How long should you be on Herceptin?

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Hi ladies,

I have written on here once or twice regarding my sister, who is 46. She had DCIS, 7 years ago which resulted in a mastectomy, but no further treatment and last September was diagnosed with HER2 positive invasive cancer after feeling a slight lump under her armpit. She had 12 chemo sessions followed by radiotherapy and is now on tamoxifen and has started 3 weekly sessions of Hercaptin for a year. What I would like to know is - do you generally only have a years worth of Hercaptin, or can you have it for longer and do we know if there are any benefits on having it for longer??

I don’t know if anyone has any ideas or thoughts about this, but I would be very grateful to hear them.

Many thanks.

Penny x

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I had herceptin for primary and was given 18 doses. (1 year).

There are ladies who have been on it for longer for secondaries.

Debbie

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17/18 is the norm for herceptin for primary bc.

I have secondaries and have been on it since Jan 04. At that time I had exhausted all chemos available and as herceptin has worked well for me I am staying on it for as long as it continues to.

dawnhc

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Dawn,

Have you been on herceptin on the NHS since 04?

Penny

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Hi Penny

Yes :slight_smile: back in 04 there was no problem with secondaries getting it.

dawn

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hi i have just started herceptin and have a year of it… i was asked if i wanted to do a trial. the trial is for 6 months of it. they want to see what difference it makes to heart etc… apparently in Finland they only have it for weeks not a year not sure how long but over a very short time… you still have the same strength though… when it was decided to give herceptin a year was the ball point fig as all new… now they think its not necessary to have it for a year and want to cut it down to 6 months hence the trial… hope i make sense as not very good explaining things and i am sure someone will do better. take care and have a good night. my second dose is next Tuesday.

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I had my 9th infusion of 3-weekly Herceptin today, I was prescribed 17 in all (one year). Mine is for primary HER-2 positive breast cancer. Like your sister, it manifested itself as a lump deep in the armpit, it was a miracle I noticed it actually. Lump turned out to be a lymph gland containing bc cells, but finding the primary in the breast was difficult, and only an MRI scan picked up breast tumours.

As Dawn has said, secondary HER2-positive tumours are treated with Herceptin longer term.

xxx

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Hi Nixon,

I have posted below the link to BCC publication on Herceptin. Hope it helps.

breastcancercare.org.uk/content.php?page_id=696

Regards,
Jo, Facilitator

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Thanks for all your comments everyone, I really appreciate the input.

Penny x