As an ex-member of the lapatinib (LEAP) study (now closed) I can testify to the beneficial use of lapatinib and capecitabine (Tykerb and Xeloda for anyone viewing the US website for HER2+ breast cancer). I reversed and delayed progression of my brain tumours for 12 months with relatively few side effects. Lapatinib has received a UK licence and can therefore be prescribed privately but as I understand matters it is rarely covered by private health insurance (as it is in tablet form)and is expensive as already mentioned. It is interesting that it is the subject of a trial as a preventative treatment in the same way that Herceptin was (I was also on the HERA trial which resulted in the outcry for the use of herceptin asa preventative treatment). I have been told that certain NHS Trust's are making Lapatinib available and it is being prescribed.
Lovely to hear from you, so pleased things are going well.
Sounds like your new onc will keep you more informed, so ggod luck.
I'm doing Ok, thank you for asking.
Had a bit of a day with the Marsden today, lots of phone calls and an irate trial nurse, Grrrrrrr
Never mind tomorrows another day!!
Keep in touch,
I am on the LEAP trial taking Lapatinib in combo with Capecitabine. I am now on cycle 14 of this. The rash is a common problem with lapatinib and my research nurse has tried lots of things and now recommends Metronidazole gel on the skin and also an antibiotic called Minocycline (Acnamino) which is taken for one month when you first start taking lapatinib and then as directed if necessary. It certainly worked for me. I also take an antihistamine tablet (Cetirizine) every day which seems to keep the rash at bay. hope this helps.
Hi Mabel, just found this thread again. Thanks for asking after me. I've had some strange red marks appear at my bra line and as this site was down I went to the GP. Apparently it's only radiotherapy damage (from over a year ago) but I also asked to be referred to the Marsden for a 2nd opinion. He said that there was nothing to be gained by this as I was having the correct treatment but the problem was lack of communication from the onc team. However I have now been given the name of my new onc (seeing him next week - old one retired)and been told not to ask questions I don't really want to hear the answers to as he is very open. I even had a chat to another new onc while having pamidronate and she has told me where my mets are. So quite a refreshing change. Just need to work out now what I want to ask the new onc.
Hope you are keeping well.
I've not had a rash on my face though I have read of others that have, especially on the HER2 site.
I occasionally get the odd red mark on my chest which disappears after a week or so. I have been taking 5 x lapatinib since April 08 (along with the xeloda)
I had an itchy rash all over - it started behind my ears then covered my face before moving all over - it lasted about 3 weeks but taking piriton helped. they reckoned it was an alleregic reaction.
Now though ive developed a massive inflammed area round the area of the mast scar - plus feel like ive been kicked in the ribs. went to hospital yesterday - got some antibiotics and painkillers (not that they seem to have touched the pain yet.) it seems to be one thing after another. yet on chemo & rads had no problems. oh well
I too am on the lapatinib trial i started in dec 08, i got the arm 3 which is 12 weeks of herceptin at weekly intervals then a 6 wk break and a wk and a half ago i started my 34 wks of lapatinb,so far i feel ok but have had a rash on my face with is quite spotty and they dont't know how to treat it yet. Has anyone else had simular, oh by the way my cancer was ductal not ibc.
How are you doing? Did you get a second opinion or change your med team?
Thinking of you
Allto does not seem to be the only trial for lapatinib. Try going to http://www.clinicaltrials.gov and searching on lapatinib, united kingdom, breast cancer and you will see that there seem to be about 8 different lapatinib trials recruiting, although they are for very different things. This is worth a shot. I once found a trial there for someone who sister was desperate for lapatinib as a last chance option for brain mets and her sister was accepted on to the trial. I was really surprised and very annoyed because I thought that if her sister's onc hadn't suggested it then there must be a reason. I would warn that sometimes that database is not updated that quickly, but Glaxo has committed itself to registering all of its trials publicly (not all companies do, which means that bad trial results can get hidden more easily, so Glaxo's stand is an unusually ethical one).
The expanded access program for lapatinib, clinical trial NCT00338247, seems to be 'active, not recruiting' for the entire UK.
I would also caution that so far they haven't found a brilliant use for lapatinib. If lapatinib added years on to the lives of metastic patients, it wouldn't have a problem. Cost is only half of cost effectiveness, although at least lapatinib does add on a few months and is not too hard on the body. They may find a use of lapatinib that does add on extra years, but they haven't done it yet. I should add that all of these drugs seem to be much more effective on primaries.
I have vaguely been paying attention to the chatter on her2support.org and there seems to be some excitement about Genentech's improved herceptin DM-1 (although you might want to check what people on the trials have been saying, since this isn't something I follow closely). There is a trial of this in the UK, but it seems only to be in Banbury and you cannot have had chemo for metastatic breast cancer. It is clinical trial NCT00679341. There may be other options. I just wanted to point out that lapatinib is not the only thing in the pipeline, so look around. I think that you can also get updates sent to your computer through an RSS feed and, if you need more options do pay attention to patient experiences on her2support, since they can give valuable insight into whether a drug trial is worth it in terms of quality of life.
I don't know why oncs don't publicise how to find out about clinical trials. You would think that oncologists would want patients to join trials both so that patients could have more options and to speed up the research a bit.
I believe the only open trial for lapatinib is the ALLTO trial?
I'm in a similar situation with secondary progression on herceptin and had been "shopping around" about lapatinib. Being treated at the beatson in glasgow but have been to the marsden for a second opinion. The onc. at the marsden suggested lapatinib but couldn't help out. He has already made exceptional requests for lapitinib without success. My own onc. in glasgow has had a similar experience (0 for 4).
