8 December 2008 - 3rd Cycle of Chemotherapy

6 December - Deb and Kate outside of St Paul's Cathedral

Deb and I visited Kate at her flat in Collier's Wood and then travelled up to London for a day out. Had a great walk along the South Bank and crossed Millennium Bridge to St Paul's.

8 December - Start of third cycle of chemotherapy.

Had an appointment with Dr Sanghera at QE Hospital. (Saw the same doctor for 2 months in a row - things must be improving in the NHS). We discussed:-

1 Deb's general health. Dr Sanghera was pleased that Deb is generally in good health - no muscle weakness, problems with speech, fits, seizures or anything else that would indicate that the tumour was progressing.

2 Blood test. Results of test were excellent. Red blood cell count, white blood cell count and platelet count were all in the normal range. Dr Sanghera thought the previous low platelet count may have been due to the effect of the prolonged chemotherapy during the combined chemo/radiotherapy phase and the new counts were a sign that the bone marrow was now recovering. It was agreed that the we could carry on with the chemotherapy.

3 Chemotherapy. Deb was weighed again and the dose of chemotherapy recalculated. The dose was increased slightly from 360 mg to 380 mg per day.

4 MRI Scan. On 29 November Deb had her first MRI scan following the end of the radiotherapy. We were shown the scan and alongside the scan taken in June 08 when Deb was first diagnosed. Comparing the two scans you could see that the low grade part of the tumour was slightly reduced in size. The high grade part of the tumour which was a bright circle about the size of a 10 pence piece in the early scan was slightly bigger but was now diffuse. We should read nothing into this latest scan. It could be 'pseudo-progression' and what we are looking at is a transient image caused by the chemo/radiotherapy. (I asked Dr Sanghera if it is transient how long would it last - he does not know! I will look that up - if you know it is transient you must have some idea when it will end.) This November scan will be the baseline and tumour growth in future scans will be measured by comparison against this benchmark. The clinical team will have a conference tomorrow (9 December) to discuss Deb's case. They may decide to do another spectroscopic scan (don't know what this means - Dr Sanghera said it just gave more detail - will look this up as well. Doctor said it would not benefit Deb but it would be useful for him?). I will speak to Fred Berki, Macmillan Nurse tomorrow to find out what was said at the conference. A further scan is set for 2 months time when the results will be compared with the November baseline scan.

5 Steroids During the course of the last month Deb reduced her steroid dose by 0.5 mg each week. When she got down to 1.0 mg per day she started to get increased frequency of headaches, some of which were sharp shooting pains behind her left eye. After consulting the Macmillan nurse it was agreed that the steroid dose would be increased back to 1.5 mg per day. Deb has been good on this raised dose with no further sharp headaches. It was agreed that she would remain on 1.5 mg per day for the time being. If she remains well she may try to reduce again at a later date.

Update from Deb - Wednesday 26 November 2008

Hi

Thought it was time I put a message on 'The Blog'.

It's been a bit of a rollercoaster month really since seeing Dr Sangira at the Queen Elizabeth Hospital. I came away from our appointment feeling very negative and it took me quite a few days (infact I think it was around 5) before I felt happy about where I was with my treatment. I went to my Living with Cancer course at the Cancer Centre in Sutton last Tuesday and I was the topic of conversation about dealing with negative thoughts, which helped enormouosly. Made me realise that there are actually people worse off than me... Been reducing my steroids and I'm now on 1mg daily. My sleep is a lot better. I'm not as jittery as I was. I even sat through Mama Mia, and enjoyed it. I have been having more headaches and are monitoring these and will decide whether to go back up to 1.5mg or stick at the 1mg.

If things had been different, Chris and I would have flown out on holiday last Saturday with Explore for 3 weeks in Vietnam and Cambodia. When we got back from India in January and booked this it seemed a life time away and yet here it was. Because we cancelled, we have to book another holiday with Explore before the end of the year, or loose our deposit. I've contacted 3 travel insurance companies today, who have all declined to provide me with travel insurance. Apparently I'm a high risk!

Sam and Kate home this weekend and I have my scan at the QEH at 1.45pm on Saturday, good to see the NHS is using its facilities at the weekend.

Love to everyone, Debxx

10 November 2008 - Start of second cycle of chemotherapy

08 November - Deb and Cherry outside of Old Trafford.

(Thanks to Martin and Cherry for taking us on a tour of Manchester - a place we had never visited. If ever you go I can recommend you stop for coffee at the Royal Exchange, have lunch at Sam's Chop House and tour the University.)

Sorry I haven't written anything for a while. Deb has more or less reached a steady state with her treatment and I have not had as much to write about. I will try to keep up to date in the future and perhaps report on personal issues as well as give out medical information.

10 November - Start of Deb's second month of chemotherapy. Had an appointment with the Oncologist at QE Hospital. This time met Dr Sanghera - who has taken over from Professor Jones. I liked Dr Sanghera. He was eager to discuss all aspects of his work. He has recently worked in North America, has done research on brain tumours and is working on new guidelines for treatment.

Blood test results - Deb's red blood cell count was slightly low and her platelet count was significantly down - 109 u/L. (Schering Plough the drug manufacturer recommend that chemotherapy is suspended if the platelet count falls below 100). Dr Sanghera recalculated Deb's chemotherapy dose and was thinking of raising it slightly but decided to keep it at the same level (360mg per day) for this month because of the low platelet count. Platelets are the clotting agent in the blood and we were advised to contact the hospital if Deb developed any signs of excessive bruising.

