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Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working ?

20 REPLIES 20
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Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

Hi,

I'm glad to hear some positive results from Kadcyla. That's encouraging. I'm still no closer to starting treatment as the Gynae team who are doing the biopsy didn't receive my referral. Now I've chased it up twice and they've got it, they've had a consultation and decided to request my scan results! Radical idea!

honestly I sometimes wonder if I should go to their office myself and physically move the piece of paper from the in-tray to the to-do pile!! I know they have loads of other patients but it's been 4 weeks of nothing happening, and the onc wanted to have all the results and actually start the treatment in another two weeks' time - Frustrating!

Jx

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Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

Glad it's working Samantha 😌 x .

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Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

Yes my tumour has shrunk by 2/3rds in volume in 3 cycles.m- still a long way to go mind!
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Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

Sounds like good stuff good luck ❤ x x x

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Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

jul, it's chemo attached to herceptin. So the chemo concentrates on the cancer. Nifty. 

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Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

Hi. Samantha is tdm1 a chemo or is it like herceptain ? . I think it's great you go to work I hope I get back when I finish docetaxcol x x

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Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

Hello Jacky I'm on TDM1 or Kadcyla, think it's a great drug as it worked on my HER2+ tumour( it's down by 66% in three cycles) hope it does similar wonders for you- I work three days a week in the office and about a day at home, except indeed to rest about five days after my infusion, when even working from home is a trial.
I think I am a little more sensitive than most, as TDM1 is supposed to have few side effects. I have one really good week in three, that's when I plan to get some really good stuff done.
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Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

Hello Jul, im on TDM1 or Kadcyla, I work three days a week in the office and about a day at home, except indeed to rest about five days after my infusion, when even working from home is a trial.
I think I am a little more sensitive than most, as TDM1 is supposed to have few side effects.
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Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

Hi Helen I can't work from home I work in a children's home and a betting office two different kinds of job haha. I feel really down at the min I was on fec from May til end Sep so I was off work  then had radiotherapy discovered secondary and had to go on docetaxcol I've had three treatments  another three to go then I'm on h and p . I feel like I've had no life for months it's awful it's getting to me now it's like 12 chemos one after the other I'm worn out this docetaxcol makes me feel crap ! But il get there hopefully it's probably just time of year too ❤ x x x

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Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

Hi Julie

I worked during chemo but at home - I am an administrator for a secondary school, ironically dealing with staff absence! I spent from Nov 2014 to Apr 2015 working at home and it really helped me being able to work. Since Sept, I now work 27.5 hours a week at school, every morning, and have afternoons off. This enables me to have my herceptin every 3 weeks in the afternoon without messing up my work. What do you do?

Helen xx

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Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

I'm really missing being at work did any of you work during chemo ? X x
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Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

Hi Dawn,

Brilliant to see you're still posting! And glad your cancer is only progressing slowly. I hope your spine isn't too painful. I'm due to start Kadcyla too, as I've now had some progression on my ovaries and peritoneum. Just waiting for a biopsy to check it IS BC and  to check the cells are still HER2+, then I will start. Kadcyla sounds sooo clever, how it locks onto the HER2 surface of the cells but then delivers chemo at the same time. Genius. How have you found it? I've just started a new job and really want to keep working if the side effects aren't too bad. 

Big hug to you Dawn,

Jxxx

Member

Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

Wow ten years is along time . Hope you get as long or longer on your next treatment x x x

Member

Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

Hi Julie, I was on herceptin for ten years without any problems or side effects. Last year I was changed to kadcyla as my consultant was concerned that although my progression was very slow he was concerned about a tumour on my spine causing problems should it get any worse. So I continue on herceptin but in a different form.

waves to Jacksy 😊. Haven't seen you for ages - how are you keeping?

 

dawn

xx

 

 

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Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

Thanks Helen I've still got four of the docetaxol to get then I'm on perjeta and herceptin glad its working for you long may or continue. I read the inspiring stories all the time to help with my anxieties you all help a lot x x x

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Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

Hi Julie
I have been on herceptin since June 2014 & had 4 echocardiograms in that time to monitor my heart. So far it seems to be working ok. I had the infusion whilst on docetaxol but then switched to sub-cut injection which is a lot less waiting around in the chemo ward. I don't have perjeta. Apart from being tired afterwards that evening I don't have any other side effects luckily. I hope that you are coping ok with your treatment. I see you read my post in the inspiring stories section-hope it helped.
Take care, love Helen x
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Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

Hi just thought I'd bump this thread up doesn't seem to be many people on this x x x

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Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

Thanks jacksy it makes me feel better knowing you've been on herceptin for 8 years hope you get your heart sorted so you have many more x x x

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Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

 

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Re: Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working

Hi Julie,
I've been on herceptin for 8 years! I've had a few hiccups with my echo (heart) results and had to take a pause before restarting. Now I'm on medication to support my heart function (ace inhibitors & beta blockers) but it's generally fine. I work and I exercise. I've had a few recurrences in my liver (had RFA and surgery) but combined with tamoxifen herceptin has made recurrences few and far between. I hope this encourages you
Jacksy

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Thought id find put how long youve all been on herceptin on herceptin / perjeta are they working ?

Hi just thought I'd find out how long you've all been on herceptin or herceptin / perjeta is it working ? Do you manage ok ? In need of a few positives for Christmas love Julie x x x x