Anyone on Lapatinab?

Been reading and hearing a lot about lapatinab and how it can help with keeping brain secondaries at bay … anyone know anything about it or is anyone taking it?
Sue x

Hi
I have tried quite unsuccessfully to get on this trial!!!
I can’t remember if Lisa is her2+. The basic criteria is that you’ve had chemo such as an anthrycycline like epirubicin /doxyrubicin and a taxane like taxol or taxotere and herceptin and they have all failed to keep the cancer at bay. It is therefore only given if HER2+ and there are only a few hospitals doing the trial.
If you search the site there are a lot of threads about it.
Sorry that doesn’t sound terribly positive does it - sorry about that. Have swapped pain killers and brain all woozy so finding it difficult to write.
Hope all going well - keep thinking about how you all are
kate

Hi

I have been on Lapatinib and Xeloda via trial since October 2007. Secondary brain tumours since March 2005, WBR, craniotomy and recurrence last September. My last two scans show in remission so at the moment quite positive results. Need to be HER2+ for Lapatinib. I have been told that it should be licenced here very soon but then a case of NICE approval. I understand that the trial which I am on is open until the licence is given.

Hope this helps

Terri

Hello,

I have looked up this information on Lapatinib, I hope it can be of some help;

Lapatinib is currently awaiting UK license and then will be appraised by NICE (National Institute for Health and Clinical Excellence). A decision as to whether it is approved is expected towards the end of 2008. Until then, it will usually not be given unless as part of a clinical trial or as an extended access program recommended by an oncologist.

Below is a link to Cancer Reseach UK website, which details information about the ALTTO trial, which is the one I think you refer to, it gives information about which centres are running the trial, and contact details if you would like more information.

www.cancerhelp.org.uk/trials/trials/trial.asp?trialno=10474

BW’s

Tara

Clinical Nurse Specialist

Hi

I was offered the trial of this drug at Royal Preston Hospital. The trial is for primary breast cancer and HER2 positive. Apparently Preston is one of 5 hospials trailling it. I was in such a whirl as to whether to go on the trial and researched it and found that it is a very good drug but I just couldn’t say yes to the trial. Feel guilty for not giving it a try but went with the Herceptin. It was a 4 arm trial and I said if I could guarantee having the Herceptin plus the Lapatinib then yes I would. I asked the oncologist what would they do and they said they didn’t know. They hadn’t been involved in the other trials and didn’t know a lot about it.

I hope I made the right choice. Apparently Herceptin doesn’t “protect” the brain but the Lapatinib does. I would prefer if the cancer did come back it was in my body and not my brain but think that at least the Lapatinib is there to try.

Liz xx

Thanks for answers. Lisa can’t be HER+ because they said she couldn’t have herceptin. Its just that we heard of someone at Lisa’s hospital who had brain mets and has been on Lapatinib and still here after 3 years. I also read about it on Inflammatory Breast Cancer site and they have had good results so far with IBC trials. Lisa has IBC. Looks as if she can’t be considered for it then if not HER+.
Just grasping at straws I guess!
Sue x

I think we are grasping at straws and who wouldn’t in our situations!!! I feel part of the problem is that the media can hype things up as a ‘miricle cure’ without explaining what type of bc it works on. Maaybe that’s a bit harsh but often they make it seem so easy if you get hold of this or that and people get their hopes up only to be dashed.
The other thing is some sites are based in the USA and so treatment available there is not always available here.
Lisa seems so brave and is using her energy on things she enjoys. Hope this continues for a long time. As I said before, you sound a wonderful mum with a wonderful daughter - life is so unfair.
Kate

lapatinib,
i am currently taking lapatinib as clinical drugs trial, have had some side effects, fatigue , breathless, flu like aches and pains and rash, but after 8 weeks they have got worse, consultant stopped the drugs and i am curretly having scans and blood tests to make sure the breast cancer has not spread, i had masectomy 1st feb , i have found it very draining and was starting to doubt that my energy and get up and go will ever return,
i have my bone scan next thursday and hopefully results of all tests and scans friday, radiotheraphy has been put on hold till results, but my consultant thinks he will with draw me from the trials and i will have to go on herceptine as i am her2 positive, and was told that the new drug make give me a better chance of the cancer not returning, mind works overtime with every ache and pain 2 and 2 makes ten, taking pain killers every day till we know why i am in so much rib back and groin pain, sound familiar to anyone, i am fearing the worst
didley

Poor you - Didley. that sounds very scary. You must have been through so much in such a short space of time.
Really hope it turns out that it was some kind of allergic reaction rather than it hasn’t worked.
I’ve tried twice now for lapatinab - 1st time ytold too well and 2nd time too ill.
Got no other options now other than recyclled chemo or trial drugs as had all routine chemo and think my consulant will just withdraw treatment, like he wanted to in Dec07. Had a good few months since then with good results for me (would be consdiered poor for others - my bc is so aggresive) after I got him to give me the Gem/carbo though. i just get tired of fighting the system but want to live a bit longer please.
It’s horrible waiting for scan results and every pain seems twice as bad then even if you do get bad news at least you know why and can do something about it.
How did you manage to get lapatinab without having herceptin first or have I got this wrong? Just interested as was told lapatinab would be licenced July 07 and then nov 07 and now no news when.
Wishing you luck on friday and I’ll look out for your post - perhaps on a new thread so I don’t lose it - I seem to keep missing some threads and miss out on news of people.
Kate

Hi Kate,

Just to say my understanding of the criteria for lapatinab was that herceptin should have previously failed too.

I was not elegible for the trial in Nov due to lack of progression, however it now looks as though my skin mets are progressing. I have a CT scan on Thurs and See Dr J at the London Marsden the following Monday to discuss the trial again. It is due to close very shortly so my tests have been brought forward.

Jackie xx