Wednesday, 27 August 2008
25 August 2008 - End of third week of combined radio/chemotherapy treatment
Deb (with Sam - also wearing a hat to show solidarity) on 26 August after 3 weeks of treatment
3 weeks of combined radio/chemotherapy now complete
Side effects from chemotherapy and more significantly the radiotherapy are now starting to kick in. In particular Deb has started to lose her hair (I had to vacuum her pillow the other morning) and she is now very tired during the day. She usually lies on the bed both in the morning and afternoon. She doesn't sleep but just feels exhausted.
Despite her tiredness, Deb is still not sleeping very well (even when taking her sleeping pill - Zopiclone) and on average gets about 5 hours sleep a night. We saw our GP, Dr Garbett on 26 August about this. He has changed Deb's sleeping pill for something stronger - 5mg Nitrazepam tablets. (Deb is an expert on sleeping pills - she has worked with clients addicted to all the ones she has used). Dr Garbett was again very supportive and asked Deb to ring and let him know if these pills do not work because he would like to consult with colleagues before prescribing anything else.
On Friday 22 August Deb had her third blood test. Apart from the red blood cell count, which was slightly down, all results were in the normal range or higher.
WBC count = 11.6 K/uL (reference range 4.1 - 10.9 K/uL)
RBC count = 4.12 M/uL (reference range 4.2 - 6.3 M/uL)
Platelets = 241 K/uL (reference range 140 - 440 K/uL)
Deb did not have a review with the consultant this week because of the Bank Holiday but the blood test results were discussed with Fred Berki, Macmillan Nurse, who thought they were OK. (Fred did say that a high white blood cell count is not always a good thing, it might be a indication that the body is fighting an infection.)
Deb remains upbeat and positive. She even had me downloading music from the Internet - such classics as Silver Lady by David Soul and I'm Scared by Burton Cummings. But the treatment is starting to take its toll. We look forward to the day when our lives are not governed by appointment times and the taking of tablets.
Monday, 18 August 2008
18 August 2008 - End of second week of combined radio/chemotherapy treatment
Deb (with Andy) on 18 August after 2 weeks of treatment
2 week of combined radio/chemo therapy now complete.
Deb still only has minor side effects. She has not had any hair loss and no sickness or vomiting. Here is a list of some of side effects she has had (not sure if these are due to the steroids, the radiotherapy or the chemotherapy - or the tumour.)
Oral infection (thrush - from steroids)
Red spots under the skin (only one of two on hands and arms)
Inability to sleep or stay asleep (steroids)
Dizziness (From radio/chemotherapy)
Tingling sensation in left shoulder, head and face (radio/chemotherapy)
Blurry vision (steroids)
Occasional ringing in the ears
Muscle weakness in legs
Frequent urination
Face swelling (steroids)
Hot flushes
On Friday 15 August Deb had her second blood test. The results were all in the normal range or higher eg
WBC count = 13.2 K/uL (reference range 4.1 - 10.9 K/uL)
RBC count = 4.27 M/uL (reference range 4.2 - 6.3 M/uL)
Today saw consultant oncologist, Andrew Chan (the same doctor we saw last week; Professor Jones was back at work but because next Monday is a bank holiday they were trying to see an extra number of patients. It seems wrong to me that because its a bank holiday Deb will not have her radiotherapy and the doctors clinics are in chaos trying to fit 2 days into one. If Tesco can open you would think the Radiotherapy Unit could be staffed. Treatment for cancer seems more important than buying a cabbage.) Because of the scrum in the Cancer Centre, the meeting with the doctor was a bit rushed but he asked Deb about her side effects and he confirmed that the blood test was good. Next week's review will be on the Tuesday in the Neuroscience Department. Because they will be very busy we agreed that after the blood test results we would consult Claire (Oncology Nurse) and if Deb felt OK and bloods were good we would not need to attend.
Sunday, 17 August 2008
Some more Qs & As
Hi Chris
Thank you for your email
and 2.There are three support groups in the midlands. One is in Worcester run by Rosemary Wormington WWW.WBTSG.ORG, Brain tumour uk shrewsbury 0800 988 2628 and we are launching a third on 12th September at 2pm Birmingham central Library. There are numerous charitiest around, two of which are Samantha Dickson Brain Tumour Trust and Braintumouruk.org who have fought and moved things on in the brain tumour world.
They offer telephone support as well as meetings and drop in sessions. Samantha Dickson support is coming to the cancer centre on18th of August. They are very pro active and good support.
3. We have introduced patient information prescriptions and this can be recorded by the medical staff whilst in clinic. I can remind Prof Jones about this but I think it is more likely that Fred and I can do this for you.
WE have proper Dexamethasone reducing/changing charts that you can be given when reducing steroids.
4. We have booklets about Temodal. Given to us by Scheering Plough. We are aware of the web site. We regularly meet with the reps and are waiting for more info leaflets from them as they have this website on the sheet.
Hope that helps
Best wishes
Claire
Claire GoddardMacmillan CNS Neuro-oncologyInternal: 8663Phone: +44 (0) 121 472 1311 x 8663Email: Claire.Goddard@uhb.nhs.ukWeb: http://www.uhb.nhs.uk Neurosurgery - University Hospital Birmingham NHS Foundation TrustNeurosciences OPDQueen Elizabeth Hospital, Queen Elizabeth Medical Centre,Birmingham, B15 2TH
-----Original Message-----From: chris.eaton@live.com [mailto:chris.eaton@live.com] Sent: 12 August 2008 08:06To: Claire GoddardCc: Frederick BerkiSubject: Deb's Brain Tumour
Claire,
It was good to meet you yesterday when I came to the cancer centre with my wife Deborah Eaton.
I have some questions.
1 While we were waiting to see the doctor we talked to other patients. 2 of these had GBM tumours like Deb but were in different stages of their treatment. I found this contact very helpful. It was good to share experiences if only to learn that you were not the only people going through this. Is there some event when brain tumour sufferers can get together either through the hospital or outside? We have been told about cancer support groups but I guess they are a bit more general and you would be unlikely to meet brain tumour sufferers.
