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