Herceptin not working

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 xxxxx

Hi Sharon

So sorry to hear your news - yes, this is a terrible disease and it is so important that the very latest treatments/drugs are available to all who need them.

I was dianosed with secondaries to lungs, bones and maybe liver in October - will find out tomorrow as have just had another CT scan on Monday to see if my chemo is working.

I hope with all my heart that they find a drug combination that will slow things down for you.

Big hugs coming your way.


Hi Sharon

What a horrible situation for you to be in - it’s appalling that there are drugs out there which can treat your condition but as usual it’s down to funding, aarggh. Your onc sounds very ‘on the case’ so let’s hope she can get you onto this trial sooner rather than later.

Meanwhile I hope the Taxol/Herceptin combo will keep things stable until the new drug is available to you.

Love Lesley x

Sharon - so sorry to hear that you have such awful news…:frowning: And i really hope that your onc can manage to get you another form of treatment… I don’t know if you ever still read the IBC subforum - one of the girl’s there Pash is about your age and has also recently been diagnosed with secondaries - i don’t know if she might know of anything / trials from her discussions with her onc…

I hope that you can get some extra treatment sorted and take care…

Much love

Theresa x

Evening Sharon…

Good luck tomorrow…will be thinking of you.
Nicola Sturgeon should be doing something about this…but your onc sounds well on the ball.
Keep fighting Sharon.
Lots of love and hugs

Hi Sharon - so sorry to hear about your recent diagnosis - i agree with others that your onc sounds very proactive and willing to push things along - i hope the combination of taxol and herceptain kick things back for you - take care , jayne

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 xxxx

Hi Sharon,

Fingers crossed for tomorrow, hope you meet the criteria for the trial. I’ve Pm’d you on facebook. Keep us posted.

Take care honey and big hugs

speak soon

Fiona xxxx

Thanks Fee

Dear Sharon

I just wanted to say that I really hope you get put on one of the trials and/or that the herceptin/taxol combi works for you. I will be thinking of you. It’s so unfair that we have to fight to get something which we should be entitled to by right in the situations that some of us find ourselves in.

Best wishes and hugs
Ruby xx

Thank you all for your kind comments, I feel like I’m getting support from you all

Thanks girls big hugs
Sharon xxx

Hi Sharon,

I just wondered who your onc is as you sound as if you might be near my part of the world. I hope you get on a trial, am keeping my fingers crossed.

Hi Cherub

My Onc is Dr Grainne Dunn she works out of Beatson but also has a surgery at Hairmyres where I get treated.

Sharon xxx

Hi Sharon,

how did you get on with criteria for the trial? Would that happen to be a TDN1 trial? It’s trialing in America right now, with great preliminary results.

Big Hugs

Fiona xxx

Hi Sharon
<<<<< CYBER HUG>>>>>> TO YOU.
Good Luck and pls let us know how you are getting on.
Love Tracey

Hi Again, I thought you might have been getting treated in Edinburgh. The staff at the Beatson are excellent though - until last year a relative of mines who is now semi retired (he is a Professor) was the Medical Director there until early last year.

Hi Sharon

So sorry to hear your story. I too have had re-occurences similar to yours, and with the rash along the the first mastectomy scar line which turned out to be cancer cells which I had zapped with rads (in June 09). It’s scary isn’t it.

There’s a e-petition you might like to sign under ‘current issues/hot topics’ about Lapatinib. I don’t know when it will be presented to Downing Street but hopefully soon. I too have heard about the American trials of TDN1, it sounds very promising so I hope you will be able to get that in the not too distant future. You sound like you have a great Oncologist so try to stay positive.

Lots of luck

Hi Sharon,

Sorry you can’t get lapatinib. I have previously had weekly taxol and herceptin and it worked well for me. Really hope you can get on the D trial . I had lapatinib privately but it didn’t really help me so i am back to herceptin now and remember herceptin plus chemotherapy work really well together. best wishes, Gemini.

My Onc was just back from San Antonio, so i think it is that trial, she did say the results were amazing.

It’s just a waiting game at the moment, my Onc is waiting for a reply from Prof Cameron to see whether I fit the criteria/ will be accepted on this trial.

Linda - I signed that petition back in Oct/Nov, thanks for the info anyway.

Thanks for all your support, it really does mean alot.

Hugs Sharon xx

You are in my thoughts on a daily basis…rooting for you xxxxx