This means if you have both Her2 and Oestrogen receptive cancer you wont get treatment for both - you can either have Herceptin, or an AI such as Letrozole or Exemestane.
Lemongrove,
I read that too, but I thought the conclusion only applied to first-line treatment and not to end of life teatments? I read about it here publications.nice.org.uk/lapatinib-or-trastuzumab-in-combination-with-an-aromatase-inhibitor-for-the-first-line-treatment-of-ta257/evidence-and-interpretation
Jenna
ps but I should add that I’m not supporting their decision!
Thank you Lemongrove for raising this. I am due to start Herceptin and Letrozole this coming Wednesday so it naturally got my anntennae tweaking.
However, as far as i can make out, the NICE guidelines apply to metastatic breast cancer only. I am currently being trreated for primary IBC and completed chemo last month. So will be interesting to see if there is any variation in my planned adjuvant when i go to hospital on Wednesday. I am part of the herceptin Persephone trial and have been put into the 12 month group and as I am 8/8 ER+, would be very worried to be withdrawn from Letrozole.
Will post back here after Wedneday.
I was diagnosed Her2 postiive and Oestregen positive in August 2010. I completed Herceptin in January 2012 and continue on Letrozole having commenced this early 2011. I will read this NICE information, however would be keen to hear from others who interpret this as a change to a primary diagnosis or is it for those with a secondary diagnosis? Best wishes to all. J.
Hi Lemongrove
Thanks for pointing this out. I’m HER2+ and ER+ and have lung mets, so looks like this could affect me in the future (currently having chemo and herceptin).
I’ve had a look at the NICE site. Do you know if there is a way of accessing (simply) or registering for info on recommendations likely to affect people with secondary cancer? Apologies for asking but would like to keep up-to-date and couldn’t see an obvious way to find relevant info. I suspect this may be due to my chemo-brain!
Thanks again for bringing this to our attention.
Della x
Jenna I’m not sure what you mean when you say you thought it only applied to first line treatment and not end of life. The link you provide is entitled " Lapatinib or trastuzumab in combination with an aromatase inhibitor for the first-line treatment of metastatic hormone-receptor-positive breast cancer that overexpresses HER2". People with metastatic cancer are in a sense at the end of their life. Are you saying that you think someone who is at the early stage of metastatic cancer, and is given either Herceptin or endocrine therapy, will be prescribed Herceptin combined with endocrine therapy when their disease progresses ?
By the way, if anyone feels this NICE decision doesn’t matter because it doesn’t effect them personally, as it only applies to those with secondary cancer should perhaps remember that around 40% of those diagnosed with stage 3 cancer will in fact relapse. This is not directed at anyone in particular, but I do sense a slight,’ pull the ladder up Jack’ attitude. Don’t we all have a common interest here?
Della, Hopefully your Oncologist will just ignore the dicates of NICE (mine tends to just do whatever he thinks is right and take flack from the powers that be). Re: how to get updates from NICE - I’m not sure (someone else may know), I just keep an eye on the NICE site.
Hi Lemongrove
This,for me, is a worrying post as I am currently having herceptin and exemestane - obviously because I am supposed to benefit from both lots of treatment being HER+ and oestrogen positive. Have recently finished chemo for liver mets and onc then put me straight onto exemestane (also having pamidronate for bone mets). I feel comforted with having these treatments to try and prolong my life for as long as possible but now it seems as though I will have to hope that my onc will ignore NICE guidelines and continue with all the treatments for me. Fingers crossed that she will as it’s hard enough living with secondaries without having to fight for your treatment as well. Will see what happens when I see her next month (but I won’t mention it if she doesn’t!).
Liz x
Am discusted to hear this, these decisions affect all of us whatever stage of DX we are at it doesnt matter ,is this the future of Cancer Care? ,its totall madness, here is a link for email alerts (though this is being phased out to RSS feeds shortly)from NICE to keep up to date if anyone is interested.
nice.org.uk/newsroom/nicenewslettersandalerts/nice_newsletters_and_alerts.jsp
Best Wishes Linda x
Cornish girl is right, these decisions affect all of us on here in some way or another - surely we are all in this boat together? i will write to my MP about it but don’t really know what more one can do.
cheers
carollne
Thanks Linda and Caroline - you have both restored my faith in human nature.
