Monday, 15 January 2018

15 January 2018 - Cancer Centre, Old QE Hospital, Birmingham

The visit today was to review Deb's treatment options following the multi-disciplinary team meeting on 9 January. Kate came with us to the meeting and we saw Dr Sanghera, consultant oncologist and Claire, Clinical Nurse Specialist.

Dr Sanghera gave feedback on the discussion at the MDT which mainly concerned whether surgery was appropriate at this time. The surgeon, Mr Kay, felt that, as Deb was still so well and essentially asymptomatic from the tumour, surgery, with all its concomitant dangers and possible side effects was an unnecessary risk at this time especially when there were no clear cut benefits to be derived from the operation. Surgery may well still be considered at a later time.

Dr Sanghera gave us 3 options:

1     Do nothing. Scan again in 2 months. Tumour growth does not appear to be rapid but we have limited data at present and a further scan would give us the opportunity to better judge exactly the pace of tumour development.

2     Resume chemotherapy with temozolomide and scan in 2 months. Although temozolomide did not prove very effective last time, Deb does tolerate the drug very well and it may have some effect in slowing tumour growth.

3 Start PCV chemotherapy immediately. This combination of drugs is more toxic than temozolomide and will have more significant effects on Deb's immune system and bone marrow.

After discussion, Deb chose the do nothing for 2 months option.

There is a risk that in waiting 2 months Deb will develop some symptoms from the tumour. These could be headaches, tiredness, nausea or dizziness.

We also discussed radiotherapy. Dr Sangera said this was still a possibility but it would be the treatment of last resort. RT is a very aggressive and causes damage to parts of the brain around the tumour.

So we do nothing and Deb will have another scan in 2 months from her last scan ie end of February.

Tuesday, 9 January 2018

9 January 2018 - BRIEF UPDATE

We were contacted this afternoon by Will (a clinical nurse specialist like Claire and Fred) following the MDT meeting. Deb's case was discussed but outcome of discussions not straightforward. Dr Sanghera wants Deb to go in either this week of early next week to discuss the options available to her. Dr Sanghera or his secretary will call us tomorrow to arrange a time. From what Will said it does not look like surgery is being considered. I don't know what other options there are other than more chemotherapy. Will update again when there is more news. 

Friday, 5 January 2018

4 January 2018 - Neurosciences Outpatients Department, QE Hospital

Today's visit was to review the results of Deb's MRI Scan on 30th December 2017 (her 44th)


The tumours had progressed.  The growth is slow but is happening,  We discussed three options with Dr Sanghera.

Option 1

Do nothing and have another scan in 2 months time.  Deb is well at the moment and tumour growth is slow and we could wait a couple of months before starting treatment.  During this time Deb could consider the course of action she wanted to follow.  However, we feel this just delays the decision and we will consider the other options now.

Option 2

Start Chemotherapy again. Dr Sanghera was particularly disappointed that the tumours had started to grow so soon after stopping Chemotherapy.  This demonstrated that the last course of chemo. was not as effective as when first used. The  new chemotherapy treatment would involve PCV.  Deb has had this previously.  PCV is a combination of 3 drugs, one of which is administered intravenously in hospital.  It is an older chemotherapy drug and more aggressive than Temozolomide.

Option 3

Surgery. Another brain operation to remove as much of the tumours as possible.

Deb's case will be discussed at the Multi-disciplinary Team Meeting (MDT) on Tuesday 9th, Dr Sanghera, Mr Kay (Surgeon) and the Radiologist will be present at the meeting.

The CNS Nurse will contact us on Tuesday afternoon to let us know the outcome of the meeting. I will post again then.

This was very disappointing news for us.  In the that past, Dr Sanghera has always given us the best advice and Deb will be guided by him.

Thursday, 7 September 2017

7 September 2017 - Neurosciences Outpatients Department, QE Hospital

Saw Dr Sanghera, Consultant Clinical Oncologist.

Deb is having some respite from her chemotherapy treatment and her last treatment cycle finished on 29 July.

Today's visit followed Deb's MRI scan (No. 43) on Tuesday 22 August. The following matters were discussed:

1.     Great news!!! The tumours had remained the same size as at the last scan.So it appears the cancer has been stopped; at least for the time being. Deb will now stay off the chemo until there is any evidence of progression of the tumours.

