29 November 2011 - Neurosciences Outpatients Department, New QE

Three months since the last post and Deb is still doing really well. Visited the new Queen Elizabeth Outpatients department today for an appointment with Dr Sanghera to review Deb's progress and get results of the last MRI scan. Outpatients at the new hospital is like an airport. You check in electronically on a touch screen and report to the first waiting room. You wait for your name to come up on another screen and you then move forward to a second waiting room where you sit until called to see the doctor. It seemed to work well even though I forgot my passport.


1) MRI Scan


Deb had her MRI scan (18th since RT) on 21 November. The scan results were excellent. There was no discernible sign of tumour growth. The tumour has now been stable since Deb stopped taking PCV chemotherapy at the end of May. In fact the tumour seems to have been stable with no signs of growth since Deb started the PCV at the beginning of the year. This is great news. I again asked Dr Sanghera why this had happened given that we could still see bright active areas on the scan. (these are areas with developed blood supplies to feed active tumour cells). He said we are not always sure what we are looking at on the scan: the bright areas could be due to some failure of blood vessels caused by radiotherapy or chemotherapy and perhaps were not all active tumour. He also explained that although Deb had been classified with a Glioblastoma Multiforme Grade IV, this classification covered a mixture of cell mutations. A typical GBM would stop responding to treatment after a short while but some (like Deb's) seem to respond better because of the cell type within the tumour. 


2) Seizures


Since we last saw Dr Sanghera Deb has had four 'fainting episodes'. Two on the 24 September (while we were at Patrick and Liz's wedding) and two in mid October. The last episode was more of a fit that a faint and occurred after Deb had started to reduce her anti-convulsant medication (phenytoin). These episodes were discussed at length and Dr Sanghera agreed that Deb should maintain her phenytoin dose at 300mg. He also arranged for Deb to have a blood test to monitor her phenytoin levels. 


3) Steroids


Although Deb has tolerated her steroid (dexamethazone) well. Dr S thought it appropriate for her to be referred to an endocrinologist for a Short Synacthen Test - a test to check the amount of cortisol (cortisol is a steroid hormone vital for good health) in your body. For more information see: http://www.patient.co.uk/health/Synacthen-Test.htm 


4) Next appointment


Next appointment  is set for Tuesday 28 February. MRI scan will take place before the appointment. We all feel we can now relax and enjoy a good Christmas.

The End of the Road

The intrepid riders at the finish line with Brighton Beach in the background.

'Do it for Charity' London to Brighton Cycle Ride - 11 September 2011

Dear All,

Many, many thanks for your support. I raised a total of £755 for Brain Tumour UK.

I did the ride with 7 friends and between us we have raised over £2000.

The ride was harder than I expected. It is 54 miles with several nasty hills (most of which I had to walk up part of the way) including 1) How Lane in Chipstead 2) Church Hill past Nutfield Marsh 3) Turners Hill and 4) The Ditchling Beacon. The Beacon is more like a cliff face than an actual road you can drive up but it is a really great feeling when you arrive at the top, see the sea sparkling in the distance and know it is all down hill from here.

We were really lucky with the weather. I spent the night before the ride in a camper van on a camp site in Crystal Palace and as I listened to the rain drumming on the roof I thought about the next day with trepidation. But it was bright and sunny the whole way. Apart from the hills, the traffic and dodging the other cyclists it was a great day.

We are already discussing what to do next year.

Once again, many thanks to you all.

Chris

LONDON TO BRIGHTON CYCLE 2011

Only 5 days to go.


I have kitted out my bike (tools, spares, drinks bottle, new pump etc.) I have sorted out the logistics. I have trained to a peak of fitness. Bring on Ditchling Beacon, I say.


Many thanks to all who have already made a donation. But if you haven't done so and would like to give to brain tumour research, just click on the link.


http://www.doitforcharity.com/ChrisE

6 September 2011 - Neuroscience Outpatient Department, Old QE

Deb on holiday - somewhere on the coastal path between Woolacombe and Mortehoe, North Devon

Since the last post Deb has been really well. Throughout the summer she has continued to lose weight (something which has pleased Deb very much) and has been very active. In fact she has been bored and looking for things to do. Even her dizzy spells have seemed less frequent recently.

Today saw Dr Sanghera to discuss result of latest MRI scan which Deb had on 25 August (her 17th since RT).

