Monday, 27 September 2010
27 September 2010 - Meeting with Dr Sanghera, Cancer Centre, QE Hospital
At the meeting, Deb told Dr Sanghera that she was going to proceed with the PCV chemotherapy. Dr Sanghera again went through what was involved in the treatment and the possible side effects. Deb signed a consent form and had a blood test (the results were good). The first cycle of the chemotherapy will start some time next week (the hospital will call us to confirm the date). It is likely that Deb will be called into the Cancer Centre before the start of the chemotherapy to familiarise with the procedure. We will now see Dr Sanghera every 3 weeks (at the beginning and half way through each cycle of the chemotherapy). The next appointment been made for Monday 25 October . For the time being Deb's steroid dosage will remain the same (4mg per day).
Tuesday, 21 September 2010
21st September 2010 - Meeting with Dr Sanghera, Neurosciences Outpatients Department, QE Hospital
DEFINITELY NOT GOOD NEWS!!
Saw Dr Sanghera to discuss the results of the last scan and possible future treatment. After discussing how Deb had been feeling since the operation we looked at the scans (still not understanding exactly what we're looking at). It is clear that the operation has reduced the overall size of the tumour but the Grade IV active parts are continuing to progress. The Gliadel Wafers inserted into the tumour during the operation have controlled tumour growth to some extent, and in this respect the operation was a success. However, the continuing growth of the tumour means we need to consider what can be done now.
Dr Sanghera thought that the best option was a course of PCV Chemotherapy (a combination of three drugs; Procarbazine, Lomustine (which is also known as CCNU)and Vincristine).
PCV chemotherapy is given to Deb as a day patient. Treatment involves an injection of vincristine (a colourless fluid) that takes about 5-10 mins to administer, a lomustine capsule (1 tablet), and procarbazine capsules which are taken daily for 10 days. After this course there is a rest period with no treatment for 32 days. This means that one cycle of PCV lasts for 6 weeks.
PCV is more aggressive than the the course of temozolomide chemotherapy that Deb had before and she is likely to experience more severe side effects. The most common being lowered resistance to infection, nausea, bruising, bleeding, anaemia, tiredness and feeling weak, numbness or tingling in hands/feet.
Dr Sanghera emphasised that PCV only had a 20-40% chance of effectiveness. Deb is well at the moment and he is reluctant to prescribe PCV if it makes her feel very ill with a chance that it might not be having much effect.
After discussing the issue Dr Sanghera gave Deb a week to go away and think about whether she wanted to go ahead with PCV or not. We have a further appointment with Dr Sanghera at the Cancer Centre next Monday.
After this meeting we met with Fred, (Macmillan Specialist Oncologist Nurse)he was more positive than Dr Sanghera about the chemotherapy. He said that people who responded well to Temozolomide also responded well to PCV. Deb had defied the odds to be so well for so long.
He did make us appreciate that we are now entering the final stages of Deb's illness. The decisions we have to make now are in regards to Deb's quality of life. Although no-one can put timescales on things, it seems likely that Deb has months rather than years.
Saw Dr Sanghera to discuss the results of the last scan and possible future treatment. After discussing how Deb had been feeling since the operation we looked at the scans (still not understanding exactly what we're looking at). It is clear that the operation has reduced the overall size of the tumour but the Grade IV active parts are continuing to progress. The Gliadel Wafers inserted into the tumour during the operation have controlled tumour growth to some extent, and in this respect the operation was a success. However, the continuing growth of the tumour means we need to consider what can be done now.
Dr Sanghera thought that the best option was a course of PCV Chemotherapy (a combination of three drugs; Procarbazine, Lomustine (which is also known as CCNU)and Vincristine).
PCV chemotherapy is given to Deb as a day patient. Treatment involves an injection of vincristine (a colourless fluid) that takes about 5-10 mins to administer, a lomustine capsule (1 tablet), and procarbazine capsules which are taken daily for 10 days. After this course there is a rest period with no treatment for 32 days. This means that one cycle of PCV lasts for 6 weeks.
PCV is more aggressive than the the course of temozolomide chemotherapy that Deb had before and she is likely to experience more severe side effects. The most common being lowered resistance to infection, nausea, bruising, bleeding, anaemia, tiredness and feeling weak, numbness or tingling in hands/feet.
Dr Sanghera emphasised that PCV only had a 20-40% chance of effectiveness. Deb is well at the moment and he is reluctant to prescribe PCV if it makes her feel very ill with a chance that it might not be having much effect.
After discussing the issue Dr Sanghera gave Deb a week to go away and think about whether she wanted to go ahead with PCV or not. We have a further appointment with Dr Sanghera at the Cancer Centre next Monday.
