I'm a bit worried, as my pre-FEC LVF was only 59%, and it dropped to 53% before I even started Herceptin. With very high HER2+++ I am extremely nervous that they'll take me off it after the first 3 months. Oh well, only time will tell.
I have come back from my herceptin today number 10 my heart function has dropped 10% from last time so its down to 59%, 50% being the cut off. I started herceptin at 73% so thats a large fall. They are doing yet another echo next week and may bring me off it for a rest period should it have dropped again.
I took part in the sold trial in 2009 in Glasgow..I was put onto the long arm of the trial in which I recieved 3 Taxotere with 3 herceptin together then I had 3 FEC...I was then supposed to go on and have another 15 herceptins but I had to stop after 4 as my heart function dropped to 42 and I was taken off study..the saftey level was 45....heart problems are rare but can be more of a problem after FEC which is an anthracyclene based chemo which reacts with herceptin....I have had about 10 friends who have all went on to complete the full herceptin course....so it's just been my bad luck that I fall into that 10% of people who can develop heart trouble...thankfully to say 2 years on I am fully recovered, heart back to normal..hope this helps..
When my onc was trying to get me to do the trial, I said "but what if 9 treatments isn't enough and the cancer comes back". Her reply was "well if that happens, we can give you more herceptin then". Good to know that my life being turned upside down by this stupid disease again wouldn't be a problem to them.
I thought I was being over-cautious but I am coming down on the side of a full set of treatments. Just got to talk this over fully with my husband and daughter when I visit her next week.
They are probably right about 6 months being sufficient, but why such a big reduction? Why not cut to 9 months and then assess the situation?
I'l get in touch with the 2 North East Breast Buddies and have a chat with them too.
I am from Ayrshire, Scotland and I was offered to enter a trial to get only 3 Herceptins as opposed to 18. I didn't think long before saying 'no thank you'. I wanted everything thrown at the wee bugger in the hope that it scares it away for good. I had a 1.9mm tumour with no node involvement and had fec/tax and rads.
I have had 3 heart scans and so far so good. I have had 10 Herceptins and managing these well. It is a very personal decision and one which you have to make for you, however I hope these comments help you. J.
I was offered this trial too. I googled the trial details and it quoted some study in Iceland where women had had 9 treatments over 6 months rather than 18 over a year. The reason I said no to the trial was that these Icelandic women had all had TAX whereas I only had FEC.
I got a heart scan before starting herceptin - I think this is standard and it has to be repeated every 3 months. Apparently if there is too much heart damage you can be taken off herceptin.
I agree with Midge - better 12 months when 6 would have done, rather than 6 months when you needed 12.
It is a difficult decision when you have heart issues. My heart is a bit unpredictable in certain circumstance, as is my sisters, but we have no history of heart problems later in life in our family. But my onc decided not to give me herceptin alongside tax as she didnt want to confuse side effects in my case.
My tumour was 19 mm and I had 1 node affected. I was offered the trial, but didnt take it. I know that they are having difficulty recruiting enough women to it. My reasons were that I wanted the maximum treatment for my primary bc. Her2+++ cancers were at one time the worst prognosis and it is only with the advent of herceptin that recurrance stats have improved. So, although I would love less treatment and herceptin is a hassle and for me does have some side effect I would rather be over treated than under treated. I am always anxious before my echo's to check my heart, but so far (am due herceptin 13 next wk) I ef has stayed at 65%.To be honest if they came back and said actually another year would help I would do it.
But I totally understand your concerns with your heart and I would talk seriously with your onc and ask for a heart referral before you start. I would also mention your bowel concerns, but you may need to go to your gp about that as they will probably tell you it is not bc related.
I do have a friend, who is best friends with an oncologist. She said that they are pretty sure 6 months is enough, but need the stats to back it up, but i was not prepared to take the risk (i suppose i feel things are already risky enough) Margaret in the north east breast buddies is a nurse and discussed the trial with the doctors she works with and knows very well. You might ask her what they said.Kim also had the decision to make too.
Sorry if I havent been much help, it is a difficult decision and some people do have less treatments for a variety of reasons. I have read some posts on here from people who have opted for 6 and they may be able to post their perpective. Hopefully, ultimately 6 months will turn out to be all that is necessary, but for now it is hard to make that choice when even the oncs dont know for sure yet.
I am being treated at Durham and have been approached about their Herceptin trials. I just wondered about others opinions.
I am down for the 12 months of Herceptin after FEC, the trials are to reduce the treatment down to 6 months of Herceptin.
I was caught early with a 14mm growth, the consultant thought I'd not need chemo. Then the sentinel nodes showed 1:3 so he went back for Axillaries - 10 clear. The chemo is only because I was 1:13 so it is just a precaution.
We all know that Herceptin can affect the heart muscle, and both my parents had heart problems in later life.
Now, my dilemma is, do I go on the trial and risk cutting short the cancer treatment in favour of looking after my heart?
I do have another concern, in that I have had changes in bowel movements over the past few years and was considering seeking advice, but BC showed up first.
Is there anyone else out there considering the trial?