Hi everyone, I have been following some of your threads and found that there seems to be a wealth of info out there that you are all so happy to share - FAB!!! My mom was diagnosed with breast cancer 5 years ago now, had mastectomy and 8 months of chemo and was given all clear. In Sept 2006 her markers started to increase and we found it had spread to liver. She started Herceptin and chemo and was going along nicely until a few weeks ago she developed bad headaches and dizzyness and lo and behold we were informed it had spread to brain (and a bit in the bones). She then underwent some radiotherapy and is now maintaining on Herceptin. Her Onc wants to give her Lapatinib and has secured a source but our Insurers are refusing to pay as it is not yet licensed by NICE. We intend to fight this…I am interested in hearing from anyone who is currently fighting for this drug also…
Hi Shoequeen (like the name :))
Sorry to hear about your mum, what a worrying time for you both. I dont have direct experience of this - have been on herceptin for a few years now but I know there are ladies here who have got on lapatanib thru the trials. The were scheduled to come to an end recently but I think have been extended. I know the Royal Marsden are doing them, and I think a hospital in Nottingham. Obviously it would mean getting back into the NHS system and I don’t know how easy that would be.
I am sure the other ladies will be along to add their advice on this but I will try and contact them as well to tell them about your post.
dawnhc
Hi Shoequeen,
I am on the lapatinib trial at the Royal Marsden, but my local oncologist told me on Thursday that they are starting the it at my local hosp too.
I understand that the trials have been extended due to NICE dragging their heels re the licencing and that the they will keep being extended until the licenceis approved.
My treatment is NHS so i cannot comment on private insurers but would suggest your Mum speaks to her onc about this. The criteria are ; progression, and herceptin having failed previously, I believe there is a timescale between last herceptin and starting lapainib due to possible heart problems.
Good Luck,
Jackie
Some hospitals around the country have been running the trial as well (ours have as part of the Royal Marsden Hospital) so it might be an idea to ask at your hospital.
Like Jackie says though I only know of NHS not private options. My friend was on the trial here in Cambridgeshire.
Pinkdove
Hi i have been fighting for tykerb for 15 months they keep saying it will be licened soon but never seem to get any closer. i have just been told i have it in brain too and also have it in my bones.if i had this it might of stop it going to the brain ! good luck let me no how u r doing
Hi Shoequeen
I was fighting for avastin and my trust eventually gave in. Hope this helps. I f your onc wnats to treat you with it he has to back an application to the trust. Write them a letter asking for the drug when you get refused send anither letter appealing their decision. You can ring and ask when the appeal will be saying you would like to represent yourself. They will try and put you off but just dig your heals in. Contact your local paper and with any luck they will help put pressure on them. If you need anymore help just ask.
Love Debsxxx
Thank you all for your comments so far…will keep you posted. We are appealing to the Insuers first and foremost as they seem to keep changing their minds depending on who you speak to on what day. Id on’t think they have a clue how their dilly-dallying affects the people directly involved. Mom has just gone to Spain for a few days rest. Her Onc was quite happy to let her go as she felt the benefits outweighed the negatives. I feel funny not having her around to watch over all the time…my parents only live 6 doors away from me and it is great being able to see Mom for a coffee after work…Missing her much…have a good weekend all…will catch up soon…Dawn xx
Hi Everyone - just wanted to let you all know that we had an email direct from Glaxo Smithkline last Friday to say that Lapatinib had finally passed all its testing and wouuld be licensed THIS WEEK!!! Hurrah for everyone who needs it!!! Mom will be starting hers in 3 weeks time in conjunction with Capcetabin…only down side being that, Cap causes her to have extremely sore hands and feet. I hope everyone that needs Lapatinib will be able to get it. Lots of Love Dawn xx
Hi was just going to say that I thought I had read somewhere that Lapatinib has been licenced.
I was told by the research people at my hospital that Herceptin doesn’t protect the brain from cancer but Lapatinib does so I really hope it helps your mum Dawn.
Love to you
Liz xx
Hi Dawn
brilliant news hope all goes well with your mums treatment.
I was on capacetabine for 2 years got my hubby to rub my feet with e45 cream I still have baby soft feet.
Love Debsxxx
Hi all
Now tht Lapatinib is licensed does this mean it is available now on NHS . I have meeting with onc tomorrow and last meeting was not good. I was in middle of rads for brain met and she told me there was a problem (with heart due to herceptin) on last echo and I needed to go on heart tabs and also asked me did I want to leave the body scan which was due, in case there had been any growth and then I would have to decide if I wanted more chemo ( finished taxotere end of feb). Came out of meeting feeling very fragile not knowing where I was up to.
If Lapatinib is available on NHS now can I refuse other chemo and still be able to ask for this, don’t want the side effects of chemo if it is not tackling brain met which is now my main priority?
Plus am I right in thinking Lapatinib is not a chemo but more like a herceptin?
Thanks Liz x
Hi Liz
cant answer all your enq but if lapatinib has been passed it should be available and if you ask your onc if he thinks it would work for you if his answer is yes then you tell him you would like to start the treatment asap.
Good luck let us know how you get on.
Love Debsxxx
Hi debs
thanks for that and for thanks for bringing attention to our plight I really respect you for it
Liz x
Hi Liz
you are very welcome.
I think you are doing the right thing re your children it wont be easy but it will be honest. It is always best for them to hear it from you.
Hope you dont mind me passing a comment I know its on the other thread.
Love Debsxxx
Although lapatinab has been licensed it has to be agreed by NICE for general use on the NHS so some private insurers may give it but trusts are not obliged to give it to you. I think NICE do not want the same situation they had with herceptin with some trusts giving it and some not so will look at this issue quickly. I think it will depend on th final results and the cost vs quality of life debate that NICE looks at in endorsing a drug for use by the nhs as a whole.
My ever depressive onc does not think NICE will approve it as it is even more expensive than herceptin and although does extend life it does not fit into the cost criteria for cost of drug and the value placed on a life. Just hope he is wrong
Love to you all
Kate.