With the NICE decision it is unlikely that it will be generally available in the near to mid term (I hoping the SMC have a different view). If anyone hears otherwise....
I'm so sorry you have been refused the Lapatinib.
I too have had a recurrence, within 3 months of finishing rads, very scary and frustrating. To go through all that treatment only for the b****y thing to reappear so quickly is a nightmare.
I was also on herceptin when I had my recurrence.
At the Marsden I qualified for the LEAP trial due to herceptin failing and progression of disease. Are there any trials locally? Or ask for a referral for a second opinion to the Marsden, they are usually the first with new treatments.
I am reading all of these posts with great interest.
I have just been refused funding for Lapatinib by the PCT stating that, in my circumstances, it only has "modest benefits and is not cost effective". (I was dx with a Grade 3 tumour, HER2+ in May '07, had chemo (AC & T), surgery (single mastectomy) and radiotherapy, followed by Herceptin (ongoing). I found a lump below my scar in November '08 - another Grade 3 tumour. I had surgery last Thursday and see my oncologist next Tuesday for the histology/plan of action.
At the moment I feel quite fearful of the future - I hate the vulnerability that breast cancer causes, you are totally dependent on others making the right decisions for you and they are also holding the purse strings.
If that 'modest benefit' will keep me alive to see my children grow up (I have one aged 6yrs and two aged 3yrs), then I want the treatment please!
Best wishes to all of you taking this drug - I sincerely hope it works for you.
Hi I too am on the Allto trial - I got the arm which gives 52 weeks of lapatinib and 3 weekly herceptin for a year. All seems good so far. can only see it as a positive thing double whammy!
Hi all, this makes fascinating reading. Just wanted to let Jolandy know I have IBC and have not had surgery. Really not sure if its the right decision but it is where my path has taken me. Hope it is of some conselation to know you are not the only one
Sorry forgot to mention in my last comment that Lapatinib also covers the brain whereas Herceptin does not so again this is another advantage to taking this drug, Glaxo SmithKline are the sponsors of this trial and the trial is at stage 3 testing which means it is at the last stage of testing just before licensing.
The only disadvantage is you cannot eat Grapefruit whilst you are taking the drug as it interferes with it. You have to also be careful about any herbal over the counter medicines as they can also affect the drug. These appear to be the only negatives that I can see at the moment but are very minor in the great scheme of things.
I am amazed at the response to this and glad now that I have mentioned it ! My criteria for being asked to take part in this trial was the following : Diagnosed in June 08 with stage 2 and 1 lymph node involved, HER2 positive. I had a mastectomy in June 08 and thankfully was advised that they had got down to clear margins. I have had 6 sessions of FEC chemo which I finished in Nov 08 and have now finished 25 sessions of radiotherapy (finished last Wednesday). I was due to start the Lapatinib last Thursday but then it came to light that I had been taking Evening Primrose Oil Capsules for my hot flushes, and I needed to be 14 days clear of these as they interact with the Lapatinib, so I will start the drug next Thursday 29th Jan. I am also taking Tamoxifen. Once I am prescribed the drug you also get a print out of your treatment plan for the next year, as it involves taking the drug for 52 weeks and having more indepth regular scans and check ups which I can only see as a positive thing - Just hoping I have made the right choice, but going by the statistics in USA in late stage it seems to be a very good drug.
I understand that the trial is still open and numerous hospitals are taking part. If you GOOGLE in the ALTTO STUDY it will take you to the formal tiial page where it gives you contact information and who is taking part and who is still currently recruiting for people to take part.
Hope this is useful and wish you all the best - I will keep you advised on any further information that I find out.
As far as I'm aware the trial at the Marsden is closed, might be worth giving them a ring to check this. However, I think I said previously, my local onc tells me they now have the trial too so it's possible your local area may be running one.
Hi, I have IBC and was on Herceptin for a year. However I was found to have bone secondaries just before Herceptin finished. An interested to know whether this trial is still open or if it's likely to do me any good. I have no faith in my currect medical team (I think my oncologist may have retired recently - although no one has actually told me) and feel that I would like to be under the care of someone who has more experience of IBC. I didn't have surgery - and from what I've read on the internet now - everyone with IBC has surgery.
As I understand it, one potential advantage of lapatinib over herceptin is that the molecule is smaller and therefore it can cross the brain-blood barrier to get at any cancer cells that migrate into the brain in a way that herceptin cannot. Also, it targets two types of receptors, not just the her2 one. As I vaguely recall, there was some hope that it might be better for inflammatory breast cancer that is her2 positive than herceptin is.
Lapatinib was not approved by NICE for late breast cancer in the UK on economic grounds, but drugs are often much more effective in early stage breast cancer.
If you want to find out what life is like on lapatinib, you might try her2support.org, a U.S. site, for the obvious reasons that more people on that board will have had it. They even have a special board for people on clinical trials.
I've been on the LEAP trial since April 2008, Lapatinib/Capcetiabine. Am having a good response so far. My trial is at the London Marsden and I understood that herceptin had to have failed in order for me to get on this particular trial.
dont know if this will help but I believe you have to be her2+ for lapatinib it was one of the 2 drugs I was interested when I started campaigning for avastin.
I don't know about Lapatanib but am very interested in the trial you are on - have you already had another chemo before this, or is this the first? Are you hormonal receptive or just Her2?
Thought I would give you an update on my query over when herceptin should have started. I have now been 'randomised for the Allto Study' and have been given the new drug 'Lapatanib' to take over a period of a year.It is taken in tablet form. I have been advised that this drug is being used already in USA for late stage breast cancer with very good results. Glaxo Smithkline are looking at licensing it for early stage (which is what I am). I am a little aprehensive and pray that I have made the right choice.
Would be interested to see what others think.