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.
On Thursday I headed up to Harley Street in London to visit the Care Oncology Clinic to find out about a clinical study they are running. I found out about the study through a lady from one of the online support groups I belong to (which is why these groups are so great and an invaluable source of information and support).
To be eligible for the study, you have to be a cancer patient with or without metastatic cancer where standard treatments may no longer help. I’m a secondary triple negative breast cancer patient with metastasises to my liver, chemo so far hasn’t worked on my liver, although it has worked very well on my breast tumour. I’m currently having Eribulin as part of my ongoing treatment.
Although I was slightly wary at first and worried that they would be trialling new drugs that would make me grow horns a tail, it turned out that the drugs they are using are old unpatented ones, all available on the NHS and can be prescribed by any doctor. The clinic requested that I take a copy of my most recent blood test and CT scans with me, I got these printed at my doctors surgery the day before. The consultation was very thorough, it took just over 1 hour and they took my vitals (height, weight, blood pressure etc) before explaining in detail about the study, the drugs they use and how they work.
The drugs are Metformin (used to lower blood glucose in diabetes patients), Atorvastin (a statin), Doxycycline (antibiotic used for childhood acne) and Mebendazole (antibiotic used for childhood anti worming). They said it was fine for me to take these alongside my current chemo regime and the side effects are minimal. These 4 drugs although are quite different, all have something in common in that they are metabolic drugs and can affect the way how the cancer metabolises. The doctor was very good at explaining this in a lot more depth than I could ever write about and mentioned this study Statin Use and Reduced Cancer-Related Mortality. He said they had seen very good results with breast cancer patients and they hope to bring the use of these drugs to cancer treatment on the NHS, hence the study taking place.
The cost of the consultation is £400 (they said there is help available from charities to pay for this if you are financially struggling), then £50 every 3 months to pay for the cost of the drugs. I think if you have an understanding doctor, you could ask them to prescribe the drugs on the NHS for free.
Another really interesting point that the clinic mentioned was for me take Tamoxifen. As triple negative breast cancer patient, I haven’t been prescribed Tamoxifen as it’s a drug that suppresses oestrogen levels in ER+ breast cancer patients and therefore helps to inhibit cancer growth. They said that Tamoxifen also suppresses something called insulin-like growth factor-1 (IGF-1) which can increase the risk of breast cancer, so it is worth me taking Tamoxifen.
I came away from the clinic feeling very informed and hopeful, the doctors were very thorough in explaining everything and I trust the scientific evidence behind the study. I am definitely going to go ahead with the study even though I know it’s not a cure, every little helps. Plus I’ve always fancied growing my own tail…