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Member
lollypop59
Posts: 257
Registered: ‎01-05-2012

Re: herceptin and recurrence.

hello hatty,
i had a reccurrance last sept 2011. while i was still on herceptin, it was nodules in the skin, and they said it was only local, i had them removed and no further treatment after, but after this i had heart issues so the herceptin was stopped, i was put on heart tablets, four months later i am back on it for lung mets, so what i am trying to say is when i was on it, i had no spread but because i at to stop it for a while had a chest wall reccurrance and noudules in the skin again, but hopefully now the herceptin will stopped the mets from spreading in any other of my organs,
lorraine x

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Member
janine77
Posts: 16
Registered: ‎01-05-2012

Re: herceptin and recurrence.

I had a recurrence 5 months after finishing herceptin and a new BC diagnosed in the ither breast a few months after finishing :-(

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Member
lollypop59
Posts: 257
Registered: ‎01-05-2012

Re: herceptin and recurrence.

hello hatty,
i had a reccurance in my reconstruction side, in sept they removed four nodules, which some cancer left from original dx, i have three more herceptin left but its been stopped because of heart, got to go to see the cardioligist.

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Member
pumpkin69
Posts: 119
Registered: ‎01-05-2012

Re: herceptin and recurrence.

Hi All, i,ve only just discovered this thread and thought i would share my experience of herceptin etc with you all. I was first diagnosed in 2007 with bi-lateral er+ and her2+. Had six fec, radiotherapy, double mastectomy with reconstruction and one year of herceptin. Recently been diagnosed with recurrence, bone mets in spine and pelvis. I was told at the time of my first lot of treatment with herceptin that they were still not sure how long it was best to give it for. I personally feel that if they had kept me on it, i might not be in this possition today.

Anyway i am back on it indefinately and just hope it works to keep it under control, having it along with taxoter and zometa all delivered at the same time. Didn't have any problems for the year i was on it originaly so hopefuly be the same. There are quite a few women on this site who have been having herceptin for many years and are doing ok so i'll hang on to that.

I was asked to take part in a trial of a new herceptin type drug called pertuzamub, delivered along with TDM1, but to be honest the more i read about it and how little it had actually been tested so far, and some of the side effects, i was just too dammed scared!

Pumpkin x

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Member
cushkin
Posts: 34
Registered: ‎01-05-2012

Re: herceptin and recurrence.

Hi I start Herceptin next week. I was asked about the trial of 6 months v 12 months. They told me that many European country's only give herceptin for 6 months as standard treatment rather than the 12 months in this country. I was unsure when they first asked me but then I thought about it and decided to go on the trial. The way I saw it was that every drug and treatment I have been given for BC has started with some one taking part in a clinical trial other wise we wouldn't know how they work and their effectiveness, and if I can do the same to help others in the future I didn't mind. One day it could be my Sister or mother having to have treatment.

And, if 6 months means less stress put on my heart then maybe that's a good thing? Obviously, I wont know until I start what group I have been put into and I think everything happens for a reason and I'll just take what comes :-)

Although I understand and have respect that it is a difficult decision to make and a very personal choice for my situation.

Emma x

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Member
Littlemissacti
Posts: 145
Registered: ‎01-05-2012

Re: herceptin and recurrence.

Hi Jaynek, Thanks for your good wishes. Just waiting to get started now. First Tax next Tuesday.

I had WLE with clear margins, no lymph node involvement. Epi/CMF followed by 25 rads.Herceptin for 12 months and Arimidex for 4.5 years.

This lump is still grade 3, Her2+ but ER-. So just stopped the armidex.

Not had chance to read your story, off to work now but will catch up later. Thinking of you, J.

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Member
jaynek
Posts: 264
Registered: ‎01-05-2012

Re: herceptin and recurrence.

Hi Littlemissactive

I am sorry to hear that you are having to go through more treatment due to your local recurrence. I suppose that is what many of us worry about once the Herceptin stops...............what happens next. Do you mind me asking what treatment you had following your diagnosis in 2005 along with the Herceptin? I do hope that your current treatment works well for you. Thinking of you. J.

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Member
Littlemissacti
Posts: 145
Registered: ‎01-05-2012

Re: herceptin and recurrence.

I had Herceptin for 12 months until Summer 2007.I was diagnosed in July 2005. Just been diagnosed with a local / chest wall recurrence.
I am going to have Herceptin again along with Taxotere.

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Member
danjo
Posts: 593
Registered: ‎01-05-2012

Re: herceptin and recurrence.

Hi, I had my 9th Herceptin today (half way now!) I have achy joints and back ache but not all the time. I have osteoarthritis in my spine anyway so have back ache due to that so don't really know if it's the Herceptin or not. I have the occasional "tired "day but otherwise managing to get on with a busy retirement.

Caro

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Member
jaynek
Posts: 264
Registered: ‎01-05-2012

Re: herceptin and recurrence.

