i have just been reading about your muga scan results and stopping hereceptin, i had three left to go but the herceptin have been stopped because of the same problem, because my herceptin is nearly finished it is not going to make much diffence, also i had a local reccurance anyway so the herceptin did ot prevent that but at the moment i am cancer free.
I am currently mid way through my Herceptin and so far so good. My heart ultrasounds shows no problems though have to admit did not get told percentage function. I had the Herceptin started along with my 5th chemo which was tax. I had 3 FEC and then 3 TAX and then 20 rads. Side effects of herceptin appear to be difficult to gauge as I am also on Letrozole. Very achy stiff joints, runny nose (a bit like an allergy) and intermittent lethargy. However, like so many others have said I am keen to have the whole 18 treatments if possible as I see it as quite significant to us Her2 positives. There was a trial here for women to only recieve 3 herceptins. I said, 'thanks but no thanks to that offer!!'
Yes had my bp checked and it was fine. My next muga scan is August and i had my last one in April and it was above 60%. The doctor today checked my ears, throat, eyes, temp and listened to my chest and said all seemed fine. He said i would have to see my own gp for blood tests and for a heart scan . I telephoned bc nurse she just advised me not to drive and said to speak to the nurse who will be infusing my herceptin tomorrow. Had another 4 funny turns since last post.
ive been more hypertensive. Shirley when did you have the last echo scan and what was your lvef %?
I was just wondering if any one else has become a bit light headed reguarly whilst on herceptin. I have my 4th infusion tomorrow and for the last 10 days or so i keep feeling light headed and a little dizzy. I have been to the walk in centre today and they think the problem could be related to my heart. Does anyone know if this means my heart score could be dropping.I am not due to see the consultant untill August .
Ninja do let us know how you get on as Choccie says im sure its standard and should not be with held.
Ninja, for primaries 12 months of Herceptin is the standard, so I'm not sure what else might have been involved in the conversation you had with your BCN. For secondaries that are HER2+, Herceptin can be given for as long as it's effective. (I think that's the case, I'm sure any HER2+ secondaries ladies will correct me if I'm wrong).
I have also had 6 x FEC, and my onc read me accurately when he told me about the study but then said "but I don't think you'll want to do that", he was right.
If you're interested, the NICE guidelines can be seen here: http://www.nice.org.uk/CSGBC. Warning - don't read if you're sleepy and trying to stay awake, they are VERY dry!
Notts thats interesting, i had 4 fec and 4 tax and 4 of my herceptin were with the tax, throwing everything at the cancer and i am now in remission starting rads on Monday. They call it there buckle and belt approach so far so good. Im wondering what treatment others have had with herceptin or is it pretty bog standard?
Ninja how can that be if your HER2 pos I thought they had to give it to you. OR is this government now making changes we dont know about?
Well, I had a BCN phone me up yesterday to tell me that I can get funding for Herceptin for 12 months. Only.
Interesting thread. I was asked to go on the persephone trial and said no. The reason being that they suggested 6 months of herceptin was sufficient based on a study in Finland, where women had only been given 9 herceptin doses. BUT all those women had had TAX; I have only had 6 FEC so I didn't think it comparable to me. I told the onc I was worried if I had 6 months of herceptin instead of 12 the cancer could come back. She said 'if it did we could give you more herceptin then'. Triffic, problem solved then, I don't think
I did a really long reply and sent it and it didnt send so sorry folks cant type it all over again maybe later.
My situation is probably a little different as I have herceptin for secondaries. But when I first started having it back in 2004 my first LVEF reading was 63%. I have been down as low as 42% and up as high as 68% and everywhere between LOL. When it went down to 42% the important thing was that I did not have any symptoms of there being problems i.e. swollen ankles and shortness of breath. As I had already had many different chemos, herceptin was my only lifeline so the consultant agreed to continue. I did see a heart consultant who ran a number of tests and found there was no problem. But because I was on herceptin longterm he did put me on a very low dose of and ACE inhibitor. Can't remember the name because I have since switched to a different type because I was unfortunate enough to have an anaphylactic reaction and the allergy clinic felt the ACE inhibitor could have contributed to it so I was switched to Losartan.
I often wonder when we get a low reading if it is worth asking if they will repeat it asap as the readings are not always that accurate.
I had 4 treatments and then my second echo showed that heart function had dropped from 60 to 50%. Had another echo this week, but still down at 50%. Now got to go and have a different type of test (contrast) but herceptin stopped for time being. Not at all happy as only had 4, but you can't mess around with your heart.
The trial is called Persephone , which found odd considering the story involved 6 months in hades and all that. Anyway am glad your herceptin is to go ahead. Dx
thank you all I had a phone call from the onc it is very normal 59% the cut off point in Exeter would be 53% differs from place to place so Herceptin to carry on. Please do keep the posts coming though as its very interesting.
There is a study going on (forgotten the name) which is looking at 6 months of Herceptin versus 12, so clearly someone thinks that 6 months is very adequate.
I'm about to start Herceptin and had a baseline scan before 6xFEC and again last week after the 6th, so it'll be interesting to see if the FEC has had any adverse effects.
Unfortunately I found myself in that situation in Novemeber 2010. My ejection fraction fell from 63% to 40% and my Herceptin was stopped. I am now on 2 heart tablets and my heart is almost back to normal now, but I will not go back on the Herceptin as the drop was so big.
I had had 9 infusions and was reassured that the extra 9 would not made a big percentage difference.
PM me if you want to ask anything
Sorry to hear that you are having problems with your LVEF. My Onc told me that the cut-off point was 50%. Maybe other people think differently. I understand that there are 2 schools of thought on how much Herceptin we need. One says that 6 months is enough and some countries only give that. Your 9th will be the 6 months so maybe your Onc will be happy with that if he/she thinks you should stop.
this one coming up will be my 9th herceptin and my overall health is brilliant, with cancer in remission. Thank you for your thoughts though.
So sorry you ave this worry. I have not had this happen personally, but I have heard of it. Some women have stopped for a few months then restarted after their hearts have recovered. I do not know the current state of your health generally, but if it was me and I wasn't below the limit I would be pushing like mad to get the herceptin. Obviously if you have significant health problems they may be extra cautious with you. How many herceptins have you had? I have heard that it is unusual to have problems later in the course and if there is going to be a problem it tends to happen quickly- but that is only hearsay.
Really hope this gets sorted for you.
Hi all had my echo scan today and my LF has dropped from 65% to 59% the chemo ward are asking the doc if Herceptin can go ahead as planned as the cut off % is 53% has anyone else been in this position or had it stopped and then started again?