Deb had her sixth MRI scan since the radiotherapy treatment on 17 September. Visit to QE on the 21 was to discuss the results of the scan with Dr Sanghera. Sam and Kate both came to the hospital with us.
MRI Scan
This was more good news. The grade iv part of the tumour was still stable and the total bulk of the tumour again appeared to be slightly reduced in size. Deb is obviously continuing to respond well to the continuous chemotherapy. It is now 8 months without significant progression of the tumour.
Blood tests
The blood analysis machine was not working so Debs blood samples had to be sent to the lab and we did not get the results while we were at the QE. However Dr Sanghera had looked at Deb's blood test results from last month and said that the lymphocyte count (a type of white blood cell that fights infection) was slightly low. He was concerned that Deb may be susceptible to a type of pneumonia (pneumocyctosis) and has prescribed a preventative antibiotic which Deb will have to take twice a day, three times a week. When we did get the blood test results Deb's lymphocyte count was higher than expected (not good news could be due to an infection) but we are continuing with the antibiotics.
(Pneumocystis pneumonia (PCP) or pneumocystosis is a form of pneumonia, caused by the yeast-like fungus Pneumocystis jirovecii. This pathogen is specific to humans. It has not been shown to infect other animals, while other species of Pneumocystis that parasitize other animals (all of which are mammals) have not been shown to infect humans.[1]
Pneumocystis is commonly found in the lungs of healthy people, but being a source of opportunistic infection it can cause a lung infection in people with a weakened immune system. Pneumocystis pneumonia is especially seen in people with cancer, HIV/AIDS and the use of medications that affect the immune system.)
Other health related issues
Deb and I have started a six week course in exercise and relaxation at St Giles Hospice, Sutton Coldfield. The exercise is all done sitting down but all muscle groups are worked. It is good although I cannot shake off the feeling when I am sat on a chair waving my arms about that I am in a old people's home and the bingo will be brought out next. For the relaxation we are trying a different technique each week. Last week was sensing each part of your body and then letting go. This week was a visualisation technique. You are on a beach, the sand is golden, the warmth of the sun etc etc... The plan is that Deb and I are going to find some time to do this everyday. We haven't quite managed it yet.
We have also seen the psychologist at the QE. She is helping us to come to terms with what has happened. We have had two sessions so far. We have talked about how Deb was diagnosed, her treatment since then, our feelings and emotions. Our aim is to improve the quality of the time we have left. It is good to talk to someone in a structured way but no one can make the tumour go away. Perhaps we can learn to come to terms with our situation.
Thursday, 24 September 2009
Tuesday, 8 September 2009
8 September 2009 - Appointment with neurosurgeon, QE hospital
When Deb was first diagnosed, following her biopsy we saw Mr Kay, the Neurosurgeon and discussed surgery. He advised that surgery was not the best option. Since then Deb's case has been raised several times at the QE multi-disciplinary team meetings and each time the surgical option has been reviewed. As a year has now passed and we have had number of MRI scans Deb and I asked if we could meet Mr Kay to review the position with regard to surgery.
We met Mr Kay on 8 September. He started by asking what could he do for us. Deb was slow to respond so I started to speak and he shut me up and said he wanted to hear directly from the patient. This was good. Deb said that we had discussed surgery a number of times with Dr Sanghera but it had been ruled out and we both thought it would be useful to speak directly to Mr Kay.
We started by looking at a scan from May 2008 ie when Deb was first diagnosed. Mr Kay showed us the total size of the tumour, the Grade IV abnormality (where the biopsy was taken from) and the oedema (fluid) in the brain around the tumour site. He then showed us the last scan (from July 2009). On screen he measured the bulk of the complete tumour and showed that over the period of Deb's treatment the tumour had reduced in size by 10%. (He said 10% may not seem like much but in volume terms it was a lot. I did some calculations and using the formula for the volume of a sphere worked out that if the diameter reduces by 10% the volume reduces by 27%). He showed us the differences in the grade IV abnormality. In 2008 it showed up all white on the scan where the contrast medium was used (indicating a large blood supply to this area and lots of growth). In 2009, although the area was about the same size the centre was now completely dark showing necrotic cells with a lighter edge. He also compared the level of oedema between 2008 and 2009; again this had significantly reduced.This was all good news showing Deb was responding very well to the treatment.
