On 19th April 2011 I began another clinical trial of a new drug originally from Seattle, USA.
As my cancer journey has progressed, my prognosis has unfortunately got worse and worse, as options run out. There are about 1500 cases of Hodgkins Lymphoma a year. Out of that, about 100 relapse and need further treatment other than the initial chemo. I was one of only a handful of that 100 who are chemo-resistant. I have always had the option of a bone marrow transplant from an unrelated donor, but I know this procedure has a high fatality rate, so I have been keeping this as my last resort.
It may sound strange to say that I have been very lucky with my cancer journey, but it has landed at an extremely good time for cancer research and during the years I have been ill, so many new trial drugs have become available and I have responded a little to each of them. These clinical trials are only open for a matter of months, then the results are gathered and the researchers go back to the drawing board and try to improve drugs further. Very rarely do these drugs get a positive response from the majority of people they are trialled on, but SGN35 was getting some good reports in Seattle where it was invented very recently.
The Christie is the biggest clinical trial centre in the world and my specialist, Professor John Radford, is one of the leading specialists in this field. We have been talking about SGN35 ever since it started being reported on and he eventually managed to get a trial of it to run at The Christie. There were only a few of us in the UK on this trial, but we heard that so far 75% of patients responded well to it, so I was extremely pleased that my disease and treatment pattern landed at the right time to be able to take part.
I had a planned schedule of 6 doses of SGN35 spread across a few months. Another Seal tour coincided with this, and I will be forever grateful that they were able to fly me home for my 4th dose, and a scan the following week to see how it was going.
As soon as I landed back in Paris on 8th July, from my trip home for my scan, my specialist called me with my results. I was in remission for the first time since my diagnosis! This was unbelievable news and I was amazed that I had responded so well to the SGN35 trial drug. My doctors agreed that it would be worth finishing the 6 doses, as this may help keep the remission in place. I was naturally extremely happy with these results, but knew that once I reached remission, that a bone marrow transplant would be on the cards (to try and help keep me at remission) so I wasn’t ready to celebrate just yet. As SGN35 is so new, there aren’t any statistics to go by, and no way to tell if this drug would keep me at remission forever. My specialists could only guess that with my long history of disease growing shortly after a bit of response, that it would do the same in this case too. It is a crazy position to be in; finally clear of cancer for the first time in 7 years, but if I wanted to live longer than about 3 years, I would need to risk my life with the most life-threatening treatment there was.
The trial for SGN35 closed shortly after I was involved in the studies. Those studies are soon to be published on haematologica.org and I will be mentioned anonymously as a number. The results collectively were extremely positive from SGN35 and this drug is now FDA Approved. This is a fantastic result for cancer research and brilliant news for anyone diagnosed with Hodgkins Lymphoma in the future as their initial chemotherapy regime will soon include SGN35, which will give them a better chance of a cure straight away.
In the meantime, if anyone wants to get hold of SGN35, now the trial has closed, and before it goes through all the long avenues of being approved, licensed etc, it would cost you £20,000 per dose! I had £120,000 worth of that drug! Luckily on the NHS this was free. I heard that my initial chemotherapy (ABVD) would cost around £30,000 if you had to pay. I have no idea about other 9 regimes of treatment I have endured and the countless injections of GCSF and EPO, but now you can probably see how lucky I have been. I have been in the right place at the right time!