Hi Lilac

I am also on Letrozole so like you not sure what to contribute the SE's to. I am due my 1st mammo in August and feel the same apprehension as you. I definitely feel that the aches are muscular and joint aches although I have found it hard to get used to my 'new breasts'. I have a wide excision with removal on affected site and reduction on other. Don't like the feel of the scarring on the affected site and have to continually try and convince myself that the lumps are scar tissue and not something more sinister. Not an easy journey at all..................

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Member
Lilac
Posts: 302
Registered: ‎01-05-2012

Re: herceptin and recurrence.

Jaynek - it's a long haul, isn't it? I'm having no. 5 next week and another heart echo. I naively thought that I would be raring to get stuck into life again by now, but like you am finding that tiredness and achey bones are holding me back. And with my 1st year mammo coming up in July, I've been torturing myself with the idea that the aches are bone mets.

Is anyone else having aches and shivers on Herceptin? I'm on Tamoxifen too, so it could be that instead.
Lilac x

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Member
jaynek
Posts: 264
Registered: ‎01-05-2012

Re: herceptin and recurrence.

I wanted to bump this thread up as I would be keen to hear how folks are coping with Herceptin and thereafter. I had my 7th Herceptin today and find these days rather strange as it seems to throw me back to the diagnosis, treatment path etc. and I realise although I have come a long way I still feel quite fragile from it (at times). I seem to be coping well with the herceptin (no cardiac issues so far) however I do feel very fatigued and have achy joints. I am now back at work full time as from this week and I wonder and worry at times how I am going to cope. I feel as if I am firing on 3 cylinders rather than all 6 (if that makes sense).

I too declined the offer of a trial whereby I would get only 3 Herceptins as opposed to 18. I said thanks but no thanks. I just want to throw everything at it that is possible to improve my chances. I try to remain positive but occasionally I find that quite hard. How are others coping? J.

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TSR
Member
TSR
Posts: 580
Registered: ‎01-05-2012

Re: herceptin and recurrence.

Amethyst5,
We could look at it that we have 2 variants that have been identified, and are being treated! That is what I try and do; MOST days! It's not always possible, but it seems from some of the wise words on this forum, that it might not get better, but it does get easier,
Tracey
X

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Member
finty
Posts: 2,073
Registered: ‎01-05-2012

Re: herceptin and recurrence.

amethyst - it's just that ER+ is the most common type of breast cancer, so in absolute terms you will see lots more people having a recurrence - and you've been unlucky to see that with your mum and friend. But that doesn't mean it is more likely to happen with ER+ cancers than ER-, in fact it is less likely to recur.

finty x

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Member
amethyst5
Posts: 13
Registered: ‎01-05-2012

Re: herceptin and recurrence.

hatty,
I always thought that too, but as I mentioned my mum had a new diagnosis being ER+. A close friend of mine had a local recurrence within 4yrs of original diagnosis and she was also ER+.
I truly believe that BC is not a 'one size fits all'. We can only pray and hope for the best.

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Member
hatty
Posts: 752
Registered: ‎01-05-2012

Re: herceptin and recurrence.

I thought if you was ER+ you wasnt as much risk as if you were negative?

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Member
amethyst5
Posts: 13
Registered: ‎01-05-2012

Re: herceptin and recurrence.

This is something I fear every single day. Having had a right MX and left WLE, I keep praying that I dont lose my other breast to BC. It already looks mishaped after the WLE.

Tracy like you being ER+ makes me feel that I am at double the risk of recurrence.

I too am having herceptin for 12months, will be having my 4th infusion on thursday. I hope that herceptin is the life saver for all us HER2 girls.

BC is truly an unpredictable disease having been exposed to this from my mothers diagnosis 16yrs ago. She was ER+ and had 4/12 nodes involved. She had a new diagnosis in her left breast last year (after 16yrs) again ER+. Luckily it was picked up very early due to the routine mammograms. Unfortuntely, I was diagnosed with BC 6months after my mum. Having experienced BC with my mother, I feel that the risk of recurrence with BC is always there regardless of us being ER+ or HER2+.

Its going to take some time to come to terms with this because for me its still early days. I feel I am still at my most vulnerable stage. Negativity seems to dominate all positive thoughts at the moment. Listening to other womens experiences really helps me cope with this better. So thankful to this website.

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Member
hatty
Posts: 752
Registered: ‎01-05-2012

Re: herceptin and recurrence.

Hey lost in France wondered where you had got to it seem ages since ive seen a post from you lol...

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Member
lostinfrance
Posts: 860
Registered: ‎01-05-2012

Re: herceptin and recurrence.

Me too.....refused the 6 months

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Member
ChoccieMuffin
Posts: 4,481
Registered: ‎01-05-2012

Re: herceptin and recurrence.

My onc has me sussed and knew that I had done a lot of reading about my cancer, treatments, different chemo regimes etc etc. He told me about the trial and said in the same breath "but I don't think you'd want to do that, I expect you want the full 12 months". He was right, of course. So I'm up for 12 months of Herceptin at the end of my 6 lots of FEC.

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