Mr Kay then showed us the part of the tumour he could remove by surgery. This was about 40 to 50 % of the tumour located on the right hand side of the brain and included the grade IV abnormality. He said at this time there was little advantage in carrying out surgery. As we have been told before he said that there were abnormal cells all around the tumour and removing this one area would not improve Deb's prognosis. The removal of some bulk may improve fluid flow within the brain and allow a reduction in steroid dose. But if this did happen the reduction would only be minor and Deb would still have to take daily steroids and would have the same side effects. Mr Kay considered the operation to remove this part of the tumour to be relatively low risk but any brain surgery is potentially hazardous to the patient. He quoted the examples of Seve Ballesteros and Senator Kennedy, both who nearly died during surgery on their tumours.
Some brain tumours can develop 'cysts'. These can develop very quickly and cause local swelling. Or the tumour itself might start to progress more rapidly. Under these conditions surgery may well be appropriate.These issues would be kept under review and if at any time in the future conditions changed, the surgical option would be reviewed.
I said that throughout Deb's treatment we had concentrated on the grade IV abnormality. The biopsy sample was taken from there and after each subsequent scan this is the area we have concentrated on. I asked that as this was the area of most concern wouldn't removing it at this time, while Deb was still well, 'buy us some more time'. Mr Kay said that because Deb was so well and obviously responding well to treatment it was not the right time to operate. If the tumour progresses or Deb deteriorates then at that time we should reconsider surgery.
Mr Kay ended the meeting by saying he didn't propose to call us in again but he would see us at any time if there was an issue we wanted to discuss with him.
This was a good and positive meeting. I thought that if anybody had to operate on my brain I would choose Mr Kay.
We met Mr Kay on 8 September. He started by asking what could he do for us. Deb was slow to respond so I started to speak and he shut me up and said he wanted to hear directly from the patient. This was good. Deb said that we had discussed surgery a number of times with Dr Sanghera but it had been ruled out and we both thought it would be useful to speak directly to Mr Kay.
We started by looking at a scan from May 2008 ie when Deb was first diagnosed. Mr Kay showed us the total size of the tumour, the Grade IV abnormality (where the biopsy was taken from) and the oedema (fluid) in the brain around the tumour site. He then showed us the last scan (from July 2009). On screen he measured the bulk of the complete tumour and showed that over the period of Deb's treatment the tumour had reduced in size by 10%. (He said 10% may not seem like much but in volume terms it was a lot. I did some calculations and using the formula for the volume of a sphere worked out that if the diameter reduces by 10% the volume reduces by 27%). He showed us the differences in the grade IV abnormality. In 2008 it showed up all white on the scan where the contrast medium was used (indicating a large blood supply to this area and lots of growth). In 2009, although the area was about the same size the centre was now completely dark showing necrotic cells with a lighter edge. He also compared the level of oedema between 2008 and 2009; again this had significantly reduced.This was all good news showing Deb was responding very well to the treatment.
Mr Kay then showed us the part of the tumour he could remove by surgery. This was about 40 to 50 % of the tumour located on the right hand side of the brain and included the grade IV abnormality. He said at this time there was little advantage in carrying out surgery. As we have been told before he said that there were abnormal cells all around the tumour and removing this one area would not improve Deb's prognosis. The removal of some bulk may improve fluid flow within the brain and allow a reduction in steroid dose. But if this did happen the reduction would only be minor and Deb would still have to take daily steroids and would have the same side effects. Mr Kay considered the operation to remove this part of the tumour to be relatively low risk but any brain surgery is potentially hazardous to the patient. He quoted the examples of Seve Ballesteros and Senator Kennedy, both who nearly died during surgery on their tumours.
Some brain tumours can develop 'cysts'. These can develop very quickly and cause local swelling. Or the tumour itself might start to progress more rapidly. Under these conditions surgery may well be appropriate.These issues would be kept under review and if at any time in the future conditions changed, the surgical option would be reviewed.
I said that throughout Deb's treatment we had concentrated on the grade IV abnormality. The biopsy sample was taken from there and after each subsequent scan this is the area we have concentrated on. I asked that as this was the area of most concern wouldn't removing it at this time, while Deb was still well, 'buy us some more time'. Mr Kay said that because Deb was so well and obviously responding well to treatment it was not the right time to operate. If the tumour progresses or Deb deteriorates then at that time we should reconsider surgery.
