12 January 2009 - 4th Cycle of Chemotherapy

Following last week's low platelet count we returned to the hospital today for further blood test. Results:

White blood cells - 9.1 K/uL (reference range 4.1 - 10.9)
Red blood cells - 4.0M/uL (reference range 4.2 - 6.3)
Platelets - 308 K/uL (reference range 140 - 440)

An excellent result. We did not see Dr Sanghera (the clinic was very busy) but saw his registrar instead. He prescribed the chemotherapy at the same dose as for the previous cycle (380 mg per day).

We also discussed Deb's steroid dose. It was agreed that she would drop from the current dose of 1.5 mg to 1.0 mg per day. We tried this before and went back up to 1.5 when Deb started to get more severe headaches. We will see how it goes.

Deb has received an appointment for a further MRI scan. This will take place at the Edgbaston Hospital ( a private hospital near the QE) on 29 January. We are not sure if this is the spectroscopy MRI scan or the next routine scan.

I need to lose weight!

START WEIGHT = 13 st 4 lbs
TARGET WEIGHT = 12 st 4 lbs
CURRENT WEIGHT = 13 st 1 lbs

A good start - 3 lbs in the first week. But we all know this is the easy part. Will power is strong (apart from the cheese).

5 January 2009 - Appointment at Queen Elizabeth Hospital

5 January 2009 - Deb sat on bed with a cup of tea and a Welsh cake

Today was supposed to be the start of Deb's fourth cycle of chemotherapy. We went to the QE and Deb had her usual blood test. The important results were:

White blood cells - 13.6 K/uL (reference range 4.1 - 10.9)

Red blood cells - 3.98 M/uL (reference range 4.2 - 6.3)

Platelets - 97 K/uL (reference range 140 - 440)

When we saw Dr Sanghera he was particularly concerned with the platelet count (platelets are tiny cells in the blood that help it to clot. They are made in the bone marrow and usually survive for only 7 - 10 days). The chemotherapy drug is designed to attack cells that are dividing quickly and therefore can have side effects on the short lived cells in the blood. It is recommended that chemotherapy is deferred if platelet levels fall below 100. Dr Sanghera therefore decided to delay the next cycle of chemotherapy for one week and we return to the hospital next Monday for a further blood test. He was concerned that we need to ensure that Deb's chemotherapy dose is appropriate and is not having too severe an effect on her body. To continue with the chemo now may reduce the platelet count even further and lead to significant problems. Fred (Macmillan nurse) said we should not be downhearted at this. It was routine and frequently happened.

We also discussed Deb's palpitations (or arrhythmia as Dr Sanghera called them). During an episode which lasts about 1.5 to 2 hours Deb's heart rate rises to between 185 - 190 per minute and her blood pressure drops to a figure that cannot be measured on our monitor. Deb has had these palpitations for a long time but before diagnosis of the tumour they happened once or twice a year. Now they seem to be happening once or twice a month. (She had one on the evening of our party - just as people were leaving). Dr Sanghera said these were not related to the tumour or the treatment but did need to be treated and we should go to see our GP.

3 January 2009 - Open House at the Eatons

Some pictures of family and friends at our house on the 3 January.

The purpose of the day was for Deb and myself to say thank you to everyone who has given us support over the last year. Not just practical help but more importantly emotional support and friendship at a difficult time. This is a gift beyond value. We are truly luckly to have so many family and friends who care.

Thanks to you all.

I need to lose weight!

This picture taken on New Year's Eve tells the story. Years of idleness and binge eating have taken their toll and I need to lose weight fast.

I toyed with the idea of taking a proprietary slimming compound - just vitamins and essential nutrients in a milkshake - but I have been convinced this is too drastic. So I will lose weight by taking the simple step of eating less and exercising more. If this does not work I may have to resort to the vitamins and water diet.

In a determined attempt to make me say no to that second bowl of pasta, I have decided to broadcast my weight loss on the blog. You can all share in my successes and failures as month by month I strive for a slimmer fitter me. My aim is to lose a stone in weight. I start today.

START WEIGHT = 13 st 4 lbs

TARGET WEIGHT = 12 st 4 lbs

CURRENT WEIGHT = 13 st 4 lbs

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