Herceptin doesn't work for me

Hi I’m Sharon, have been on here before,
1st diagnosed in left breast with Inflammatory BC 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.

(All Her2+ hormone-)

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 so 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.

Love and hugs
Sharon xxx

Onc called earlier, chemo on hold for tomorrow, she has spoken to Professor Cameron thro in Edinburgh who had a trial going on in Dundee, if I meet this criteria he is willing to take me on.
If not then it back to Taxol and Herceptin on Mon, I will be put on a trial that is coming up in Beatson in 3 months time.

There is hope in all this xxxx

Sharon - hope that they are able to get you on the trial…

So sorry to hear about your spread… and sending you loads of love for the months ahead…

I’ve got to be honest i was really shocked when they decided not to give you chemo after the second mastectomy… i think you are the only person i know who hasn’t been given chemo after a second tumour was removed… (I had a second mastectomy in Sept because i was starting to get changes in the good breast… and it was made crystal clear that if there was the slightest sign of dcis or anything in the lab i would be straight back onto chemo…)

You really don’t deserve this latest set back and sending loads of love to you and the others on here with IBC secondaries…

Theresa x

Wishing you peace within the frustration of your situation. Your Onc. sounds absolutley brilliant & I’m sure will do all the fighting nec. for the right treatment/trial for you.

The shock of spread is something some (not all I hasten to add) IBC ladies have to face when often we haven’t even had the primary diagnosis for very long and are physically & mentally “depleted” from primary treatments. And that’s hard - I do empathise with you.

But on a positive note, there are several IBC ladies with secondaries relatively under control.

Rooting for you.

Sharon, I posted a message earlier, but they must have removed it due to my language used.

you have been my inspiration throughout, you are an amazing person and I am sending you a very large hug, I will give you a real one when we meet up.

its so unfair, this disease, your news has knocked the stuffing out of me.

lots of love

Carol xxx

Theresa - I was really shocked when they weren’t giving me chemo. I kept asking why not and kept asking to get it, they said because everything was removed and all margins were clear there was no need.
Now 2 months later is showing in other places, maybe I wouldn’t be in this situation right now, but everything happens for a reason so they say. thanks for your support Theresa xx

Thanks everyone for your support, I feel the cyber vibes and it really is making me feel like I have support from you guys.

Love and hugs
Sharon xxx

Hi Sharon,

Sorry to hear such awful news. This is truly a scary disease. The speed with which it moves is mind boggling. Your determination comes across in your posts and your medical team seem to be very proactive so hopefully you’ll get on top of it again. Bl**dy hard work I know.

Re your search for treatments - I’ve sent you a PM about Lapatinib.

hugs and best wishes. Jan xx

Sharon
You have been dealt a really rough hand, I can’t say much but just wanted to wish you the very best and to offer some cyber support.

P xx

Sharon - so sorry to hear this and wishing you every good thing possible.

Love

Jane x

Dear Sharon,

Sorry to read this latest news.
Your onc sounds fantastic and I think this is so important to have confidence in those planning your treatment. Obviously she will have made contact with Marsden re possibilty of Lapatinib trials.
I am treated at the London Marsden and was on a combo trial there, Lapatinib and Capecetebine, until early last year. Frustratingly when the capecetebine stopped working I couldn’t have the Lapatinib on its own so am back on herceptin. However I don’t know if since then what new trials are on the horizen.

In the meantime I hope all goes ahead for you on Monday.

Would just like to add that I too cannot believe that you did not have chemo after your second mast. I was dx in 2005 and to my knowledge all IBC ladies are given chemo.

Take Good care,
Love
Jackie x

HI Sharon - devastating news and most of us dread this happening to them - I am only part way thorugh treatment with MX due on 27th Jan at Poole - Have been to the Marsdon consultant Charlie Swainson for second opinion and I have a rare IBC HER -2 negative and concerned for treatment if I end up with further signs of secondaries or matastasies. Have a very old freind also going thorugh cancer and he tells me of the drug AVISTAN which he is taking - given out in every hospital in Europe but the UK yet we helped develop it - I undersrand more info on Cancer reserach Uk site but PM me if you have any problems finding out about it … Its not on NHS but due to cost but works with breast cancer - There are methods of raising money for you - It’s administered like chemo every 3 weeks and understand around 1800 per pop for 6 cycles. It may be unfounded for you and not relevant but cannot keep this info to myself especially if it can work for you. Dont keep it in if you need people to help as this is not too much to raise if it can work for you - those who love you would have wanted the oportunity to do something for you so.

Hugs and thoughts are with you
Dee Dee X

Hi girls

It’s a waiting game at the moment as my Onc is waiting on a reply from Prof Cameron who is in charge of the trial she is trying to get me on. So at the moment she doesn’t want to start Taxol incase it ruins my chances.

DeeDee thanks for the info. Every little helps.

My Onc said she was jsut back from San Antonio and had info about a new trial (which had 75% success rate), this should be starting here soon. Only wish I could remember the name of it.

Thanks for all your feedback and thoughts
Lots love
Sharon xx

Fingers, toes and everything else crossed for you Sharon.

love Jan xx

HI Sharon…I have’nt had IBC cancer or secondaries, but I read your posts and wanted to just give you a big hug. You keep fighting to get on these different trials…life is so precious …

Helenxx

Hi sharon,

good luck with new treatments, hope they sort it soon for you
got all fingers , toes crossed for you.

xxx

Jan, Helen, Truffle Shuffle, thanks for your comments

Still no news on starting treatment, it’s the waiting thats really annoying!!

Hugs to all
Sharon xxxx

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.
This 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

Sharon - so sorry that they couldn’t let you have the drug at the moment…:frowning: At least you now can start the taxol though… really hope it is kind to you and works well…

Love Theresa x

So sorry it’s not better news Sharon. It’s so frustrating knowing there are potential treatments out there that are just out of reach when you need them.

Your Oncologist must have some confidence in the Taxol/Herceptin combination so here’s hoping it will bring some good results. Keep posting and let us know if we can do anything to help.

Big hug. Jan xx

Hi Sharon,

Well frustrating as it is not to get on the trial the important thing is you are going to start treatment now. As Jan says your onc obviously has confidence in the taxol/herceptin combo so we’re all praying for good results.

take good care,
Jackie x