I think those who adopt the attitude, ‘I’m alright Jack, pull up the ladder’, need to remember that fortunes can and do reverse (and pulling the ladder up can leave people stranded). In my humble opinion, what we cancer patients should be doing is uniting to fight all this stuff. The decision to ban Herceptin in conjuntion with endocrine therapy, is just the latest attack on cancer patients. Not long ago it was Fulvestrant (Faslodex) that was deemed not cost effective. Add to that the changes to DLA, and the fact that the Government still wont fund stereotactic radiotherapy, when it’s own experts have said it could save in the region of 3000 lives per year, the whole thing is disgusting.
Thanks for link Linda.
I totally agree with the ‘we’re all in this boat together’ sentiment. I remember a few years ago when people had to fight to get herceptin and a group of women staged a sit-in at our local hospital - I’m very grateful to them now.
Lemongrove,
You have misinterpreted my post. I was simply adding some hope to the stark statement you made, which I fully appreciate was meant to be informative.
To say a comment like ‘pulling up a ladder’ as a response to my post but then add it wasn’t targeted at anyone clearly isn’t true is it? Perhaps you should have simply asked me what I meant, rather than post such a statement. How is that supporting others.
The reason I read NICE statements and follow developments is because I am looking out for other people, I feel so strongly about it I’ve joined a patient group to support others to enable them to navigate the NHS.
The situation is disgusting but rather than moan about it I’ve got off my aching bones to do something. Yes we are in it together, sorry my helpful comment was received in this way. I won’t bother posting again, this whole forum has changed since I started my treatments last year. The technology failures have driven away many good people.
Jenna
Jenna, please don’t take offence, my comments were not directed at you. I understand that you were only trying to reassure people with primary cancer that this decision wont effect them. My comments were directed at those who seemed to be saying that the decision was unimportant because it only effects people with secondary BC. In my humble opinion, this distinction is not helpful. BC patients at whatever stage need to worry about this, because there is only a hairs breadth between those with primary BC and those with secondary BC. The reality is that many people with primary BC subsequently relapse with secondaries ( it only takes a couple of cells to break away and pass through the blood stream), and then this decision will be highly relevant.
You and I agree that the situation is disgusting, and I don’t think we should argue.
Hi all
I did not want to get involved with the element of this thread which appears to be ‘getting at someone’ and since Lemongrove you say it wasn’t Jenna then I fear it may have been me. I certainly did not mean to infer that 'so long as I got my treatment, then I would ‘reel up the ladder’ and I apologise for those who interpreted my post in this way. I fully appreciate the potential for any one of us who have gone through the primary diagnosis and the resultant treatment hearing the news of developing secondaries. I, like many people, will either be living with that fear on a daily basis or have had that fear confirmed. Yes, we are all in this together and I welcome a healthy debate/discussion and action to preserve the best treatment provision being made available to all, wherever we are in the journey of what is often the ‘hell of bc’. I do not think such statements as yours where there is an inference of ‘man mind thyself’ is helpful. I was merely asking a question to one whom I know from previous posts is a great source of knowledge, the question and perhaps my wording was not specific enough to have it heard in this way. Once again, my apologies to those I may have inadvertantly offended, however I can assure you my intentions were never to do so. J.
Janek I wasn’t directing my comments to you either, so please don’t apologise. In anycase it’s probably me being over sensitive to a phrase used in one post, and as we all know, misunderstandings are par for the course on these forums.
Hi Lemongrove
I appreciate your posting with your comments. I think we can all be oversensitive at times. I know that BC has changed me so much and know that I can only imagine what living with a secondary diagnosis is like. Life is definitely never the same. Best wishes to all. J.