Well here I am again, one year on, updating that I am still here and well. That’s ten years since secondary diagnosis of mets to bone and liver and nine years on Herceptin as my only treatment (just had injection number 157).
i do have other exciting options on the treatment horizon too, the first being subcutaneous Herceptin. Not sure if this has appeared on the forums (not be here for a while) but in summer some time we may have the option to have our herceptin by subcutaneous injection that the patient will be able to deliver themselves at home - or more importantly on a long holiday away somewhere!!! This will be a bit like a diabetic with an epi-pen, but bigger more like a box. Just think, it will be like slipping the leash from hospital - we will be free!
Secondly, and this is really scary, there is the possibility of stopping Herceptin altogether.
Some long term Herceptin patients (8 years plus) have come off the drug altogether with, so far, no re-occurrence. This is mainly in the US but there is one centre in England that has started doing the same. Obviously the risks are unknown and I shall be in the ‘wait and see’ category for some time to come I suspect, this is all so new and groundbreaking. There is even (dare I even write this…!) whisperings that these women may be cured. We secondary BC sufferers have always been told that we can only ever be NED and never be cured but oncologists are daring to voice such a possibility. Of course we are only talking of a small number of women (only 30 percent, or less, of breast cancers are HER2 and respond to Herceptin and of that number a possible 10 percent seem to survive long term) but I dare to dream - dream of a disease free future, for myself and all my sisters out there.
blondie
How absolutely wonderful to read this post. So pleased for you Blondie!!
Thanks for posting this updat Blondie. It’s really inspiring and encouraging. I shall set off to the hospital today for my Herceptin top-up with a spring in my step. Here’s to many, many more years x
Lovely to read something positive - interesting about the Herceptin. Good luck for the future xx
Blondie, what an inspiring post xxxxxx So very pleased for you xxxx
Love
KQ
Brilliant post,gives us all a huge lift,thank you,
Best wishes and here’s to the the next 10 years,xxx
Di.x
Thank you for posting this Blondie it so nice to hear inspiring stories and im sure its a huge help to all who visit the forums be primary or secondary , well done you xx
Thank you so much for posting.
Im at the beginnibg of my journey 1st chemo and herceptin tomierow.
Im realky scared but you give me hope.
THABK YOU XXXXX
Thakn you blondie for your post - helps me a lot as I’ve just started on Herceptin too.
Jenxx
Dear Blondie, what a lovely post to read. Thanks you so much for taking the time to come back every year and post an update. Its truly inspiring to those who are following in your footsteps.
Here’s to many many more years of reading your yearly bulletin!
Joan xxx
Wonderful post, thanks so much!! I had Herceptin for my primary for one year, the usual 18 doses, which stopped three weeks ago. My breast surgeon said he was “glad” I was HER2 pos (had IBC so altogether not good) as it gives more treatment options for me. In my hospital the nurses told me they have a lady coming in for Herceptin since 10 years and she is NED. I suppose she was put onto it on a trial basis 10 years ago as i don’t think it is licensed that long.
A friend of mine was DX with 2nd’ries to lung, bones and brain three years ago, she is HER2 pos (never had Herceptin for her primary as this was 11 years ago) and she is doing well!!!
When is it called “long term” survival? What time span? Is there a definition at all?
Thanks again for your post, all the best,
3N3
Hi 3N3
What is long term? you ask. This is all so new that there Is no definition of when enough is enough (in Herceptin terms). Lets face it they are still working out how long adjuvant Tamoxifen should be given. At the moment all I can say is that eight years has been mentioned but that may be as much to do with US funding issues as the efficacy of the drug - the simple answer is that they just don’t know. All I know is that there will no pressure on anyone to stop taking Herceptin in this country But I can hold on to the possibility that I may not need to be on herceptin for life.
Who knows how long it is going to take before they have enough evidence to say that ‘you don’t need to be on Herceptin any more - it has done its job’. I won’t be in any hurry to help with the statistics, just in case they are wrong. What would you do - go back on herceptin? Would it work as it had done? Would you need more chemo and if so which one? Etc etc. As I say, this was posted to show that there is hope on the horizon but how far away the horizon is and how long it will take us to get there - that is down to those clever scientists.
blondie
Blondie
What a fabulous post! I feel so inspired and encouraged! I finished my 18 Herceptins last June and am still on Tamoxifen til September 2016. I still spend some part of every day worrying about this horrendous disease and my “future”, and how long it will be etc. so to read your post fills me with hope!!
Good on you girl!!
Take care and lots of love
Mandy xxx
Hi Blondie - that is fab news 
Herceptin is a fantastic drug and I know of a local lady on it after 10 years and doing well. She also mentioned the injection that’s coming out and her view also was she could then go on longer holidays! Keep up the yearly bulletin.
Nicky x
Hi Blondie, I am so happy to read posts like yours, I am on long term herceptin, only had 33, so a little way behind you ! I am having a much needed holiday next month, had to organise it round treatments so the injection sounds great. As for coming off Herceptin in the future I’m not sure if I would be brave enough to risk it , Thanks for sharing your good news it really does help xx
Jean
Hi
Thank you for this inspirational post. It has given me hope. I have been on herceptin for 4.5 years and had 70 plus infusions. I like the sound of subcutenous injections that would give me loads more freedom
AlexD.
Thanks for posting this…just what I needed to read at the moment. It gives us all hope to read stories like this. Great news about the Herceptin injection. x
That’s so good to hear!
Wonderful news Blondie. I’m not a herceptin lady (borderline in 2003 and triple neg in 2010), BUT I am still here too. I’ll be posting my 10 years later in the year after my yearly scan in the automn. I’m on 4 monthly check ups now and all seems fine for the moment. All the best to everyone, take care of yourselves.
Maria
Hi Blondie
Wonderful news! It’s my 4 year anniversary in two weeks (of to London to visit daughter in celebration) from dx. IBC and spread to liver,although never confirmed, spot disappeared after chemo so probably was! Herceptin ever since,had mx, recon, uplift on remaining boob, new nipple, tattoo, lipofil,oh and more spread on head of pancreas dx 2011, trial on everolimus and vinerolbine (had port fitted)came off it after 6months due to side effects etc. Last scan in Oct showed slight shrinkage even after treatmeant had stopped. Last appt in Jan told I’m ‘revoltingly well’ and come back in 3 months! Yeeeees! All through this I’ve had herceptin either 3 weekly or weekly on the trial. Health care at home usually. No particular side effects and I feel 
great! I too am looking forward to the sub injection, onward and upward! I can honestly say I feel full of energy and I’m sure herceptin has a positive side effect of improving imune system as I havn’t had a cold/flu since! I’m quite happyto stay on it.It does feel like a security blanket!!!
Happy and positive wishes to all
xxx