I caught side of the dreaded daily mail mention and having heard Jenny Murray talk on Women's Hour found my curiosity piqued. I am so cross. I keep having to remind myself that I appreciate living in a society that values free-speech.......
I feel passionately that the NHS is built on a principle of equality for all, irrespective of cost. If someone were to go to A&E with a serious injury, the cost of their treatment is not part of a decision-making process. They would not be turned away. We do not, and should not bring financial cost into decision-making about treatment. And I think its pretty arrogant to judge the value of 6 months to any individual and their family. I've had some of my treatment privately and the cost is staggeringly high. Am I 'worth' it? What would make me worth it?
I think back to the battle that brave women fought to get Herceptin and we now know the benefits it brings to women with early-stage disease. There were similar arguments then.
Its really, really upsetting.
In case anyone gets confused, Just re read my post, meant to say TDM1 instead of Herceptin. As ofcourse its all mixed together! Duh! x
I don't post very often these days, too busy enjoying life.......and on (Kadcyla) TDM1!!!
I'm not ill, as in in pain or mobility etc. I walk 2-4 miles a day and cycle, I'm doing my local 'Race for Life' in 2 weeks. Was going to jog it but have a strained groin! ouch!(overdid the training) So may just walk! I feel very well, never had any pain or symptoms. I've been kept a very close eye on since dx in March 2009 with IBC and poss spread to my liver. So have been on Herceptin every 3 weeks since then. Went into remission for 2 years but for the last 3 had secondaries to my pancreas. I've been on 2 trials, when Xeloda and Pertuzumab stopped working in Dec my Onc. signed me up for TDM1 the day it became available, Started end of Feb.I've had 3 lots Last scan shows some shrinkage on nodes and no change on tumor.It is possible there was slight progression between Dec and Feb and it has shrunk down again. It is fairly small anyway, no spread anywhere else. I know I've got more than 6 months of life left!! More like years!! Hopefully there will be shrinkage after the next 3 doses.. So.........this doesn't sound like someone on their last legs does it?! As it is mixed with Herceptin it takes 30 mins by IV (I've a porthacath). I went today,in at 10.45am. I was walking down to the town to have lunch at 12.15pm. So quicker to administer, no side effects for me, I know everyone is different. No steriods, just 2 anti sickness tabs tomorrow as a safety measure. This is possibly the way things will be in the future. There are more targeted treatments in the pipeline. So less time in hosp. in the unit taking up chair space. Hardly any add ons and side effects minimal so imumune system stays strong which in turn means less likely to go down with other infections etc.
I also met a lady today who has signed up for a trial ' Post operative (double mx) treatment for HER2 Positive using Herceptin with TDM1. She had spread to lymph nodes but all cancer has gone. So they are now trialing it for follow up treatment with primary. So it may become available to all HER2 ladies, and if they are still trialing it then surely it means it will eventually be as common as Herceptin .
As for the article. The lady in question wouldn't have it anyway as she is on Letrozole, so she isn't HER2 positive. Basically I think she is being paid for being controversal! As do most of the reporters on 'Daily Mail' That's why I stopped buying it a couple of years ago!
Just thought I'd add my thoughts and first hand experience!!
Hope everyone has a relaxing and sunny Bank Holiday, I'm off from Cornwall to a party near Worthing and then onto Luton... to visit my daughter. Hopefully traffic won't be too bad as everyone will be coming in this direction!!
Take care all and keep smiling xxx:
Have just seen your post and I am really sorry that you have had progression to your liver. I was told this last Dec and I know what a shock it is. I have just finished taxotere x 6 and I am confident that it has knocked the cancer back. The scan mid treatment showed shrinkage and I will be scanned again in about 6 weeks. The onc is confident that it will still be working. Will start Arimidex in 2weeks. I feel better now physically and mentally even with the SE of chemo than I did in Dec and I hope your next tx works really well.
I also have appointment to make my will although I have no intention of going anywhere yet! I has been on my "to do" list for a while.
I totally agree by the way about NHS money being wasted on boob jobs to enlarge breasts for vanity reasons!!
Wishing you well Vicki. Take care. Love Sheila. Xx
Article is at http://www.dailymail.co.uk/femail/article-2613613/Ive-breast-cancer-I-say-NHS-shouldnt-fund-drug-off... but they are no longer accepting any comments.
