Stop the ride I want to get off...

Saturday, October 29, 2016

Rollercoasters are meant to be fun...

This cancer game is always throwing new challenges at you. Last time I wrote I was buzzing about good news with tumour markers dropping and waiting on a CT scan result that I was sure was going to be good news. I bet you can guess where this is going, but let’s add a bit of backstory, just to give the story a bit of extra tension and suspense.     

When this latest episode began I was told that there was an arsenal of weapons to fight it and that I could probably hope for fifteen to twenty years living with this cancer in my liver. That was their hopes and mine. But it turns out I have a bugger of a cancer, it’s able to mutate quickly and get around the chemotherapy drugs. So the first drug worked for a couple of cycles and then was probably not working for the next three cycles I was on it. Cancer 1 Vinorelbin 0

So then we swapped to Eribulin, an expensive drug only available on the Cancer Drug Fund but some women have been on it for 16 cycles and some even longer.  So last time I was waiting for results for my CT scan, and new tumour marker results. I arrived at that clinic to be told that tumour markers had suddenly started rising but don’t worry and went ahead with the next cycle of Eribulin.  But the next clinic at the end of that cycle was a very different story. The CT scan showed that my two main tumours had grown about a mm each and the tumour markers were still rising. So while you or I might argue well how accurate are you at measuring those tumours, apparently the marker thing meant that nope Eribulin had stopped working too. Cancer 2 Eribulin 0

So we had a new plan, I was to go onto Taxol, it has a longer name beginning with p but I keep forgetting. I have to have this one every week for three out of every four weeks. On the fourth week I have clinic, so my Tuesdays are now declared hospital day. This new drug is a longer infusion, two hours for the chemo, plus half an hour either side, so I agreed to have a Hickman line. Please google for more information and pictures. I had mine put in on 2nd September after having a few weeks off chemo which I loved and was needed to get into the right mindset.

You see this wasn’t just a new drug but a big reality check. It seems that big arsenal of weapons consists of FOUR. Seriously who goes into battle with only four weapons? I demanded that my oncologist give me some idea of how long I have left now. He was very reluctant but after we said, we won’t hold you to it but we need some idea. Worst case is six months, well that number just flew over my head. To be honest, I think I batted it for a six, nope not happening I have too much to do. Best case is five years, it seems as I used up a drug we lost five years. I’ll wait while you all get your heads around that, it took me a few minutes, days, ok maybe a few weeks.

So I have everything crossed for NICE to clear some new drugs, they haven’t added a new one in seven years. I have to hope there will be a new trial for metastatic breast cancer that is oestrogen positive. I’m not HER2+ so none of those treatments or trials are for me. I’m also cheering on the guys working on the immunotherapy treatments which show a lot of promise. But most of all I’m hoping my next CT scan will show that this drug is working, yet again tumour markers are dropping, and that my tumours are stable.

I know it’s difficult for folks to accept this, but I’m not being treated to cure this, currently there is nothing that will do that. This is palliative care, keeping my tumours stable is the aim, shrinking them is the bonus. So far we’ve knocked them back a few times and my liver (bless it) has continued to function normally which is surprising everyone in a good way. My plan is to keep busy and I’ve been doing that in spades.


This new chemo has some odd side effects, sore feet being the most annoying, but I’ll take weird feelings in my feet over death any day. I’ve gotten used to the line dangling out of my boob. Seriously mr surgeon you couldn’t have put it to the side? I went through a lot for these beautiful gastroboobs. I’ve even got my head around the dying part, and am happy to talk about it, but some days I do have a mope and a meltdown. Then I get up and carry on, because I have too much to get done to sit around and mope. Plus I’m hoping for a nice surprise in five years time…

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