Update 10 - 10th May 2008

Morning everyone

Just a brief review of our trip to Poole Hospital yesterday (Friday) when the plan was have blood tests and a CT scan done prior to entering Liz into a ‘national’ chemotherapy trial.

We arrived early (9.00am) so had time to get the blood tests under way before the CT scan. The trial co-ordinator explained that Liz already met some of the criteria necessary to join the trial, but they were some others that needed to be checked out during the morning to confirm her eligibility. In order for the trial results to be meaningful the participants (1269) all had to initially have similar characteristics.

The trial started in 2006 and to date only 9 people had been eligible for the trial from Poole hospital.

After having a cannula inserted in her arm (just another needle which Liz hates!) and drinking a litre of water the scan was successfully carried out.

On returning to the trial co-ordinator after about 2 hours she confirmed that she had received back the blood test results which were fine and met the criteria for the trial. This was a relief as we thought that she might still have been anaemic, which would have excluded her from the trial. In fact the haemoglobin level had increased from 10.8 to 12.0 over the past week since she had the fluid drained. So no problems there.

The co-ordinator then went on to explain (for the first time) that the scan had to provide ‘measurable’ data on the tumours in order to benchmark the success of the trial. The tumours also needed to be a minimum of 10mm. This was news to us, and although Liz has now had about four or five scans they have never been ‘measured’.

It normally takes several days for the consultant radiographer to interpret the scan and write the report. However, the plan was start the trial next Tuesday, and therefore the whole thing was in jeopardy of being delayed if the scan results were not available until next Tuesday or Wednesday. Liz could not be confirmed into the trial until the scan results showed she met the criteria.

By now things were getting quite stressful for Liz, and so I exerted some pressure on the co-ordinator to try and get the scans appraised immediately whilst we were still in the hospital. After initial failure, she finally spoke to the doctor that carried out the scan, who said she might be able to review the scan in about half an hour.

The co-ordinator phoned the doctor back after half an hour only to be told that the tumours could not be measured as they were too small and were therefore less than 10mm and did not meet the criteria for the trial!

Although it was disappointing for Liz not to be included in the trial, it was good news that the cancer was still quite small, and not really changing very much if at all at this stage, which confirmed what the consultant had told us, namely that it was ‘slow’ growing.

The outcome is that Liz is now to have the same basic chemotherapy programme (as in the trial) at Dorchester hospital. In the trial there were two other possible ‘add-on’ treatments one of which was just designed to try and reduce the side effects, and the other to improve the efficacy of the basic drug. Even if Liz had been eligible for the trial she would have been randomly selected and may well have ended up with just the basic treatment any way. So we are too disappointed about not being in the trial, particularly as the scan was reasonably positive regarding the size and status of the cancer.

We finally left the hospital at around 1.00pm and within half an hour the co-ordinator had been in touch with Dorchester hospital to arrange a slot to start the chemotherapy as quickly as possible. Later in the afternoon she telephoned to confirm that it would commence on Thursday 15th at 9.30am, and that she had arranged for the ‘head cooling’ cap to be made available which ‘might’ stop Liz’s hair falling out.

After a ‘roller coaster’ and emotional morning at the hospital, we went to a wonderful 10 acre garden in the centre of Poole/Bournemouth called Compton Acres. We had a nice lunch in the Italian restaurant, and then took about an hour and a half wandering around the thickly wooded and hilly gardens that have wonderful views over the famous (and very expensive) Sandbanks area of Poole Harbour, and also Brownsea Island (National Trust and Red Squirrels).

The highlights included the Grand Italian garden and the Rock and Water garden with their wonderful purple Acers drooping into the water. However the real highlight was undoubtedly the spectacular secluded Japanese garden (reputed to be the largest/best in the UK) which was just a mass of flowering azaleas set in a little canyon with ponds and a small waterfall. Absolutely wonderful at this time of the year. Well worth a visit (open all year).

We are having a quiet few days now before the chemo starts again on Thursday (the plan is for 4 cycles each of 3 weeks duration). The only thing we have to do is have a blood test at the doctors on Monday morning to check the Warfarin level is stable.

I am aware that some of you either had difficulty opening the last email attachment, or just didn’t receive it, so if you missed either update 8 or 9 and would like me to send it/them to you again please let me know. Likewise, depending on how your email security system is set up some of my emails may end up in your spam or junk mail folders, and if you just ‘bulk’ delete without checking them individually you will not be aware of them!.

In future I will inset the letter into the email rather than making it an attachment, which might make it easier for some of you.

As always, thanks for your continuing words of support and offers of help.
Dick