2 I have started a blog detailing what has happened to Deb (You can find it at www.themasseffect/blogspot.com - I set it up to inform all our family and friends of what was happening. They can look at the blog and we don't have to spend half our life on the telephone). I don't mind other people accessing the site and I am sure that others must have done similar things. Do you keep a log of blogs/websites set up by brain tumour sufferers that I could look at?
3 A suggestion. At every meeting with consultants I have to take notes. Often these have been related to drug doses, timings etc. Much of this information seems crucial but the information has not been confirmed in writing. The doctor must have to write up his notes after the meeting. Couldn't they do this during the meeting and then give us a copy at the end? This would ensure all important decisions were clear to all involved. (I thought all notes were kept electronically now - he could email us a copy).
4 At the Schering website (manufacturers of Temodal) I found a patient therapy information sheet (at http://www.temodar.com/temodar/application?origin=index.jsp&event=bea.portal.framework.internal.refresh&pageid=treatment&__event=goto_index). I found this very useful in explaining the treatment cycle.
Thanks for your help
Chris Eaton
Thank you for your email
and 2.There are three support groups in the midlands. One is in Worcester run by Rosemary Wormington WWW.WBTSG.ORG, Brain tumour uk shrewsbury 0800 988 2628 and we are launching a third on 12th September at 2pm Birmingham central Library. There are numerous charitiest around, two of which are Samantha Dickson Brain Tumour Trust and Braintumouruk.org who have fought and moved things on in the brain tumour world.
They offer telephone support as well as meetings and drop in sessions. Samantha Dickson support is coming to the cancer centre on18th of August. They are very pro active and good support.
3. We have introduced patient information prescriptions and this can be recorded by the medical staff whilst in clinic. I can remind Prof Jones about this but I think it is more likely that Fred and I can do this for you.
WE have proper Dexamethasone reducing/changing charts that you can be given when reducing steroids.
4. We have booklets about Temodal. Given to us by Scheering Plough. We are aware of the web site. We regularly meet with the reps and are waiting for more info leaflets from them as they have this website on the sheet.
Hope that helps
Best wishes
Claire
Claire GoddardMacmillan CNS Neuro-oncologyInternal: 8663Phone: +44 (0) 121 472 1311 x 8663Email: Claire.Goddard@uhb.nhs.ukWeb: http://www.uhb.nhs.uk Neurosurgery - University Hospital Birmingham NHS Foundation TrustNeurosciences OPDQueen Elizabeth Hospital, Queen Elizabeth Medical Centre,Birmingham, B15 2TH
-----Original Message-----From: chris.eaton@live.com [mailto:chris.eaton@live.com] Sent: 12 August 2008 08:06To: Claire GoddardCc: Frederick BerkiSubject: Deb's Brain Tumour
Claire,
It was good to meet you yesterday when I came to the cancer centre with my wife Deborah Eaton.
I have some questions.
1 While we were waiting to see the doctor we talked to other patients. 2 of these had GBM tumours like Deb but were in different stages of their treatment. I found this contact very helpful. It was good to share experiences if only to learn that you were not the only people going through this. Is there some event when brain tumour sufferers can get together either through the hospital or outside? We have been told about cancer support groups but I guess they are a bit more general and you would be unlikely to meet brain tumour sufferers.
2 I have started a blog detailing what has happened to Deb (You can find it at www.themasseffect/blogspot.com - I set it up to inform all our family and friends of what was happening. They can look at the blog and we don't have to spend half our life on the telephone). I don't mind other people accessing the site and I am sure that others must have done similar things. Do you keep a log of blogs/websites set up by brain tumour sufferers that I could look at?
3 A suggestion. At every meeting with consultants I have to take notes. Often these have been related to drug doses, timings etc. Much of this information seems crucial but the information has not been confirmed in writing. The doctor must have to write up his notes after the meeting. Couldn't they do this during the meeting and then give us a copy at the end? This would ensure all important decisions were clear to all involved. (I thought all notes were kept electronically now - he could email us a copy).
4 At the Schering website (manufacturers of Temodal) I found a patient therapy information sheet (at http://www.temodar.com/temodar/application?origin=index.jsp&event=bea.portal.framework.internal.refresh&pageid=treatment&__event=goto_index). I found this very useful in explaining the treatment cycle.
Thanks for your help
Chris Eaton
17 August 2008 - Some thoughts on radiotherapy
Exposure to radiation in the workplace is controlled by the Ionising Radiations Regulations 1999. Under these Regulations an employee of 18 years or over is limited to a radiation dose of 20milliSieverts (mSv) in any calendar year. If a person receives a dose greater than this permitted level then an immediate investigation must be carried out into the causes and the overdose reported to the HSE.
In each session Deb is receiving a dose of 1.8 - 2.0 Grays (Gy) of X-ray radiation. The total dose she will receive during her radiotherapy is 55 - 60 Gy. (Don't worry about the units; Sieverts measure the dose received, Grays measure the effect that dose has on the body i.e. to choose a boxing analogy Sieverts measure how hard you are hit, Grays whether you are knocked out or not. For gamma and X-ray radiation Sieverts and Grays are the same i.e. 1 Sv = 1 Gy.)
So in one session Deb is receiving a dose of 2 Gray or 2000 mSv that is 100 times the radiation exposure permitted in a whole year by the radiographers carrying out the therapy. Scary eh?
Monday, 11 August 2008
11 August 2008 - End of first week of combined radio/chemotherapy
Deb on 11 August, after 1 week of treatment.
First week of the combined radio/chemo therapy now complete. We both approached the start of this treatment with trepidation. We did not know how Deb would react. The doctors had said that an aggressive tumour requires aggressive treatment and the list of side effects for the chemo seems extensive. However we need not have worried. Deb has not had any significant side effects - yet.
On Friday, the radiotherapy was followed by a blood test. The results of that were all in the normal range. In fact both Deb's white and red blood cell count was higher than before she started the treatment.