The news again was good. The tumour was about the same size as the last scan (30 June). So no discernible tumour growth in 2 months. Dr Sanghera said he had seen this before in some patients. The chemotherapy hits the tumour hard and causes a long term effect on tumour growth which continues even when there is no longer chemotherapy in the body. 

It was agreed that Deb would continue without chemo and the progress of the tumour would be monitored by scanning. The next scan will be in 2 months time. Next appointment to see Dr Sanghera is on 6 December at 10:30. 

We also reviewed the other drugs Deb is taking. It was agreed that Deb could be 'weaned off' phenytoin (this is an anti-convulsant drug. Deb has never fitted but was put on this as a precautionary measure after her debaulking surgery). Deb will also stop taking ranitidine (medication to stop acid reflux - a side effect of steroids). Steroid dose will remain the same (2mg per day).  Because Deb has been on steroids for over 3 years, Dr Sanghera recommended that Deb saw her GP for a review, for instance further bone scans may be appropriate. 

4 July 2011 - Cancer Centre, Old QEH

Deb in South Devon, May 2011


As days go, this was a good one. Because of the detrimental effects to her blood cell production Deb has not been taking any chemotherapy for 6 weeks. During this time she has been really well. She looks good, has lots of energy, wants to do things and is making plans. She does have dizzy spells which seem to be more frequent but are not prolonged and do not stop her from doing anything.

Today we visited the Cancer Centre for the usual blood tests and to get the results of the latest MRI scan which Deb had on 30 June (her 16th since RT).

The results of the blood tests were good. (WBC - 3.7, RBC - 2.1, PLT - 131 ). Platelet count continues to be reasonably high and Deb's bone marrow seems to have recovered from the chemotherapy.

We subsequently saw Dr Sanghera (together with Dr Connelly + a trainee + Claire + Fred + someone else - the room was jammed). We saw the results of the scan on the computer screen. This was good news. The tumour was about the same size as the last scan. I asked why the tumour was not growing, given that Deb had not been on chemo for the last 6 weeks. The doctor said this was due to residual effects of the cytotoxic drugs. The drugs disrupt cell division within the tumour and this effect continues for some time after you stop taking the chemotherapy.

It was agreed that Deb would not restart the chemotherapy for a while. We do not have to return to the hospital until Deb has a further scan in 2 months time when the position will be reviewed. Her steroid dose will remain the same (2mgs per day).

So hopefully Deb's good health will continue for the rest of the summer. We may even have a holiday.

Now only 69 days to go until the London to Brighton Cycle Ride (see blog entry for 22 May). Any more contributions would be very welcome. Go to:

www.doitforcharity.com/ChrisE


See you in 2 months time.

9 June 2011 - Cancer Centre, Old QEH

Visit to Cancer Centre for Deb to have a further blood test to monitor her progress with recovery of platelet production.

Deb's platelet counts since completing her 6th cycle of PCV chemotherapy :
(range in normal healthy adults is 140 - 440)

16.05.11 --- 43
23.05.11 --- 51
31.05.11 --- 68
09.06.11 --- 106

After having the blood test saw Claire (Macmillan nurse) who subsequently discussed the results with Dr Sanghera. Results are good. They show bone marrow is recovering and has not been wiped out completely by the chemotherapy.
It was agreed that no further blood tests were necessary until Deb sees Dr Sanghera on 4 July. At that meeting the results of Deb's next MRI scan (arranged for 30 June) and the continuation of the chemotherapy will be discussed.

Just a reminder, only 94 days to go until my London to Brighton Cycle Ride (see blog post for 22 May). Many, many thanks to all you kind people who have already sponsored me, If anyone else would like to make a contribution please go to:

http://www.doitforcharity.com/ChrisE

23 May 2011 - Cancer Centre, Old QEH

Deb's 52nd birthday and the third anniversary of her diagnosis.

Not a good birthday present. Returned to Cancer Centre to have a further blood test when we saw Dr Connolly.

Blood test results were not good. WBC = 3.0 (low), RBC = 2.77 (low), PLT = 51 (very low). So platelet count had only recovered very slightly during the week. On getting the results Dr Connolly consulted with Dr Sanghera who then came to see Deb. It was agreed that Deb would not proceed with the chemotherapy. The slow recovery of the production of blood cells indicates the chemotherapy has caused detrimental effects to the bone marrow and further treatment may wipe it out all together. Deb is to return to the Cancer Centre on a weekly basis for blood tests to monitor levels and establish that the cell production has recovered.

