Hi,
I am to start Herceptin in July. I am hearing nothing but bad about it and frankly am beginning to decide against having it. Is there anyone out there who can tell me good things about it?
Hi emmbee,
I have been on herceptin since 2004 every 3 weeks. What is good about it? I believe I am alive today because of it.
I had exhausted all chemos and was about to be put on Phase1 trials when my oncologist stopped and went to check on the tissue from previous mastectomy and came back to tell me I was her2+++. How do i know it worked? because I had a lot of lymph node swellings all round my neck and two types of chemo had failed to stop them. When I had my first dose of herceptin they all disappeared.
I find I have no side effects that i recognise as being caused by herceptin.
Hope this helps.
Dawn
xxx
Hello emmbee
I am honestly a bit surprised that you only heard bad things about herceptin, and am genuinely curious to know what are those things and where you heard them?
I have never heard anything negative about it, apart from the possible heart problems that can arise, but you get constantly monitored when on it and it will be stopped as soon as there is sign of trouble, (the heart problems are generally reversible and your heart function recovers as soon as you stop it).
I am pretty sure I’ve read it can reduce recurrences by 50% in Her2 positive cancers.
I was hormone negative and I was pretty glad to be able to get herceptin as it was another weapon I had to get rid of cancer!
Sorry I can’t add much to this but I’m sure more of the extremely knowledgeable ladies on this site will be able to give you more good reasons to have it!
hi embee
its obviously your own decision - but you have to weigh up the facts fact - it reduces death from Her + cancers by sizeable margin vs talk (??). I think I would go for the facts. I have heard nothing but good about herceptin its one of the few real breakthroughs on recent years.
cathy
Hi embee
You may find it useful to read the BCC fact sheet on Herceptin as it explains what Herceptin is, how it works, when it may be given, its benefits and possible side effects. You access this by going to the following link:-
breastcancercare.org.uk/upload/pdf/herceptin_-_dec_08.pdf
I hope you find this helpful.
Kind regards
Sam (BCC Facilitator)
Herceptin is a good drug and the side effects are not at all like chemo. You should keep in mind that the people who write in to a forum like this will generally be those who have had serious problems with their medication. All drugs have potentially negative side effects, even relatively safe drugs like aspirin. The big thing is that the advantages of herceptin outweigh the disadvantages. The most conservative estimate is that herceptin used by itself reduces recurrence by 1/4, which is substantial.
Also, herceptin works much better against primary cancers than secondaries. Even among women who aren’t cured, early herceptin significantly lengthens the time before secondaries develop.
There are a few things to keep in mind with herceptin. Probably the most important thing is not to book too much into the back end of the year of herceptin. The side effects can build up, so don’t assume that you will be as peppy towards the end. In retrospect, I wish that I had gone back on sick leave during my last few months of herceptin, but I didn’t think of that at the time, even though it would have been possible.
Also, if you have side effects, try to get help with them. I resisted asking for medication for my insomnia, but dealt much better with being on herceptin once I did that.
Best wishes,
Christine
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Think you need to ask your onc about percentages to help you make a decision. I was told that by having chemo AND herceptin, it would only make a 3% difference to the chance of recurrance. For some people it is more beneficial than others.
Thank you all for your input. It is good to hear that some people are finding Herceptin acceptable. I will discuss my concerns with my Oncologist when I next see him. I think that for younger women Herceptin is a definite yes, but, I am already 71 and am not sure I want to waste another 18 months being ill and tied down with more infusions if the percentage of improvement in life span is small. I could be out there getting on with my life.
Thanks again ladies
Hello Emmbee
You must do what is right for you, and I totally understand your hesitation. But 71 is still a young age for you to enjoy many things that life has to offer, and you may not suffer too many SE.
I am one of the unlucky ones I feel, but even with what I am suffering I am SO glad that I have the chance of having Herceptin and I put a lot of faith into it.
By the way, I just love the photo of your cat… he/she is so cute. I love ginger cats. Just thought I would add that.
Take care
P x
Hi Emmbee,
You will not spend another 18 months being ill. I know of no-one who has had adverse reactions on herceptin. I got tired towards the end, but that is all. I have three children, I work and I run & swim - if I wasn’t so active I might not have noticed. I used to chat to the other ladies in the chemo suite, some of whom had been on herceptin for several years, and no-one complained of side effects, other than weak nails.
You are only 71 - you could have another good 20 years ahead of you! My mother died two years ago from cancer at the age of 72, and I feel she lost out on so much still to come. My father died at 64 - I think he lost 30 years to cancer (his older siblings are just starting to die in their 90s)so please do not throw away this chance for good health.
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Hi Christine
I didnt know Herceptin could cause insomnia. I too have had insomnia since about the time I started Herceptin. Just assumed it was a reaction to dx and all the chemo etcetera. I seem to sleep for about 2 hours wake up. Go off again and so it goes all night every night. I also didnt think doctors would prescribe anything for insomnia. Your advice would be welcome.
Dear roadrunner,
Thanks for the input, you sound to be doing well. My problem is that having done a lot of research I realize that Herceptin is only as good as the way the statistics are jumbled. It would appear that in trials, 82 women who had Herceptin were alive after 4 years and of those who did not have Herceptin 79 were still alive. Those figures are not good especially as 8% of those on Herceptin developed Congestive Heart Failure which is irreversible. CHF is more prevalent in older women which is one of my reasons for concern.
