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.