By ED

When originally diagnosed with the BRCA2 misprint (oh…back in about 2004/3, ), I asked if there were any treatments which were specifically aimed at genetic cancers. At this point there weren’t. But when diagnosed with metastatic disease in Nov 2007-the primary of 1996 finally metastised to pleura, lung and bone, despite prophylactic surgery-I again looked into what advances had been made in the treatment of genetic cancers. Until relatively recently, genetic disease has been treated in the same way as other cancers-but with the added risk to familial members at a young age, additional therapies were clearly necessary.

Checking online, I found details of a trial at phase 2 level, targeting BRCA1+2, and ovarian cancers. This was being held at several locations throughout the country, and I was fortunate enough to find one in Plymouth-sufficiently close to home in Exeter, to make this a viable option.

After an initial meeting with the trial consultant, and a battery of tests I was deemed a “perfect” candidate! How strange it felt to be told that-but , seriously, I was delighted. It has long troubled me that I have passed this gene on to our daughter (who was also tested, and found positive). Although my head tells me that I am in no way responsible, my heart aches at the anguish this causes. We now have to live with the knowledge, that although diagnosed with the misprint at age 22, there is no reliable monitoring until early 30s (the breast tissue is too dense until this age)-and her risk of developing the disease at a young age is incredibly high. Prophylactic surgery is all that can be offered at present-until the advent of this trial-one of the aims being to use the drug BEFORE cancer develops in high risk groups.

So clearly, this was a trial which very much had my name on it-for future generations-but also for me. As I said earlier, the primary cancer had metastised, despite surgery to prevent this, so I am now faced with chemo for the rest of my life, in the hope of slowing down progression as far as possible. Somehow my guardian angel must have been keeping a special eye on me: the entrance criteria for the trial was quite rigorous-and I imagine that this is a stumbling block for potential candidates, as only 3 chemo types are allowed before embarking on the study. I had already had 2 before finding this trial, so the timing was crucial! Having passed all tests, we started treatment last May.

It was taxing-there is no doubt about it. Treatment consisted of 5 consecutive days of infusions, and a mid cycle check up. As my veins are particularly bad, it was arranged that I should have a PICC line inserted (I had previously been having xeloda, an oral chemo, so venus access hitherto hadn’t been a problem).I didn’t have too far to travel-about 1.25 hours each way. But it was draining nonetheless, and effectively I had to write off 1 week in every 3. This was the most challenging aspect to the trial-the side effects to this particular drug were minimal, and I experienced very little in the way of discomfort-with the exception of some localised increase in pain levels-which turned out to be tumour flare-so good pain, in actual fact!

The whole process was made so very much easier, by the compassion, support and dedication of the trial team-step forward for thanks, Martin Highley and co-in particular, Liz and Laura! Their support and dedication reassured me that I was in very safe hands-a vitally important factor when going down this route. After all, it’s quite one thing filling our bodies with the tried and tested poisons which comprise the chemos we are routinely prescribed-quite another to submit ourselves to drugs which are still at an early stage of development. But their unstinting care and thoroughness had me very comfortable at placing my life in their hands. When problems arose-as they did-they were very quickly addressed. For example, the PICC line became infected-and it was removed on the spot, within less than 30 minutes of me developing symptoms. I was then admitted for IV antibiotics for 3 days, and a further day of oral antibiotics prior to discharge. At one stage, Martin was concerned that I was showing signs of developing a clot-and had me down being scanned within the hour. Sure enough, a tiny clot was found, and appropriate action was taken immediately. Incidentally this incident followed the insertion of a port, and was not a result of the drug.

I was scanned after every 2 cycles, and the results were good for 3 scans. We had some shrinkage in some tumours, miniscule growth in others. But the fourth scan revealed that the rate of progression was speeding up, so we had to stop immediately, and send me back to my original team in Exeter, to resume conventional chemo. Overall, although disappointed we didn’t get more time, I was nonetheless pleased at the results-it had given me over 6 months of successful treatment-more than some chemos have achieved for me. One theory is that PARP can also resensitise the body to chemo, so I have tentative agreement that I could use it again in the future, an option I am very much keeping in mind.

To anyone considering embarking on a trial I would say “it’s not as frightening as it may seem”. Yes there are huge amounts to consider-but in my case the decision was easy. I want with all my heart- should this drug live up to it’s initial promise-to see it getting through the trial stage and into clinical use. For future generations primarily as there is still a lot of ground to cover before this becomes an option. But also for present patients who may find they can get some benefit from it.

Whatever drug you personally may be considering trialling, one of these alternatives must hold true for you and I hope that my “journey” has reassured you that it is a very feasible-although demanding-option to take. I would do it all again tomorrow. Do I have any regrets? None whatsoever-I just wish that the teams could find some more suitable candidates as we seem to be rather thin on the ground!

For more information on how to take part in the trial visit Cancer Research UK's patient information website www.cancerhelp.org.uk or call its cancer information nurses on 0808 800 4040