30 August 2018 - Radiotherapy Department, Cancer Centre, Old QE Hospital

Deb having her mask made - the red lines are the laser to ensure accurate positioning on the table

Visit to the Cancer Centre to have the preliminary work carried out in order for Deb to have her radiotherapy. This included having a mask made to ensure her head is accurately located during RT and a CT scan (while Deb is in the mask) which is used by the consultant to pinpoint where to target the radiation.

Deb also had a further blood test. Her platelet count was about the same as last week. We discussed the results with Fred Berki, who came to see us while we were in the RT waiting area. Fred thought the results were OK but he would discuss them with Dr Sanghera to see if any further blood tests would be required.  

The mask of Deb's head is made in the Mould Room. With Deb lying on a replica of the table used in the RT, the technicians  first made a headrest out of a material which can be moulded when first mixed with water but then sets hard. To make the mask, they  put a flat screen of mesh material into a hot water bath to make it pliable  and then stretch it over Deb's head and clip it to the table as shown in the photo. Deb and the mask were accurately positioned using a pair of lasers. Deb then had to lie perfectly still for 15 minutes while the mask set hard.

Deb's first radiotherapy session is on 17 September. Complete treatment is 20 sessions over the next 4 weeks.

23 August 2018 - Neurosciences Outpatients Dept, QE Hospital

Deb with Kate's new dog

Meeting with Dr Sanghera (oncology consultant) and Fred Berki (CNS) to discuss future treatment for Deb's tumour. 

On Tuesday this week a multi disciplinary team (MDT) meeting had been held when Deb's case was considered. The main options discussed were surgery and radiotherapy. The opinion of Mr Kay, the Neurosurgeon, and the rest of the meeting was that surgery was not a good option and the best way forward was a course of radiotherapy. It was felt that because of the time that had elapsed since the last treatment the brain had had a chance to recover from the original radiotherapy and further treatment at a lower dose would be appropriate. Dr Sanghera considered that the radiotherapy was best carried out now while Deb was still relatively well and could withstand the treatment. He did stress the possible side effects - tiredness, hair loss, cognitive disruption - and made sure Deb was entirely happy with proceeding.

Deb agreed to this course of action and signed a consent form.

The next step is for Deb to visit the hospital next week to have a CT scan which is used to provide information to target the radiation accurately and to have a mask made of her head. The mask is used to restrain Deb's head during radiotherapy so the gamma rays are accurately targeted. The radiotherapy will likely start the following week i.e. the first week in September and will consist of 40 sessions over 4 weeks. The effects of the radiotherapy are cumulative and as treatment progresses Deb is likely to feel very tired which could continue for 2 or 3 weeks after treatment ends. We will be contacted with the exact dates in the near future.

Deb had another blood test and the platelet count was 59. This was a slight improvement on the previous count. Dr Sanghera thought that Deb did not need a blood transfusion but would monitor her platelet count again on her next visit to the hospital.

We also discussed how Deb was responding to the lower dose of steroids. Deb (and I) had noticed a deterioration in her since the reduction and it was agreed that the dose would be returned to the  previous level (4mg).

I have now known Dr Sanghera, Fred and Claire for 10 years. We have seen them approaching 150 times. They are friends as well as professional medical staff. At this visit they were both very kind and supportive. They are good people.

20 August 2018 - Cancer Centre, Old QE Hospital

Deb in her wheelchair on Brighton seafront

Visit to Cancer Centre for a meeting with Dr Sanghera. Also present Dr Allos (registrar) and Fred Berki (CNS).

Dr Sanghera explained that the latest scan results indicate that the chemotherapy is not proving very effective in stopping tumour growth. In addition the chemo was affecting Deb's blood cell production and in particular her platelet count was very low (normal range is 150 to 400. Deb's count today was 47. Below 30 action has to be taken to improve the count, usually by a blood transfusion.). Dr Sanghera therefore recommended that chemotherapy was stopped. 

