Herceptin article
Herceptin article in the new look Observer magazine, or online at
observer.guardian.co.uk/magazine/story
Jenny
Yes interesting An interesting history about how her2 was found and the development of herceptin.
As ever though: as someone her2-, who doesn’t benefit from herceptin, who has poor prognosis, I just wish these articles would point out that for many of us a ‘cure’ will not come in our lifetimes. The significance of the her2 protein was discovered in 1986, it is now 2005. I reckon it will be another 20 years before a similar breakthrough for triple negative cancers…we have to keep angry and keep campaigning…there is no cure for breast cancer yet.
Jane
Yahoo The article says that a larger trial is underway to verify the Finnher results (no cardiotoxicity and brilliant results at 1/4 of the costs of the other trials).
Jane, alot of effort has gone into anti-Her2 efforts, so I would imagine that scientists will use what they learned from the fight against her2 (which has lots in the pipeline) to make the progress against other growth-factor driven cancers even quicker.
— aPOLOGIES — If this is not the correct thread to post this, but I have just come back from hospital gutted.
I have been waiting for my HER2 result since MAY LAST YEAR!!! I was given the result today. I am HER negative. I know my cancer is oestrogen PLUS and realise how little I know about HER negative cancers other than they cannot be helped by Herceptin.
I will continue to fight as much as possible for Herceptin to be given in this region to those people it can help, but can anyone tell me is it still ok me taking Arimidex and if secondaries occur, is there ANYTHING else they can give to give you as much time as possible? I really am a dumbo on this HER- cancer.
Once more, sorry if this the wrong thread. Maybe you could re-direct me.
Joy xxx
Joy My oncologist told me it is better to be Her negative as people who are positive “tend to do less well”. That is why Herceptin is so important for those whom it benefits. Being ER+ is a definite plus as it means you can benefit from the various hormone drugs available which lower the chances of recurrance. If one stops working they can try something else.
I asked my onc what would happen if i got a recurrance and he said he “had lots of things up his sleeve” ! .
I hope this helps
Kelley
When I read the article I thought about you, Jane, and what sort of mixed feelings you must have.
Joy, SO glad to hear that you’re Her-. They finally managed to find your results then!
Love
Anne
xx
It’s generally better to be her2 negative Hi Joy,
I just want to second (or third) that her2 positive is bad, which is why herceptin matters. In fact, the herceptin-based chemo in the Finnher trial just increased the disease-free three-year survival of her2-positive patients up to the level of the her2 negative ones. Although maybe the her2 positive patients were further along, since this type tends to be aggressive, so you’re being her2-negative is actually a good thing.
To Joy Well -we all seem to be saying the same thing - because we’ve all been told the same thing. Hormone positive and HER negative seem to be the ‘best’ combination.
I think part of the problem is that when the media gets hold of a story like herceptin a few weeks back, what gets reported is the human interest and shock horror drama angle. it doesn’t quite have the same impact to say - well actually a lot of women don’t get herceptin because it isn’t relevant to them and wouldn’t do them the slightest bit of good.
I have to say that over 6 months to tell you your result sounds a bit lackadaisical (if that’s howyou spell it) - what were they doing with it ?
Not sure about your arimidex question .sorry
Kate
What about the MEN Read with interest you comments - Try being a man who has had BC - we are not even considered re drugs - there are only a few of us and we are not included in any trial (as far as I am aware anyway)
I am HER2 positive - I am on Tamoxifen - have been for 18 months now - asked about Herceptin and was told that because I am so far into Tamoxifen may as well stay on them.
If the Cancer comes back - I will be on Herceptin straight away - how daft is that.
I work full time - Tired all the time - feel 10 months pregnant - bloated - having to buy new clothes ever other week (for years my waist was 32" like most men 40" chest again like most men - now my waist is 38 / 40 depends on what time of day and the chest is 44 and have had half of it removed with the Mastectomy).
But I am a man one of only 300 who get this damn BC and when we try to raise a voice - we just get ignored.
Ladies - try Being a MAN with BC put yourself in our shoes - it is difficult.
Read through the Newspapers or Magazines or any other media - see how many times Men with Breast Cancer get a mention.
cheers David
Its not just about er pr and her2 first of all really pleased you’ve got your her2 result at last Joy. And yes it is better to be her2- than her2+, just as its ‘better’ to be er+ and pr+ than er- and pr-. If you are er and pr+ then there are several suitable hormone treatment so yes if you’re being treated with arimidex then that’s appropriate.
I think its important for people to remember that though er, pr and her2 status are important they are not the only indicators of prognosis. With any kind of breast cancer lymph node involvment, and numbers of lymph nodes is still probably one of the most important indicators of whether recurrence is likely. (Though being her2+ may explain many of the one third of recurrences which happen in breast cancers where no nodes were infected at diagnosis.) So its truer to say that ‘all other things being equal’ that er and pr+ is better than er and pr-. So someone with loads of nodes who is pr+ and er+ almost certainly has a worse prognosis than someone with no nodes who is er- and pr-. And I’m not even sure if the evidence is out there about whether say having a grade 2 tumour, a couple of lymph nodes and her2+ is ‘better’ or ‘worse’ statistically than being her2-, grade 3 tumour and lots of nodes. Does anyone know where I can get data on such comparisons?
I do know that the research done on her2+ cancers will in the long run contribute towards progess for other kinds of cancers, but I still maintain that we must keep campaigning for research on the cancers which are proving harder to crack.
