False Start

We went to London again on Monday, ready for the appointment on Tuesday. Went to the Italian again, what creatures of habit we are, got our usual table too! Had all the tests on Tuesday morning and we were waiting for the drug to arrive from Pharmacy when a phone call from the States reported a patient had experienced a reaction to the drug and everything was on hold. We didn't know what the problem was or what was going to happen, but a phone conference call was scheduled for 3.30pm, so all we could do was wait. After the call we learned it was a rash and we could proceed with the intended dose or return to the previous dose and see what happens. Well if I'm going to do this I thought I want the higher dose and take my chances. So at about 5pm we were allowed out until the following day when we would start again.

The next day most of my tests still stood, except an ECG so I had that and waited for the drug. I know now why they asked me if I had any problem swallowing tablets, when the drug arrived the capsules were like horse pills (whatever they look like!) and I had 6 of them to take! Throughout the next 24 hours my bloods were taken at regular intervals for analysis. I got out of hospital on Thursday.

So far so good, I have to follow a regime of taking the tablets twice a day at the same times after food and record any side effects. The next appointment will be next week, but it should just be checking bloods etc, no need to stay in overnight. Thank Goodness.

Trying to get back into the gym, went this morning and it was OK. Having a quiet weekend which is welcome, it's all seemed very hectic lately.

Sheila x

Screening Complete

Shortest of updates I'm afraid. Had all the tests on Friday and as far as we know the trial will start on Tuesday, unless we hear from them tomorrow. The drug has been on trial for a while, so much of the dosage questions in relation to side effects have been established so I will start on a reasonable size dose. It seems it has been well tolerated so far and there have been some responses in some cases but not all. I think my leg will be a good barometer for me, even before the six week scan.

Meanwhile driving in London continues to be a challenging experience, even with the Sat Nav. Our poor old van hasn't seen so much use in years. The local Italian restaurant in Crystal Palace are getting to recognise us, which is actually quite nice. We didn't have any time to see the sights this trip.

Since the last update, we've also been to a wine tasting at Avery's (our team won the quiz), been to a 60th Birthday party, done a ladies lunch, a couple of house visits by friends including inspection tours and been to the gym for the first time since my "burns" died down. I'm worn out!

Speak soon.
Sheila x

Smokin

Went to the hospital and signed the consent forms, they told me it would be around 4 weeks before the trial started, so we thought where can we go on holiday. The next day the hospital phoned to ask me to attend next Friday for the pre-screening, Scans, Bloods etc and providing all was well the trial would start the following Tuesday, so it looks like Brighton again for us :-)

This time we stayed at Crystal Palace and it took us 5 hours to get there, the traffic was awful, and it was dark by the time we arrived. It's obviously busier than the other campsite we've used, but it's about the same distance from the hospital. So we now have a choice, if we want the Smoke or the Countryside. I got used to the planes from Heathrow going over after the first night, of course Frank could sleep through an earthquake! I didn't like it at first but once you get used to the people and the traffic it was good fun. We did an open top tourist ride around London, which was interesting, and because I can't walk very far, ideal. This also included a river trip on the Thames, which was again interesting until we had to abandon ship due to taking on water in the engine room. The RNLI and the Fire Boat turned up but we weren't going anywhere, so we were transferred to another boat. Could only happen to us, we had to laugh.

Anyway back now to sort the house out before the next trip, still sorting out the one month snag list after 4 months, but love it here anyway.

Sheila x

Lots of Reading

The trial details didn't arrive in the post as I'd expected, so this weeks trip to the hospital was to get the paperwork (11 pages) and get an overview from one of the doctors. My bloods are recovering well from the chemo and the burns have now receeded so the last drug is flushing out of my body. I have to return next week to sign consents etc, they are obliged to give me one week to decide by law, so despite my offerring to sign up on the spot I wasn't allowed to.

The technical details of the trial are difficult to understand, it's been developed in America, is called OSI-930 and is being tested in 3 hospitals, 2 in the US and 1 here. It is in it's early stages of gauging dosage vs side effects and I will have to wait a few weeks before starting until the previous batch of patients complete the first stage successfully. If they don't, the trial (I guess at worst case) could be pulled. It is a chemotherapy drug, but it is given orally as a tablet once a day (possibly twice, but that's part of the trial!).

As my leg is getting worse as the tumour continues to grow, I am obviously keen to get started.

After the hospital we stayed in Brighton for 3 days, the weather was great and we loved the place. Something for everyone and we will definitely be going back. It had certainly developed, particularly around the marina since we had been there in the early 90s. The campsite was very close to the marina and within 2 miles of the city centre.

I'll do another update next week after the next visit.

Sheila x