Chemotherapy will not be restarted for the time being but progress of the tumour will be monitored by scanning. Deb's next scan will be in about 6 weeks time. Following that decisions will be made about how to proceed.

Another slip down the greasy pole. Have we got to the end of the treatment options?

LONDON TO BRIGHTON CYCLE 2011

Brain tumours are nasty things. Malignant primary brain tumours take more years off the average person’s life than any other cancer. They are the most significant cause of cancer death amongst men under 45 and women under 35, and approximately 400 children are diagnosed with a primary brain tumour each year.

Scientific research into brain tumours is under-funded, both in relation to the number of people affected and the life-limiting nature of malignant tumours in particular. For example, in 2007-8, the Medical Research Council (MRC)invested less than £1 million in brain tumour research, compared to £14 million in leukaemia research. Yet brain tumours claim the lives of more children, and young men and women, than leukaemia.

Brain tumour charities are trying to redress this imbalance. To support them a group of friends and I (11 of us so far) are cycling from London to Brighton raising money for Brain Tumour UK. If you would like to sponsor me please visit:

http://www.doitforcharity.com/ChrisE


Many thanks

Chris

16 May 2011 - Cancer Centre, Old QEH

Sorry, I haven't updated the blog for a while. I seem to be writing the same words each time. Still no change is a good thing.

To catch up. Deb has now completed six cycles of PCV chemotherapy. The effects of the chemotherapy are cumulative and during each successive cycle she has suffered worse side effects. During the last cycle she was physically sick several times and has felt sick all of the time. As a result she has not eaten very much and during the 2 weeks she was actually taking the chemo she suffered from general tiredness and spent long periods either in bed or resting. When she finished taking the drugs she improved significantly but unfortunately almost immediately got a throat infection which she has found difficult to shake off. Despite all this we managed to have a good long weekend in Torcross, South Devon with the Thomases and the Keeleys.

Deb had her mid-cycle visit to the Cancer Centre on 18 April. She had a blood test and results were good (WBC = 3.2, RBC = 3.16, PTS = 120).

We also saw the results of the MRI scan Deb had on 14 April. Results were very good and essentially the tumour was the same size as the scan taken 3 months ago. This was Deb's 15th MRI scan since diagnosis in May 2008.

Last Monday we visited the Cancer Centre for the start of Deb's 7th cycle of PCV. We saw DR Caroline Connolly, Registrar. The blood tests results were poor (WBC = 3.5, RBC = 2.7, PLT = 43). The platelet count at 43 was the lowest Deb has had. It was agreed Deb would delay the start of chemo for a week to give her platelets a chance to recover. The doctor explained that the cells in our blood live for only 7 - 10 days and are constantly being replaced by new cells from the bone marrow. The chemotherapy interferes with the production of these cells. The effects are cumulative and after each cycle the body takes longer to get back to full production. At some point the body will not be able to recover and then the chemo will have to be stopped.

So we return to the QE next Monday for another blood test and hopefully the 7th cycle of chemo.

5 April 2011 - Cancer Centre, Neurosciences Outpatients Department and Oncology Unit Old QE

Visit for blood test and to see Dr Sanghera prior to start of Deb's fifth cycle of PCV chemotherapy. This was a long day - left home at 09:00 and didn't get back in until 17:30.

Arrived at Cancer Centre about 9:30 but Deb did not get in for blood test until about 10:15. Then the nurse could not find a vein in Deb's arm so after a couple of fruitless attempts they sent Deb upstairs to the oncology unit. The nurse is only allowed to have two goes - after that it could be construed as assault. (The people really skilled at sticking needles into veins are in the unit administering the chemotherapy. They have to insert a long needle into the vein not just prick it to get blood out. And if they miss the vein it has serious consequences; it is not good having very toxic drugs leaking into your skin. They find the vein by touch as much as sight. The large veins you can see are often very deep and not suitable. They find smaller ones closer to the surface of the skin by feeling for them.) Eventually they got some blood out of Deb's left arm. When analysed the results were good. (RBC = 3.23, WBC = 6.0, Platelets = 122 A little low but acceptable).