2.     Dr Sanghera remains concerned about the effect of medication on Deb's brain. We compared the latest scan with the scan taken just after Deb's diagnosis (August 2008). You could see definite shrinkage of the brain including parts not affected by the tumour. I asked about the significance of the shrinkage but Dr Sanghera was unable to be specific as the brain would have shrunk naturally due to ageing. Deb will be referred to a Dr Shurman, a rehabilitation specialist, who will review her overall condition.

3.     On looking again at the 2008 scan both Deb and I were shocked at the size of the original tumour. (10cm by 8cm if I remember correctly). It seemed to fill half the head, squeezing the rest of the brain against the skull.

4.     Dr Sanghera reviewed Deb's current medication. He thought that she had been on the phenytoin (a drug to prevent seizures) for a long time and Deb has never had a fit. Deb had a blood test to measure current phenytoin levels prior to Dr Sanghera making a decision to gradually get Deb off the drug.

This was a good visit. We will see Dr Sanghera in 3 months time following another scan.

Tuesday, 25 July 2017

24 July 2017 - Cancer Centre, Old QEH, Birmingham

A short visit to the Cancer Centre this time. The Centre was quiet and there was no queuing  for the blood test or waiting to see the doctor. Deb's blood test results were OK and she started her 12th cycle of chemotherapy. After this cycle she will stop for a period. She is due to have another scan in August and we will see how things develop.

She has an appointment in August to see a physiotherapist who specialises in neurological issues and will see an audiologist in September re her balance problems.

Next visit will be to get the results of the August scan.

Wednesday, 28 June 2017

27 June 2017 - Cancer Centre, Old QEH, Birmingham

Deb on the quayside at the old harbour, La Rochelle

Deb has completed her 10th cycle of chemotherapy. Two more to go before she gets some respite. Over the last month her problems with balance, concentration have continued. We have been on two holidays this month; to La Rochelle and Stockholm. Both of these have involved some walking and occasionally Deb found this very difficult. In addition, Deb has now developed an intermittent tremor in her right hand. 

This time we saw Dr Sanghera and discussed the ongoing issues. He had said Deb's problems were not due to the tumours but had been caused by the effect of radiotherapy and other treatments on the brain. Deb's brain must be one of the most scanned in history. I asked Dr Sanghera if you could see on the scans any general changes to the brain. He said you could see some general shrinkage. 

Debs blood test results were good and she was prescribed her next cycle of Temozolomide. Next appointment in one months time.

Wednesday, 31 May 2017

30 May 2017 - Cancer centre, Old QEH, Birmingham

Deb shortly before her diagnosis in May 2008

Deb was diagnosed on 23 May 2008, so she has now lived with this tumour for 9 years. I cannot even begin to understand what this must do to you mentally. Your brain is you. The seat of all your thoughts and emotions. To have a tumour in there, always in there, always just waiting to grow and take over the very essence of you must be very frightening. And in an effort to stop the tumour you bombard your brain with very high levels of radiation and very toxic chemicals. Radiation and chemicals whose very job is to kill living cells within your brain. That must have an effect on you, the very thoughts and emotions that make up what you are.

OK, Deb has completed her 9th cycle of chemotherapy. For some time Deb has had a variety of symptoms which were low level and intermittent but lately have become more pronounced. These include: dizziness and she falls more often, when she walks she often has a tendency to shuffle rather than pick up her feet properly, she leans while walking and going down a slope will get faster and faster and be unable to stop herself, she lacks concentration and will often start something then leave it half way through to start something else, her handwriting is deteriorating. Deb has discussed these problems with our GP who says he believes they are tumour related (many are also symptoms of Parkinson's disease but he does not think Deb has this). Deb had sent a note to Claire (the Clinical Nurse Specialist) explaining her concerns. 

First we met Dr Sanghera's registrar who discussed the issues and did a variety of tests on Deb relating to balance and body strength. Deb had her blood tested and we then met Dr Sanghera who did more tests. One of these was Unterberger's stepping test (you hold your hands out in front of you, close your eyes and walk on the spot for a minute or two). Most people stay more or less where they are but Deb slowly rotated through more than 90 degrees without knowing it. This test measures the effectiveness of the vestibular system (in the ear) which gives us our sense of balance. Deb has therefore been referred to an audiologist for further testing. In Dr Sanghera's opinion the symptoms Deb is experiencing are not due to the tumours themselves but are a product of the radiation and chemotherapy treatments that Deb has had over the years. The cumulative effect of the treatments may have caused a general deterioration within the brain. We did discuss whether the current course of chemotherapy was causing the problems. It was felt that this was unlikely and it was agreed that treatment should continue. 

We return to the hospital in a months time.