After this meeting we met with Fred, (Macmillan Specialist Oncologist Nurse)he was more positive than Dr Sanghera about the chemotherapy. He said that people who responded well to Temozolomide also responded well to PCV. Deb had defied the odds to be so well for so long.
He did make us appreciate that we are now entering the final stages of Deb's illness. The decisions we have to make now are in regards to Deb's quality of life. Although no-one can put timescales on things, it seems likely that Deb has months rather than years.
Tuesday, 14 September 2010
14th September 2010 - Meeting with Mr Kay, Neurosurgeon, QE Hospital
Deb's craniectomy was on 22 July and she was discharged from hospital on 25th July. Since then she has been good. Her feelings of nausea have gone and her bouts of dizziness have largely disappeared. She has not had any severe headaches. There have been difficulties with getting booked in for an MRI scan but eventually this took place on 9th September at the 'old' QE, 7 weeks after the operation.
On 14th September we saw Mr Kay, the Surgeon. He examined the scar and asked about Deb's health. We then had a look at the latest scan. The tumour still occupied about the same amount of space (or maybe seemed a bit larger) and there seemed to be more "active" areas. Mr Kay explained that he had removed tissue from the middle of the tumour and this space was still there but now full of water. He also showed us a version of the scan which showed up the oedema in the brain. This has greatly reduced since the operation. I asked whether the amount of active areas on the scan (ie high grade tumour) could be taken as an indication of the effectiveness of the gliadel wafers. Mr Kay said "we should not focus on the scan but on Deb's health which is very good". He explained that Deb would have been in a worse place if she had not had the operation. The operation had brought her some time before a decline in her health sets in.
I think Mr Kay thought I was being critical of his work (I wasn't, I was just trying to establish exactly what we were looking at on the scan) and he reiterated that he had removed as much of the tumour as he could but would not go near any major blood vessels in the brain or the ventricles containing CSF (Cerebral Spinal Fluid).
He did say that there was a possibility that the operation could be repeated if the circumstances warranted it e.g. if Deb had problems because of a localised development within the tumour he might be able to remove it. He also said that during the operation they had considered inserting a shunt to drain off CSF but the tumour had not closed up the connection to the ventricles and they had decided that a shunt was not needed.
He finished by saying "I know I haven't answered all of your questions but you should concentrate on the fact that Deb is in good health and to look forward to Christmas". He said he would not need to see Deb again but the need for surgery would be kept under review at MDT meetings.
I came out feeling dissatisfied. Was it good or bad news? The scan looked worse than pre-op with more active areas but Mr Kay did not want to talk about the scan and said we should concentrate on Deb's health. We see Dr Sanghera, Oncologist, next Tuesday 21st September and hopefully he will let us know more.
On 14th September we saw Mr Kay, the Surgeon. He examined the scar and asked about Deb's health. We then had a look at the latest scan. The tumour still occupied about the same amount of space (or maybe seemed a bit larger) and there seemed to be more "active" areas. Mr Kay explained that he had removed tissue from the middle of the tumour and this space was still there but now full of water. He also showed us a version of the scan which showed up the oedema in the brain. This has greatly reduced since the operation. I asked whether the amount of active areas on the scan (ie high grade tumour) could be taken as an indication of the effectiveness of the gliadel wafers. Mr Kay said "we should not focus on the scan but on Deb's health which is very good". He explained that Deb would have been in a worse place if she had not had the operation. The operation had brought her some time before a decline in her health sets in.
I think Mr Kay thought I was being critical of his work (I wasn't, I was just trying to establish exactly what we were looking at on the scan) and he reiterated that he had removed as much of the tumour as he could but would not go near any major blood vessels in the brain or the ventricles containing CSF (Cerebral Spinal Fluid).
He did say that there was a possibility that the operation could be repeated if the circumstances warranted it e.g. if Deb had problems because of a localised development within the tumour he might be able to remove it. He also said that during the operation they had considered inserting a shunt to drain off CSF but the tumour had not closed up the connection to the ventricles and they had decided that a shunt was not needed.
He finished by saying "I know I haven't answered all of your questions but you should concentrate on the fact that Deb is in good health and to look forward to Christmas". He said he would not need to see Deb again but the need for surgery would be kept under review at MDT meetings.
I came out feeling dissatisfied. Was it good or bad news? The scan looked worse than pre-op with more active areas but Mr Kay did not want to talk about the scan and said we should concentrate on Deb's health. We see Dr Sanghera, Oncologist, next Tuesday 21st September and hopefully he will let us know more.
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