In some ways I agree but the patient's own choice has to be taken into account, as does the hype of drug companies trying to sell another block-buster drug for huge profit. The original hype around Herceptin suggested that it could help anyone with breast cancer and women were being exploited in the press begging to have the drug although they were not HER2+ and so it would not have helped them. My take on the recent announcement by NICE was that they were saying that they were not going to fund it at the asking price. In short it is a bargaining maneouvre which they hope will get Amgen to reduce the price.
Although I do not think that you need to go to heroic ends to save a life when the cancer really cannot be cured we all deserve a shot at having some extra worthwhile time to live.
I would also point out that although breast cancer charities raise huge amounts in the EU only about 5% of the research budget goes to fund Metastatic Breast Cancer research, the other 95% goes to Early Stage BC. http://www.sciencedaily.com/releases/2010/06/100601101420.htm Why is almost the entire focus of breast cancer research, support and funding being spent in this way? Because the Pink Survivors are seen as the real 'victims' of breast cancer, and we are seen as the failures who will not have a positive outcome so we are shunned. One day in October for Metastatic Breast Cancer? In the US those who are 'previvors' because they might get breast or ovarian cancer get a whole week!
I would find Ms Murray's comments to be somewhat vacuous in the face of NHS money being spent on boob jobs for those who feel deprived because they are not a DD+, or the other unnessary work that is carried out for the same reason. If you really need plastic surgery because of a distressing physical problem then fine, but believing that your boobs are too small is not one of them.
I have to go and make my Will tomorrow because of a sudden and severe progression into my liver and possibly bone marrow. I will have to start a combo chemo next week, but I will not go to every length to live any longer than the Quality of that life dictates unless they can give me real benefit. The problem is that drugs are mainly hype and often based on floored trials which really doesn't guarentee anything in real terms.
Re the article I left 3 comments, none of them abusive or objectionable, but I did point out I was suffering from incurable cancer. Not one was printed, the only reason i did it 3 times was to see what there responce would be. I was not surprised they were not printed, it is not pink and cuddly or in agreement with the article. Shame on them !
We’ve been reading this thread with interest and wanted to update you on the public consultation re: Kadcyla, in particular. I’ve just posted the below on our Facebook Page and wanted to share here too. I hope it’s of interest:
There are many ongoing conversations regarding the drug Kadcyla since last Wednesday when Nice made the decision not to recommend it for use, and some of you have asked if there is anything you can do to challenge the decision.
Breast Cancer Care is a registered stakeholder in the current public consultation about the draft recommendations which are open until Monday May 19th. We will be submitting a response, stating how many people have contacted us on this issue. Thank you to everyone who has already been in touch and raised their concerns.
If you would like your voice to be counted, please email email@example.com. The more people involved, the more impact we can have.
On a broader level, Breast Cancer Care is contributing to the wider consultation on the Cancer Drug Fund and the proposed system of Value Based Assessment. We know that the current system isn’t working so we are working with other breast cancer charities to ensure the Government, not just MPs, hear the concerns of breast cancer patients.
More information on the consultation can be found here: http://www.nice.org.uk/getinvolved/currentniceconsultations/MethodsOfTechnologyAppraisalConsultation...
One of the suggestions that has been made is a petition. There doesn’t appear to currently be an open petition regarding Kadcyla and its funding. If you would like to start a petition, we would recommend setting one up on www.change.org; it’s easy and very effective. Alternatively, if you would prefer to contact your MP individually, information on how to do that can be found here: http://www.breastcancercare.org.uk/sites/default/files/files/pdf/how_to_contact_your_local_politicia.... If you are unsure as to who your local MP is, www.theyworkforyou.com has a postcode search.
That's great about your results with TDM1 (Kadcyla).
You are spot on about Jenni Murray and her article.
I came across an article from Deborah Orr (Guardian - also had/has bc) which seems to ask some of the right questions:
Ms Murray seems to have a problem with all people with sbc and breast cancer charities in general and never misses an opportunity to do damage. I really don't understand her.
Cornishgirl - I'm good thanks, hope you are too.
Not saying too much as today and tomorrow are my "brain fog" days following chemo thurs . ( will be better Monday).
Anyway just to say I agree with everything you have all said. How can we move ahead with science if new drugs aren't given a chance!
This lady might feel different if she or someone close to her needed this.
