So Called wonder drugs
So Called wonder drugs Hello all - Just wanted your views on yet another new wonder drug - FEMARA
First we had Arimidex then there was Herceptin now this - how long before another comes along.
Please dont take me the wrong way - if the drugs work I am all for them - I am on Tamoxifen (18mnths) are these drugs for me also being a MAN. We are still hearing Women will benefit.
My last visit to the Breast Clinic - I was told that I was too far into Tamoxifen to be given Herceptin - but if the cancer ever came back - I would be given Herceptin - very confusing.
Cheers David W
PS - HAPPY NEW YEAR to all
Femara -Hi David - sorry I don’t know anything about Femara, except that it seems to be used frequently in the US. You might have a look at the American bc site, breastcancerdot org and post there for information.
I too am confused by my Consultant, whom I have just seen privately to get tested for HER2 status - he said it has been too long since I finished chemo (end Aug 2003) for Herceptin to be of any value, but if I get secondaries he will prescribe it then. His logic defeats my simple brain! I figure if Herceptin can attack secondaries, why can’t it be used preventatively now to forestall a recurrence? Luckily, my Onc changed me from Tamoxifen during radiotherapy and I take Arimidex daily, but guess you can’t as you have to be menopausal. However, thinking about that, you are menopausal - as you don’t have periods!
Perhaps you can ask your Onc about Arimidex, as it is supposed to be better than tamoxifen in preventing recurrence. It must be very frustrating seeing so many new drugs come onto the market for women yet being unable to access them yourself.
Good luck, and Happy New Year.
Liz.
femara and herceptin Hi David,
Femara, also known as letrozole, is one of the aromatase inhibitors . It is used to block the production of oestrogen which fuels er+ and pr+ tunours. It works in a different way from tamoxifen and recent trials have shown it can be more effective in preventing recurrence than tamoxifen.
It is prescribed to some post menopuasal women, not pre menopausal, and I don’t know if any men have used it. My understanding of chemistry and biology is pretty poor so I have copied this piece from the Cancer Bacup website about how it works:
How letrozole works
Many breast cancers rely on supplies of the hormone oestrogen to grow. In women who have had their menopause, the main source of oestrogen is through changing androgens (sex hormones produced by the adrenal glands) into oestrogen. This is carried out by an enzyme called aromatase. The conversion process is known as aromatisation, and happens mainly in the fatty tissues of the body. Letrozole blocks this process and reduces the amount of oestrogen in the body. For this reason letrozole is known as an aromatase inhibitor.
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Herceptin is a drug used for people with her2+ cancer. Have you had a her2 test? You would only be suitable for herceptin in the future if you were her2+.
I can imagine your frustration when men with breast cancer are made invisbile in press reports. Men never seem to get included in drugs trials (might be wrong on this) for breast cancer because there are so relatively few of you. Personally I think there is a lot to found out about breast cancer by researching why men get it: on the principle that if we understand why a particular minority gets a disease it may hold a key to prevention for everyone.
I also feel invisible at the moment with so much hype in the press about ‘wonder drugs’. There are no wonder drugs even on the horizon for people like me with er- pr- her2- breast cancer.
I’d suggest you talk to your consultant about all this so you can really feel confident that you are getting the best treatment for you.
Good to see you back on the forums.
Best wishes and keep reminding us that men get breast cancer too.
Jane
Aromatose inhibitors Hi David et al.
It’s Bill back again.
I’m as agitated as you are about the “wonder drugs” for women with BC.BUT we know, we certainly do, that men can get it too. It’s just a shame we seem to never get mentioned. BUT as you know as well we have come a long way in a short time!
As you know I am on Arimidex which, at the time I was prescribed it, was not even given to many post menopausal women. Now it is more widely prescribed as a treatment for early breast cancer in post menopausal women.
As a man I’m very aware that the drugs and treatments for breast cancer are formulated for the majority of sufferers - women - as it should be because of the vast differences in numbers affected.