Today after the radiotherapy we saw the consultant oncologist to review the treatment so far. (It was not Professor Jones - he is on holiday in Russia). The doctor was content with progress. The blood test results were OK. We agreed: 1) Deb would stay on 6mg dose of the steroids until the review next Monday. 2) There was no need to continue with the antinauseant medication. Deb should only take a further tablet if she actually felt sick. 3) At the weekend (when Deb does not have radiotherapy but does still take the chemotherapy) she should take the Temodal in the morning at 0900 or 1000.
While waiting to see the doctor we got talking to other patients with brain tumours. 2 of the patients waiting had a GBM tumour like Deb. One 52 year old male had had most of the tumour removed by surgery, had finished his combined radio/chemo therapy and was now on his chemotherapy cycles. The other, Paula, had found out about her tumour in early May following a fit at work. Her tumour is also in the right frontal lobe and inoperable. She is a little in front of Deb with her treatment and is on week 4 of the radiotherapy. Both looked well and had not had any significant side effects. It was good to speak to others walking the same path as ourselves.
So onward we go: 5 more weeks of radiotherapy.
Thursday, 7 August 2008
04 August 2008 - Chemotherapy
Deb has been prescribed an antitumour agent called temozolomide (trade name Temodal). This drug is used for treatment of patients with newly diagnosed glioblastoma multiforme tumour in combination with radiation (concomitant phase) and subsequently as chemotherapy only (monotherapy phase).
In the concomitant phase the chemotherapy is taken every day for 42 days in combination with radiotherapy. Based on your blood counts and/or how you tolerate the medicine during the concomitant phase, the temozolomide may be delayed or discontinued. Once the radiation therapy is completed, chemotherapy is interrupted for 4 weeks to give your body a chance to recover. You then start the monotherapy phase.
In the monotherapy phase there are 6 treatment cycles and each one lasts 28 days. Temozolomide is taken once each day for the first 5 days of the cycle followed by 23 days without temozolomide. The temozolomide dose will be higher than during the concomitant phase. Based on your blood counts and/or how you tolerate the medicine during each treatment cycle, the temozolomide may be adjusted, delayed or discontinued.
For more information on the drug treatment visit the manufacturer's (Schering-Plough) website http://www.temodar.com/en_US/Temodar/pdf/TE0276.pdf
Possible side effects of temozolomide
Each person’s reaction to chemotherapy is different. Some people have very few side effects, while others may experience more. The side effects described in this information will not affect everyone who is given temozolomide, and may be different if you are having more than one chemotherapy drug.
We have outlined the most common side effects and those that are less common, so that you can be aware of them if they occur. However, we have not included those that are very rare and therefore extremely unlikely to affect you. If you notice any effects which you think may be due to the drug, but which are not listed in this information, please discuss them with your doctor or chemotherapy nurse.
Lowered resistance to infection
Temozolomide can reduce the production of white blood cells by the bone marrow, making you more prone to infection. This effect can begin seven days after treatment has been given, and your resistance to infection usually reaches its lowest point 10–14 days after chemotherapy. Your blood cells will then increase steadily and will usually have returned to normal levels within 21–28 days.
Contact your doctor or the hospital straightaway if:
Bruising or bleeding
Temozolomide can reduce the production of platelets (which help the blood to clot). Let your doctor know if you have any unexplained bruising or bleeding, such as nosebleeds, blood spots or rashes on the skin, or bleeding gums.
Anaemia (low number of red blood cells)
While having treatment with temozolomide you may become anaemic. This may make you feel tired and breathless. Let your doctor or nurse know if these symptoms are a problem.
Feeling sick (nausea) and being sick (vomiting)
If you do feel sick this may begin soon after the treatment is given and last for a day. Your doctor can prescribe very effective anti-sickness (anti-emetic) drugs to prevent, or greatly reduce, nausea and vomiting. If the sickness is not controlled, or continues, tell your doctor; they can prescribe other anti-sickness drugs which may be more effective. Some anti-sickness drugs can cause constipation. Let your doctor or nurse know if this is a problem.
Diarrhoea
This can usually be easily controlled with medicine, but it is important to let your doctor know if it is severe or continues. It is important to drink plenty of fluids if you have diarrhoea.
Constipation
Constipation can usually be relieved by drinking plenty of fluids, eating a high fibre diet and taking gentle exercise. Sometimes you may need to take medicines to stimulate your bowel. These can be prescribed by your doctor.
Loss of appetite and temporary taste alterations
Both of these may occur. A dietitian or specialist nurse at your hospital can give advice on boosting appetite, coping with eating difficulties and maintaining weight.
Rashes
Temozolomide can cause a rash which may be itchy. Your doctor can prescribe treatment to help reduce this.
Headache
Let your doctor know if you have headaches while having treatment with temozolomide
Tiredness and feeling weak
You may feel very tired. It is important to allow yourself plenty of time to rest.
The NICE guidance on Temozolomide can be found at http://www.nice.org.uk/guidance/index.jsp?action=article&o=32167
The European Medicines Agency (EMEA) public assessment report for Temodal can be found at http://www.emea.europa.eu/humandocs/PDFs/EPAR/Temodal/274198en1.pdf
In the concomitant phase the chemotherapy is taken every day for 42 days in combination with radiotherapy. Based on your blood counts and/or how you tolerate the medicine during the concomitant phase, the temozolomide may be delayed or discontinued. Once the radiation therapy is completed, chemotherapy is interrupted for 4 weeks to give your body a chance to recover. You then start the monotherapy phase.
In the monotherapy phase there are 6 treatment cycles and each one lasts 28 days. Temozolomide is taken once each day for the first 5 days of the cycle followed by 23 days without temozolomide. The temozolomide dose will be higher than during the concomitant phase. Based on your blood counts and/or how you tolerate the medicine during each treatment cycle, the temozolomide may be adjusted, delayed or discontinued.
