Mr Kay started by asking Deb what she understood the current position to be. Deb explained that she thought, following the review of her case at the Multidisciplinary Team Meeting last Tuesday, Mr Kay was to re-examine the MRI scans and make a decision as to whether surgery was an option. Mr Kay said that it wasn't quite like that. He would take us through the scans, describe what could be done and then Deb had to make the decision.
The Scan showed not only the grade IV parts of the tumour we had been looking at previously, but also some further high grade areas in other parts of the tumour (this was new information to us). Mr Kay showed us what part of the tumour he could remove and explained that he would insert Gliadel Wafers into the cavity left by the tumour. If we went ahead he would scan Deb next week and operate the week after. He said the decision needed to be made now. If no action was taken the tumour would look dramatically worse in a month or so and surgery would no longer be an option. He said this was a serious situation and options were limited. Deb was between "a rock and a hard place".
Mr Kay described the risks associated with Brain surgery. The tumour is close to major blood vessels and nerves and in the worst case Deb could lose speech, movement or bladder control (that's nothing new!!). He emphasised these risks were very low. He was not worried about the operation but more concerned about the effects of the Gliadel Wafers which could react with the brain. Also the wafers would be close to the ventricles in the brain which contain cerebral
fluid. If the chemotherapy leaked into this fluid it would be of concern.
The positive factors for carrying out the operation were that the tumour is in the non-dominant side of Deb's brain. Deb is young and has responded well to the Temozolomide and there are other chemotherapy treatments that could be used when the tumour re-occurs.
Mr Kay expects the operation to last about 4 hours if everything goes well. Deb would spend 5 days in hospital. She would have a scary haircut and a big scar. During the operation, and for a time afterwards her steroid dose would go up but hopefully this would be reduced back to her current level. In fact, the operation should improve the steroid position and Deb may be able to get off them altogether.
To reach the tumour Mr Kay would have to go through healthy parts of the brain but he did not consider this to be a problem.
Deb has seen Mr Kay twice before to discuss surgery. On both occasions he has said it was not a good option. I asked him what made it better now. He said that at the current time it was the
best way of dealing with tumour progression and was an effective method of delivering high doses of chemotherapy direct to the tumour site.
Deb has considered the position and decided to go ahead with the operation. The only drawback is that the proposed date clashes with Sam's graduation so Deb will discuss with Claire, Clinical Nurse Specialist if there are any issues with delaying it for a week.
Tuesday 29 June 2010
Tuesday 22 June 2010
22 June 2010 - Phone call from Claire Goddard, Clinical Nurse Specialist
Claire called to discuss what was said at the MDT Meeting. The imagining results were reviewed. It was agreed that although the lower grade components of the tumour had remained the same size, there have been subtle changes to the higher grade areas of the tumour. The meeting had discussed surgery as an option for further treatment. Mr Kay, the Neurosurgeon we have seen previously, said he needed to study the scan results in detail to decide whether surgery was feasible. If so, he would remove as much of the tumour as he could and insert Gliadel Wafers in the part of the tumour he could not remove.
Wafer implants are a new way of giving chemotherapy for brain tumours. The wafer is made of gel that contains the chemotherapy drug. During brain surgery, the doctor places up to 8 wafers in the space where the tumour was. Over the next few days, the wafers slowly release a chemotherapy drug called carmustine (BCNU) into this area. The wafers dissolve within 2-3 weeks after being put in.
If Mr Kay says surgery is a possible option, Deb has to make the decision that she wants to proceed. Not an easy decision!!!!
Wafer implants are a new way of giving chemotherapy for brain tumours. The wafer is made of gel that contains the chemotherapy drug. During brain surgery, the doctor places up to 8 wafers in the space where the tumour was. Over the next few days, the wafers slowly release a chemotherapy drug called carmustine (BCNU) into this area. The wafers dissolve within 2-3 weeks after being put in.
