Herceptin not working for me

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1st diagnosed in left breast Sept 08, 4 FEC then 4 Tax along with Hercepin then Mastectomy/Recon April 09, then it came back again end Aug 09, 2 tumours in right breast with immdediate mastectomy, no recon, no chemo, just 4 weeks Rads.
I had a rash on recon side that everyone kept saying was a ‘SWEAT RASH’. Finish second load of Rads Biopsy eventually taken on xmas eve, got results 30th Dec that cancer has returned again and told my options for treatment are very limited (don’t listen to your surgeon), CT scan taken on new years eve.
Just back from appointment with Oncologist, results of CT scan show slight changes to lungs stomach and liver, just shows you how quick my cancer is spreading as CT scan taken 3mths ago didn’t show anything.

Apparently my cancer is very aggressive and they have never seen a case like mine. This isn’t responding to Herceptin any longer, they cannot get Lapatanib for love not money due to funding and the fact it’s not licenced. I know there are others out there who must be on same situation.
I am starting weekly doses of Taxol and Herceptin tomorrow, hopefully this will work.
My Onc has a trail starting for a new drug linked to Herceptin (D with some numbers) but this isn’t until 3mths time, I need to be treated now. She is willing to throw any drug she can get her hands on at me to beat this but will have to wait until she can get me onto some sort of trail, I said I’d travel anywhere, she even mentioned Marsden on London.

I will have to get my pen and paper out, start writing to SNP, Gordon Brown and however else will listen to get the drugs to keep me alive.
I have been really positive all way thro but now it’s starting to get to me, I am really shocked it’s starting to show in other areas, but the good thing is it is very early stages. I will continue to be a positive as I can as I need to be strong to fight this.

I was so looking forward to my sisters baby being born in 3 weeks, will have to wait until then to tell her what is going on.

I just cannot believe there are drugs out there that we cannot get a hold of, our life is precious and we need to keep fighting this chronic illness.

I just wish there was something we could do, I wish they new why or what causes this.

Sorry to rant on but have been keeping this in since New Years eve, only mum and dad knew, wanted to get more info first before starting to tell people again.

Lots love and hugs to all you beautifull women going thro this horrible illness, none of us have done anything to deserve this.

Sharon xxxxxx

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Sharon,so sorry to hear this.I can’t offer much advice re fighting for drugs,just wanted to send a huge hug.
I hope you find something/someone to help.
(((((((((((((((((((((((hugs))))))))))))))))))))))))
Love
Dot

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Hi Sharon

Really sorry to hear about this.

I too went from a clear CT scan to a freckled liver in 3 months.

Taxol + Avastin then worked very well for me; my onc said the key thing was the Taxol, so it may well do the same for you.

If there’s anything we can do in cyberspace (as well as all the usual moral support, etc) for you as far as getting drugs is concerned, let us know.

Thinking of you.

X

S

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sharon you are always so strong and have such a positive outlook even now you still come across very upbeat… even though you may not feel like that inside… but feel free to rant away as it is really unfair when you have been through the works and for it to come down to finances and red tape at the end of the day.

sending loads of love and cyberhugs to you.

Lulu xxx

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Hi girls

Thank you for your support. My Onc is VERY Proactive, she is determind to fire anything at this.

Chemo on hold for tomorrow, she has spoken to a Professor Cameron through in Edinburgh who has a trial running up in Dundee, he is willing to take me on if I meet the criteria, my Onc will look at the criteria tonight then let me know what’s happening.
Not to worry tho if i cannot get onto the trial I will still get Taxol next week.

Sharon xxx

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Fingers crossed Sharon!
Dot
x

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If all else fails do ask for a referral to the Marsden in London-it is meant to be the best in the UK.

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Dear Sharon
My fingers (and everything else!) are crossed for you. What bad luck…
Big hugsxx

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Hi Sharon,

Taxol worked well for me too with liver secondaries. I had 10 weekly doses and that reduced my tumour sizes by about 80%.

Hopefully you’ll get on the trial but if not I hope the Taxol will work for you.

Bad Fairy x

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Hi,
I am really sorry to hear that b thing just keeps coming right back at you. I read about that trial and 7 people who had all their other treatment including herceptin fail have had success with it already, I guess on a pre-trial test. I think it might be DDT1 or something like that. Any way google the Telegraph I think I saw it in. It sounds promising from the short bit I read and maybe they can put a personal request in to start it early? If it is a bit unusual then why not ask to be referred. The onc will not feel as though you are doubting her, it is normal practice. One of the other ladies on here a while back who had a very aggressive one got an appointment in under a week there. She said she was glad she went as they specialise and have drugs that other centres don’t have sometimes. My friend had amazing results on her first taxol after not being able to hardly move around. Everything crossed for you
love
Lily x
Big hugs buddy

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Hi Sharon

Re: Herceptin. This has just appeared on breastcancer.org

Early days yet, but your onc sounds so proactive, that she might want to find out more on your behalf.

breastcancer.org/treatment/targeted_therapies/new_research/20091215d.jsp

X to all

S

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Sharon, shit, shit and trebble shit!!! why, its so bloody unfair, you have been an inspiration to me and you have always been so bubbly and positive.

sending you the biggest cyber hug ever, although I will give you a real one when we meet up

cannot believe it is coming down to money, we should start a campaign for you

lots of love

Carol xxx

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Thank you all for your comments, I really appreciate them all.
I can really feel the cyber vibes and feel better now I know I have your support, I started to feel all alone but I feel loads better already
Thanks girls
Big hugs
Sharon xxx

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Still not heard anything about treatment, it’s the waiting that annoying me at moment xxxx

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so are they not giving you anything at all at the mo sharon? or did they start the taxol.

seems worse just to leave you in limbo while they battle it out hey.

love and hugs

lulu xxx

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Hi Girls

Lulu - nope not on anything at mo incase it blows my chances for getting onto a trial, apparently they don’t like you having chemo beforehand.

It’s the waiting thats horrible and not knowing

xxxxx

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Hi Sharon,

Fingers crossed for you. Let us know when you hear about the trial.

Snoogle
x

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Sharon, cant believe that is a week and they have still not come to a decision, its so unfair

take care

love n hugs

Carol xoxox

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Just had phone call!!!
No trials on a moment, think one just finished. Next one should be March. Apparently Dr Dewar who heads up the trial had been trying to persuade the Drug company to give me the drug, unfortunately its a NO.
The trial was for TDN1

I will be starting Taxol tomorrow with a slight hope of getting on Trial in March, i.e if my situation gets worse :frowning:

So it’s back to weekly doses of Herceptin and Taxol

At least I know now whats happening.

Hugs to all
Sharon xxx