BERT2011 (Bugger, Estrogen Receptive Tumor)….

Metastic breast cancer at 38


Not sure where to begin tonight… been pondering for a few weeks about updating my blog… do I want to? What do I put!.. how does the blog help… the conclusion I came to was, that the reasons I started the blog in the first place still remain…

  • a forum for me to put my thoughts into words in the hope that this would help me cope
  • A way to update my family and friends without having to repeat the story, which can be upsetting
  • To help others like me with information

So here I am tonight staring at the curser wondering where I begin… I’ve been thinking the last couple of weeks “I’ll just wait till we have a plan..know what we are doing” then I’ll update the blog.. however that’s been a few weeks now and although sadly things are becoming clearer there still a lot of uncertainty.

The big news… cancer has progressed, my current chemo has stopped being effective and I have growth of tumours in my lung, liver, an adrenal mass and most worryingly several tumours in my spine. I’ve been struggling with pain since November and many scans and tests later have determined that this is due to a new bone met in my spine on L3, ( already had one at L1 which was treated with radiotherapy last year). But this news one is causing a certain amount of grief. Also there’s 5 other small mets appeared higher up my spine, the Lung one has regrown and a newbie has arrived in my liver (9mm). This means that everything put together, Erubulin (the chemo I’ve been on) has lost its effectiveness and it’s time to try something new.

Ok… the hard news… What’s Next… well… the truth is I am running out of options, metastatic Breast cancer is treated in 2 methods, hormonal treatment ( the preferred option as it’s less intrusive to your life, and when you have an incurable disease it’s all about maintaining the best quality of life you can have) and the second option Chemo. Hormonal treatments as we know have proven not very successful for me some time ago so I’ve been on different chemo’s for the past few years. There are only so many chemotherapy drugs and there is only 1 left (suitable for my type of breast cancer) which I haven’t tried. This is called Vinorelbine. …. wow putting down on paper “there’s only 1 left” is not an easy thing to write. Tissues!

So tonight’s blog title is Next… ie what do I do now… I asked the hard question a few weeks ago… how long… and in truth there is simply no way to tell, the reply I forced my poor oncologist to give me.. “2018 looks ok, 2019 may be challenging.”

The last few weeks therefore has been more scans, assessment for 2 clinical trials and trying to come up with a plan to a) sort out the pain in back, sides, stomach etc and b) what treatment plan to start. I was unsuccessful in matching the criteria for the 2 trials, Plasmamatch and Pipa. The most recent CT showed the new Liver tumour met and an adrenal mass so trying to eek out a little more Eribulin chemo is no longer an option.

Apologies if this is not reading very well..there is so much information to impart my thoughts are a little all over the place.

I have started radiotherapy this week on my spine to try and help with the pain that the new bone mets are causing, I have been on a myriad of pain killers over the last few months with some difficult side effects, but I now have a morphine skin patch and optional liquid morphine which is working. Hoping the radio will ease the pain and I’ll be able to lower the morphine requirement.

So the Next is… I have been referred to another cancer specialist hospital in Manchester called Christie‚Äôs, it runs more clinical trials than Weston Park and the 2 trials I missed out on were both at Christie’s. Clinical trials run through a number of Phases before they are either classified as a new treatment or discounted. Phase 1trials are the first type of trial of a drug on humans.. this type of trial is now my lifeline. This is what I went to Manchester for yesterday to meet the Experimental Clinical Trial oncologist and ask if they have any new Trials which I may join. I return on Monday for more tests and the outcome of their discussion of me today. … it’s a very scary position to be in, that there’s not much left that we have in the arsenal to treat me. I’m sorry, this cannot be an easy read.. trust me it’s not easy to write either.

Fingers crossed that Christie’s have something I can try… if not then I will start the Vinorelbine, coupled with some more Epirubicin. This is a chemo I’ve had previously and there’s some scope for me to have a bit more before it would affect my heart. After that… who knows.

Well there you are, up to date….

the end of this post is a favour… I am very very lucky to have so many friends who care and I thank you all for that so so much. I do read all your comments on here and Facebook. The favour is… please don’t text me about this post.. I find it difficult to repeat the information and go through the upset of telling this over and again. I hope you understand, please do not think me rude. It is wonderful to hear your kind words of support on Facebook etc, please just don’t be offended if I cannot respond.

Time to put this behind me for tonight, sweet dreams to you all Jane xxx