15 November 2010 - Cancer Centre, Old QE Hospital

Deb has been remarkably well during the six weeks of her first chemotherapy cycle on PCV. Initially she was very tired but she has not had any serious side effects from the treatment and especially in the weeks when she was not taking the drug she has felt good. She has had some dizzy spells (and these seem to be more frequent) but generally she has been very well.

Deb had an appointment today at the Cancer Centre. She had her usual blood test and the results were all good. (The red blood cell count was a little below the normal range but not enough to cause concern.) We saw Dr Meade - Dr Sanghera's new registrar. We discussed Deb's health over the last six weeks and reviewed the blood test results. It was agreed that Deb would start her second cycle of the PCV chemotherapy tomorrow.

Deb asked about reducing her steroids but the doctor thought she should stay on the same dose (4.0mg per day) until the full effects of the chemo were known. The registrar will also book Deb in for an MRI scan to take place around the end of December.

Not much more to say. No news is good news they say.

5 October 2010 - Chemotherapy Unit, QE Hospital

Today Deb had her first session of the new chemotherapy - PCV. I write this at 3:00pm and Deb is upstairs in bed asleep. I guess the tiredness and fatigue caused by the chemo has already kicked in.

This morning Deb first of all had a meeting with a nurse in the Chemotherapy Unit at the Cancer Centre,QE Hospital. The nurse explained the method of treatment, the possible side effects and provided Deb with a card giving 24 hour contact numbers in case there are problems.

The chemotherapy is a combination of 3 drugs. The first, Vincristine (the 'V' in PCV) was administered at the Cancer Centre by intravenous drip. This took about 10 minutes and the nurse stayed with Deb throughout the treatment and periodically checked the drug was still going directly into the vein. (Disturbingly the bag with the chemo in had a sign on it saying 'Fatal if taken other than intravenously'.) We then went to the pharmacy and picked up the other drugs to take home:

Lomustine (or CCNU, the 'C' of PCV). 4x4mg tablets to be taken this evening.
Procarbazine (the 'P' of PCV). One 50mg tablet in the evening and 2x50mg tablets in the morning for 10 days.
Ondansetron. Anti-nausea tablet to be taken half an hour before the lomustine and 12 hours after.
Domperidone. Anti-nausea tablets to be taken as required.
Senna laxative tablets - presumably one (or all) of the chemotherapy drugs can cause constipation.

So far so good. Lets see how this goes.

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).

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.

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.

11 August 2010 - Update

8 August 2010 - Deb showing off her scar (2 weeks after the operation)

Sorry I have not posted a blog for a while. I changed my broadband provider (a big mistake) and have not been able to access the Internet for 2 weeks.

On 2 August, Deb had her scalp clips removed (about 30 of them) by a nurse at the GP practice. This process looked very painful to a mere onlooker (the nurse used a tool just like a staple remover) but Deb said it wasn't too bad. The wound looked good; no redness or swelling and healing well.

Deb has rung the Clinical Nurse Specialists (Fred and Claire) on the last two Wednesdays. It has been agreed that she will now see both Mr Kay (surgeon) and Dr Sanghera (oncologist) on the same day; 31st August (Mr Kay first). Before then Deb will have an MRI scan (date to be confirmed).

Deb has continued the reduction in her steroid dose. She is now on 8mg per day. She will reduce to 6mg and then 4mg in the next two weeks. She will then stay on 4mg until we see Dr Sanghera. The steroids have caused their usual side effects. In particular Deb's face has swollen up, she is more jittery and anxious and is not sleeping so well.

As far as we can tell, Deb has not had any side effects from the gliadel wafers. I think, apart from the steroid side effects, her health has improved. Since the operation she has not had any dizzy spells, no nausea and less headaches. We are anxious to see the post op MRI scan and hope it confirms that the chemotherapy from the gliadel wafers has had a significant effect on the tumour.

28 July 2010 - Update

Deb is doing really well. She has been tired and has rested both morning and afternoon. But apart from that seems to be exactly as she was before the operation. (To give an example: she has started to worry about buying and sending birthday cards. I must admit that birthday cards do not figure high on my list of priorities even when I am well but surely they would be among the first thing you would stop thinking about if feeling poorly.)

Fred Berki, Clinical Nurse Specialist Neuro Oncology, following a conversation with Dr Sanghera, Consultant Oncologist, rang to discuss Deb's treatment post operation.

1 Deb will now not see Dr Sanghera on Monday 2 August. Fred sees little point in seeing Dr Sanghera so soon. An appointment will be made for 6 weeks time.

