The first cycle of Gail's HDIL-2 treatment ended two months ago, on May 5th.
On Wednesday, June 27th, one week earlier than had been planned, we were up in Manchester for Gail's first scan following HDIL-2 treatment.
About a week before then, Gail wrote an email to the Prof describing lumps behind her operation scars that were seeming to be getting larger by the day, and they were causing her increased discomfort. Within two hours of sending that email, Gail had a reply from the Prof himself – at 10:30 in the evening! He suggested that Gail should come up to the Christie to be scanned at the earliest opportunity. An appointment was set for the 27th.
Today, it's Monday July 9th, ten days after the scan. Today is also the day that Gail would have begun her second cycle on HDIL-2 – this most gruelling and uncompromising treatment. The good news is, however, that she won't be facing this tough challenge today. In fact, we won't be returning to the Christie Hospital in Manchester because Gail has been discharged from the care of the Professor and his team. Her scan revealed that her lung metastases (mets) have not reduced in size as we were all hoping, and to be honest, following all the positive indications from her blood tests and her response during treatment, we'd even dared to believe would happen. But positive indications are no substitute for straight talking fact.
The news is that the lung mets have grown in size since her previous baseline scan back in April. There's only one conclusion that can be drawn from these results... HDIL-2 hasn't worked for Gail. Not one bit. To compound our disappointment, new tumors have been detected around the site of her nephrectomy... Those are the lumps that Gail wrote to the Prof about, and that had obviously concerned him enough to bring the scan forward.
When we arrived at the Christie's for that scan on June 27th, we were informed by the receptionist in the CT scanning department that there had been a fire in the generator room that had taken out the power for some of the scanners, including the CT scanner that Gail was booked on. Inevitably, this would mean delays. The receptionist encouraged us to get a cup of tea or have a wander, and to await her call. She had Gail's mobile number and she'd call us as soon as everything was back online. To be fair, the delay wasn't as long as we were fearing. About an hour behind schedule, Gail was called in to start drinking the iodine highlighter liquid. An hour later at 12:15, she was called through to be scanned and by 13:00 she was out. Now all we had to do was wait for the results. We were reassured that it wouldn't take too long – but time enough to get some lunch. This we did. Meanwhile, Prof and team would be analysing Gail's scan.
Lunch over, we made our way back through the fast-moving corridors towards the Profs consultation room. Some minutes after taking our seats in his waiting area, Prof's clinical assistant emerged from the room. She didn't look towards us straightaway, she seemed distracted – she was talking to herself, but in a way that ensured that everyone in the waiting area knew what she was thinking. She was, we gleaned, searching for unoccupied rooms in the near vicinity. Moments later, with a kind and cheery tone, she asked Gail and me to follow her. She ushered us into an empty room in a quiet corner of that department. The room was small. It didn't have a doctors's examining table, and there was no sink. There were no sterile glove or apron dispensers. There was no blood pressure monitor, no stethoscope, no anatomical charts, no computer screen, no files, no phone. Just three or four chairs, a small table and a window without a view. We weren't kept waiting very long. Just a few minutes, but it was long enough for it to sink in... that we were waiting for Prof in a counselling room. Gail and I hadn't said a word to each other, we were just sat quietly waiting, holding hands, until she broke the silence and, curiously, asked me if I had a gut feeling about the results. I looked at Gail for a few moments wondering how to put it to her; I knew there and then why we were here. I shook my head and told her that I didn't think it was going to be the news that we wanted to hear. She slowly nodded as if pondering on a notion. I knew that she knew it, too. The door swung open and we were suddenly thrust back into the noise of the hospital. I hadn't noticed before just how tall the Prof is, at least six foot one, and in his dark suit he seemed to fill the room with his presence. His assistant followed him in.
As Prof confirmed the news we were expecting, it occurred to me that he was as devastated as we were. And for a moment it seemed that there was a a tacit acknowledgement as to the reason why we all felt this way. It wasn't so much that Gail's cancer had gotten worse, rather, that somehow, HDIL-2 simply hadn't worked, and that the only course of action for Gail now, was to get her onto the drug Sutent... The very same drug that was offered to her by her Cheltenham consultant before she opted to go down the HDIL-2 route. It was like a game of snakes and ladders, we had just landed on the snake's head and slid from somewhere in the middle of the board, all the way back down to square one.
It was two-thirty when we shook hands and said our goodbyes to the Prof. He disappeared into the throng of the mini metropolis that is the Christie while his assistant spoke with us a few more minutes, reassuring us that Sutent could yet prove to be a successful treatment. Gail had pinned her hopes on the Prof and his team. She believed the answers to a successful treatment of her cancer lay at the Christie. She was totally committed to this very difficult route that she herself researched and opted to follow. But, Gail's journey on highway HDIL-2 had hit an indomitable diversion. The map was being redrawn. We were trying to make sense of it, but one thing was clear... It's about-turn and onto Sutent... The drug that Gail was recommended in the first place.
Despite the disappointment of the HDIL-2 treatment not working, Gail has absolutely no regrets about her decision to try this course. It was the right choice at the time. If she'd decided to just go along with 'doctor's orders' and go straight onto Sutent, she would never have been offered the opportunity to give HDIL-2 a go. And then, those "what if...?" questions would have always been there, annoying her at the back of her mind, and she would never have known the answers.
So. It's a new phase. A new drug. Gail's getting her first prescription of Sutent on Wednesday, July 11th. If it's going to work, Gail will know pretty soon because the first thing she should notice is that the pain around the new lumps should subside or even vanish completely. That could happen by the end of the first cycle in four weeks time.
I shall be updating this blog regularly with her progress.