It isn't false hope as she says as we know some of these drugs work for much longer than initially thought so they have to be tried. Xx
I too have read this article and I must say as a secondary BC lady who is both her2 and ER positive I found the whole tone of this piece completely devastating and heartless. Apparently we shouldn't be 'seduced by sad stories of heartbreak'. Then why have we ever tried to treat or cure cancer?? There is no point in developing drugs and treatments at all. We should all accept our fates. Of course it is OK for Jenni Murray to say what she does because she has been quite happily treated with letrozole for the past eight years. If we took this attitude 10 years ago we wouldn't have herceptin. As it is if we only get an extra 6 months of life on TDM1 it would actually only cost 45 thousand pounds. I just wonder how much it costs to incarcerate someone in prison for years!? Or to release people and to give them new identities to protect them when they are released? I would also, say to Jenni Murray that TDM1 doesn't just give 6 months extra. It can in cases give people years. Years to perhaps see their children grow into adults. To help nuture stable responsible adults who will be a credit to society not emotionally traumatised and unstable who cost society small fortunes if they are involved in crime or with social services. Perhaps we will have to fight for herceptin like the brave ladies in the past decade did! Perhaps it could be paid for by the savings which might come in when everyone has herceptin subcut or the drugs come off patent if that is the correct term. Or perhaps it could be paid for out of the savings that will be made in the care home fees and pensions we won't be claiming. I find the whole tone of this article thoroughly depressing. People who go on to live until they are in their nineties plus may probably 'cost' society a small fortune over the years but the poor people who need the financial help to obtain expensive medications should be made to feel guilty in some way. I really want to go on and on!! I am very tempted to write to Jenni Murray in person. So much for scientific advancement!! I feel according to her we just shouldn't bother.
Here's to everyone who has to live with this disease day in and day out!!!
Hi Tink, Im afraid i lost all respect for Jenni Murry and her "opinions" after her last outburst, i think she just enjoys being controversial , lets face it ,it gets more readership of her column!.
Certainly beggers belief though doesnt it, but then, as Jenni admits she "didnt" have an aggressive cancer , ( not that that makes her immune to mets) but at the moment, it is easy for her to be so flippant with her opinions, like you say, i wonder how she would feel if it was her daughter , i think we all know what the answer would be to that. she would be fighting for this drug like everyone else who needs it.
Have commented too, but as the Daily Wail moderates all comments, it probably wont show, ( Not that i wasnt polite ) I was , albeit through gritted teeth!!
Hope your doing ok Tink, L xx
Jenni Murray - How to set back the cause by 20 years.
I have commented on the Mail website - wait to see if it comes up - I was very restrained.
I get what Jenni is saying, but I can't believe she hasn't made a comment about why it costs so much. No comment on the big pharmaceutical companies raking in profits and pricing drugs out of the market. No comment on halting the decrease in the NHS budget.
I did notice her implication that women with advanced breast cancer should not be looking for longer survival but devoting their remaining time to others - sanctimonious woman.
I can't believe she would say many of the things in her article if it were her daughter that was denied those six months with her children.
Oh dear , what a awfull and very insensitive comment to make, being a primary does not make her immune to having possible secondaries herself at some point in the future , and sadly if she is unfortunate enough to find herself in that position one day , she may very well be needing some of these treatments herself !!
I would expect to read some of those uncaring and uncompassionate comments from someone who has never expierenced cancer , (though im pretty sure the majority of even those people are not that heartless) but realy, from a fellow cancer patient? it certainly beggers belief.
Yes the Nhs isnt a bottomless pit, we all know that, however what is the point in people donating to cancer research for new treatments if people are not then allowed the funding to have access to them, its like dangleing a carrot then snatching it away, and its very cruel.
The UK is Far from a poor country, 55 million a day just in membership fees gos just to the EU , 22 million a day gos just in Foreign aid , the list gos on and on, imagine just what a difference that sort of money or even just some of it could do for the Nhs?, makes me so very angry that people are dying when there are treatments available out there for them but they are then denied the funding.
I suspect when politicians and those employed by NICE who make all thses decisions on funding for cancer treatments are affected by cancer themselves, and they are forced to look at death in the face, they would very soon change their minds.
What price a Life? , better get off my soapbox now, grrrrr
Am currently a primary lady, and a herceptin lady too.
Some people say things without giving any real thought to what they are actually saying. You are right it is easy to say no funding for treatments when you do not need them but people quickly change their mind when they end up needing treatment which is not available. My own view is that the NHS north and south need to look at the waste in the establishment. Maybe then they would have money. Also I feel that as a country we need to start looking at increasing our nat insurance contributions to ensure that there is money for the expensive treatments which are coming on board. If we dont put it in we cant take it out. Hope that makes sense.