We eventually saw Dr Sanghera at about 11:30 (appointment time was 10:10) in the Neurosciences Outpatients Department. He was pleased with Deb's blood test results and said she could have her chemotherapy.

Also discussed: Steroids: agreed Deb could reduce dose from 4 mg and 2 mg on alternate days to 2 mg each day.

Next scan: Date of next MRI is set for 14 April at 11:15. We will see Dr Sanghera on 18 April and can discuss the results of the scan then.

Antibiotics: Dr S was concerned that Deb had received antibiotics for a chest infection while she was on chemotherapy. He said she should come in for a blood test before going on antibiotics. If her immune system was compromised by the chemo she may have to have special antibiotics to prevent the infection taking over. It felt like we were having our wrists slapped when really our GP was at fault. He knew Deb was on chemo.

After lunch arrived in Oncology at about 12:30. After sitting in the waiting area for about an hour the sister came out to tell us that they could not find Deb's script for the chemotherapy and they had to get a second copy. The intravenous part (vincristine) has to be made up on site by the pharmacy and this would take another hour and a half. Eventually got into the Oncology Unit about 4:00. More trouble getting the needle into Deb's right arm (eventually the job was done by Irish Nancy who had been to a Kylie concert over the weekend). After the intravenous chemotherapy we had to go to the pharmacy to get the two tablets that form the rest of the chemo. When they came to dispense it, the dose was wrong. (Deb is still on the reduced dose - they tried to give her the original higher dose.) The pharmacy had to get hold of Dr Sanghera and get him to come down and verify what the dose should be. We eventually got home at about 5:30.

14 March 2011 - Cancer Centre, Old QE

Visit to hospital today for Deb to have blood tests and review effects of chemotherapy.

This time, Deb's fourth cycle of PCV, I think the side effects have been slightly worse. Deb has had a bit more sickness, headaches and general flu-like symptoms. Psychologically she has also been affected. She has not been able to lift herself as well as for previous cycles and has been depressed.

Unusually for the Cancer Centre, this was a quick visit. There did not seem to be as many people around and Deb did not have to wait for the blood test and as soon as she got the results we were called into see the doctor. The results of the blood test were very good. In particular the platelet count was 137 (almost within the normal range).

We saw the SHO, Dr Meade. She was pleased with Deb's progress and we agreed:

1) To return in 3 weeks time (5 April) for more blood tests and if these are OK Deb will start her fifth cycle of PCV.

2) As Deb's platelet levels have recovered so well we will stay at the current reduced chemotherapy dose (ie lumoustine reduced by 25%, procarbazine reduced by 20%).

3) Next brain scan will be arranged for end of April/beginning of May.

22 February 2011 - Cancer Centre, Neurosciences Outpatients Department, Oncology Unit, Old QEH

Last week, the start of Deb's fourth cycle of PCV chemotherapy was delayed because of her low platelet count. We returned to the hospital today for Deb to have a further blood test and to see Dr Sanghera to consider the next cycle of chemotherapy.

Cancer Centre

This took along time. The blood analysis machine was faulty and would not print out. Eventually we got the results which were not good. The platelet count had increased but only slightly. (Last week= 60, today = 78, minimum of healthy range = 140, minimum for chemotherapy = 100). Other counts - red blood cells etc - were slightly down but not enough to worry.

Neurosciences OPD

We saw Dr Sanghera who said that Deb could start her next cycle of chemotherapy but he would reduce the dose in some of the components because of the low platelet count. (Vincristine - as before, administered intravenously; Lomustine - 25% reduction, 3 tablets instead of 4; Procarbazine - 20% reduction, for 8 days instead of 10). Dr Sanghera wants Deb to return in 3 weeks for another blood test.

Oncology Unit

Chemotherapy unit has been decanted (their word) from its original site in the Cancer Centre to the second floor of the Old QE. This is a 'pre-move' in preparation for a move into the new hospital later in the year. We had to wait a long time before Deb had her vincristine. In total out of the house for 5.5 hours.