Mr Kay ended the meeting by saying he didn't propose to call us in again but he would see us at any time if there was an issue we wanted to discuss with him.
This was a good and positive meeting. I thought that if anybody had to operate on my brain I would choose Mr Kay.
Some photos from August
31 August - View from top of Spinnaker Tower, Portsmouth :taken by Tom Hams during our stay with Andy and Steve and Becky and Tom (and Katie) in Lee on the Solent
24 August 2009 - Appointment at QE Hospital
Sorry I am late with this post. Deb had her usual monthly appointment with the oncologist on 24 August. Dr Sanghera was on holiday so we saw his registrar (I didn't catch her name). She had obviously been told to just mind the desk and don't change anything unless you have to. We therefore rushed through the appointment in a few minutes. I don't think she even lifted her head to look at us. She asked how Deb had been (She had been good), she looked at the blood results (these were good) and she wrote out a prescription for more chemotherapy. That was that. Nothing much to report. She did say Deb would have another scan towards the end of September.
Monday, 27 July 2009
27 July 2009 - Appointment at QE Hospital
Deb had her fifth MRI scan since the radiotherapy treatment yesterday on 26 July. Today's visit to the QE was to see Dr Sanghera and get the results.
MRI Scan
MRI scan was carried out on a Sunday - yes a Sunday. Its good to see the NHS making full use of expensive resources. Today we got the results of the scan and it was more good news. The scan showed that the active part of the tumour (the grade IV part) was still stable and was slightly smaller in size than 2 months ago. This is now 6 months without any significant progression of the disease. The low grade part of the tumour was also slightly smaller than at the last scan. Dr Sanghera was pleased with the progress and following Deb's good blood test results prescribed another month of continuous chemotherapy.
Results of Multi Disciplinary Team Meeting
At the last appointment with Dr Sanghera we had again discussed whether surgery was appropriate and this option had been discussed at an MDT meeting. Mr Kay, the neurosurgeon, said he could remove the active part of the tumour (or at least the active bit we can see on the scan).The opinion of the team was that surgery would not improve Deb's prognosis but may have some benefits in reducing the mass effect from the tumour and oedema (fluid around the tumour) There are risks from surgery and the balance of opinion thought that while Deb was responding well to the temozolomide treatment surgery was not the best option. However Deb and I are to have a meeting with Mr Kay to discuss the issue.
Steroids
Following the last appointment with Dr Sanghera, Deb dropped her steroid dose from 3 mg per day to 2 mg. After 10 days to 2 weeks she found she was suffering from increasing dizziness and after discussion with the clinical nurse specialist went back up to 3 mg. This seems to be about the right level for her. I asked if oedema could be seen on the scan (the tumour creates lots of fluid in the brain) and if so could we use the scan to monitor the effectiveness of the steroid dose. Dr Sanghera showed us another view of the scan which clearly showed the oedema around the mass of the tumour but Deb's symptoms are a more reliable way of deciding what dose of steroids is appropriate.
Drug trials
MRI Scan
MRI scan was carried out on a Sunday - yes a Sunday. Its good to see the NHS making full use of expensive resources. Today we got the results of the scan and it was more good news. The scan showed that the active part of the tumour (the grade IV part) was still stable and was slightly smaller in size than 2 months ago. This is now 6 months without any significant progression of the disease. The low grade part of the tumour was also slightly smaller than at the last scan. Dr Sanghera was pleased with the progress and following Deb's good blood test results prescribed another month of continuous chemotherapy.
Results of Multi Disciplinary Team Meeting
At the last appointment with Dr Sanghera we had again discussed whether surgery was appropriate and this option had been discussed at an MDT meeting. Mr Kay, the neurosurgeon, said he could remove the active part of the tumour (or at least the active bit we can see on the scan).The opinion of the team was that surgery would not improve Deb's prognosis but may have some benefits in reducing the mass effect from the tumour and oedema (fluid around the tumour) There are risks from surgery and the balance of opinion thought that while Deb was responding well to the temozolomide treatment surgery was not the best option. However Deb and I are to have a meeting with Mr Kay to discuss the issue.
