I really should have started this some days ago. It's day 5 of the new drug regime and despite the warnings, I'm taken aback by the fatigue I'm feeling since my first dose of Rucaparib on the evening of November 17th. I'm pretty much stapled to the sofa and feel as though my batteries are on about 20% charge. I was warned - and I'm told it will get better. So rather than concentrate on the now, I'm going to look back to how I got here.
I'll keep this short(ish). Womb cancer diagnosed February 2014 when I was 50. Surgery unable to remove it all and I was diagnosed grade 3, stage 3c2 uterine serous carcinoma - aggressive, fast growing and locally advanced but it hadn't quite escaped beyond the lymph system. Chemotherapy was followed by radiotherapy and brachytherapy. I was lucky to get genetic testing and was found to carry a BRCA1 mutation which is linked to a high risk of breast and ovarian cancer (think Angelina Jolie if the acronym is unfamiliar). When the cancer recurred in 2015 I was told that it would be important for me to get on to a new kind of drug called a PARP inhibitor. The question was how?
The PARPi drugs are an emerging biological therapy. They interfere with DNA repair; if cells can't repair their DNA they can't divide. If they can't divide, they die. Cancer cells are rapidly dividing and are disproportionately affected by the action of the PARPi compared to healthy cells. They are thought to be very effective in many BRCA related cancers where the specific mutation already damages the ability of cells to repair DNA. So the PARPi delivers a double DNA damage whammy.
So far, only one PARPi is licensed for use in women, specifically those with recurrent ovarian cancer who have had three or more rounds of chemo. That wasn't me. A number of others are being tested in trials - but again they are focused on the more typical BRCA related cancers - ovarian and breast. Again not me. I had an atypical diagnosis of BRCA mutation and womb cancer.
My search for a solution brought me to the door of an NHS consultant oncologist who agreed to see me. She proposed using a funding mechanism called "compassionate use" in which drug companies fund treatment for specific patients, often those with an atypical diagnosis. It took six months and goodness knows what work behind the scenes but last month I got the news that her case for compassionate use for me to have access to Rucaparib had been accepted.
This was Good News. My only other option was chemotherapy and the aim of chemo would be to control symptoms - not cure the cancer. Rucaparib offered a chance to control the cancer for longer and with significantly fewer side effects. I'd keep my hair, for a start. The admittedly small trials of the drug had established a safe dose with treatment be taken twice daily as a tablet. They'd shown that around 80% of women with high grade pelvic serous carcinoma and a BRCA mutation who took Rucaparib either saw their cancer stabilise or shrink - and that the drug was effective for around a year. The side effects commonly included fatigue and nausea.
My consultant was delighted. I was thrilled. At our first meeting we discussed the potential side effects. She expected I would have fatigue and nausea for 3-4 months but this would settle. I may also throw up, have diarrhoea or indeed constipation. (How does that work? Surely one or the other? But no - as is so often the case with cancer drugs.) If I was unlucky I may get debilitating anaemia that she would manage with dose adjustment and blood transfusions. She needed some blood results and a CT scan before we could start. She told me I would need to grit my teeth to get through the first few weeks.
Which brings me to last week. So far, the fatigue is pretty overwhelming. I'm connecting with my inner slob and have stocked the freezer with ready to cook food as I'm not up to cooking an evening meal. The nausea comes and goes. I've not been able to find any uk patient accounts of taking Rucaparib but there are some from the USA (on the patient experience website inspire.com) I'm clinging on to their accounts where they say that the side effects subsided after 4-6 weeks after which they had no side effects and even went back to work. The world is periodically falling out of my bottom but it's manageable.
She roll on Christmas. I'm hoping the side effects will settle in time for me to enjoy the holiday.
Parp, parp!