2 Deb will have an MRI scan in 4 weeks. This will provide a baseline picture of the situation post operation.

3. The reduction in dosage for steroids given by the ward is too rapid a drop. Deb should decrease her current dose of 12mg per day by 2mg each week until she reaches a dose of 4mg per day. Deb should stay on the dose of 4 mg until advised by Dr Sanghera. The slower reduction is in case of brain swelling following the insertion of gliadel wafers.

4. Deb or I should ring Fred or Claire each week (Wednesday, midday) to keep them advised of Deb's progress.

5. Deb needs to keep a watch on the wound if there is any swelling, redness or soreness she is to contact the hospital ward direct.

6. Deb should not have any direct side effects from the gliadel wafers (they contain a chemotherapy drug called carmustine) but the wafers can cause some swelling or infection inside the brain. Hence the need for a slow steroid reduction.

25 July 2010 - At home

Deb at home today after her discharge from hospital


Yesterday Deb saw a Dr Roberts who confirmed she would be discharged today (Sunday). The nurses removed the large bandage to leave a smaller dressing just covering her head wound. The discharge letter was written and signed so all that had to be done today was to pick up her medication and leave.

I arrived about 11:30 but although all medication had been obtained from the pharmacy, we still had to wait an hour and a half for a doctor to sign the labels on the medicine to say it was correct. Why is it so difficult to get out of hospital? You would think they would want the bed available as soon as possible. I understand that some responsible person has to check that the drugs are correct before they are issued but you would think that a staff nurse or somebody on the ward could do that.

Deb is still on 16mg of dexamethazone per day. Over the next few days this dose will be reduced to 2mg per day (12mg for 3 days, 8mg for 3 days, 4mg for 3 days). Deb has also been prescribed the anti-convulsant drug Phenytoin to be taken each day before going to bed. All other medication continues as before.

Her scalp clips are due to come out 10 days after the operation. (They sent her home with a special tool to do this - something like an office staple remover). The GP practice could do the removal but as we are at the hospital on Monday 2 August to see Dr Sanghera, Deb will go back to the ward and the nurses there will do it.

Mr Kay will see Deb as an outpatient in 6 weeks time.

It was good to have Deb home again. She slept most of the afternoon and has promised that she will take it easy for the next week or two. She says she does not have a headache but the hospital have given her some extra strength codeine as well as paracetamol and told her to take these regularly.

Time for us all to rest and recover I think. My love to friends and family that have sent messages of support over the last week. Thank you all.

23 July 2010 - QE Hospital

Deb with her bandage - today - 24 hours after her operation - taken with Sam's IPhone

I went to see Deb this afternoon (Kate also turned up having been given the afternoon off work ) and then during the evening visiting with Sam & Kate. All Deb's tubes have been removed including the catheter. She had got up and has been walking to the toilet.

Mr Kay had visited and was pleased with her progress. He told her if everything went well she would be discharged on Sunday. Fred, Clinical Nurse Specialist had also been to see her. He said they would let things settle down for a week and arrange for Doctor Sanghera, Oncologist, to see Deb in his clinic on 2 August. Deb had been wrong about her new dosage of steroid; she is in fact having 4mg, 4 times a day ie 16mg in total. This was the same amount they started her on when she was first diagnosed. This high level will only carry on for a short while and will be reviewed at the appointments with Dr Sanghera. Fred is hopeful she may be able to get off them altogether.

Tomorrow the nurses on the ward will change her bandage. the new one will be a lot smaller. She is very red in the face but her temperature is normal. This is a side effect from the steroids.

Deb said her head felt more compressed but her headache was not as bad. The nurses had stopped giving her morphine and she was now only on paracetamol. She did feel very tired. She has not slept much for 2 days. It is not helped by the man in the next bed continuously talking to himself. If possible they will move Deb to a quieter ward tonight.

She looks good doesn't she?

22 July 2010 - QE Hospital (Evening)

The hospital called at about 3:30pm to say that Deb was out of theatre and everything had gone well. Sam, Kate and I arrived at the hospital about 4:00. Deb was sitting up in bed looking very well. She was not in the Critical Care Unit but back on Ward East Lower B in an observation unit. She had a large bandage round her head and was being given oxygen from a tube to her nose but was sitting up smiling. She was coherent and apart from some confusion over the length of time she had been in surgery (about 5.5 hours) was talking sense. She had been fitted with a catheter but all of the other lines had been removed (they had not used the central line into her jugular.)

While we were there Mr Kay, the surgeon came in. He emphasised how well the operation had gone. He had removed as much of the tumour as he could and inserted the gliadel wafers. He wanted Deb to get up tomorrow and thought she may be able to go home after 2 or 3 days. She should see her GP about getting the staples removed from her head.