However, I’m afraid to say that the effects of the drug arimidex on me are just now surfacing - three years after beginning to take it. I now have been diagnsed as suffering from osteporosis, a strange thing for a 50 year old man. I’ve got aches and pains all over me and am due to go for yet another bone scan to try and nail what the problem is. I’m confident enough that the cancer hasn’t come back but I do feel the syptoms have been caused by taking the arimidex.
Now don’t get me wrong, I think it was brave of the consultants to prescribe the drug for me and it is so tiny that I didn’t have any qualms about taking it. BUT, a woman being given the drug would have had a bone density scan before taking the drug and then would be followed up after some time to see if it had made any significant difference to bone density. In fact, it happened the wrong way for me. Suddenly I was offered a bone density scan which only confirmed their fears. I now have to take yet more medicine to conteract the effects of the anti cancer drug.
I’m not at all happy about that . BUT what I am happy about is that they offered the chance and I accepted it. I’m walking about, functioning- not as well as before, working away and I can still look at the sky, smell the flowers and take comfort from my family and friends. Things have changed since that day I was told I had breast cancer.
As I look forward to the New Year I’m just glad to be here, to be able to help others in the same position and to press for a bigger voice for men who have breast cancer.
I look forward to 2006 with the thought that we can help push forward for men again.
Take care all, be good to yourselves and yours.
Best wishes
Bill
Thank You for the response Liz - very difficult being a man with a so called “womans” cancer - this is just how it is - 41000 women & 300 men - no contest.
Jane - I am HER2 - but because I have been on Tamoxifen for 18 months they feel no need to change - I have asked about Arimidex - this was not given due to the fact it causes problems with bones - I contacted AstroZeneca for details - on no account should Arimidex be given to men - not enough information regarding Men with BC.
I think this answers another of your queries - are men involved in trials - I think not.
Thanks for the welcome back to the forums - I hope I will be treated better this time round - my comments are not taken the wrong way and people dont put in what is not there.
Bill - here we go again old friend - another year 2006 - take one day at a time as usual Bill - we will see many more years yet, that I am certain.
I too have aches n pains - arthiritis - riddled with it - every joint - taking Cod Liver Oil Tabs now - they seem to help.
again Happy New Year to all
cheers David W
Need more information Whenever I hear about new drugs for Breast cancer, I wonder whether they will also be suitable for men, as the reports always mention them as helping women, but do not mention men at all. For all the information that is given, men do not come into “being helped” as it is “rare” for us to get it.
I wonder whether organisations like Breast Cancer Care will be able to give us information regarding the usefulness or otherwise to men of each new drug that is discovered?
Happy New Year too
David
— Hi Bill — Sorry about your bone problems which I too am having but just to put the record straight, women don’t automatically have a bone scan before Arimidex.
I have been on Arimidex about twelve months and like you have only just had a bone scan once the problems started… It is really annoying that there is a difference in treatments but this particular one seems from all I have observed to be caused by the postcode lottery thing. I can’t believe how easily some people down South or the midlands are able tohave MRI scans either. Up North West, at my hospital, they are virtually impossible to be granted and every excuse under the sun is used not to give them.
As you are aware, I do not believe that there should be ANY difference in treatment for breast cancers whether it be male female, North or South, race based or anything whatsoever - but sadly there is still a lot of work to be done out there to make this happen. We keep thinking that messages are actually being given out and listened to by the media, but unless a particular problem affects them or their family, some people just arn’t receiving the messages and taking note for future reference.
Joy
Postrcodes Hi Joy
You might be right about the postcode thing. It certainly is the protocol in force in my health board area. I’m sorry to hear that you are having problems with it as well.
Indeed, the last time I spoke with my ocologist I urged her to consider giving men a bone scan - if she ever came across one - and also suggested that they are immediately put on prophylatic bisphosphonates. She is considering it but it comes down to cost.
David W. has confirmed that ARIMIDEX was not ever intended for men. I believe that to be true and, like you, agree that the vast difference in terms of men and women getting the disease is the cause of the lack of attention to men.
All medical research programmes seem to depend on huge numbers of participants and there are just too few men with breast cancer to support such a venture. I would be glad to see that continuing and I would also be happy to see the numbers of women diagnosed fall significantly. I’m sure there will be postive spinoffs for men with all the research going on.