He said we had various options: 

1) Do nothing and have another scan in one month's time. 

2) Have a second course of radiotherapy. This would be 20 sessions over 4 weeks at lower dose than  Deb's original radiotherapy. The first course of radiotherapy was given at the maximum dose it is thought the brain can tolerate and it is not common to give a second treatment. Dr S is recommending the treatment because it is 10 years since Deb was first treated, he thought she could tolerate the treatment and she would benefit from it.

The side effects from radiation to the head could include: hair loss in the area of the head that is being treated. tiredness, worsening of the brain tumour symptoms before they improve, sickness. There is also a risk of cognitive impairment. With a second treatment the risk of side effects is increased.

3) He could go back to Mr Kay and discuss surgery again.

He gave Deb a few days to go away and think about what she wanted to do and we are due to return to the hospital on Thursday 23 August. At that time Deb will also have a further blood test to see if the platelet count has improved. 

Deb was prescribed steroids (dexamethazone) at the last visit. In the time she has been taking them she has markedly improved. Her movement and posture has been better, her mental capacity and alertness has improved, she has slept less and ate more. Dr Sanghera explained this was a short term 'bounce' in improvement and as the tumour progressed higher doses of steroid would be required to keep the swelling around the tumour in check. In the mean time Deb will continue with the steroids although at a reduced dose (2mg a day instead of 4mg).

Deb has already decided she will proceed with the radiotherapy.

13 August 2018 - Cancer Centre, Old QE Hospital

Deb had her latest MRI scan (her 47th) on 21 July 2018. This scan was only 6 weeks after the previous scan. A shorter time period was decided upon to allow close monitoring of tumour growth. At the hospital we saw Dr Beshar Allos, registrar to Dr Sanghera who was on holiday.

Screen shots of Deb's scans are shown below. The MRI takes horizontal slices through the brain. The images are then shown reversed on the screen . So although Deb's tumour is in her RHS frontal lobe, it is shown on the left in the scans. In all cases the scan on the right of the picture is from 18 Feb 2018 and the latest scan (21 July) is on the left.

Photo1: Actual screen shot showing tumour growth. The white areas on the top LHS show where the tumour is actually growing.

Photo 2: Screen shot showing growth. I have marked where I think the tumour is. I may have got this wrong - a lot of the tumour is darker and not actually progressing at this time. But you can see growth over the last 6 months.

Photo 3: This is a screen shot of a different scan showing swelling around the tumour.

Photo 4: I have marked where I think the actual swelling is (fluid produced by the brain's reaction to the tumour). Again you can see that the amount of swelling has increased.

Dr Allos said that the radiologist's report on the latest scan indicated that there had been further tumour growth. This was less marked than the growth that had happened between the previous two scans. He said the changes were subtle and small and he said it was a difficult to decide whether to continue with the chemotherapy or change to another therapy (ie radiotherapy.).  Dr Allos thought that the decision as to how we should proceed should best be made by Dr Sanghera and suggested we did nothing for a week and returned next Monday when  Dr Sanghera would be back. We therefore made arrangements to return on 20 August at 12.50.

We discussed how Deb had been over the past couple of months. I read from my list. I thought there had been significant deterioration. In particular: Deb had more difficulty in walking; she now always used a stick. We have borrowed a wheelchair and use this for any distance over about 50 yards. She slumps to her left when sitting and this is more pronounced. Often she has trouble getting up and down stairs. Her writing is often illegible and she has had periods when she is not aware of what is going on. She has difficulty with some simple tasks. She sleeps a lot more etc etc.

Dr Allos thought these symptoms may be a result of the increased swelling in the brain caused by the tumour. Because the brain is encased within the skull any swelling will squeeze the brain within the cranium and could cause a variety of symptoms. He has put Deb back onto steroids (dexamethazone, 4mg per day) to see if this reduces the swelling and improves her condition.