Deb was given some oral morphine for a headache. We left after about an hour so she could sleep. I plan to call in after work tomorrow morning.

I feel very relieved. This is really good outcome. Mr Kay may feel that the operation was routine but to be awake and smiling after 5 hours on a table with someone cutting lumps out of your brain seems marvellous to me.

22 July 2010 - QE Hospital (Morning)

As I write this -2:15pm on Thursday 22 August - Deb is still in theatre. I have just rung the Critical Care Unit to see if she was back from surgery and was told no and to ring back in a couple of hours. I need something to do to fill the time.

I arrived at the hospital at about 08:15 this morning. During the night she had seen the SHO (I guy called Lawrence who went to school with Adam Darcy. I don't know what's worse the fact that he is the same age as our son or that he is a friend of Adam's). He arranged for the cross matching of blood. In the morning, before I arrived Deb had seen the Registrar and had signed another consent form. On the form under the heading 'Name of Procedure' it said 'brain lab guided craniectomy and debaulking of SOL (?) + insertion of gliadel wafers'. He had told Deb that they hope to remove about 90% of the tumour. Under the heading 'Risks' the form said 'infection, hemorrhage, stroke, wound breakdown, CSF leak, failure of insertion of gliadel wafers.'

Deb had been given a dose of 4mg of steroids (dexamethazone; her previous dose was 0.4mg) and given 4 anti-epileptic tablets. While I was there the anaesthetist for the operation arrived. She seemed thorough and was concerned that Deb was taking beta blockers to prevent heart palpitations. She said they would have to contact Good Hope Hospital to establish what the heart problem was before they could operate. She also said: 1) Deb will go into the Critical Care Unit after the operation. 2) Deb will have a catheter inserted so she would not have to get up for the toilet after the operation. 3)They would put a special line into her arm to continuously measure her blood pressure (there can be severe swings of blood pressure during brain surgery) 4) They would probably put a line into the jugular vein in her neck to monitor blood fluids. 5) That when Deb wakes up she will feel serious pressure pain in her head (for this they will give her morphine) and 'moderate' pain from the skull wound.

We also met a nurse who introduced herself as the first person Deb would see when see came round. Deb had another ECG (we guess this was because they had not been able to get any sense out of Good Hope and they just wanted to check before starting the operation). At about 10:10 they took her into theatre. I kissed her and said I would see her later and watched as she was pushed through double doors with a notice saying 'no public admittance past this point'.

Will write more later.

21 July 2010 - QE Hospital

OK not much to tell. Deb rang the hospital at 12 and was told she didn't need to come in until 7.30 pm. So we had another afternoon at home - walked the dog in the park, had a pizza - that sort of thing. Deb was admitted to the hospital in the evening. She is in Ward East Lower B, in a four bedded room. Not a good view - brick walls and air conditioning units. As usual for hospital it seemed very hot and stuffy. A nurse filled in the forms, took her blood pressure, temperature etc. The Senior House Officer will be round later to see Deb and maybe take some blood to cross match for the operation tomorrow. I will return to the hospital in the morning so I am there when Mr Kay sees Deb about 08:30 tomorrow. Deb was looking good when I left, drinking a cup of tea.

20 July 2010 - QE Hospital

The day before Deb goes into the QE for her craniotomy. We visited the hospital today for Deb to have an MRI scan and have blood tests carried out prior to her surgery. The scan results will be used by the surgeon Mr Kay to pinpoint the precise area in the brain he needs to remove (computer assisted stereotactic surgery). Deb has to ring at noon tomorrow to see if there is a bed available. She will then be admitted and the operation carried out on Thursday.

As you can imagine we are all a bit tense. (No more than a bit tense - bloody worried I think just about covers it). But we have all been heartened by the love and support from all of our friends and family. If good wishes count for anything then Deb will sail through this operation.

Thank you all. As you know I do not believe in a divine power but I do have faith in Mr Kay. Here's hoping his years of training and practise, knowledge of medicine and the structures of the brain and the wealth of experience he has gained from carrying out similar operations are all used to good effect on Thursday. I will try to update the blog daily over the next week or so.

Chris

16 July 2010 - Seafront, Scarborough

Deb and Sam on the day of his graduation from University of Hull at Scarborough

Dad and Sam on graduation day

29th June 2010 - Meeting with Mr Kay, Neurosurgeon, QE Hospital

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.

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!!!!

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.