One final piece of information which may be of interest when we talk about better and worse is that the recurrence rate for er and pr- breast cancers are higher in the first five years after diagnosis, but then after 5 years er+ and pr+ ones are more likely to recur so that at 10 years the recurrence rates are about the same. This just shows that drugs such as tamoxifen delay recurrence, but do not of course ‘cure’ where a recurrence is going to happen.
As ever I hope what I’m saying makes sense, is reasonably accurate and doesn’t mislead.
Jane
— Thank you everybody — I will now try and digest everything you have all told me. I am very grateful to you all.
Joy xxx
Calling David As someone in another minority group (Inflammatory BC) I felt great sympathy with the sentiments you expressed in your post. I think there are about an equivalent number of IBC cases as male cases, i.e. about 1% of the 40,000 women diagnosed p.a. It must be a constant source of frustration to feel you are being sidelined.
Herceptin is generally given only within a shortish period of time after chemotherapy, so that may be the reason why it is not being offered to you. However, if you are experiencing problems from Tamoxifen, perhaps you could ask your oncologist whether it would be suitable for you to be transferred onto an aromatase inhibitor such as Arimidex (which is generaly suppopsed to be a kinder" drug, and has had better trial results)? I don’t know if it is suitable for men, but I don’t see why not, as it prevents testosterone being converted into oestrogen, and obviously you have more testosterone than us women, so perhaps it would be even more suitable!
— wish i had not read this thread now , my wife is her2 + after a fish test ,and is not going to get herceptin , what now , she cant have tamoxifen either , this is turning into a nightmare
Tim
Joy I have secondaries and am HER2- er and pr+. My oncologist quite gleefully told me after my second course of chemo that if it didn’t work there is loads me that he can give me! Not sure if this is reassuring or not! Just thought you should know, and don’t even think about secondaries, concentrate on now.
Love KitKat
Hi Tim From reading your posts in other forums I gather that your wife’s nodes were not affected and she is therefore not going to have chemotherapy, and because her tumour was ER+ and PR+ the consultant is recommending that she has an operation to remove her ovaries.
This will make her post-menopausal, which means that she will be able to be treated with an aromatase inhibitor such as Arimidex (which I and some others on the forums are on) to stop her body producing any more oestrogen. Arimidex and the other aromatase inhibitors are proving very good at preventing recurrence - better than tamoxifen in many cases.
Nicky won’t be given Herceptin if she isn’t having chemotherapy, because Herceptin is normally given alongside or after other chemotherapy for primary cancer.
I hope this helps things not to feel so nightmarish. It is hard to take everything in, especially when you say you were given wrong information on one occasion.
All the best
Kathy
Tim I may be wrong but I have a feeling that reading these forums may not be the best thing for you to do at the moment. I hope you don’t mind me saying this but sometimes these forums can make pretty depressing reading. You and Nicky are under terrible stress at the moment because she is right at the beginning of her cancer diagnosis and treatment.
You might find it more reassuring to talk to a person rather than to read posts on these forums which may distress you. Breast Cancer Care runs a telephone advice line and so does CancerBacup. Both are staffed by trained nurses and I am sure you would get some good advice and support from them as well as perhaps a little comfort. I got huge support from both before and during my treatment when I was literally scared witless.
Its not always a good idea to read too many personal opinions at the early stages. I know that I would have been absolutely terrified if I had found these forums and read them before my treatment was completed. Thankfully I did not. I know many people find them helpful but even now I still have to struggle to cope with what I read on them sometimes. Prior to my treatment I think they would have really scared me.
I don’t really know how you feel and I may be totally wrong but if you do think there is a possibility that there might be something in what I am saying could I suggest that you take a break from the forums and talk to someone on the helplines or to Nicky’s breastcare nurse? I do really feel for you both and am thinking of you.
Best wishes
Roisin
— tHANKS Kit Kat — You brought me back to the present. I keep thinking when instead of if, so need a good mentor like yu at times.
Tim, I think Roisin is probably correct. After reading your other posts on different threads you must be feeling really worried and confused. Talking to someone in person would help to put things into perspective for you. Write down your questions before talking to a bc nurse and write her answers down so that you can go over them afterwards.
There are so many different breast cancers if you look at the large amount of variations on PR plus or minus Er plus or minus HER 2 pos or neg, grades and stages, lobulars and ductular, IBS, Pagets, the list goes on. You seem to be trying so hard to help your wife and it must be soul destroying to keep meeting even more abbreviations. Questions go on and on at the best of times. You need support too.
Best of luck. Joy xxx
Hi Tim I’m sure my husband felt like you earlier on. I was diagnosed at 37 about 18 months ago, just about to start Herceptin but currently well.
Although I am HER2 3+ as well there are varying prognosis still involved.
The truth of it is that your wife will be treated with the best drugs to suit her condition. The fact that she hasnt been offered chemo means that they must feel she is doing well already although I know that’s not how either of you will feel right now.
Reading to learn and reading opinions is a hell of a scary thing. But I agree it is better to have some knowledge and it will become less scary with time, I promise.
Please give your wife my best.
Steph x
— Thanks again , i am so scared of everything at the moment , i try and stay strong for my wife but everything i seem to read is negative , i realy dont know what to do , i am trying to learn but its so hard , ive lost my brother and nan this year , i just cant face the thought of whats happening , sorry for going on .
Tim