HELP They are giving up on me

Why. After this 2 year battle of moslty not feeling to bad, all things considered are they withdrawing treatment. I have done a fair but yes (all in profile, too tired to type again) but this cannot be the end surely???

Anyone in this situation, being told nothing left to try, Am so scared and desperate for an alternative, anything they have missed.

Any advice well received for my conversation by phone with them, wont make a house call, private was supposed to be good


bumping as I feel compelled to get someone to help you. Also try talking to the help line and get the thread in secondaries and you will get answers.

wishing you peace of mind.

Hi Nikki

I was told the same thing a couple of months ago and I’m not ready to give up yet. All I can tell you are the drugs that I’ve had and you haven’t had yet.

What about cisplatin, 5fu, vinorelbine, etoposide. I am able to have herce ptin too. Wonder if it might be good to get a second opinion too then you know all options have been explored.

Take care, Gemini.

Hello Nikki, if this helps, the page from Macmillan on chemo for secondaries.
And the trials page from CRUK,

Good Luck…And Love…x

Hi Nikki

I would really consider asking for a second opinion for somewhere like the Marsden, and the possibility of being considered for a trial. I don’t understand why treatment would be withdrawn if there are still chemos to try - best of luck. x

Dear Nikki

So sorry to hear your news. This is what all of us with secondaries dread. Now’s the time, if you haven’t already, to seek an urgent referral for a second opinion.

Sending you love and very best wishes.

Alison x

Hi Nikki,

As others have commented in the thread please do phone the helpline here and talk to one of the staff, they’re here to support you through this.

Take good care,
Jo, Facilitator

Nikki, I’ve looked at your profile and it mentions local recurrence but not spread to liver etc. so I don’t understand why they are giving up on you?? Have you had further spread?

Either way don’t give up, please ask for a second opinion, there must be someone out there that can help.

For you this is going to be a war but one that you must fight.

Chin up and thinking of you.

Hi Nikki

This must be absolutely awful for you. I had a scare today and it brought it all back to me how much on a knife edge we all live. Please do seek a second opinion, don’t give up. There must surely be more stuff they can throw at you. If you’re currently on private health, can you swap to NHS for better service???

Good luck and keep fighting.

Best wishes.
Alison xx

Hi nikki I too would urge you to seek a second opinion- I saw someone at the marsden a few weeks back + the appointment was arranged very quickly. Have you looked into parp inhibitor Trials? I am also triple neg + am having major recurrence problems + can empathise with you regarding Our very limited treatment options etc but I am shocked that they are not suggesting further chemo combinations?! I too have read your profile + there is no mention of organ spread but I can only assume that has happened since you last updated. Please don’t give up- look into all your options straight away.
Thinking of you + hoping someone can give you some hope
tina xx

Hi Nikki,
I have watched your progress and battle through this crap disease and I am dismayed at what you have been told. I thought my tale of 2 local friends may be of help to you in some way. They were both being treated privately and came to the ‘end of private treatment’ at the same time. In our area we have the same onc whether you are private or NHS. He told them they would just move across to the NHS when private funding stopped. Sadly one friend went down hill very fast after avastin stopped working and lost her battle. The other is still chugging along and now under the NHS having maintenance chemo. He says he will always find something else to try. She has inoperable secondary Bc, had massive surgery but still couldn’t remove enough and even the marsden had nothing else to offer. She is chugging along nicely still and I wish you could see her out and about to give you a spark to fight the b…s back. Another lady in our area who had a dire prognosis transferred to the NHS too when private cover was pulled and the NHS provided drugs that they couldn’t and bought her a lot of much valued time with her family after she was told that was it. There are trials that show that chemo that has stopped working in the past can be effective again at a later date, they also combine 2 chemos used before or separate ones that have been given together in the past. The only reason I find acceptable is if you were too ill to have chemo and clearly your boxing gloves are still on. Go get em and don’t take no for an answer. Try emotional blackmail if it works and maybe get back to the NHS? If you don’t like their answer, go over their head or to the paper maybe. There is that Gov fund pot for things not agreed through NICE yet.
All the luck in the world. We are all right behind you. Hugs.
Lily x x x