I'm Jojogingerhead, a 31 year old artist & musician based in Brighton (UK) satirically documenting the highs and lows of my secondary triple negative breast cancer diagnosis. Trying to see the light in a dark and scary situation without using the words fight, battle, journey or survivor.
I had my first follow up appointment with my oncologist on Monday since my secondary breast cancer diagnosis back in January. I got the results from a recent CT scan and bone scan. It was a mixed bag really, the CT scan showed that my current chemo hasn’t worked and that the liver cancer has progressed, I now have 4 lesions instead of 3. But on the plus side my bone scan came back clear and there were no signs of anything sinister in my lungs, brain or anywhere else in my body. Although I will be sent for a more detailed MRI scan and ultrasound to confirm this so it’s still all up in the air really. Strangely, the original breast lump has gone and the oncologist couldn’t feel anything at all in her physical examination.
The plan now is to have a liver biopsy (which I’m NOT looking forward to as they are extremely painful) and find out if the liver cancer is the same as the breast cancer (triple negative). They are also switching my chemo from Gem/Carbo to a different drug called Eribulin in the hope that it might be more effective in at least stabilising things.
The problem with my current chemo cocktail of Gem/Carbo is that I only really had one cycle before the CT scan. It was delayed for nearly a month due to my bloods being too low, I don’t think I was on the drug long enough for it to do anything.
I am now in the position where I have to have Eribulin now or never as it’s one of 16 drugs and 25 licences being cut from the Cancer Drugs Fund TODAY. You may have seen me posting about the Cancer Drugs Fund in the last few months. Ironically on the exact same day I was diagnosed with secondary breast cancer that had spread to my liver, the cuts to the drugs fund were announced, 3 of them for advanced breast cancer including Eribulin. Luckily I was approved for the drug only a few days ago.
If you’re going to do one thing on the internet this week, please stop signing fucking petitions to reinstate Jeremy Clarkson at the BBC and sign and share these petitions to reinstate cancer drugs instead.
Secondary breast cancer: http://epetitions.direct.gov.uk/petitions/72199
Gastrointestinal Stromal Tumour (a rare type of cancer found in the digestive system): http://epetitions.direct.gov.uk/petitions/73911
It’s a true reflection of the despicable society in which we live that a petition championing fist chucking Jeremy Clarkson gets over 73 times as many signatures than one to save life saving/extending cancer drugs. The cancer drug petition I signed and shared has received just over 10,400 signatures. The Clarkson one has received over 737,000 signatures. Who knows how much time the cuts to the drugs fund has shaved off the lives of those affected but at least Jeremy Clarkson has his job back, despite physically abusing another human being.
Well done England, I hope that you’re happy with the society that you’ve created for yourself. I am deeply saddened by this and my heart goes out to all that are affected by these cuts.
I would like to include some information very articulately written by a few of the ladies from my online secondary breast cancer community that explains about the cuts in more detail. They make the following points:
1. Change the NICE criteria for evaluating cost / benefit to one that recognises the individual nature of metastatic breast cancer response & progression, rather than being based on statistical averages.
The last 8 consecutive drugs licensed for treating metastatic breast cancer have been rejected by NICE based on average life extension data. But the individuals these drugs apply to are small in number and don’t respond in a consistent way. For some a drug may not work at all, for others it may still be controlling the cancer 3-4 years later. So a cost/benefit judgement based on average life extension is simply not smart or reasonable.
The current system means drugs routinely used across Europe are not available in the UK, which has the lowest breast cancer survivor rates. One of them, Lapatinib (Tyverb) is available in 18 countries including Ireland, the Czech Republic, Slovenia and Slovakia.
As an example, I use the following case of a friend of mine, this is typical, not a rarity. Lapatinib would be the next natural choice of biological therapy, when her Oncologist concludes Trastuzumab (Herceptin) has stopped working and it’s in the same price bracket. In the absence of that option, the only remaining choice is Kadcyla (TDM1) – which continues to receive CDF funding even though it is 3 times the cost. Why not try Lapatinib first? Her oncologist says he’s had a good response using it with other patients.
2. Restore Cancer Drugs Fund availability to the full range of metastatic breast cancer treatments (while we wait for 1. above), to be prescribed based on clinical benefit as judged by Clinicians.
How will we learn more and negotiate better with the pharmaceutical suppliers if we don’t engage as partners and consumer? Even when a treatment works initially, the response changes over time, as the cancer adapts and becomes resistant to it. That’s why clinicians need a wide range of drugs to choose from and progress an individual through over time.
The five year cancer strategy in development will no doubt find solutions over time, but meanwhile 32,000 of us are living with this condition right now and 12,000 are dying every year.
Also check out this campaign from Breakthrough Breast Cancer to petition your local MP: http://www.breakthrough.org.uk/demandafairprice
With half of people in the UK expected to get cancer at some point in their lives, why are these important life extending drugs being axed? I am lucky in that I scraped in by the skin of my teeth and was approved the drug Eribulin, but I still don’t even know if that will even work. Unfortunately there might not be any drugs left to try on the NHS for my particular type of cancer. Thanks to these cuts, many cancer patients have had a price put on their lives and been handed a death sentence. Despite all of this, I hope Jeremy Clarkson gets his job back, NOT.
Update Wednesday 25th March 2015: It has now been reported that Clarkson has been sacked from the BBC after an investigation found that he did assault a producer in a row over steak and chips.