For more information on the drug treatment visit the manufacturer's (Schering-Plough) website http://www.temodar.com/en_US/Temodar/pdf/TE0276.pdf
Possible side effects of temozolomide
Each person’s reaction to chemotherapy is different. Some people have very few side effects, while others may experience more. The side effects described in this information will not affect everyone who is given temozolomide, and may be different if you are having more than one chemotherapy drug.
We have outlined the most common side effects and those that are less common, so that you can be aware of them if they occur. However, we have not included those that are very rare and therefore extremely unlikely to affect you. If you notice any effects which you think may be due to the drug, but which are not listed in this information, please discuss them with your doctor or chemotherapy nurse.
Lowered resistance to infection
Temozolomide can reduce the production of white blood cells by the bone marrow, making you more prone to infection. This effect can begin seven days after treatment has been given, and your resistance to infection usually reaches its lowest point 10–14 days after chemotherapy. Your blood cells will then increase steadily and will usually have returned to normal levels within 21–28 days.
Contact your doctor or the hospital straightaway if:
- your temperature goes above 38ºC (100.5ºF)
- you suddenly feel unwell (even with a normal temperature).
You will have a blood test before having more chemotherapy to make sure that your cells have recovered. Occasionally it may be necessary to delay your treatment if the number of blood cells (the blood count) is still low.
Temozolomide is sometimes given at the same time as a six week course of radiotherapy. Your blood cell count will be monitored throughout the course of treatment to make sure that the number of white blood cells doesn't get too low.
Bruising or bleeding
Temozolomide can reduce the production of platelets (which help the blood to clot). Let your doctor know if you have any unexplained bruising or bleeding, such as nosebleeds, blood spots or rashes on the skin, or bleeding gums.
Anaemia (low number of red blood cells)
While having treatment with temozolomide you may become anaemic. This may make you feel tired and breathless. Let your doctor or nurse know if these symptoms are a problem.
Feeling sick (nausea) and being sick (vomiting)
If you do feel sick this may begin soon after the treatment is given and last for a day. Your doctor can prescribe very effective anti-sickness (anti-emetic) drugs to prevent, or greatly reduce, nausea and vomiting. If the sickness is not controlled, or continues, tell your doctor; they can prescribe other anti-sickness drugs which may be more effective. Some anti-sickness drugs can cause constipation. Let your doctor or nurse know if this is a problem.
Diarrhoea
This can usually be easily controlled with medicine, but it is important to let your doctor know if it is severe or continues. It is important to drink plenty of fluids if you have diarrhoea.
Constipation
Constipation can usually be relieved by drinking plenty of fluids, eating a high fibre diet and taking gentle exercise. Sometimes you may need to take medicines to stimulate your bowel. These can be prescribed by your doctor.
Loss of appetite and temporary taste alterations
Both of these may occur. A dietitian or specialist nurse at your hospital can give advice on boosting appetite, coping with eating difficulties and maintaining weight.
Rashes
Temozolomide can cause a rash which may be itchy. Your doctor can prescribe treatment to help reduce this.
Headache
Let your doctor know if you have headaches while having treatment with temozolomide
Tiredness and feeling weak
You may feel very tired. It is important to allow yourself plenty of time to rest.
The NICE guidance on Temozolomide can be found at http://www.nice.org.uk/guidance/index.jsp?action=article&o=32167
The European Medicines Agency (EMEA) public assessment report for Temodal can be found at http://www.emea.europa.eu/humandocs/PDFs/EPAR/Temodal/274198en1.pdf
04 August - The Start of Treatment
A typical radiotherapy machine.
Deb started radio/chemotherapy on the 4 August.
The first session of radiotherapy (a session is called a fraction) took place at the QEH, Cancer Centre at 12:30. Deb was laid on a bed under the radiotherapy machine and fitted with her mask which was then screwed to the table to ensure that her head was correctly located and did not move during the treatment. The table was then correctly positioned using lasar beams. Deb will have three treatments per session one from each side of the head and one from the top. Treatment will consist in total of 30 sessions, every week day for 6 weeks. A camera was positioned on the side of Deb's head remote from the radiation beam to ensure consistency of treatment. The beam itself came through an aperture slot in the head of the machine. All staff have to leave the room during treatment and Deb is monitored by CCTV. Treatment will be the same each day. The first day the treatment took about 20 minutes in total.
Genral information on radiotherapy can be found at http://www.cancerbackup.org.uk/Treatments/Radiotherapy/Beingtreated/Externalbeam
Deb started radio/chemotherapy on the 4 August.
The first session of radiotherapy (a session is called a fraction) took place at the QEH, Cancer Centre at 12:30. Deb was laid on a bed under the radiotherapy machine and fitted with her mask which was then screwed to the table to ensure that her head was correctly located and did not move during the treatment. The table was then correctly positioned using lasar beams. Deb will have three treatments per session one from each side of the head and one from the top. Treatment will consist in total of 30 sessions, every week day for 6 weeks. A camera was positioned on the side of Deb's head remote from the radiation beam to ensure consistency of treatment. The beam itself came through an aperture slot in the head of the machine. All staff have to leave the room during treatment and Deb is monitored by CCTV. Treatment will be the same each day. The first day the treatment took about 20 minutes in total.
Genral information on radiotherapy can be found at http://www.cancerbackup.org.uk/Treatments/Radiotherapy/Beingtreated/Externalbeam
Deb's Treatment Plan
Deb on 04 August before the start of her treatment.