Steroids
Following the last appointment with Dr Sanghera, Deb dropped her steroid dose from 3 mg per day to 2 mg. After 10 days to 2 weeks she found she was suffering from increasing dizziness and after discussion with the clinical nurse specialist went back up to 3 mg. This seems to be about the right level for her. I asked if oedema could be seen on the scan (the tumour creates lots of fluid in the brain) and if so could we use the scan to monitor the effectiveness of the steroid dose. Dr Sanghera showed us another view of the scan which clearly showed the oedema around the mass of the tumour but Deb's symptoms are a more reliable way of deciding what dose of steroids is appropriate.
Drug trials
Following discussion of drug trials at the Conference we raised this with Dr Sanghera. The only trial currently ongoing that could have been relevant is the 'Regal' study (which is using a new drug cediramib with lomustine) but this is used when a tumour has returned after initial treatment and not appropriate for Deb.
Chemotherapy
I asked how long Deb could continue on the chemotherapy? Dr Sanghera said Deb was tolerating the drug well and we would continue with the continuous dose until it was obvious it was no longer effective. In the long term (12 - 18 months) chemotherapy can have adverse effects on the bone marrow and we may have to stop the treatment if this becomes a factor.
Everything continues as before. Next appointment we may see a Dr Sheriff as Dr Sanghera is away. Next MRI scan is due in 2 months but a longer period (3 months) between scans may be considered if tumour continues to remain stable.
Monday, 13 July 2009
7 - 8 July 2009 Brain Tumour UK Annual Conference
On 7-8 July Deb and I attended the Brain Tumour UK Annual Conference held in association with University Hospital Birmingham. The conference which took place at the Abbey Hotel and Country Club, Redditch, was aimed at brain tumour sufferers, their families and friends. I don't intend to write in detail about the conference programme - if you want to find out more the conference presentations will be on the Brain Tumour UK website in a few weeks (http://www.braintumouruk.org.uk/index.htm). The conference included sessions on the
- identification of tumours (it is often difficult to identify the grade and type of tumour from the biopsy. In a recent study a number of neuropathologists were asked to identify tumours from a set of samples. There was only agreement in 52% of the cases. This is a difficult and complex area and the results are very subjective. However Deb's tumour, the GBM IV, is easy to identify, and not one where there is doubt.)
- current NHS treatment (the current standards are defined in the NICE guidance on Cancer Services - Improving Outcomes for People with Brain and Other CNS Tumours. See http://www.nice.org.uk/nicemedia/pdf/CSG_brain_manual.pdf. This guidance requires specialist clinics to be set up, decisions on treatment to be made by a multi-disciplinary team and the use of Specialist Clinical Oncology Nurses. Deb's treatment is fully in line with the guidance but according to others at the conference there are variations in practice across the country.)
- sessions on the latest research into brain tumour treatment, chemotherapy drugs and clinical trials currently ongoing.
It was along and tiring 2 days but well worth it. Some of the things I liked about the conference:
1 The concept of a conference which allows patients and carers to get together with professional staff in a non-medical environment and talk informally about the disease is an excellent idea. When you see your consultant at hospital they are always running late and don't have time to discuss general issues. You could do this at the conference. And because you are not talking specifically about you it is a good venue to discuss sensitive issues like palliative care and end of life planning. If other types of cancer and serious illness don't have these types of conferences - they should.
2 The speakers at the conference concentrated on the scientific method. Drugs and technologies which have been proved by peer-reviewed scientifically based research to improve outcomes. I like this. Not a foot rubbing, crystal gazing herbalist in sight. When I was at school I remember kids with braces on their legs because of the effects of polio, I was seriously ill with whooping cough, my mother nearly died from diphtheria. All diseases which have been eradicated by the application of science. Now we seem to want whatever is new - irrespective of what it costs or whether it has been through clinical trials. The attitude is: if it is available I should have it. And of course the drug companies encourage this. Its wrong. We must stick with rigorous scientific methods of evaluation for new treatments.
3 I learnt a lot from the sessions on new developments in chemotherapy for treatment of brain tumours. Research is being carried out into the molecular basis of cancer and has shown how the chromosomes in a glioma cancer cell are damaged and mutated. New treatments will target the pathways within each cell that allow the disease to take hold. In the future people with brain tumours will have their DNA analysed and will then be provided with a drug designed specifically for their tumour. The stuff of miracles.
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