6 weeks of combined radio/chemotherapy now complete. That's the end of the combined treatment: 30 fractions of radiotherapy - 40 doses of chemotherapy.
We knew the affects of the radiotherapy were cumulative and Deb continues to feel very dizzy and tired. Her skin has also changed colour in places and she has suffered from rashes where her clothes make contact with her skin. Her hair has now started to seriously recede and she is wearing a headscarf when she goes out. We have also had a couple of days (well nights really) when we both have been a bit low. Most articles on glioblastomas mention life expectancy and this news is not good. We expect to be at the top end of any frequency distribution; for all the reasons we know about - Deb's age, fitness, lack of symptoms before diagnosis, positive attitude - and modern drugs do work wonders. Even so; one gets frightened at times. There is a scene in Ghostbusters where they go into an apartment that is haunted and open a fridge door in the kitchen. The fridge in fact provides a gateway to Hell and instead of seeing milk and cheese there is a view of terrifying ghouls and monsters. Our life can be like that - an innocuous remark or thought can open the fridge door and send you spiralling into panic. Deb is still keeping off the sleeping pills and has developed some sort of sleeping routine. We now go to bed about midnight and Deb will wake up about 5. It still doesn't seem enough to me but Deb seems to have got used to it.
On Friday 12 September, Deb had her sixth and final (at least for this part of the treatment)blood test. The results were again OK. Throughout the radiotherapy Deb's bloods have remained relatively normal.
On Monday 15 September Deb had her final review with Dr Chan. We discussed:
- Blood test results.
- Dizziness: Because Deb has continued to feel dizzy, the radiotherapists arranged for her to have her blood pressure taken. Apparently the radiation can effect the blood vessels in the brain causing the walls to become weakened, this can lead to blood rapidly leaving the head when you stand up causing lack of glucose in the brain and dizziness. When measured Deb's blood pressure was high (something like 175/90). The consensus at the review was that this was probably treatment related. During the review they tested Deb's blood pressure again; once when she was lying down and then again immediately after she had got up. This was fine. Not a lot of difference between the readings and at the top end of the normal range. We will check her BP ourselves over the next few weeks just to make sure things are OK. If top figure greater than 160 we are to let Fred know. If bottom figure consistently higher than 90 contact GP. The steroids can also effect sugar levels in the blood (diabetes is another side effect) so we will get our GP to check this. The dizziness concerns me. One of the original symptoms of the tumour was dizziness; how can we be sure this is not the tumour returning? Clare (the Macmillan Nurse) said that the effects of the radiotherapy are cumulative; it will carry on having an effect for some weeks after the treatment has finished. It will take about 6 weeks to get over it. If the dizziness persists and or gets worse we will contact the hospital. They will arrange for a scan. They would not be looking specifically at the tumour but to see if anything else had happened in the brain (stroke etc) - if a problem they can give medication to help.
- Steroids; because of dizziness, we increased dose from 4 to 6 mg per day. Dr Chan advised we should reduce back to 4. Deb will continue at this level until her chemotherapy cycles start in 4 weeks time.
Next appointment made for 13 October. On that day Deb will have a blood test and then see the consultant. If results of blood test are OK then we will be given a prescription for 5 days of the chemotherapy drugs. The dose during the monotherapy will be higher than the combined therapy - it is likely to be something like 200mg (combined therapy dose was 135mg). Dosage is worked out on surface area of the body (which is why they needed to know Deb's height and weight before prescribing).
After the review Deb and I had a long talk with Fred Berki. I had a number of questions (10) to ask and as the doctor had to attend a meeting Fred agreed to answer them. It was good to talk to Fred. I felt reassured. Most of what we talked about I have already covered but two of his answers are given below:
Q1 What will be the procedure we follow over the 6 cycles of chemotherapy?
A1 The first cycle will start on 13 October. Before each cycle Deb will have a blood test and see the doctor who will make a decision as to whether the chemotherapy can proceed. If the blood test results are poor we may delay the onset of the chemotherapy by a week or so until they improve. If blood tests are OK you will be given a prescription for that months drugs. The trust has given funding for the temozolomide for 6 months. If at the end of those 6 months Deb is OK then a further application for funding will be made to allow Deb to continue to take the drug. She may well be on the monthly cycle course of chemotherapy treatment indefinitely.
Q2 When will Deb have another scan? My understanding is that the 'hot spots' seen in the earlier scans were due to increased blood flow in the area of the active part of the tumour. If the radiotherapy has 'killed' the tumour cells then the 'hot spots' will not be there.
A2 Nobody knows why but the radiotherapy actually makes the tumour look worse. If we scanned now it would actually look as though the tumour size had increased, even though this is not the case.The effect of the RT continues after the cessation of treatment for a period of about 6 weeks. The hospital will take a scan in 6 - 8 weeks time. This will then be used as a baseline for further scans to detect any changes in the tumour.
On Friday 12 September, Deb and I attended the inaugural meeting of the West Midlands Brain Cancer Support Group which took place in Birmingham Central Library. The group was set up by Ann Atkins whose daughter Iona aged 6 has a brain tumour and Jean Tomlinson, a brain tumour patient. Brain Tumour UK, a charity provided some help in getting the group off the ground and Macmillan provided a facilitator who led the discussion. We agreed who the group was for, what we wanted from it, some of the main tasks and who was going to do it. (Deb volunteered to help out with the organisation). It was good to talk to the other brain tumour patients and carers (about 12 people attended). Harry and Nicky Tempest were there. Harry was diagnosed with a GBM tumour like Deb in November 2006. He has been on temozolomide ever since and has now had about 18 cycles. The next meeting is on 17 October.
So we now start a period without radio/chemotherapy. Hopefully Deb will improve as the effects of the treatment wear off. We have booked a cottage for a holiday, 29 September - 3 October in Aldeburgh, Suffolk. I have already begun to think about what books I will take.
Love to you all Chris
1 comment:
Thank you so much Chris for keeping us updated. You have both been so brave over the past few months,and i am sure this will continue. I know when speaking to Deb she remains so positive even though she is feeling awful, this is one of the reasons i love her so much, our thoughts and love are with you. Andy xxxxxxxx
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