Carry On Doctor

When we got to the hospital yesterday, I had the usual blood tests, ECG, BP etc to close off the trial. A couple of the nurses expressed their disappointment to us and we talked to other patients too about what had happened.

When we saw the Doctor, he had spotted that the wrong scans had been compared and in fact the tumour was still stable. We thought he was talking to the wrong person and it caused a bit of a conflab amongst the other doctors so we had to go away while they satisfied themselves he was right and last weeks analysis had been wrong. Thankfully he was right and I was offerred to return to the trial. As the drug suits me I said Yes.

We also discovered yesterday that "stable" doesn't mean the tumour isn't growing or indeed shrinking, they use a margin of -30% to +20%. It was an old scan of mine from Bristol and before the trial had started which had been used and there had been a growth spurt just before I started taking the drug but not since. There has been a marginal increase in size during the trial but we saw the correct scans on the screen side by side and it wasn't possible to see much of a difference with the naked eye, so the drug is doing it's thing!

How do we feel? No need to go to Alton Towers or Magic Mountain, our emotions have been all over the place since Friday, but we're much happier now. As one friend said, who needs to watch Holby City. Only drawback, we are back on weekly visits because of the pain in my leg which has to be brought under control so they want to monitor that more closely.

What more can I say......

Speak Soon
Sheila x

Disappointment

Just a quick update as I'm trying to get over the disappointment myself at the moment.

Yesterday I had a phone call to tell me that the scan showed the tumour was growing again, the drug was no longer doing anything and to stop taking it. Not quite the news we had expected after two good scans. It explains why my leg has been playing up though in the last month. It's always such a good barometer of what's going on.

Next steps, we are due at the hospital on Tuesday, this will now be a discussion about whether I want to try another trial (only in principle, they won't have a specific one planned at that point). If I want to continue then I will have to return when they have a trial picked for me. Whatever happens I have to have a 4 week break to "wash out" the trial drug I have been taking before starting anything else.

So there you have it, a blow but not a knock out punch, let's hope the next drug makes it shrink not just stabilise :-)

Speak soon (after Tuesday).
Sheila x