26 April 2010 - Appointment at QE Hospital

On 15 April, Deb had the 9th MRI scan of her tumour since her radiotherapy treatment. This was about 2 months since the last scan (9 February) and 6 weeks since Deb stopped her chemotherapy treatment. We again saw Dr Sanghera, Consultant Oncologist and Fred Berki, Clinical Nurse Specialist.

Scan Result

Dr Sanghera showed the result of the latest scan on the computer. The grade iv part of the tumour had definitely increased in size. It was difficult to judge by exactly how much the tumour had grown but you could definitely see that the bright, active part of the tumour was bigger. This was not good news. I asked about prognosis and Dr Sanghera said we should not worry about that yet. This result should not stop us doing anything we wanted to do. I think he meant it in a positive way. That although there had been a deterioration in the tumour we should not let that put us off doing anything we wanted to do. But to me it sounded like he was saying you should do it now because you might not get a chance to later. Fred could see I was concerned that things were worse than they were letting on and said that they would not hide anything from us and would tell if the news was really bad. At the moment the news was not really bad; just not good.

Deb and I both felt cast down by this news. (Deb had been so well lately, and with the reduction in her steroids she seemed to be slowly returning to something like her old self).


Chemotherapy

Because of the progression of the cancer, Dr Sanghera decided to put Deb back on to her chemotherapy (temozolomide). She will return to her previous regime of a continuous daily dose of 100mg. Deb had her blood tested and the results were good and the chemotherapy will start immediately.

Steroids

Over the last 6 weeks, Deb has reduced her steroid dosage from 1 mg per day of dexamethasone to 0.4 mg. It was agreed that Deb will stay on the current level and not reduce any further.


The next appointment to see Dr Sanghera is in one month on 24 May (the day after the second anniversary of Deb's diagnosis). Deb's next scan will be in 2 months time.

15 March 2010 - Appointment at QE Hospital

Deb walking along the Left Bank of the Seine during our long weekend in Paris

Visited QE on 15 March for blood tests and monthly appointment with oncologist. Saw Dr Sanghera. Blood test results were excellent (all within the normal range).

Chemotherapy

As discussed at last visit it was decided that Deb should stop taking the chemotherapy (temozolomide). Although we were expecting this it was still unsettling. Deb will no longer need to go to the Cancer Centre once a month and have blood tests. She will now only see Dr Sanghera once every 3 months after her MRI scan. She will no longer need to take her preventative antibiotic.

The stopping of chemotherapy seems such a big step. Isn't it this drug which has been holding the tumour in check all this time? I asked Dr Sanghera if this was good news or bad news. He said it is good news. A year ago, when the tumour looked as though it was progressing , things looked really bad. At that time Deb's prognosis was poor. But here we are a year later, Deb has done really well and is looking good. We should be positive. I still feel anxious. I couldn't get to sleep after the hospital visit. Dark thoughts about what the future holds.

Steroids

At the last visit Deb was on a dose of dexamethasone of 1 mg per day. Before we went to Paris she reduced to 0.5mg. This reduction caused her to have: 1) extreme fatigue and spend a lot of time in bed, 2) increased dizzy spells, 3) feeling of nausea for most of the day. She therefore went back up to 1mg and these symptoms largely disappeared. I read on the Internet that if you take dexamethasone for more than 2 weeks (Deb has been on it for nearly 2 years) it knocks out the body's own system for producing steroids. (The thyroid gland produces a natural steroid which is essential to ensure adequate activity levels in the body. 0.75 mg per day of dexamethasone is approximately equivalent to the level of steroid produced by the body.) To allow time for Deb's own glands to kick in it was agreed that she should try reducing her steroid dose more slowly. So she will reduce by 0.2mg per day every 10 days. We will monitor the position.

MRI scan of back

Dr Sanghera said he had seen the report on the scan of Deb's back and that everything was OK.

Next visit to QE is on 15 April for another MRI scan of Deb's head. We shall see Dr Sanghera the week after on the 26 April.

15 February 2010 - Appointment at QE Hospital

On 9 February Deb had her 8 MRI scan since completing her radiotherapy treatment. This was just under 2 months since her last scan on 14 December. The scan was originally arranged to look at Deb's back (the doctor had thought that Deb's back pain may be due to osteoporosis). When we got there we were told that they would also scan her brain. On the 15 February Deb had her blood test and we saw Dr Sanghera.

Scan result

The result was good. The grade IV part of the tumour was about the same size as at the last scan. We compared the latest scan with the scan from a year ago and the overall bulk of the tumour is definitely significantly reduced.

