another question if I may?? I was wondering if any of you ladies that are having Herceptin are also having Tamoxifen? I only ask as initially I was told that I would prob be on Tamoxifen after chemo and rads, but when they found out I am HER2+ my trials nurse said this was likely to be changed to Armidex and Zoladex. I’m not really sure why!
Anyhoo, I saw the onc reg on Monday and she told me that I will be starting Tamoxifen as soon as I start my rads in Nov and then will be starting Herceptin about 3 weeks after rads finish. I am 35, pre-menopausal and my periods have continued throughout chemo.
I just want to know if there is anyone on Herceptin and Tamoxifen, or if all that are hormone recpetive are having Arimidex instead. I’m sure they know what they’re doing but I need to know I am getting the best possible care.
Hi Kelly,
I’m about to start heceptin and tamoxifen - scares the s**t out of me. I think in my case it’s because i had three different tumours within the one lump . one, will respond to the heceptin hopefully, and one to the tamoxifen hopefully - will let you know how it goes …
cheers
Caroline
Hi to you both. I am on Tamoxifen (Nolvedex D) and Herceptin. I only had one tumour. I am due my fifth Herceptin this week and so far have had very few side effects - some swelling of ankles and brittle nails.
Am very interested in comments as think will be on Herceptin for a year after chemo, which I think finishes either end Oct, or mid November. Not sure what else, but think will find out more on Wednesday after seeing onc. Have got questions for him though about Herceptin, as heard can cause slight heart probs, does anyone know anything about this?
Got one FEC left then onto Taxotere too, think same as you Kelly. Am bricking it about that, as read so many negative reports. But gotta remember we all react differently.
Take care all and keep us posted on Herceptin
Love
Dawn
x
think the heart problem side effect is quite a rare side effect, i get sent for heart scans every three months so they will do the same with you. I would of thought the heart thing was to do with maybe older ladies or ladies with known heart problems.
Thanks for your comment, good to know that its quite rare. Have read others saying have heart scans on reg. basis, so probably will be the same. Do you have any side effects with Herceptin? Just doing a little bit of homework, so can fire questions at my onc really.
thanks so much for your quick responses. I am so relieved to hear that it is quite ‘normal’ to be on Tamoxifen and Herceptin at the same time, as opposed to one of the other hormones such as Arimidex. I’m sure my medical team know what they’re doing! At least I hope so!!
Dawn - I am on E-CMF chemo. Due my 3rd day 8 CMF on weds, then 3 week break then I’m into my final cycle! I hope all goes well when you see the onc on weds, let us know how you get on.
Take care all and thanks again for your reassuring posts, much appreciated,
absolutely no side effects its just boring sitting around. The first couple of times i was kept in about six hours because there’s a chance of some kind of reaction but the nurses there said theyve never known anyone to react to it and now ive had a few they still like you to sit around for an hour and a half after to make sure your blood pressure doesnt drop low, she said it was the same in all hospitals, so half hour for herceptin and then an hour and a half on a drip, boring but pleased im able to have it.
let me know if you have any more questions.
Tracey
xxx
I am due to start Tamoifen & herceptin after rads (just finished chemo).
I understand that Arimidex is only if you are post menpausal - I am 45 and have not had a period for about 7 weeks now so maybe the chemo has finally knocked the periods out.
My onc says that I may change to Arimidex or similar after two or three years on Tamoxifen, but I will need to be properly post menopausal by then. I have read that two to three years of Tamoxifen, followed by the balance of five years on Arimidex or similar is a good therapy to have.
well I’ve been told that its defo gonna be Tamoxifen and Herceptin for me as opposed to Armidex, Zoladex and Herceptin. Apparently there was a small study done that suggested that HER 2+ women respond better to Arimidex than Tamoxifen but my onc now tells me there has been more research that suggests this is not the case, particularly in women of my age (35).
So, its Tamoxifen and Herceptin for me and I am totally happy with that now I’ve got my head round it all. Whatever I can take to prevent a recurrence I will!!! Side effects and all!!!
I was told today the remainder of my treatments will be taxotere and herceptin 3 or 4 of these and then herceptin for a year… I am 56 yrs old and hers2+ I am alittle scared but willing to do this because the studies sound very promising… is Taxotere like Tamoxifen alike?
I have just finished 3 x taxotere with herceptin and have another 15 herceptin to go. I am no expert but I don’t think taxotere (docetaxel) is the same as Tamoxifen. Not sure yet if I am getting any oral drug treatment. No one has mentioned it yet so I am keeping my head down!
I’ve just finished a year on herceptin. Was on tamoxifen throughout and still am. Have had hot flushes and weak nails, both of which I suspect are down to the tamoxifen, no problems at all with the herceptin.
I don’t want to be too personal, but have you gone through the menopause yet? My understanding is that arimidex and similar aromatose inhibitors are only really effective post-menopause because before that oestregen is produced in a different way and the aromatose inhibitors can’t touch it.
I have not yet gone through the menopause, I’m 35 and my periods continued normally throughout chemo. Thanks for the info re: Arimdex, much appreciated.
I’m glad to hear that you’ve had no probs with the Herceptin, and Tamoxifen doesn’t seem to be too troublesome either. I am due to start taking Tamoxifen on Nov 1st. No start date for Herceptin yet but have been told it will start within 6 weeks of my finishing rads. Off for my first heart scan on Nov 8th, hope it goes ok!!
Tamoxifen is not a chemotherapy! nor is herceptin. Both are hormone therapy: they are supposed to “make believe” to our cells that there are no hormons susceptible to make tumors grow: either estrogen (where is tamoxifen active) or a type of growth hormon I believe, that is where HER is active…
So they are not giving same effects as that nasty chemo…
Just to add my bit, this is my understanding…
Herceptin is a monoclonal antibody, which locks onto the ‘docking station’ on the surface of the cell, where otherwise a growth hormone would lock on (and would stimulate growth). Tamoxifen is a hormone treatment and works in a similar way, but with the ‘docking station’ that oestrogen would lock onto.
My onc also told me that Tamoxifen is best if there is any doubt that you are not past the menopause. I’m 44 and my periods packed up completely during chemo (July), but because there’s still a possibility they might return, Tamoxifen is most appropriate. He mentioned another drug (maybe arimedex) which works best when the ovaries have completely stopped, as others mentioned.
I’ve been having Herceptin with chemo (Taxol), and I’m due to start Tamoxifen and continue with the Herceptin for 5 years.
It’s nice to know we’re not alone, isn’t it?
All the best everyone with your new treatments,
love Jacquie
Thanks Jacquie… lovely explanation.
I am also 44, now on Herceptin for 1 yr (I am only “a bit” positive HER2), and from Jan I will start Tamoxifen. So, very similar picture as yours.
I too am on herceptin and tamoxifen ( i started that in Nov along with rads) I start herceptin tomorrow first one, Im nervous to but I am also relieved as its the final treatment albeit for a year. Tamoxifen for 5.
I am 48 pre menopausal or I was before chemo. I had 2 periods with 1st two then nothing. Although like Jacksy I have been told they could return.
