Experiences of herceptin

Hi Folks,

I am going to see my oncologist next week following a mastectomy due to a third recurrence. I have been told by my consultant that my cancer is being re examined because tests were inconclusive as to whether it is or is not Her 2+.
It is expected that the onc. will discuss whether I have Herceptin or a new chemo regime (FEC didn’t work for me) or both.

I have read postings about the other types of chemo and the side effects but I haven’t noticed too many comments on the side effects of Herceptin. I even notice one lady had been on a year course of Herceptin. Is that usual? I had also heard that herceptin can be given in tablet form.

I know I will get good info from the Oncologist but I would like some views ‘from the horses mouth’ so to speak. Sorry ladies and gents no insult meant!

Thank you

Carol

neigh lass - no offence taken LOL.

Hi Carol,

I expect you will find from others that post in reply that the one year course of herceptin is the norm. I have never heard of it in a tablet form though. As I have secondaries and am HER2+++ i am on herceptin now for as long as it continues to work for me. So far it has been almost 4 years now and I have no side effects that i know of. You can occasionally get a reaction with the first dose which is called the loading dose. My hospital administer the drug (intravenously) over 90 mins but i have heard of some doing it in a much short time. But on that first visit you will be kept in for quite a lot longer just to be sure that you dont have any reaction. You might feel a bit fluey the next day.

dawnhc

Thanks Dawnhc, I hadn’t realised it was quite so intensive.

It appears a bit of a double edge sword to me. If it turns out I am HER2 + I understand it make the cancer a little more aggressive hence Herceptin. I am ER neg so I won’t have hormone treatments on top.

It all gets messy doesn’t it

Regards
Carol

I’ve had 9 doses of Herceptin so far and have been told I will get 17 which means I will finish in May of next year. I’m very fortunate in that I get my Herceptin done at home, the hospital treating me has funding to provide this as many patients like myself have to make a 50 mile round trip to the hospital. I feel very lucky to have this as it’s less stressful having it done in your front room. I have mines done in the morning and am able to get on with the rest of the day.

I had a continual sniff with the first 3 doses, but now this only lasts a day. I have just had my 3rd heart test and this was OK too, the last 2 have scored in the high 60s. I had a very hard time on Taxotere, ending up in the hospital after the last one with a bad chemo burn and no immunity. That was late June and I’m now feeling and looking great. Saw my oncologists today for the first time after being in hospital and they said I looked really well, they couldn’t believe the change since the last time so I was pleased.

Thanks Cherub,

Do you mind if ask if the Herceptin came after Taxotere?
I have a gut feeling I will have Taxotere, its sounds nastier than FEC.

Also what is the significance of scoring.
Cheers

I had one Taxotere on its own, then the following 3 were given with Herceptin. I then went back to the hospital for 1 more Herceptin as my veins were a bit iffy, also they wanted to make sure everything was OK for the home visits. This was also because some of the other oncs wanted to see the effects of the chemo burn to my hand, they also wanted the nurses to see it (it’s been photographed as someone is planning to write a paper on it). Taxotere was pretty nasty for me as I had very extreme joint pain and fatigue with it, but I just kept telling myself it was only for 12 weeks and I would get through it (or as my OH kept saying “we’ll get through it.” As long as the pain is managed it’s doable like everything else, just not very good at the time. My onc told me they sometimes find that Taxotere and Herceptin together can make the fatigue worse, which it would seem happened to me.

With the scoring, if your heart test goes down below 50 it means the Herceptin is affecting your heart function, so they have to suspend the treatment until it comes up again. My onc told me I would know this was happening if I started to feel any shortness of breath. I believe they can suspend Herceptin for up to 3 months as that’s how long it stays in your body.

Thanks Cherub,
All this is really helpful information to have at hand for my meeting with the onc.

I believe I have just added to a comment of yours on another thread!

Hi there,

Ive been on Herceptin for 6 months and its goes through a drip for 30 mins then they put a saline solution through me for another 90 mins as there is a chance your blood pressure can go low so they like to monitor you for that time, Ive never had any side effects from this, absolutely nothing, they may as well be putting water through me, hopefully not!!! Im on it for one year and have it every 3 weeks, you also have to have a heart scan every three months and thats nothing to worry about.

Good luck

Tracey

Thank you too Tracey,

I am beginning to wonder if I can have Herceptin because I do have a heart condition, not too bad but I do get a lot of palpitations, still I expect I’ll know by next week one way or the other.

It’s good to hear of the lack of side effects akin to chemo, what am I saying this could damage my heart, I could have a heart attack or maybe faint from low blood pressure, oh me oh my what shall I do - Only kidding I am just trying to brighten the evening up.

Cheers

Hi Carol

I had my last chemo on 3 Aug. I had 4 EC and 4 Tax. The Tax was given alongside Herceptin which I will continue to have every 3 weeks until next May. I am also taking Femara because I am ER+. The fatigue on Tax was dreadful. Since that stopped I have slowly begun to feel better and have not experienced excessive tiredness on Herceptin. I was worried about taking it because my father and both my grandads died of massive heart attacks in their 60’s and I also experience palpitations. I was given a thorough examination by a cardiac consultant and had to wear a portable ECG thing for 24 hours to keep a check on heart rythmns. I was told everything was ok to go ahead. So far, I’ve not experienced any problems with Herceptin. However, my first MUGA scan was 68% and my second was 60% so my heart function has gone down slightly but my Onc isn’t worried. I’m due to have another MUGA in November and am hoping the % has not gone down too much - but I’ll cross that bridge when I come to it. I feel very lucky that Herceptin is around because I want to throw everything that I can at these blighters!

Hope this helps

Love
Jibby X

Thank you Jibby,

That puts my mind a rest re the heart thing.

I hope you continue to improve and that May comes round pretty quickly for you.

Cheers

Carol

Hi Carol,

Just wanted to respond to you saying that your herceptin tests were inconclusive. So were mine - I came out borderline. My onc dithered for ages, but finally decided I should have herceptin just in case. As a result I didn’t start the herceptin with the Tax as most seem to, but I will now start after rads.

Thank you RoadRunner,

If I am still borderline I hope to convince them to go with Herceptin as a belts and braces sort of thing.

I’ll keep in touch
Carol