David W.
2006, let’s make some more noise and see what happens this year!!
Take care all of you and enjoy the beginning of the New Year.
Best wishes
Bill
Ouch I’ve been reading this thread and have started to becoming quite dismayed by the obvious trend that the medical profession seem to use us as guinnea pigs. It would be interesting to see the results of clinical trials of these drugs and find out how many men were used - very few if any I’m guessing.
As I’m sure you have, I have read much literature and in all they say that the treatment for men is the same as for women. From this thread it would appear not to be the case.
I’m on Tamoxifen, 6 months now and I feel quite fortunate not to have any remaining side affects. I did have hot flushes at first but thankfully they have subsided largely, but you can’t help wonder if there are any long term dangers.
Happy New Year
Brian P
Willy & Brian Bill - will make as much noise as is required - where shall we start?
Did you know there is another booklet due out sometime in February - Family and Friends affected by living with or knowing people with BC - Sheila (my wife) has contributed.
Brian - nice to see you in here again - I am 18 months into Tamoxifen - my waist size has gone from 32 to 38 / 40 depends what time of day - feel bloated (suppose its like being Pregnant) - at the end of the day my ankles are swollen - feel lousy every day - but I still wake up in the morning. Brian I hope you carry on having no side effects and you are able to carry on as normal (whatever normal is) as you can.
cheers David W
Now you mention it David,
Thanks for the pointer on the waist line. I put mine down to inactivity, but your probably right its down to the drugs. My waist line has expanded by 2 inches since i started taking Tamoxifen, but I used to be quite active and put it down to the fact that I wasn’t doing as much physical exercise as I used to.
Start back at work on Thursday full time and I have to say I’m looking forward to it.
David and Bill - I would be more than happy to help make some noise - how about asking BCC to investigate the clinical trials on these BC related drugs and find out how much the affects on men were evident in them. I suspect not very much if at all!
Regards
BrianP
PS - I will look forward to seeing the new booklet and thank Sheila for putting the effort in.
Statistics Hi David
I was speaking to my breast surgeon recently and he told me that he had added the very few (2) cases that he had dealt with in his statisical report on BC patients - men I mean.
He was told to take them out as they didn’t want them included in his annuial reports.
Perhaps you could make enquiries in your local area and see if men with breast cancer feature in any statistical reurns.it seems strange to me that we don’t feature - certainly in Ayrshire and Arran area.
I will certainly be asking the Health Board for figures and I’ll let you know what I find out. If these are annual regional figures being returned to produce a national statistical overview then we are being left out.
Take care and I hope you didn’t indulge too much over the festive period. Hope you are feeling a bit better too.
Best wishes
Bill
Male osteoporosis Willy:
Just coming on here to make a comment about osteoporosis. My husband was diagnosed with this condition at age 52. The problem must have been developing over quite a long while as his bone density was found to be significantly low, yet a hormone profile check proved normal. Moreover, he used to go running regularly, which is a weight-bearing and therefore bone-strengthening activity, so it seems to be “just one of those things”. As we discovered, to our mutual surprise, osteoporosis is apparently not so very uncommon in men as we had supposed. He has been taking daily calcium supplements plus weekly Fosomax for 3 years now and the condition has apparently stabilised (although what we would really hope for is some actual improvement).
Osteoporois in men Hi Jpoet
I’m sorry to hear that your husband has been disgnosed with osteoporosis. As with breast cancer the disease in men is the same as women get.
My doctors have confirmed that the osteporosis got me because of the arimidex I take. But I do agree with you that osteporosis is another of the diseases that is not just for women. However as it is closesly linked to oestrogen - or the lack of it - it mainly affects women.
My BC was oestrogen receptor positive and yet all the hormone tests showed no increase in oestorgen in my body.
I do hope that your husband’s bones begin to get a bit more dense with the treatment. Unfortunately I am not allowed a calcium supplement because I have painful habit of producing kidney stones -another of my woes!!
Take care and best wishes
Bill