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Anyone HER2 positive

18 REPLIES 18
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Re: Anyone HER2 positive

Thanks for sharing your experiences Sandie. It helps everyone including myself to hear positive thoughts about it. x
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Re: Anyone HER2 positive

Hi lovelies,  

I am her2+ , was diagnosed last year in October.  Had single mastectomy in december, started chemo in february.

My surgeon said her2+ is not good as its aggressive but herceptin brings our stats up to everyone elses. So we're kinda lucky as its so targeted. He was pleased I would have this option. My children think of it as the perfect weapon. 😉

Ive had 2 AC chemo so far from 4 and after that start packlitaxol and herceptin.  I have been told as they are targeted the side effects are much less... the current chemo is doable.  The anti nausea and steroids make it possible.  I tend to sleep for most of 3 days and am very slow for a week,  but after that life becomes more normal.  

Its one heck of a ride,  but once you're on it its not so bad. 

Xxx

Sandie

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Re: Anyone HER2 positive

Hi Bushy

if you were HER2+ they would have herceptin to "throw at" your cancer to stop it growing and hopefully not return

 

Good luck with your results x

Donna

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Re: Anyone HER2 positive

Hi

I was told today that my tumor is ER- and PR- . I find out (hopefully) on Monday what the HER2 status is. I have been thinking that i hope it's not another negative, or that will make me triple negative. But from what i've read on a couple of forums (like this thread) people worry about being HER2+. So which would be better? to be HER2+ or triple negative? I'm confused Woman Frustrated

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Re: Anyone HER2 positive

Thank you for your reassurance it really means a lot to me and others who read the post but may not comment. A scary place to be in right now but knowing we will come out the other end a stronger person for it xxx
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Re: Anyone HER2 positive

Hello Cocolily,

 

I am from the Marvellous Marchies 2012 thread and I don't post very often now but the forum was a godsend to me at the time.  I was Her2+ had WLE , Grade 3, 9mm tumour, had chemo plus IV Herceptin and 20 rads. I just want to say try not to worry too much.  I was of the mind set from the start that I would try and keep my life as normal as possible and I did.  I worked throughout but went home if I was tired, yes I lost my hair but I didn't have many SE's from the chemo, never sick and the herceptin was no problem at all.  With being Her2+ treatment takes a little longer but in 12/18 months life will be pretty much back to normal.

Wishing you all the very best

KQ

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Re: Anyone HER2 positive

Thank you everyone for posting your experiences. xx
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Re: Anyone HER2 positive

Hi croolily,
A year yesterday i went for my first mamo that propelled me into this crazy world. I would say listen to your onc, who knows your specific diagnosis, and treatment options with risks verse benefits.
2 Ops and rads later + HER2 pos i opted not for chemo, but hormone meds (anastrazole) as no ovaries.
Wishing you well. Listen to all the info, ask all your questions and may your path be smooth. You will find seemingly conflicting info, this is because we are so unique
LL
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Re: Anyone HER2 positive

Hi,

I'm also HER2+, I was originally negative but oncotype dx showed as positive so local labs retested and found I was positive... bit of a shock. I've had 2 chemos so far and will start herceptin after chemo.

 

My oncologist said something like... some people worry about being HER2+ but it's not bad it just gives us another way of treating it... or something similar.  As Lynny says the herceptin gives an extra benefit, without herceptin I guess it would be a bad thing!

 

I read an analogy about cancer treatment - hormone and herceptin, which said imagine the receptors as mouths, the cancer can only grow if they're open and being fed, hormone treatment and herceptin close the mouths so the cancer can't feed and grow... I thought it made things simple to understand!

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Re: Anyone HER2 positive

Thanks Lynny and Donna,def feel a bit better now after you so kindly shared your experiences x
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Re: Anyone HER2 positive

Yes very reassuring, thanks Lynny. x
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Re: Anyone HER2 positive

Hi ladies

I am HER2+ and on my 15th course of herceptin.

I have not experienced anything untoward having this via subcut injection every 3 weeks.

I don't notice any difference after having the injection...no symptoms of any kind.

 

Hope that sets your mind at ease. x I know everyone is different.

Best wishes

Donna

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Re: Anyone HER2 positive

Everyone seems to suffer different side effects to different degrees. For me, no sickness, very, very tired and bloated! The first week is hard, but then I emerge, like a blanket has been lifted off me and I have two relatively normal weeks. The first cycle I kept thinking I would feel better the next day and the next day and the next day and didn't. The second cycle I just accepted that I would be 'poorly' for the week and am now enjoying my two weeks at work. As everyone else will tell you - it is doable! You will come out the other side!
Lynny
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Re: Anyone HER2 positive

Thanks Lynny, that sounds reassuring. How do you find the chemo is going? x
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Re: Anyone HER2 positive

Hi Cocolilly & Tussie
I am HER2 positive too. I was diagnosed in November, surgery December and started chemo January. I have had one dose of herceptin, sub cutaneously. I was given the choice of it by injection or by drip and opted for the injection as it seemed to be so much quicker than the drip, given that we will need to continue it for a year. Herceptin is a wonderful drug that brings our statistics into an equivalence with HER2 negative girlies! Yes we need a whole year of it every three weeks but once we have completed that, we are virtually the same as the negatives. Good luck to you both.
Lynny
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Re: Anyone HER2 positive

Best of luck for Friday, you will be fine!
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Re: Anyone HER2 positive

I've got my WLE this friday … 1st one and hopefully the last !. Good luck on Friday.. and me will take what they give me…
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Re: Anyone HER2 positive

Hi Cocolily. I am also HER2 pos and fretting about that big time so I am sorry I don't think I can be of much help at the moment. I have to go for another WLE this Friday as not enough margins on the previous one, then I think it will be chemo with Herceptin unless they have to do a mastectomy prior this. What I have read is that chemo and Herceptin is the standard treatment and if that is what they recommend I will go for it. Keep well! x
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Anyone HER2 positive

Hi, Any HER2 positive ladies on here ... who can put my mind at rest..  x