29 June 2009 - Appointment at QE Hospital

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.