My mother has secondary bc (liver). she had herceptin the first time. now she’s had vinorelbine and capsitrobine and herceptin again. Her Onc has requested Lapatinib but has been refused it!!
I know it has just been licensed here but NICE are NOT receommending it due to cost Vs benefits. HOWEVER, Im sure there is a way to get it for her…
Any ideas???
I’m on the leap trial at the Marsden, lapatinib/xeloda combi. Not sure if they’re still ‘recruiting’ but may be worth ringing them to check.
Jackie x
Hi,
I had a similar problem with avastin. As long as onc has requested it, you are in with a chance. Write a letter to your PCT outlining all treatment your mum has already had and responses to the treatments. Ask why she has been refused as it was requested by her onc and say you would like to appeal against their decision. Chances are they will still refuse and if they do you send in another letter of appeal with copies sent to your M.P. and the health minister. Stress the decline in condition with copy of latest scan results.
It is a long drawn out affair but if she gets it it could give those extra months that are so valuable to us.
Good luck
Love Debsxxx
I also have a friend who is on the trial for Lapatanib/xeloda and we live in Cambridgeshire.
Sometimes a letter to the PCT can make them change their mind and I think sometimes it carries more weight if it comes from your oncologist who sets out in a letter the argument for why they think there are advantages for you having it.
Hi
I’m starting the ALLTO trial in December - that is Lapatanib and Herceptin. I have early BC and I believe the trial only started in February. By the way whilst reasearching this ,I have been told they will be using the name Tyverb instead as there is another drug in Italy which has a similar pronounciation.
The trial is being run by Glaxokline.Don’t know if it would be of any use- but good luck anyway.
Jennie x
Glaxo Smith Kline use both the names tyverb and lapatanib although tyverb is their registered trademark.
The trial using the combination of lapatanib and xeloda is, I think, for those with advanced cancer.
Hi,
You really should not have to but as a final final resort, if your or Mum can afford it, you can buy it yourself. I found a company.
I hope you find some way of getting the drugs she so deserves free of charge.
Good luck and local papers might be a route if she does not mind publicity.
lily x
Hi,
you can find companies selling drugs by searching on the internet but you would need to know exactly what you wanted as most come in from overseas. Or you could approach a private hospital as you would also need to have it administered and also patient care to be safe from potential first reactions, so caution should be observed to be safe. From personal experience some consultants are happy to help out here so worth asking. Some companies will only supply the drugs to research organisations due to legal restrictions or liability. I googled lapatinib sales and found quite a few but xeloda seems to be widely available as you would expect as available on the NHS. Another option is to book an appointment in somewhere like Toulouse or New York and some will let you fly them home. I read the Dina Rabovitch book and she brought drugs back from Sloan Kettering hospital in NY which were hardly known over here except by researchers. Sounds a safer option to me, if finances allow this. Such a shame we even need this conversation
Good luck
Lily x
HI damhead
I do hope that you can get some support from your oncologist. However we at Breast Cancer Care would advise very strongly against buying any drugs over the Internet as you are unable to judge their quality. In addition, all treatment needs to be administered by professional healthcare teams because of possible side effects and it can be very dangerous to embark on a course of treatment without this backup.
All the best
Ann
Thank you ALL.
I have been very busy…
Originally, the Onc requested it and was told NO, so, I called GSK and asked for them to pay 12 weeks for my mum because they said they’d do this for the NHS… they said NO of course! I have contacted a great Company called Healthcare at home and I can get a private prescription from Onc…so this will cost us about £65 per day plus nursing costs…not too bad but still a lot! ANYWAY meanwhile the Onc said she had an e mail from the trust saying that they are considering the request!!!
I had already asked for an appeal but i dont know if she’d actioned this.
I have written to my MP for support but…no reply yet…ill keep you updated.
Does anyone know how long a decision takes??
Meanwhile we are also waiting for an appointment at Royal Marsden: I spoke to them and asked to go there for a second opinion… awaiting reply …
Thanks for the advice…Ill write to the Primary Trust too
If we dont get it by Jan, we’ll just pay but I hear of some people going to Europe to get it once they receive a private prescription from here!!!.. any advice on this?
once again,
THANKS
Hi
for info, I got a second opinion at the Marsden about five weeks ago. Very positive and open discussion. Unfortunately, a week afterwards it was confirmed that I now have brain mets in addition to existing lung, liver and bones. I’ve just finished two weeks of WBR on Monday and I’m totally worn out.
I had written to the Marsden a couple of weeks back to update them on my condition, especially as the onc had mentioned Lapatinib as a future treatment option if it became apparent that herceptin wasn’t working anymore. My own onc has already requested this three times without success, but has said he’ll try again for me when the time comes.
Anyway the point of the email is to let you know that the Marsden wrote back saying that all suitable trials have been closed (lucky me!), including the LEAP programme you mentioned. I think the ALLTO trial that is ongoing is for primary?
best wishes for your Mum.