Debs medication
Chemotherapy:
Temozolomide 100mg capsules (pink)
Temozolomide 20mg capsules (yellow)
Temozolomide 5mg capsules (green)
Antinauseant:
Ondansteram
Steroids:
Dexamethazone 2mg tablets
Gastro resist medication:
Omeprazole 20mg
Pain relief
Paracetamol
Sleeping pill
Zopiclone 7.5mg
Deb's Treatment Plan
Chemotherapy (135mg) 1 hour before radiotherapy
Antinauseant tablet 1 hour before chemotherapy
No food for 2 hours before chemotherapy
Steroids breakfast and lunch - taken with food
Tuesday, 5 August 2008
29 July 2008 - Meeting with Prof Jones
E mail correspondence between Chris and Fred Berki summarising outocme of meeting with Professor Jones to discuss Deb's treatment plan
-----Original Message-----
From: Chris Eaton [mailto:ce012b1847@blueyonder.co.uk] Sent: 29 July 2008 16:47
To: Frederick Berki
Subject: Meeting with Professor Jones - 29/07/08
Hi Fred,
I thought the meeting was a bit rushed today and although I took notes I am not sure I got everything down correctly as I thought we would get some of the information in writing.
Please could you review my notes below and confirm that everything is correct (particularly the Temodal dose).
1 Chemotherapy (Temodal)
Issued with 45 tablets. Start treatment Monday 04 August. Take each day for 5 days then nothing over the weekend. Then continue 7 days a week until treatment is complete.
Take chemotherapy drug 1 hour before radiotherapy is due (states on bottle to take at least one hour before breakfast, does this mean Deb cannot eat before taking Temodal/radiotherapy). .
Pharmacist stated that Deb's dose was 135 mg. Temodal came in capsules of 100mg, 20mg and 5mg. Therefore Deb needs to take each day 1 x 100mg + 1 x 20mg + 3 x 5mg = 135mg.
2 Anti-sickness medicine (Ondanestron 8mg)
Take 2 per day for first 5 days of treatment. Take one 1hour before Temodal and then another in the evening. May cause constipation.
3 Steroids
Sunday 3 August - 3 x 2 = 6 mg
Monday 4 August - 4 x 2 = 8 mg
Tuesday 5 August - 4 x 2 = 8 mg
Rest of week - 3 x 2 = 6 mg
Dose to be reviewed at next meeting with Professor Jones - appointment letter to come through to us in the near future.
I assume the results of the blood tests are OK and treatment can start on Monday.
Many thanks
Chris Eaton
Hi Chris,
Deb's blood results appear OK to me. I will show them to Prof in clinic tomorrow, but if you don't hear from me then it is OK to carry on.
The chemotherapy should be issued to cover 42 days, i.e. 6 weeks of treatment. However, only take during the week for the first week until Deb has had another blood test, i.e. to see her response to the drug, with a view to then taking it 7 days a week. The staff in the treatment room will give you the blood forms, and usually blood tests are done either thursday or friday, ready for the clinic on monday. It is better to take Temodal on an empty stomach, more for the sake of reducing the risk of nausea, rather than any sort of reaction to the food. I suggest Deb should not take it within two hours of eating - so you may have to re-jig a mealtime, depending on what time the treatment is due. The general idea is to take Temodal 1 hour before the radiotherapy, and the antisickness Ondansetron 1 hour before before the Temodal. The Temodal dose is calculated on the person's body surface area, so it can vary from person to person. I agree with your drug calculation!
Prof usually recommends that the Ondansetron is taken for the first 3-5 days, and then maybe once a day thereafter - most people cope well with very little discomfort, and some even manage without the Ondansetron. NB - Ondansetron is famous for its constipating abilities, so a good fluid intake, fibre etc are helpful.
You're right with the Dexamethasone. Stick to that plan until seen by Prof in clinic.
I wont be in clinic as I've got two weeks holiday coming up, but Claire will be around and she is contactable via the same routes as me - I hope you've still got our contact details!
Best wishes,
Fred
Frederick BerkiMacmillan Clinical Nurse Specialist Neuro OncologyInternal: 8663Phone: +44 (0) 121 4721311Mobile: +44 (0) 7767442101Email: Frederick.Berki@uhb.nhs.ukWeb: http://www.uhb.nhs.uk Neuroscience - University Hospital Birmingham NHS Foundation TrustNeurosciences OPDQueen Elizabeth Hospital, Queen Elizabeth Medical Centre,Birmingham, B15 2TH
-----Original Message-----
From: Chris Eaton [mailto:ce012b1847@blueyonder.co.uk] Sent: 29 July 2008 16:47
To: Frederick Berki
Subject: Meeting with Professor Jones - 29/07/08
Hi Fred,
I thought the meeting was a bit rushed today and although I took notes I am not sure I got everything down correctly as I thought we would get some of the information in writing.
Please could you review my notes below and confirm that everything is correct (particularly the Temodal dose).
1 Chemotherapy (Temodal)
Issued with 45 tablets. Start treatment Monday 04 August. Take each day for 5 days then nothing over the weekend. Then continue 7 days a week until treatment is complete.
Take chemotherapy drug 1 hour before radiotherapy is due (states on bottle to take at least one hour before breakfast, does this mean Deb cannot eat before taking Temodal/radiotherapy). .
Pharmacist stated that Deb's dose was 135 mg. Temodal came in capsules of 100mg, 20mg and 5mg. Therefore Deb needs to take each day 1 x 100mg + 1 x 20mg + 3 x 5mg = 135mg.
2 Anti-sickness medicine (Ondanestron 8mg)
Take 2 per day for first 5 days of treatment. Take one 1hour before Temodal and then another in the evening. May cause constipation.
3 Steroids
Sunday 3 August - 3 x 2 = 6 mg
Monday 4 August - 4 x 2 = 8 mg
Tuesday 5 August - 4 x 2 = 8 mg
Rest of week - 3 x 2 = 6 mg
Dose to be reviewed at next meeting with Professor Jones - appointment letter to come through to us in the near future.
I assume the results of the blood tests are OK and treatment can start on Monday.
Many thanks
Chris Eaton
Hi Chris,
Deb's blood results appear OK to me. I will show them to Prof in clinic tomorrow, but if you don't hear from me then it is OK to carry on.