If Mr Kay says surgery is a possible option, Deb has to make the decision that she wants to proceed. Not an easy decision!!!!
21 June 2010 - Appointment at Queen Elizabeth Hospital
Sorry I have not updated the blog for a while. Since the last post Deb has seen Dr Sanghera for a routine appointment (24th May) and has continued with the continuous chemotherapy. During this time Deb has had an increasing number of dizzy spells and bouts of feeling sick. She has also suffered from a number of headaches.
On the 18th June Deb had the 10th MRI scan of her tumour since her radiotherapy treatment.
The scan took place at the New Queen Elizabeth Hospital Birmingham. The new scanner was twice as powerful as the old scanner (3 tesla - a unit of magnetic flux density - instead of 1.5).
Deb saw Dr Sanghera and Claire Goddard (Clinical Nurse Specialist) on Monday 21st June at the 'old' QE to have blood tests and get the results of the scan. The results of the blood tests were good with all readings within the normal range. The results of the scan were not so good. The low grade parts of the tumour had stayed the same size but the higher grade elements (ie the white patches on the screen) had progressed. Dr Sanghera had measured the relevant parts of the tumour and although growth was slow it was still occurring. This news was disappointing as it meant that the tumour was not responding to the resumed chemotherapy treatment as hoped.
Dr Sanghera said Deb's case would be discussed at the Multidisciplinary Team Meeting tomorrow (Tuesday 22nd June) to get a second opinion on the scan findings and to consider further options including surgery and a change to the chemotherapy regime. (The most likely option is PCV which consists of 3 different drugs - Procarbazine/Lomustine(CCNU)/Vincristine. One of these drugs is delivered intravenously and all can have significant side effects including lower blood cell counts, feeling and being sick, flu like symptoms and CNS effects (ie depression, anxiety).
Claire is to ring tomorrow after the meeting to tell us what was discussed. If it is decided not to make a change, Deb is to continue with the temozolomide for a further month and Dr Sanghera prescribed more tablets. Next scan is due in 2 months time.
This meeting was different from previous meetings we have had with Dr Sanghera. Normally they are light-hearted and informal. This meeting was different; the tone was sombre and serious. This as much as what was said made us realise that the options are running out.
On the 18th June Deb had the 10th MRI scan of her tumour since her radiotherapy treatment.
The scan took place at the New Queen Elizabeth Hospital Birmingham. The new scanner was twice as powerful as the old scanner (3 tesla - a unit of magnetic flux density - instead of 1.5).
Deb saw Dr Sanghera and Claire Goddard (Clinical Nurse Specialist) on Monday 21st June at the 'old' QE to have blood tests and get the results of the scan. The results of the blood tests were good with all readings within the normal range. The results of the scan were not so good. The low grade parts of the tumour had stayed the same size but the higher grade elements (ie the white patches on the screen) had progressed. Dr Sanghera had measured the relevant parts of the tumour and although growth was slow it was still occurring. This news was disappointing as it meant that the tumour was not responding to the resumed chemotherapy treatment as hoped.
Dr Sanghera said Deb's case would be discussed at the Multidisciplinary Team Meeting tomorrow (Tuesday 22nd June) to get a second opinion on the scan findings and to consider further options including surgery and a change to the chemotherapy regime. (The most likely option is PCV which consists of 3 different drugs - Procarbazine/Lomustine(CCNU)/Vincristine. One of these drugs is delivered intravenously and all can have significant side effects including lower blood cell counts, feeling and being sick, flu like symptoms and CNS effects (ie depression, anxiety).
Claire is to ring tomorrow after the meeting to tell us what was discussed. If it is decided not to make a change, Deb is to continue with the temozolomide for a further month and Dr Sanghera prescribed more tablets. Next scan is due in 2 months time.
This meeting was different from previous meetings we have had with Dr Sanghera. Normally they are light-hearted and informal. This meeting was different; the tone was sombre and serious. This as much as what was said made us realise that the options are running out.
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