I think I must talk to my Oncologist.
Thanks
Dear peacock,
I have just read your post on ‘When will I feel better’. I am so sorry you are having such a bad time, presumably with the Herceptin as that is all you are having. Mind you, many more people are complaining about the side effects even though there are not supposed to be any. It is difficult knowing what to believe. Have you had a chat with your oncologist?
The cat is not mine, he does not know that, he lives next door and comes here when they go to work. He is lovely.
Hi: Just read thru all this and thought I would throw in my comments.
Last week with my onc WE decided that herceptin was not for me. I have supra-ventricular tachcardia and have for 25 years (irregular heart beat). Had monitoring for heart and echo-cardigram to check status. My heart is OK but will probably have another echo in a few months time.
The benefits to my survival stats would have been 5%, the risk to my heart was 4% - we didn’t think it was worth it - added to which had we gone ahead I would have been echo-cardio each month, etc.
I have just been told by my BCN that they won’t be ringing me each month to check I am OK because I no longer have cancer (hooooooray) but will continue with the Arimidex and six monthly checks, etc.
We all respond differently and have a different base to start from, but heart damage doesn’t always reverse itself.
Talk to your Onc in great detail.
Trust all goes well for you.
LOL
Julia
Dear Carriann,
Thanks for your post and the information. It is so good that your Oncologist has been honest about the stats and that you have jointly come to a decision about the Herceptin. However, I am somewhat confused due to you already being on Arimidex, and also being considered for Herceptin, as Breast Cancers are either hormonal or protein based so would only respond to one drug or the other. Have I missed something somewhere?
Great news that you are clear, get on with your life and enjoy every minute.
Thanks again
Dear emmbee
First of all…breast cancer can be er+ pr+ and her2+ so yes people who are could be taking herceptin and arimidex.
Where did you get those figures about herceptin trials? (The ones about 79 women and 82 women) They look wrong to me. Results from trials and now from quite widespread use of herceptin suggest, as others have said, very good results on herceptin. I think herceptin is one of the two big breast cancer drug improvements (the other one being tamoxifen).
Herceptin does not work for everyone who is her2+ but I have no doubt that it has saved lives and extended many others. There are real statistics to back this up.
Yes, like all drugs, herceptin has some side effects but having known many women on this drug, the side effects are generally not as bad as those on chemotherapy, and many people don’t get any significant ones.
Each of us makes our own individual decisions about treatment, but I think it is important to make those decisions on the basis of sound evidence and information. You seem to have some very inaccurate information about herceptin.
best wishes
Jane
Dear Jane,
Thanks for the post. I am aware that I do not know enough about Herceptin, exactly why I am on here and trying to find out. All I know from stats is what I read. It is a pity that I did not bookmark the double blind trial which came up with the numbers I posted. There were 100 on H and 100 on a placebo. Figures looked good to start with but time passed and things happened and the final count was indeed 82/79. I will look again when I have the patience.
There is no doubt that I will be asking lots of questions when I am due to start Herceptin.
Thanks again
I looked up the most recent update of HERA, which was the big trial of herceptin after chemo and 79% of the women who got herceptin after 4 years had no evidence of disease, while 73% of the women who did not get herceptin were also free of evidence of disease. I think that this is more significant than just being alive since a terminal patient on their last legs still counts as alive.
Whether herceptin is worth it or not depends on your personal circumstances. The risk of a recurrence was reduced by a quarter (25%) when herceptin was used after chemo, but that a quarter might not be very much for a patient with good prospects.
The really big heart problems come in when herceptin is used with taxanes soon after anthracyclines, which I don’t think is what your oncologist is probably suggesting.
I think that you are probably picking up on some of the legitimate concerns that have arisen about herceptin. Herceptin did look much better four years ago when giving it after chemo seemed to halve the risk of recurrence. The problem is that the really big sustained reductions in recurrence have been found in herceptin-based chemo, but there are big problems using herceptin with a taxane after an anthracycline (which is mainly down to the anthracycline’s effect on the heart).
There are possible solutions around this, such as using herceptin with a taxane before the anthracycline, but this has only been tested in small trials. It is currently being tested in the SOLD trial, which I personally think has the potential to solve many of the problems facing her2 positive patients (since in the trial of 250 women the herceptin group actually had better heart health than the controls and didn’t need to spend years in treatment).
Unfortunately, in ways it is a tough time to be a her2-positive patient.
Hi Christine,
Thanks for posting again. I also looked at the Hera Trials and I have to say that the results are not now impressive. A recent British trial has come up with similar but more worrying findings.
I have now had 4 of 6 cycles of Taxotere which is not supposed to cause heart problems. I started off on Tax and Cyclophosphamide but was so ill I was rushed into hospital. My Oncologist decide that Tax was enough for me. I am due to have 15 sessions radiotherapy after a months break following the Tax and then start Herceptin on it’s own for 1 year. I am arranging to have a good talk session with my BCN next week so will see how that goes.
Thanks again for your sensible post.
Hello Christine,
Interested that you’ve found an update for HERA. Could I ask where you found it? I remember you made the point before about the longer term results possibly being skewed because everyone on the trial was offered Herceptin in the end. Do you still think that’s the case?
All the best,
Sharon