The chemotherapy should be issued to cover 42 days, i.e. 6 weeks of treatment. However, only take during the week for the first week until Deb has had another blood test, i.e. to see her response to the drug, with a view to then taking it 7 days a week. The staff in the treatment room will give you the blood forms, and usually blood tests are done either thursday or friday, ready for the clinic on monday. It is better to take Temodal on an empty stomach, more for the sake of reducing the risk of nausea, rather than any sort of reaction to the food. I suggest Deb should not take it within two hours of eating - so you may have to re-jig a mealtime, depending on what time the treatment is due. The general idea is to take Temodal 1 hour before the radiotherapy, and the antisickness Ondansetron 1 hour before before the Temodal. The Temodal dose is calculated on the person's body surface area, so it can vary from person to person. I agree with your drug calculation!
Prof usually recommends that the Ondansetron is taken for the first 3-5 days, and then maybe once a day thereafter - most people cope well with very little discomfort, and some even manage without the Ondansetron. NB - Ondansetron is famous for its constipating abilities, so a good fluid intake, fibre etc are helpful.
You're right with the Dexamethasone. Stick to that plan until seen by Prof in clinic.
I wont be in clinic as I've got two weeks holiday coming up, but Claire will be around and she is contactable via the same routes as me - I hope you've still got our contact details!
Best wishes,
Fred
Frederick BerkiMacmillan Clinical Nurse Specialist Neuro OncologyInternal: 8663Phone: +44 (0) 121 4721311Mobile: +44 (0) 7767442101Email: Frederick.Berki@uhb.nhs.ukWeb: http://www.uhb.nhs.uk Neuroscience - University Hospital Birmingham NHS Foundation TrustNeurosciences OPDQueen Elizabeth Hospital, Queen Elizabeth Medical Centre,Birmingham, B15 2TH
17 July 2008 - The Mould Room
Example of thermoplastic mask.
The head and neck area is one of the most difficult areas to keep still, even for a short period of time; because of this your Consultant Clinical Oncologist will probably have asked that you have an appointment in the mould room for a close fitting mask to be made.
The mask enables you to maintain your position during treatment, which is essential, as treatment needs to be extremely accurate. Additionally, the mask allows us to make planning reference marks on the mask rather than on your face and neck.
The mask enables you to maintain your position during treatment, which is essential, as treatment needs to be extremely accurate. Additionally, the mask allows us to make planning reference marks on the mask rather than on your face and neck.
How is the mask made?
The mask is made from a thermoplastic mesh material (called Orfit®), which becomes pliable when placed in warm water allowing it to mould directly to your shape. The material is placed on your skin, and has a hole for your nose or mouth. It cools rapidly and sets firm to remain in the shape to which it has been moulded. The procedure is not painful and only takes 5 minutes to mould to your features. And we can keep the mask at the end of the treatment.
You will be asked to remove jewellery, such as earrings and necklaces, so you may prefer to leave them at home when you come for your appointment. Please note that this also applies for all your following appointments too as you will be required to wear the mask.
Patients are often given an appointment for the Simulator at the same time so that x-ray pictures can be taken to ensure that you are in the correct position within the mask. This is called a pre-mould screen.
General Information on Brain Tumours
General Information on Brain Tumours
Brain tumours - click link to get general information on brain tumours at: http://www.cancerbackup.org.uk/Cancertype/Brain/General/Braintumours
Sam has put together an album called Eight by Six. Visit his website http://bambambambambam.com/indeksical/ to download a copy and make a donation to Cancer Research.
Brain tumours - click link to get general information on brain tumours at: http://www.cancerbackup.org.uk/Cancertype/Brain/General/Braintumours
Sam has put together an album called Eight by Six. Visit his website http://bambambambambam.com/indeksical/ to download a copy and make a donation to Cancer Research.
13 July 2008 - Questions and Answers
Correspondence with Fred Berki, Macmillan Clinical Nurse Specialist Neuro Oncology, Queen Elizabeth Hospital, Birmingham
Deb’s Brain Tumour
Correspondence with Fred Berki, Macmillan Clinical Nurse Specialist Neuro Oncology, Queen Elizabeth Hospital, Birmingham
Questions and Answers
Brain Tumour
For general information on brain tumours see Annex 1
Q1 What is the likelihood that the malignant cells will spread to other areas of the brain? Does their location and/or size may make this more or less likely to happen?
A1 Spread from GBM outside of the nervous system is very, very rare, and even into the spine is rare. It can however spread within brain matter and is said to infiltrate along 'white matter tracts'. This can happen despite the treatments mentioned above. Hence the need for regular scans. I wouldn't be able to say at this stage whether this is likely or not, and it does not necessarily depend on tumour size or location
Q2 Does the 30 - 40 % of the tumour that Mr Kay said he would be able to remove include the 'active' areas of the grade 4 tumour? If this is so, doesn't it make surgery a more attractive option?
A2 High grade glioma -type tumours often are not uniform in their makeup - the cells can have elements of Grade 3 and 4 activity i.e. different levels of activity and a single biopsy only gives a snap-shot of that part of the tumour. Also, if this is a tumour that has been there for a long time then much of the active elements will around the outer part, and the middle can be composed of necrotic (dead) or calcified cells. The tumour is also bi-frontal, deep, and up against the ventricles (the fluid-filled spaces in the centre of the brain) which makes surgery complicated. I think, therefore, that if Mr Kay did remove 30-40% of the tumour it would be from the area where it is most accessible, least likely to cause disability, but at the same time least likely to reduce possibility of symptoms - I think if the benefits of surgery clearly outweighed any risks then it would have been offered more emphatically.
Q3 I am still not sure what it is about the tumour that kills you. I asked Mr Kay this question yesterday and I think he said it wasn't the 'mass effect' but the 'pathology' of the tumour. Can you clarify what this means?
A3 These tumours have several detrimental effects; they create a shell of fluid around them (oedema) which causes pressure effects on the brain, which is usually 'generalised' (as opposed to 'localised') and usually causes headache or drowsiness/confusion - localised effects are usually speech problems or limb weaknesses and are associated with more discrete areas of the brain. If not controlled then the increasing oedema compresses the brain and function is gradually impaired and eventually fails - this is controlled by the use of steroids. Similarly as the tumour itself grows, 'mass-effect', it causes rising pressure with the same results as the oedema, but this is minimally responsive to steroids. Finally, the cells of the tumour, which split and multiply rapidly (the pathology) aggressively infiltrate surrounding brain tissue destroying function gradually. It is the action of these processes combined that have the detrimental effect.
