lottery,unfortunately!
good luck for the future and let us know how you get on Jen x
I understand that Lapatinib(Tyverb) has NOT become licensed in this country because NICE have rejected its use here, even though GlaxoSmithKline offered to pay for the first 12 weeks use of the drug for ALL patients who need it. Apparently NICE has said it can be used in some trials - but what’s the good of that if they then won’t allow it to be used after the trial has ended?
I spoke to my research nurse on Tuesday and she confirmed that this drug has not been licensed by NICE. It seems to be a case of do the benefits outway the cost or vice versa.
In my case,my trial (ALLTO) I have been randomly picked for just 3 weekly Herceptin.
I’m sorry I can’t help with anymore info on copayments.Thank goodness the law has been changed though! May I suggest you look on “current topics” discussion board?
Has anyone ever considered the possibility of seeking treatment in another EU country under the cross border agreement? I know that Lapatinib is available in other EU countries and wondered if this was a way round the not so nice NICE decisions?
I know a lady (being treated privately) who managed to get Lapatanib - Tykerb abroad and I know you can get it in Switzerland, Israel and America. I’m not quite sure how she managed to get the prescription but I can certainly try and find out.
It’s available in most European countries, all of the above and Germany and France too. It’s only here of course that there are problems with the wonderfully named NICE - who are anything but! GlaxoSmithKline have offered to pay the first 12 weeks of Lapatinib treatment for any patient who needs it, but I think NICE have rejected that too. Maybe you can contact GlaxoSmithKline and ask them about it.
I found out that the person who was being treated had their oncologist (coincidentally same oncologist as me) give them a prescription for it and then the person’s son went abroad with the prescription to get it and bring it back.
Thanks for the information. Sorry for not responding sooner but I started WBR on Monday and have been suffering a bit since (mostly tired and throwing up!). Almost half way through now, with one more week to go. Missed Tuesday 'cos I wasn’t well so now I get to finish on the 24th which is my birthday…lucky me!
Ahhh Gill really sorry to hear how bad you’ve been feeling and I hope the next week goes quickly for you and makes a big difference. I will be thinking of you. Please let me know if you speak to anybody about Tykerb (Lapatanib) and if you need anymore help then maybe I can give you the name of my oncologist who this person got it through.
thanks for the thoughtd. Got anti-sickness meds that have really helped so now just really tired. Thanks for the offer. I’ll see how things go over the next few months and I’ll keep you posted
