Visit to the QE on 29 June for blood test and to see Dr Sanghera. We discussed the following issues:
Deb's progress over the last month
In recent days Deb has not felt so good. Her headaches have been more painful and of longer duration. She has been more dizzy and has felt sick. The dizziness was of some concern because this was of the type she experienced before treatment started and we were concerned it might be due to the mass effect from the tumour. Although Deb has been doing a lot. This is Deb's diary for the last week:
Wednesday - Visit to Steve and Carole in Bristol
Thursday - Trip with Sutton Cancer group to theatre in Lichfield - Deb said she laughed a lot - just what she needs
Friday - Cherry's birthday party (great curry Martin - got home about 11:30 pm)
Saturday - Dinner at Nicky and Neil's (Sam's Jenni's parents)(They live in 30 acres of countryside in Warwickshire and have the most beautiful herd - 25 animals - of alpaca. )
Got home about 11:45 pm.
On Sunday Deb was supposed to be doing the Race for Life at Sandwell Valley but not surprisingly she did not feel up to it and spent most of the day resting. I'm going to have to take more control of her diary and book in some rest days.
Chemotherapy
The blood test was OK. The red blood cell count was a little below the normal range but Dr Sanghera was happy and prescribed another month of chemotherapy. Dr Sanghera explained that the 'standard' treatment with temozolomide in the UK is for a six month period. (The research shows it is effective for 6 months and after that some researchers think the cells become resistant and the drug has less effect.) However in the USA a continuous regime is normally used. This is why it is only approved by NICE for a six month period. Following the combined chemo/radiotherapy Deb has so far been taking temozolomide first in a monthly cycle for 4 months and then, following the poor scan result, on a continuous daily basis for a further 4 months. This is at variance to the 'standard' treatment. Dr Sanghera is of the opinion that the continuous regime is more effective and we will carry on with this until there is evidence to the contrary. The applications for providing the drug have not been questioned and funding does not seem to be an issue.
Steroids
Dr Sanghera was keen to ensure Deb had a good quality of life. We discussed the following side effects from steroid use that cause Deb distress:
Frequency of micturation - Deb has to pee a lot. Sometimes this is difficult to control and we have to be conscious of ensuring toilets are close to hand when we go out. Dr S thought we should be able to do something about this. First we have to rule out diabetes and thyroid malfunction (both rare side effects from steroid use). Deb was tested for this 3 months ago but we have arranged with our GP to have a further test. If these are negative Dr Sanghera will arrange for Deb to see an endrinocologist who hopefully will be able to sort this out.
Weight gain - over the past year, since starting the steroids, Deb has put on 2 stone in weight. This is very depressing for her. We discussed the options but these are limited. There are alternatives to dexamethasone (Deb's current steroid) but these may not be as effective and could have similar side effects. As a first option we are going to try reducing her daily dose from 3 mg to 2 mg. If this causes Deb problems we will know after 3 days and have to return to the current dose.
Surgery - Dr S is to discuss Deb's case with Mr Kay the neurosurgeon at the meeting tomorrow. They will review surgery to see if there are any suitable options for reducing the bulk of the tumour (and therefore steroid dose). We will discuss at our next meeting with Dr S.
MRI Scan
An appointment has been made for another MRI scan at the end of July.
Next week we are attending the Brain Tumour UK Patient and Carer Conference at the Abbey Hotel Golf and Country Club. Dont worry I will take full and copious notes so you wont miss a thing.
Monday, 29 June 2009
Some photos taken in June 2009
2 June 2009 - Flight of 21 locks at Hatton, Grand Union Canal (opened 1799)
4 June 2009 - Deb's 50th birthday present arrives
Monday, 1 June 2009
1 June 2009 - Appointment at QE Hospital - MORE GOOD NEWS
Deb had her fourth MRI scan since the radiotherapy treatment on 22 May. Today's visit to the QE was to see Dr Sanghera and get the results. It was more good news. The scan showed that the active part of the tumour (the grade IV part) was stable and had not got any bigger since the last scan. This is now 4 months without any significant progression of the disease. The scan also showed that the large mass of the low grade part of the tumour was considerably smaller than at the last scan. Dr Sanghera was pleased with the progress and following Deb's good blood test results (WBC - 10.5, RBC 4.16, PLT 207) prescribed another month of continuous chemotherapy.
MRI Scan
We looked at the scan at length. The grade IV part is on the right hand side of the tumour which is in the right frontal lobe of the brain. Although we had discussed it before I asked Dr Sanghera what that specific part of the brain did. He explained it controlled emotions and behaviour. I asked how the brain was being affected by the tumour and he said the main problem was the mass effect i.e. the volume of the tumour would put pressure on adjacent parts of the brain.
I asked how the low grade part of the tumour had shrunk. My understanding was that the chemotherapy attacks the active parts of the tumour by disrupting cell division. The low grade parts should not therefore be significantly affected. Dr Sanghera said the chemotherapy affected the genetic make up of the tumour cells and sometimes low grade tumours could also be affected. (I'm still none the wiser. Ill look it up on the Internet and ask him again next time we see him.)
When we saw Mr Kay, the surgeon, when Deb was first diagnosed, he said that brain surgery might be reconsidered if the tumour shrunk considerably during treatment. Given the shrinkage observed on the scan I asked if we should now be reconsidering surgery. It was decided that while Deb was stable we would not pursue surgery but this would be reconsidered if there was any deterioration.
Steroids
Both the frequency and duration (but not the severity) of Deb's headaches have increased in recent weeks. Deb has also been feeling more tired and is resting for longer during the day. Dr Sanghera asked Deb how was her quality of life now compared with six months ago - better, worse or about the same. Deb said 'about the same'. We discussed increasing the steroid dose but decided to leave it at its current level (3 mg per day)
Next MRI scan due in 2 months time.
MRI Scan
We looked at the scan at length. The grade IV part is on the right hand side of the tumour which is in the right frontal lobe of the brain. Although we had discussed it before I asked Dr Sanghera what that specific part of the brain did. He explained it controlled emotions and behaviour. I asked how the brain was being affected by the tumour and he said the main problem was the mass effect i.e. the volume of the tumour would put pressure on adjacent parts of the brain.
I asked how the low grade part of the tumour had shrunk. My understanding was that the chemotherapy attacks the active parts of the tumour by disrupting cell division. The low grade parts should not therefore be significantly affected. Dr Sanghera said the chemotherapy affected the genetic make up of the tumour cells and sometimes low grade tumours could also be affected. (I'm still none the wiser. Ill look it up on the Internet and ask him again next time we see him.)
When we saw Mr Kay, the surgeon, when Deb was first diagnosed, he said that brain surgery might be reconsidered if the tumour shrunk considerably during treatment. Given the shrinkage observed on the scan I asked if we should now be reconsidering surgery. It was decided that while Deb was stable we would not pursue surgery but this would be reconsidered if there was any deterioration.
Steroids
Both the frequency and duration (but not the severity) of Deb's headaches have increased in recent weeks. Deb has also been feeling more tired and is resting for longer during the day. Dr Sanghera asked Deb how was her quality of life now compared with six months ago - better, worse or about the same. Deb said 'about the same'. We discussed increasing the steroid dose but decided to leave it at its current level (3 mg per day)
Next MRI scan due in 2 months time.
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