Chemotherapy

On the 9 Feb 2009, Dr Sanghera thought that Deb's tumour was starting to progress and her chemotherapy regime was changed. So Deb has been on continuous chemotherapy for exactly a year. (+ 4 months of monthly cycles). Dr Sanghera was concerned about the time that Deb has been taking the chemotherapy drug (temozolomide). Although Deb is tolerating the drug well, it will cause long term damage to the bone marrow and there will be a build up of other toxic effects. This may mean that Deb will not be able to take the drug later on when she really needs it. The control of the grade IV parts of the tumour and the reduction in overall size may not be due to the continuing action of the chemotherapy but could have been caused by the radiotherapy and the initial chemotherapy treatment. After a discussion it was agreed that Deb would continue with the chemotherapy for now but we will stop soon (Dr Sanghera does not want to go beyond 18 months with the treatment).

Steroids

Over the last month, Deb has reduced from 2mg per day to 1mg per day. She did have one or two headaches and has felt more dizzy but now seems to have settled down. With the agreement of the doctor she will now try to slowly reduce further to 0.5mg per day and maybe give them up completely.

Back scan

We did not get the results of the back scan. This will be looked at separately by a specialist in this area and a written report will be sent to us.

Flynn has gone - for good this time!

Bertie - on his own in Sutton Park






On 29 January, I had a phone call from the Dogs trust at Evesham (I had put Flynn on their waiting list) asking if I still wanted to rehome my dog. I was uncertain what to do and asked if I could have a few days to discuss it with the family. Over the weekend the dogs fought several times. Once when I was still in bed and Deb couldn't separate them. They both had blood on their coats. This made up our minds and Deb and I took Flynn to the Trust on 3 February. As we walked him down the long drive to the kennels he was jumping about without a care in the world. As we handed his lead over to the handler he was wagging his tail. As he was taken down to his kennel he looked back but still had no inkling he would not see us again. It felt so cruel but it was the right decision. Deb and I are happier, the cages are gone, we don't have to constantly close doors behind us or worry about what the dogs are doing. Bertie is happier; he gets all the attention, has the freedom of the house and doesn't have to worry about his ear being chewed off. And perhaps Flynn is happier. Perhaps. But I still feel I have let him down.

18 January 2010 - Appointment at QE Hospital

Sutton Park in the snow

Visited QE on 18th January for routine monthly appointment with oncologist. (Appointment was originally on 11th but was postponed for a week. Deb was therefore without chemotherapy for a week. When she queried this, she was told it did not matter if she missed a week! This sort of remark undermines your confidence in the treatment.) We saw Dr Petit again (Dr Sanghera's registrar). Dr Sanghera was on an 'induction course'. He's already been at the hospital for over a year and then has to go on a mandatory 3 week course to ensure he is fully informed of the hospital trust's policies.

Deb's blood test results were good and she was given another month's supply of chemotherapy.

Deb asked Dr Petit if she could further reduce her steroid dose. Dr Petit agreed that she could reduce to 1.5 mg (from 2 mg) for 2 weeks and if she felt OK could then reduce to 1.0 mg. If Deb starts to get any serious headaches she is to contact Fred or Claire and put the steroid dose back up. If this reduction is successful Deb may be referred to an endocrinologist to see if she can transfer from her current steroid (dexamethazone) to hydrocortisone. Hydrocortisone is not as effective as dexamethazone but is closer to the natural steroid produced by the body and may have less side effects.

Deb has been suffering from some acute back pain. The doctor was concerned this may be due to osteoporosis of bones in the spine and is to arrange for Deb to have an MRI scan of her back.

Also discussed severe gastric pain Deb gets from taking osteoporosis tablets. Deb had already discussed this with our GP said she should stop the treatment for a few weeks and has given her different medication to try and reduce the problem. Dr Petit said Deb should double the dose of her gastro-resistant medication (taken with the steroids) if the problem persists.

After seeing the doctor, we stayed at the hospital for a meeting of the West Midlands Brain Tumour Support group. This was our first meeting at the hospital and we did have a couple of new members turn up. Our guest speaker talked about laughter therapy. We had to stand in a circle and do various 'laughs'. This is supposed to make you feel better (I'd go along with that) and boost your immune system (a dubious claim if you ask me).

Flynn is back

Dogs in the park

Last time I wrote about Flynn, he was living a life of luxury with Brenda. That lasted about a week. Brenda found she was unable to look after him properly. She couldn't take him for walks and asked if we could take him back. On Flynn's return, the dogs fought even more. I couldn't even take them into the park without them attacking one another. Then, after about 2 weeks something changed. They settled down a bit. They still occasionally try to kill one another but in between life is nearly normal. Perhaps we will be able to keep both of them after all.