Yesterday we went to the West Midlands Brain Tumour Support Group. We had a talk from Latha Senthil, Consultant Neuroradiologist at the QE. I found her talk very interesting. One of the things she said was that grade IV brain tumours (like Deb's) grow very quickly and therefore have to generate their own blood supply. Because the blood vessels that supply the tumour have grown fast they do not have time to develop a blood brain barrier. So when contrast medium is injected during an MRI scan it leaks into the fast growing part of the tumour from these malformed blood vessels. It is this leakage that shows up as 'white' on Deb's scans. This lack of a blood/brain barrier around the fast growing parts of the tumour also allows the chemotherapy to be effective. It leaks into those parts of the brain where it is most needed. The tumour's fast growth is its own Achilles heel.

14 February 2011 - Cancer Centre, Old QE Hospital

Deb, Kate and I on a visit to Southport, October last year

Visited cancer centre today following Deb's completion of her third cycle of PCV chemotherapy. Deb had only minor side effects during this cycle. She has not had any significant headaches and her bouts of dizziness have been minimal. She has been a bit nauseous and tends not to finish meals but generally Deb has felt really well.

Deb had an MRI scan on 16 January. Today we met Dr Sanghera to discuss the results and consider the next cycle of chemotherapy.

Scan Results

The results of the scan were positive. The overall size of the tumour was slightly reduced and the 'active' (Grade IV) area was about the same size as on the previous scan (9 September 2010). This shows the chemotherapy has been effective. Dr Sanghera was pleased with the results and Deb's general health.

Blood Tests

The blood test today showed Deb's red blood cell count and her platelet levels were low. The platelet level was of particular concern (Deb = 61; bottom of normal range = 140). About 2 weeks ago Deb had a bleed into her left eye and has developed a number of bruises on her legs. Dr Sanghera said this was due to a low platelet level which would have reached its lowest level 2 weeks ago (he said 'nadir') about 4 weeks after the chemo was administered. (He said spontanous bleeding was only likely to occur with platelet levels below 10). He thought that Deb's platelet level would be increasing now but wanted chemotherapy to be delayed for a week to allow levels to rise further. Deb will return for a further blood test next Tuesday (22 February) and providing the platelets have recovered (>100) will start her next cycle of chemotherapy. If platelet levels are still low then he would consider whether a blood transfusion was necessary.

Steroids

Deb has been on a dexamthasone dose of 4 mg per day since she stabilised after her operation in July last year. We discussed reducing the dose. Dr Sanghera reviewed the scans and thought that the fluid (oedema) levels in her brain looked similar (September 2010 compared with January 2011). He thought that Deb could start reducing her steroid dose but suggested that this was done very gradually. As a start Deb will have doses of 4 mg and 2 mg on alternate days.

Overall this was a positive visit. Deb had been very concerned about the results of the scan and has not slept well over the past week. To get good positive news was a great relief.

4 January 2011 - Cancer Centre, Old QE Hospital

Hi everyone; happy new year. Sorry I haven't posted anything for a while. It was a combination of my lethargy and the laptop being out of action because of a faulty power supply.

Anyway, I am happy to say that not much has changed since my last post. Deb went through her second cycle of PCV chemotherapy (she took the medication between the 15th and 25th November). I think her side effects were slightly worse than the first cycle. She was more tired and felt sick more often but nothing she couldn't live with. (Sorry - poor grammar I don't think you should end a sentence with a preposition.) Physiologically Deb was fine over Christmas and New Year. She was not taking the chemo - the start of the next cycle was delayed for a week so Deb would not have to be taking the medicine over the New Year - and she felt well. Psychologically it was not such a good time. If you are terminally ill you don't want to dwell too much on the past or think about the future. Christmas when traditionally you remember the past year and make resolutions for the future is not a good time for living in the 'now'.

On the 31 December Deb had her usual blood test (which was OK) and we saw Dr Sanghera on the 4 January. We discussed how Deb had been over the previous 6 weeks . The doctor was pleased and surprised at how well Deb was tolerating the chemotherapy. It was agreed that she would start her third cycle of the PCV chemotherapy. As before, the vincristine was administered intravenously at the hospital and the other two drugs were taken in tablet form at home. All seems to be going well so far. Deb's side effects are at about the same level as for previous cycles.

Dr Sanghera has arranged an MRI scan for Sunday 16 January. It will be interesting to see how the PCV therapy has effected the tumour.

We see Dr S again on the 14 February for the next cycle of chemotherapy. I expect we will look at the scan results then.

I promise to write more often - if only to say nothing is happening.