Herceptin.

Hi All,
I was wondering if anyone knows the answer to this question.

If you stop taking herceptin before the end of the course, does it still make a difference?

I am been given Herceptin because i’m only 28, and they are throwing everything they can at me, which i apprieciate, but, my onc says my chances are so good anyway the herceptin is only making a small improvement to me, and as my veins are shutting down, and i have spent the last ten months been sliced, diced, prodded, poked and stuck with pins, i’m getting to the point where i just want to move on and put this behind me. I just wondered if the treatments i’ve already recieved would give me some benefit?
Thank you
Debs x

Personally debs I would finish the course xxx you just never know and I know if I made that choice then god forbid it spread I would never forgive myself x how many more to go? I say stick it out and don’t take any chances xxxxxx it will soon be over then get on with life again safe in the knowledge you got the works and got thru it

Lynn

Ps iimagine the course of herceptin recommended by our onc is based on research into the effectiveness of the drug and the dosage required to do good so cutting it short may have a detrimental effect???

I suppose I see it like a course of antibiotics, don’t work unless u finish the course xxx

why not buzz your onc and ask them? Xx

Hi Debs, I’m with Lynn on this. I know you get totally fed up with all the prodding, poking se’s etc., but if the onc is recommending this, then take it until the end. It will pass eventually and you’ll know you’ve done everything you can to halt this bloody awful disease.

Take care of yourself and good luck for the future.

Lots of love, Dianne x x x

(Lynn, we must be posting at the same time today x x )

Hi, I’m also on Herceptin and after session number 11 yesterday (plus 6 x FECT) it is getting very difficult to find a usable vein - but I feel it’s worth the hassle.

The oncology unit I attend had offered me the chance to take part in the “Persephone Trial” (google will bring up loads of info :-)) In short, it’s a study to show that a reduced number of herceptin doses - 9 instead of 18 - is as effective as the full rate that the UK currently reccommends.

I wasn’t brave enough to try it.

S

Although I’m with the others in agreeing that I would always try to finish any course of treatment recommended to me, to try to have the best possible chance of staying cancer free, there is currently no rationale for the 18 dose (1 year) course of herceptin. It was a number essentially plucked out of the air for want of something better. There are trials ongoing to test different lengths of herceptin treatment for primary breast cancer - in particular 9 doses compared with 18.

So if you can’t tolerate the full course, if you can manage half of it I would say that you have given yourself a good chance.

Thank you all for your veiws, I think i know deep down i have to do it, it’s just i thought that this would be the easy bit, and it’s still hard. Also my little girl (4) is still struggling to cope as she sees me still having medicine she thinks i’m still ill. I’ve explained it is medicine to make sure i don’t get ill again just like her vitamins but i don’t think at 4 she has a good grasp of that.
I’ll keep going for now and set myself a target of just getting to the nine, then maybe push my self a little further.
thanks again. x

Hi Debs 28
I am on herceptin after having 6FEC/TAX. My veins were awful as well. Have they not offered you a port or picc line? I had a port put in after chemo number 2. It is the best thing I could have done, no more messing about with the needles, no maintenance from me I forget its there. I was offered the trial of 9 v 18 herceptin, I wasn’t brave enough to opt in. I too believe take everything on offer and then I can’t look back later and wonder what if.

I have just had dose 6 of my 18, sometimes it does seem like forever to get to the end.
Good luck
Marian
xxx

keep chuggin girls, I have 4 herceptins and some days it feels like I’ve been havin treatment forever. I have one vein left, that is used every time and I’m hoping it holds out (had 4 x FEC and 4 x TAX). Until the results are published re 9 instead of 18, take the lot, if you can.

best of luck
x

Hey. You could look up the Scandinavian study…think it was called FinHer (3 months is as effective as 12). New Zealand changed its protocol as a result of this and only offers 3 months’ Herceptin. A lot of protest about it though. Other people (eg in parts of USA and Middle East) take Herceptin indefinitely once diagnosed her2 to attempt to prevent recurrence. Who knows?
I took a month off between FEC and Taxotere coz I’d had so many complications and problems I was feeling just like you. Believe they might need to give you another loading dose of Herceptin, depending on the length of the break. Better that than give up. xx

Apparently, 9 treatments are proving to be as efective as the full course, which is being considered a bit of over treatment now.

Hello , I am a Dr and a Breast Ca survivor . I totally agree with your Dr . the studies show the best results are achieved with 12 months Herceptin . As far as your veins are concerned you can discuss with your Dr insertion of a port , this would make the treatment so much easier !!! good luck !

I agree with the post above, I am on herceptin and I have a port and it makes it all so much easier. No more hokey cokey with the cannula on each visit and it is not sore afterwards like your arm is.

Hi, first time on here but needed some advice. Just went to hospital to have my 10th Herceptin and was told that they couldn’t give it to me due to my heart scan had dropped 20%. I have a meeting with my doc on Monday, but am now concered that if I can’t have anymore, will this affect me in anyway, and will the last six months of Herceptin have been for nothing. Hope to get some answers on Monday.

Hi Deputybeetie,

I have herceptin with a group of ladies who have all been going for some time. (I’m on number 12) One lady had to stop 4 times because her heart scan showed up problems. Each time she had a break her heart returned to normal and she continued with her treatment. It took her 4 months longer than the rest to finish but she got there. Hope this gives you hope that what you’ve had so far isn’t a waste. Good luck on Monday.

Jan xx

Thank you for your reply, it is encourging seeing how other people have overcome these problems. My doc says to have a break from it and wait for my heart to return to normal and then start Herceptin again. Got to have chest x-ray, Echo scan and go and see the heart specialist. It’s quite nice knowing that I am not going to be poked about for a few weeks, but am hopeful that I can finish the treatment.

xxx

Sigh, I am here to ask question on behalf of my younger 44 yrs old sister who was just diagnosed with BC.

Onc. asked of her to go for Chemo + radiation+ taximofen 5 yrs. She has DCIS, 5mm lump clear margin, clear nodes but ER+/PR+ and HER2neu 3+ overexpression?? Why she was asked to go for a choice of 3, 6 or 9 doses (each dose cost about US2,000)and some of you go on for 1 yr on Herceptin?

i read that Herceptin can be use alone in combination with Taximofen, if in such early stage, can she choose NOT to go with Chemo as some said, it can be overkill and less defence if there is a recurrence in future.

any help is great, i am lost!

thanks, Estee

Hi Estee
I think the chemo option is because she is Her2+++.which they treat with herceptin. However you cannot have herceptin without having had chemo- although the reason for this has never been fully explained to me. Her2+++ cancers tend to be aggressive and therefore are treated aggressively. There are trials to see if 12 months of herceptin is really needed. Some countries have already reduced the number of doses but of course time is needed to collect evidence of effectiveness and herceptin is still relatively new for early stage bc. I would suggest talking through you sisters results with the helpine or contacting her team at the hospital. I wish her good luck with her treatment. Best wishes to you both dx

Hi Midge and Estee 61
I was at my annual check up a couple of weeks ago and whilst going over a few things I mentioned to the doctor about the fact that I was told I could not have herceptin without chemo (personal choice not to have it). He totally suprised me by saying that there has been a change of policy and you can now have herceptin even if you do not have chemo.
Hope this helps somebody
R x

That is really interesting. I would probably have to have chemo anyway as had 1 node involved but others with no nodes may get away with no chemo. Thanks for passing that on. Debx