Just seen this article on the Guardian website about lapatinib…
guardian.co.uk/lifeandstyle/2009/oct/21/women-denied-cancer-drug
Theresa
Hi, I read this news with a heavy heart yesterday. There are various lapatinib trials I’ve looked up for friends, I’m not her2+ myself, but the trials always have specific requirements so many will not be able to take part.
x
I managed to get a comment published on the Daily Mail last night saying how unfair I thought this decision was - especially as the press is full of stories about how much is being spent on that man who is 70 stone.
I went to a NICE (nasty) conference last year while they were very keen to say say how much help and support they were giving gp’s in updating computer know how each time a cancer patient wanted to ask them about funding they just wanted to move on!
I would like to check their expenses and I would not shut up and did tell them they were not cost effective. We have to keep on standing up to these people.
Love Debsxxx
This is absolutely unfair. I’m a private patient and I took lapatinib together with capecitabine effectively for about 15 months. You can’t put a price on life, every extra day is precious
xx
Am gutted to read this, especially given their recent changes that disallow Herceptin for those who have shown progression on it. There’s no back-up option now. I am hormone negative, so HER2 targetted therapies were my only saving grace, even though HER2 cancers are more aggressive.
It’s so hypocritical given the rubbish they spouted earlier in the year about helping those with terminal illnesses. I just feel that women’s lives don’t count. Why is this on offer in other European counties and not here? Can we not travel to these countries to get it if our government/healthcare system doesn’t provide the treatment (under reciprocal healthcare agreements)? Is it not a human right? Perhaps they should just prescribe a frigging gun and we can finish the job off ourselves, at a much lower cost. Sorry, ranting, just livid.
xxx
This drug isn’t suitable for me, but like you ripley, this makes me so angry.
Yes, it’s expensive, but they are talking about 2,000 women a year needing it. That’s not many. It’s affordable, it really is.
If European countries see value in it, then why not NICE? A life is worth much less in the UK, it seems.
It must be heartbreaking to be an oncologist in good old GB and NI working with one hand tied behind your back by faceless bean counters.
And even more heartbreaking to be the patient.
2.7 extra months was it? That IS a lifetime from where some of us are standing.
Shame on them.
X
S
If you are in a terminal situation there is an awful lot you can do in 2.7 months. As well as spending time with everyone you need to be with, there is all the stuff like putting your final paperwork and affairs in order, taking care of sorting out your funeral etc. The people who run bodies like NICE just don’t get it do they? Personally, I think Oncologists who are trying to do the best by their patients have such a hard job. I was diagnosed not long before it was passed that women with early stage Her 2+ BC could have Herceptin. When my results came through my onc said “I am pleased we are now able to offer you this treatment”. I often think about the women who didn’t get it and who sadly didn’t make it.
I have just read this article…in The Guardian. I know of others who have had much longer than the 2.7 months quoted by NICE.
Jo Waters, 55, was diagnosed with breast cancer in 2002.
“I had a mastectomy, chemotherapy and radiotherapy,” she said. Then she had six cycles of Herceptin. It appeared to work. "I had two years of remission.
“But then the cancer came back in the sternum and the lymph nodes.” Another year of chemotherapy and Herceptin – but this time together. “I had three weeks of treatment, followed by one week off,” said Waters, who lives in St Lawrence Bay, Essex.
After one year she had to stop. “Your veins get very badly hardened in the end, from the chemotherapy, and it becomes very difficult for the doctors to give anything intravenously.”
In autumn 2007 she was put onto a combination of Capecitabin, a chemotherapy taken orally, and Herceptin. After six months this treatment was found to have failed.
The outlook was bleak. “I thought I had possibly a year at most.” But by then she was eligible for the medical trial of Tyverb. She takes Tyverb and Herceptin tablets every day. It has transformed her life, she says.
“I don’t have to go to hospital every Friday any more,” she says. “So I’ve gained a day a week of my life back. On Tyverb, you don’t lose your hair, you don’t feel sick.”
Waters knew the drug might give her a little extra time, but had no idea it would work so well for her. Eighteen months on, her cancer is stable. She is bemused by Nice’s decision not to license it. “I can’t understand why it isn’t a cost neutral switch. You no longer need to pay for oncology nurses, chemotherapy drugs, and hospital stays. That’s a massive saving.”
She feels so much better that she is able to do a full time job as a secretary in London. “I get up in the morning, take my tablets and go off to work. The psychological difference is huge. It doesn’t seem quite as devastating. Now I can go quite long periods of time without giving my cancer any thought.”
It has made a huge difference, she says. “It’s nicer for the family, because I look so much better. If you walked past me on the street, you wouldn’t think there was anything wrong with me at all. People aren’t walking on eggshells around me all the time any more; people treat me like myself. And I still do all the housework, the gardening and painting.” In fact she felt so well, she was able to enjoy a skiing holiday with her husband and two children.
Belinda
Thank you so much for posting that uplifting story, as I am about to start capcetabine and Lapatinib, I was disappointed to read the poor statistics but stories like these give hope that it may be better drug than NICE would have us believe.
Linda
x
That is why we have to stand up for the right to try these treatments they won’t work for all but for those that they do money should not and must not be an issue.
Love Debsxxx
Good Luck with your treatment Linda…I think it’s been proved to be a very effective combination in the States.
x
I am currently on Herceptin but onc is talking about putting me on Lapatinib (Tyverb) in conjunction with Capcetibine as my bone mets are getting worse. Also have a lung drain in (2 years in June) after pleural and pericardial effusions and nothing has dried up the fluid so perhaps this could work.
I was briefly on 3000mg of Capcetibine with Herceptin (about 4 months) but gave it up as it really affected my hands/feet and also felt very depressed. Perhaps it was coincidence but when I stopped Capcetibine tablets I felt fine again.
I really am in two minds about the new regime as am dreading the Capcetibine. Wondered how anyone is getting on with this combination, also if you can have Lapatinib on its own. What amount of Capcetibine do you have, the chemo nurse told me it would need to be 3000mg.
Thanks
Hi, just wanted to wish you Good Luck, think I’ve already mentioned it on this thread, I’m her2- but I’ve been on capecitabine for 2 years now. I have bone mets that were diagnosed in 2003. For me, Capecitabine has been a very tolerable chemo. I have 2x 2,000mgs a day (so 4,000 mgs in all) The dose can be lowered if you are struggling and then upped again. I use Udderly Smooth cream on hands and feet…would definitely recommend using any cream from the very start before any problems. If you’re interested and google Udderly Smooth you’ll find lots of stockists…lots of us capecitabine users seem to find it a good cream…Good Luck, I hope the combo works well for you…xxx