nlm.nih.gov/medlineplus/news/fullstory_58505.html
The evaluation was quite damning, saying that the stroke risk was too high and that the manufacturer had failed to show any benefit in terms of quality of life or prolonged survival.
I thought that this was an important article because I have heard that patients with secondaries are going to other countries to get this alleged wonder drug, but avastin seems like it might be really bad.
Thanks so much for this Christine. I had thought I might be doing a campaign to get avastin and its almost a relief to know not to bother!
very best wishes
Jane
Interesting article, disappointing that this drug has a life threatening side affect so wont be aproved.
R
Since my last post I’ve been reading some comments about this on a US website for triple negatives.
The FDA decision not to approve avastin was agreed by just one vote (5 to 4). Some women in the USA have been getting avastin off license for a while, and some think it has had an impact on their advacced breast cancer. The research did not separate the impact on triple negative cancers compared to hormone positive cancers…and probably should have done.
Its interesting that the research shows improvement in progression free survival but no improvements in overall survival…I suspect this is the case for other treatments (include chemotherapies) for advanced breast cancer. I’m rapidly running out of options for treating my cancer and I had thought avastin might be worth a try later on…my last post was slightly tongue in cheek and throw away because I haven’t got the energy for desperate campaigning to buy the possibility of a bit more time. But seriously it may be that for some women avastin does give a bit more time, and that the side effects might be worth it (after all, all chemos have nasty side effects including death sometimes.)
It will be interesting to see what happens next. Avastin is licensed for other cancers in the UK (e.g bowel…though someone had to go to court earlier this year to get it.)
How long, how long I wonder before we (or those who come after us) can look back at these times as desperate ones searching for treatments which will really work.
Jane
There was an expectation that Avastin would be licensed for secondary breast cancer next summer. I was looking forward to an alternative to chemotherapy.
Sigh!
Holey.
The problem with avastin for breast cancer was that they used a much higher dose than for colon cancer, which boosted the side effects (as well as the cost).
These are difficult times. Aside from liver ablation I have not seen any new thing that is likely to give some secondary patients years rather than months. Very frustrating, but the San Antonio Breast Cancer Symposium is coming up, so there may be so uplifting news in the next few days.
I agree Christine. And I doubt San Antonio is going to come up with anything really new. I know 35 doctors are attending a triple negative think tank one evening and am hoping there might be some pointers for the future for tripe negatives, but I’m realistic enough to know that they will probably be way to late for me.
I’m sue you’ll be watching San Antonio closely so let us know…particularly about any triple negative miracles suddenly there!
Jane
My oncologist is at San Antonio and back next week so it’ll be interesting to hear what she has to say about it.
Pinkdove
Hi Jane,
Yes, miracles is the operative word. I have become jaded. I am sick of news stories about drugs which are touted as offering real options to metastatic BC patients and yet don’t usually give patients even a year of extra life. There was a news item today about a drug that gave patients on average just a whole month and a half of extra life (but with neuropathy) and yet the article made it seem like it offered real hope for refractory metastatic breast cancer. I was not impressed.
I know that I will probably get a few upset replies to my postings of the news items from the American Association for Cancer Research that post-diagnosis weight gain and high insulin levels up the death risk, what with Christmas coming and all, but there has been so little real progress, especially for ER- patients with secondaries, that I think that avoiding a recurrence is extremely important. I say ER- rather than triple negative because even on her2+ there is a huge difference in overall survival between ER- (months) and ER+ (possible years).
Hi Christine and otherr
this just bad news all around really - its both not as good as we had hoped and it is already being used to deny provision of the drug here. I had hoped to take avastin but my onc turned the thumbs after this. Unfortunately I can see his point as a stroke would not be a minor side effect…
Re your post on weight gain - if its true, if its true and people should know this I lost 45 pounds post diagnosis and started running, but it still came back…maybe it bought more time…
regards
Cathy
Hello everyone,
Well, the Triple Negative Meeting before the SABCS seemed to be more about plans for the future rather than a cure. I was impressed that Dr Eric Winer and George Sledge are involved, since they are about as bit as one gets in breast cancer oncology. The Susan G. Komen Foundation press release can be found by typing “Researchers From Around the World Gather to Discuss Triple Negative Breast Cancer”. They were one of the sponsors together with the Triple Negative Breast Cancer Foundation, which the sister of a triple negative patient founded to help find a cure. I think that it is good that there is such a foundation because her2support, which was founded by a husband as a Christmas present to his wife with secondary her2 positive breast cancer, has made a huge difference in the her2 world.