Q4 Mr Kay described the tumour as being diffuse and not having clear boundaries. He said parts of the tumour not visible on the scan were extending into other parts of the brain. Will the radio/chemotherapy deal with this?
A4 High grade gliomas do not have a distinct border - although they may appear to be clearly defined on a scan, the edge of the tumour merges with healthy brain. During surgery the surgeon attempts 'macroscopic' removal, i.e. they take as much as they can see, but although we know there are 'fingers' of tumour extending beyond the visible margin, by trying to remove tissue beyond this margin would result in disability - therefore 'microscopic removal is not possible. In contrast radiotherapy is designed to extend beyond the visible margins of the tumour and thereby catch as many active cells as possible. However, if even a small number of tumour cells escape the radiation then the process of tumour growth continues. Prof Jones says that each treatment of the planned 30 kills about 80% of cells, which means there is a decreasing number at each treatment, but there is never total eradication. Prof will, very occasionally, give a second course of radiotherapy, after one year from the first course. Chemotherapy can be used as necessary, and as tolerated, and alternative drugs are available.
Q5 If the tumour does not respond to treatment and continues to grow do we have any idea what the next phase will be like? Deb's previous symptoms - headache, dizziness - appear to be due to the 'mass effect' i.e. the tumour pressing on other parts of the brain. Am I correct in understanding that this glioblastoma could spread to other parts of the brain and produce different symptoms?
A5 People respond differently to the treatments and it is very difficult to predict an individual's response, although radiation is considered to be pretty effective. We would expect to do a scan roughly 3 months after completion of the radiotherapy to give a baseline, and subsequent scans then enable comparison. Radiation can distort the images of brain tissue on scan in the early period which can lead to assumptions that the tumour has not responded, whereas in fact the images are of 'radiation effects' Both Mr Kay and the Prof suggested that surgery may become more feasible in the future, if there is significant tumour shrinkage following the treatment.
Q6 I understand that in the age group 45 - 59 about 160 men and 70 women are diagnosed with brain tumours per year in the UK. So very rare in this age group. Prof Jones also said that Debs was not a 'classical' GBM because it was largely benign with aggressive 'hot-spots'. Does this make what Deb has very rare? How much experience do we have in treating this type/size of tumour?
A6 I think it is unhelpful to think in terms of 'hot spots' in the tumour. While there may be areas of varying activity, this must be treated as a GBM. The radio- and chemotherapy is most effective approach in high-grade tumours - i.e. the most rapidly growing (and therefore most susceptible) cells are most likely to be damaged; however, they are also most likely to recur. There are approximately 4000 new cases of primary malignant brain tumour (including GBM) in England and Wales each year. As you know these are graded, and it is the high grade tumours (3-4) that require treatment - the more aggressive the tumour, the more aggressive the treatment. Radiotherapy is the standard approach, and radio/chemotherapy is the 'gold standard in GBM. These tumours make up less than 2% of all new cancer diagnoses, so they are already rare. The term Glioblastoma Multiforme does not refer to a discrete form of tumour. Rather it is a histological description of the cell activity seen in a tumour. So, oligodendrogliomas, astrocytomas, and ependymomas are reclassified as GBM when they reach Grade 4. I don't think that within our patient population it is particularly unusual to have a tumour with areas of mixed activity. Choices of treatment are not influenced by what the tumour has arisen from, but by what it is classified as now.
Q7 What is the likelihood that the malignant cells will spread to other areas of the brain? Does their location and/or size may make this more or less likely to happen?
A7 Spread from GBM outside of the nervous system is very, very rare, and even into the spine is rare. It can however spread within brain matter and is said to infiltrate along 'white matter tracts'. This can happen despite the treatments mentioned above. Hence the need for regular scans. I wouldn't be able to say at this stage whether this is likely or not, and it does not necessarily depend on tumour size or location
Radiotherapy
For general information on radiotherapy see Annex 2
Q8 Please could you clarify the overall purpose of the radiotherapy? Is the aim of the treatment to shrink the overall tumour or focus on the hot spots? How deep are these malignant cells – can radiotherapy reach these areas effectively? `
A8 Radiotherapy is most effective on rapidly dividing cells i.e. tumour cells. As 'brain cells' do not divide - we have a set number from early infancy, then the radiation kills cancerous cells rather than the brain cells. However, it will still cause irritation and inflammation to non-cancerous cells. The effects of the radiotherapy usually start about half way into the treatment and can still be effective for several weeks after completion of the 6 weeks. Radiotherapy is effective on active cells, but cells have a life cycle. This means they have resting/dormant phases and active phases - the therapy acts on cells in their active phase. However, not all cells are active or resting at the same time. So, some dormant cells can become active after treatment effects have ended, and hence tumour recurrence. In addition, not everyone is susceptible to the effects of Temodal and will only get reduced beneficial effects.
Chemotherapy
For general information on chemotherapy see Annex 3
Q9 How does the temozolimide actually work?
A9 Temozolomide is a 'methylating' agent, and acts by blocking the repair mechanism of DNA. The effect of radiotherapy, and many cytotoxic drugs is to kill tumour cells by damaging their DNA - then as they split to duplicate the new ones are damaged and die. So, the radiotherapy damages the DNA of tumour cells, which then cannot repair themselves due to the action of the Temodal, and die.
Q10 I understand that although originally GBM was not thought to be very sensitive to chemotherapy, there is now a lot of evidence from randomised trials showing that temozolimide, taken together with radiotherapy, improves survival time and delays disease progression, compared with radio alone (by about 15%). But the treatment toxicity of a combined regimen can be substantial. Can you tell me what the likely impact on quality of life will be during treatment and how long can you expect it to last i.e. is there a bit more information as to what is to be expected in the next 6 months when having chemo, radio and steroids together?