Steroids - Over the course of the last month Deb's daily steroid dose has reduced by 0.5mg each week. She has now reduced to a dose of 2mg per day. Dr Sanghera said she should continue to reduce the daily dose by 0.5mg each week but monitor the effects. If Deb starts to experience more headaches or dizziness then we should contact Claire. The steroids are reducing swelling in the brain around the tumour. If Deb can keep on reducing her dose without suffering any effects this maybe a good sign that treatment is progressing well. Dr Sanghera hoped she could get off steroids all together but did not think this was likely.

MRI Scan - We have now received a date for Deb's first brain scan following her radiotherapy - 29 November 2008 (a Saturday - good to see NHS is making good use of expensive equipment over the weekends.) Discussed the purpose of this scan with Dr Sanghera. The problem is that studies have suggested that possibly half of all patients with malignant gliomas who have undergone chemoradiotherapy may show signs of early disease progression in their first post-treatment MRI scan, and that a significant proportion of these cases may be pseudo-progression (i.e. it looks as though the tumour has got worse but in reality it hasn't). The International brain Tumour Alliance have issued a message to oncologists and their patients on this issue - see their website http://www.theibta.org/PseudoProgression.pdf . Obviously you don't want the chemotherapy treatment to be stopped because the scan looks as though the drug isn't having any effect when in reality what you are looking at is just 'pseudo-progression'. Dr Sanghera explained that any decision to withdraw the chemotherapy treatment would be based on 'the whole picture' not just the scan results.

Date of next appointment and start of 3rd cycle of chemotherapy - 08 December 2008

13 October 2008 - Start of chemotherapy

Deb with Aaron Ramsey(Arsenal) and , members of the Wales U21 football squad.

(Photo taken at the Belfry on Sunday 12 October. Wales under 21s played England 21s at Villa Park on Tuesday 14 October. The game finished 2-2 - including a great goal by Aaron Ramsey but Wales lost 4 -5 on aggregate. Thanks to Gethin for arranging the meetings with the players - and the match tickets.)

After finishing the combined radio/chemotherapy Deb had a 4 week break without any treatment (apart from the steroids). On 13 October Deb returned to the Cancer Centre at the QE Hospital and had a blood test before seeing the consultant oncologist. This time we saw a Dr Spooner - he is standing in following the departure of Professor Jones until a new Doctor is in post. Some of the issues we discussed:

1 Chemotherapy dose - Deb's blood test results were good and the doctor gave consent for the chemotherapy to go ahead. For chemotherapy treatment alone the temozolomide dose is higher than when used in conjunction with radiotherapy. The dose is based on body surface area (200mg/sq metre). For Deb this worked out as a dose per day of 360mg (compared with 135mg during the combined treatment). Deb will take this for 5 days - last thing at night; so she sleeps through any side effects - and will then have nothing for 23 days until we start the next cycle.

2 Symptoms - Dr Spooner showed concern over Deb's symptoms (something the other doctors have not been). He was particularly interested in her dizzy spells. He thought these could be mini-siezures. He did not prescribe any medication but asked Deb to keep a log of when these occurred, how long they lasted, their severity etc. We also discussed Deb not sleeping. He told Deb that she should not 'cat-nap' during the day and only sleep at night and persevere with this until a normal sleep pattern was re-established.

3 Steroids - The doctor suggested that Deb reduced her steroid dose. She is currently on 4mg and she is to reduce her dose by 0.5mg per week down to 2mg. Dr Spooner compared coming off steroids to landing a plane; you can come down steeply but before you land you have to approach the runway gradually or you will crash.

4 Scan - Deb will have a scan towards the end of November - the hospital will write to us with a date. Because of radiation effects in the brain this cannot be compared with previous scans but will be used as a baseline for comparison to subsequent scans. (I still don't understand this. If you cannot see if the tumour has reduced in size how do you know if the treatment is working?).

5 We return to hospital on the 10 November for another blood test and the next cycle of chemotherapy.

28 September - 3 October 2008: Holiday in Aldeburgh, Suffolk

The octagonal tower at Ely cathedral

The pier at Southwold



'The Scallop', a sculpture by Maggi Hornsby on the beach at Aldeburgh, Suffolk. The words at the edge of the shell read 'I hear those voices that will not be drowned' from Britten's opera Peter Grimes.

Thank you from Deb and Chris

The coffee morning was a great success. I think everyone enjoyed themselves and the event not only raised lots of money for Macmillan Cancer Support but also enabled old friends to meet and chat. Over 60 people came along. Donations are still trickling in and the total has risen past £750. With Gift Aid that will put the total raised to over £1000. Well done to all who came.

I found the occasion strangely moving. How can a room full of people, many of whom I hardly know, (Deb knows them all of course) all drinking coffee and eating cakes, get you so emotional? I think it was the feeling of good will and support from your friends family and neighbours. Everyone was there because they knew Deb and cared about her. It is the fashion to mock UK culture. But I am glad I live in a society which still makes health care available on the basis of need rather than on the basis of who can pay and where we still care enough about our neighbour to give support in a difficult time.

Thanks to you all

Deb and I now are off to Aldeburgh on the Suffolk coast for a few days. Rest and recuperation and Adnams beer and fish and chips.