Hi Cathy, yes, it just isn’t fair that you did all the right things and it still came back. Of course, these researchers aren’t claiming that it is possible to eliminate all recurrences simply by virtuous living (unlike one geology professor I could mention).
And they are not asking patients to do anything impossible. There was a randomised controlled trial which greatly reduced recurrence in er- patients by keeping their fat intake so low that the researchers said that patients would be unable to replicate the results at home and even cancer hospital dieticians would not have the right kind of experience to replicate the diet. So the result was interesting but, as in Eleanor Rigby, noone was saved.
Keeping the weight off, eating fruit and veg and taking long, brisk walks though, are activities that are possible for most people. I had read that weight gain was bad for survival when I first started chemo and it really helped me keep the weight off by keeping me from reaching for the chocolate when times were tough. In fact, the chemo nurse said I was the only breast cancer patient she had ever had who had not put on weight during chemo. There are also alot of other potential benefits for cancer patients from walking to keep the weight off, including reduced fatigue, less treatment-related bone loss, and better overall fitness. If walking was an expensive drug, its manufacturer would be launching a campaign to get the NHS to prescribe it but it has no advocate so the cancer docs seem to ignore it. The onc only brought it up after I was diagnosed with osteopaenia, which was rather late. Oh, and I developed osteopaenia despite doing most of the right things: life just isn’t fair sometimes.
Hi Christine and all:
some thoughts on diet and getting a few extra months:
Yes I have been aware for some time of the reports that a low fat diet may decrease the risk of recurrence for early stage er- and pr- negative breast cancer. The earlier reaserch was all about stage 1 and stage 2 cancers so I wonder if this latest research was too, or if it covered stage 3 bc as well?
We all make different choices about how we live with this disases, particualrly if we were diagnosed with a poor or not so good prognosis. Food is one of the pleasures of my life. I know about healthy eating and privileged enough to be able to afford (in terms of both money and time) fruit and veg, plenty of fish, organic meat occasionally. I don’t often do ready meals or junk food. I also do alcohol and cheese and ice cream and chocolate and I’ve never for me thought that the risks of continuing to eat these foods I enjoy will probably make much difference to my stage 3 23 nodes triple negative breast cancer. I hate to see the guilt which the dietary police can induce in women after they have been diagnosed with breast cancer. The evidence on low fat diets is not the compelling evidence that the evidence on smoking was a decade or so ago.
I know only too well that the average survival (according to Susan Love) of people with metastatic breast cancer is between 2 and 3 and a half years and is probably less (on average) for those with triple negative and er- pr- bc (when herceptin fails). When I was first diagnosed with primary breast cancer I felt so depserate because I realised I probably wouldn’t make the ripe of old age of 80 or 90 as I thought was my birthright (both parents and maternal grandparents lived long…I conveniently ignored the more depressing figures on my father’s maternal side.) Now I have a regioanl recurrence, not responding to treatment but still myseriously not showing evidence of secondary spread…yes, a few months here and there do matter an enormous amount to me. I never thought I’d be someone who chased after every possible treatment to prolong my well time (which fortunately I have at the moment…I’ve only ever been ill on the treatment) but I have changed. I am under no illsuions…and I don’t think many of us with Stage 3c/Stage 4 disaese are. We are all, whatever our er pr her2 status, hoping that each treatment will give us a bit more…or a lot more…well time, for many in our situation a few extra weeks or months of quality time matters. At this moment in time our options are limited in terms of a cure…but we have to maintain hope about living well, living tolerably for as long as we can.
And for me that includes raising a glass of red wine, washed down with stilton at this seasonal time which could be (but I hope won’t be) my last.
very best wishes
Jane