Hi everyone
Just trying to find out a bit about this drug. Mostly what I know about it is that NICE hasn’t approved it - but I am having trouble finding out much more.
Reason I need to know is that I have been on herceptin very successfully for four years, for secondary tumours that are now no longer visible anywhere in my body.
Unfortunately however I have now developed a completely new primary in my remaining breast, for which I had a second mastectomy last week. Bizarrely this new tumour is both hormone positive, which my original tumour nine years ago wasn’t, and Her+. The Her+ bit has really confused us all because I was on herceptin when it developed, so we are guessing that for this tumour at least it wasn’t having much effect!
Anyway, to cut a long and complicated story short my onc is talking about the possibility of getting me onto lapatinab as an extraordinary case or through the private health insurance I have with work. I don’t know if we will be able to do this but I guess it might be possible if she thinks it is worth a try.
Her reasoning is that normally she would put someone with a her+ primary tumour onto a year’s worth of adjuvant herceptin - but obviously that is not working for me - and therefore lapatinab might be my best bet.
Has anyone ever heard of lapatinab being used in this way before? And has anyone had an experience of the drug, ie side effects, efficacy etc?
Any information would be very much appreciated as I fear we are entering into unknown territory!
Thanks a lot
Justy xx
Firstly, lapatanib can only be usedin conjunction with capecitabine, so I have no idea how feasible this is for you. I had 5 cycles, and suffered the most horrendous side efefcts-it didn’t work for me, and I have to say, that I was almost relieved to stop taking it. I don’t know if I could have coped with any more. My feet were such a mess, that I could scarcely stand, let alone walk.
I certainly haven’t heard of it being used in this way-but it would do no harm to explore the possibilities.Even if your private insurance covers it, they will limit the number of cycles you can have, as it is still prohibitively expensive.Sorry I can’t be more upbeat aboiut it-but there are very few people around who have had it, so thought it best to add a few comments. I must say, my onc checked FIRST with my health care provider,to see if they would agree to this, before raising my hopes. Am so sorry that you are finding yourself in a situation where your onc isn’t fully up to speed with what could or couldn’t be feasible for you. Good luck!
Hi Justy
I was diagnosed in left breast with Her2+, hormone -, had 8 chemo then mastectomy and immediate recon, then again in right breast Sept 09 had immediate mastectomy wasn’t allowed recon, had no chemo then was diagnosed in left chest area again Dec 09.
My ONC referred me to the Royal Marsden and I was taken as an NHS patient. I was accpeted onto a trial for Lapatanib and new drug Pazaponib, it worked the 1st month but as my liver levels were too high they reduced the dose and cancer started to get worse on chest and started growing in lymph nodes in stomach and 2 tumours in liver, also have a couple shadows on lungs.
I had no problem with this drug or had any side effects, I could actually see the cancer on my chest disappearing the first month.
I was really disappointed that the trial didn’t work for me but heard that of the 10 of us on the trial in the UK it was having good results.
I am now getting treated back home in Glasgow with Capecitabine and Herceptin, haven’t long started so don’t know yet if it’s working.
I’m nearing the end of my second week and I am totally shattered could sleep all the time and have lost my appetite. Apart from that no other side effects as yet.
I would say as you prob already know everyone is different so not everyone gets side effects or extreme side effects.
Although Herceptin doesn’t work any longer my ONC said that the evidence says it’s better to be taking it that not at all.
If you can get Lapatanib i would say give it a try.
Sharon xx
Thanks that’s all very interesting to know about - especially your experiences Sharon, what a shame about the liver.
I am thinking about getting a second opinion at the Marsden in case they have any other options up their sleeves. I may well do it, depending on how convinced my onc seems when I next see her - and depending on whether we can even get lapatinab of course.
Staying on herceptin anyway is another course of action and I will also ask her about that.
Take care everyone and thanks for the help
Justy xx
Hi Justy,
I am currently on capecitabine and lapatinib. Provided throug private health insurance. My onc is talking about two more cycles with the capecitabine and the going it alone with the lapatinib. I am on hormone, targeted and chemotherapy so it’s hard to tell which side effects come from which drugs. However, I do find incidences of diahorrea increase when I am on my off week from the capecitabine.
Please let us know how you get on.
snoogle
x
Hi Justy
I was on Capecitabine/Lapatinib for about a year. I found it easy to take with minimal side effects except for sore fingers and toes which wouldn’t heal. It was very effective at first but did eventually stop working.
I have private health insurance and there was no problem with them financing as many cycles as I needed. As far as I am aware Lapatinib is only licensed for use with Capecitabine unless anything has changed. I think I’m right in saying that it hasn’t been approved by NICE because they say it is not cost effective
Hope that’s helpful and good luck
Barbara x
I’ve just start my round of treatment Lapatininb/Capecitabine. And so far, after 3wks , a sore mouth and a few extra trips to the toilet 
I know its early days but I feel fine. My only PAIN is that I have to pay for Lapatinib and any tests related to it, ie heart scan!
I wish you well and good luck X
Remember a woman is like a Tbag, you never know how stronge she is till you put her in Hot water!x
What a brilliant saying re the T-bag, must remember that one!
I have just started my 4th cycle of Cap/Lab and so far have found it very doable - no probs with feet just a couple of tiny paper cut type splits on a few fingers which heal during week off. I have had some tiredness, nausea and diarheoa but nothing major so far. I am trying to capitalise on the lack of appetite to try to loose weight but I seem to make up for it on the week off! Don’t know yet if it’s working, but really hope so cos for me it seems very doable. I have got Lapatinib through AXA PPP private health care but they have only agreed 6 cycles so far.
Good luck Justy
Linda
HI everyone
Well I did get the Lapatinib (sorry spelt it wrong first time!) - Aviva has agreed to fund it with capecitabine for a year.
I am starting the tablets today, so I am a little nervous about what the next few weeks will bring. I already have pretty poor fingernails and splits around them/cuts due to previous treatments so I am expecting that to get worse, and when I was on capecitabine before I got horrible tummy troubles after a couple of months.
Also, I do not really need to lose weight, and last time I was on Cape I couldn’t taste anything and stopped eating (and drinking alcohol!), so I am currently trying to eat as much cake etc as I can and savour every moment!
My onc says that if the side effects are bad she can reduce (or even take me off) the cape for a while - so fingers crossed that this will all be do-able and will work and I can try to get back to some kind or normal life for a while!
Thanks for your advice everyone - any more lapatinib stories would be great and I will post how I get on!
Justy x