A10 Temodal is much better tolerated than the older drugs. It is taken orally, and therefore has less of a systemic effect - less nausea and hair loss. But it can increase risk of infection and bruising/bleeding because of its effects on the immune system and bone marrow production.
Q11 If we do not get the funding for chemo, is there another drug Deb can take? If so what are the success rates for this?
A11 If the request for Temodal is turned down then we can appeal and have it reconsidered. However, if it looks as if this will drag on we would not delay starting the radiotherapy without it. There are other chemotherapy agents that are still commonly used for high-grade tumours and they are effective. But, as you say, Temodal has been shown to influence outcome, by on average two and a half months - but it's impossible to equate this to an individual. We would normally use Temodal as first line and if there were to be tumour recurrence then we would consider the older drugs. I could write reams on protocols and side effects for these drugs, but can we leave this until or if the eventuality arises.
Q12 Are there any ongoing clinical trials we could participate in? Are there newer chemo drugs that are not yet approved but are being assessed in trials?
A12 Drug trials are one way of gaining access to newer treatments. However, randomised controlled trials, by their nature mean the person has a 50/50 chance of getting the new treatment or the established standard treatment. We have been recruiting ourselves under Prof Cruikshank (for the Herpes simplex virus) but this is currently on hold. There are of course trials elsewhere in the country and you can enquire yourself whether Deb may be eligible.
Deb’s Brain Tumour
Correspondence with Fred Berki, Macmillan Clinical Nurse Specialist Neuro Oncology, Queen Elizabeth Hospital, Birmingham
Questions and Answers
Brain Tumour
For general information on brain tumours see Annex 1
Q1 What is the likelihood that the malignant cells will spread to other areas of the brain? Does their location and/or size may make this more or less likely to happen?
A1 Spread from GBM outside of the nervous system is very, very rare, and even into the spine is rare. It can however spread within brain matter and is said to infiltrate along 'white matter tracts'. This can happen despite the treatments mentioned above. Hence the need for regular scans. I wouldn't be able to say at this stage whether this is likely or not, and it does not necessarily depend on tumour size or location
Q2 Does the 30 - 40 % of the tumour that Mr Kay said he would be able to remove include the 'active' areas of the grade 4 tumour? If this is so, doesn't it make surgery a more attractive option?
A2 High grade glioma -type tumours often are not uniform in their makeup - the cells can have elements of Grade 3 and 4 activity i.e. different levels of activity and a single biopsy only gives a snap-shot of that part of the tumour. Also, if this is a tumour that has been there for a long time then much of the active elements will around the outer part, and the middle can be composed of necrotic (dead) or calcified cells. The tumour is also bi-frontal, deep, and up against the ventricles (the fluid-filled spaces in the centre of the brain) which makes surgery complicated. I think, therefore, that if Mr Kay did remove 30-40% of the tumour it would be from the area where it is most accessible, least likely to cause disability, but at the same time least likely to reduce possibility of symptoms - I think if the benefits of surgery clearly outweighed any risks then it would have been offered more emphatically.
Q3 I am still not sure what it is about the tumour that kills you. I asked Mr Kay this question yesterday and I think he said it wasn't the 'mass effect' but the 'pathology' of the tumour. Can you clarify what this means?
A3 These tumours have several detrimental effects; they create a shell of fluid around them (oedema) which causes pressure effects on the brain, which is usually 'generalised' (as opposed to 'localised') and usually causes headache or drowsiness/confusion - localised effects are usually speech problems or limb weaknesses and are associated with more discrete areas of the brain. If not controlled then the increasing oedema compresses the brain and function is gradually impaired and eventually fails - this is controlled by the use of steroids. Similarly as the tumour itself grows, 'mass-effect', it causes rising pressure with the same results as the oedema, but this is minimally responsive to steroids. Finally, the cells of the tumour, which split and multiply rapidly (the pathology) aggressively infiltrate surrounding brain tissue destroying function gradually. It is the action of these processes combined that have the detrimental effect.
Q4 Mr Kay described the tumour as being diffuse and not having clear boundaries. He said parts of the tumour not visible on the scan were extending into other parts of the brain. Will the radio/chemotherapy deal with this?
A4 High grade gliomas do not have a distinct border - although they may appear to be clearly defined on a scan, the edge of the tumour merges with healthy brain. During surgery the surgeon attempts 'macroscopic' removal, i.e. they take as much as they can see, but although we know there are 'fingers' of tumour extending beyond the visible margin, by trying to remove tissue beyond this margin would result in disability - therefore 'microscopic removal is not possible. In contrast radiotherapy is designed to extend beyond the visible margins of the tumour and thereby catch as many active cells as possible. However, if even a small number of tumour cells escape the radiation then the process of tumour growth continues. Prof Jones says that each treatment of the planned 30 kills about 80% of cells, which means there is a decreasing number at each treatment, but there is never total eradication. Prof will, very occasionally, give a second course of radiotherapy, after one year from the first course. Chemotherapy can be used as necessary, and as tolerated, and alternative drugs are available.
Q5 If the tumour does not respond to treatment and continues to grow do we have any idea what the next phase will be like? Deb's previous symptoms - headache, dizziness - appear to be due to the 'mass effect' i.e. the tumour pressing on other parts of the brain. Am I correct in understanding that this glioblastoma could spread to other parts of the brain and produce different symptoms?
A5 People respond differently to the treatments and it is very difficult to predict an individual's response, although radiation is considered to be pretty effective. We would expect to do a scan roughly 3 months after completion of the radiotherapy to give a baseline, and subsequent scans then enable comparison. Radiation can distort the images of brain tissue on scan in the early period which can lead to assumptions that the tumour has not responded, whereas in fact the images are of 'radiation effects' Both Mr Kay and the Prof suggested that surgery may become more feasible in the future, if there is significant tumour shrinkage following the treatment.
Q6 I understand that in the age group 45 - 59 about 160 men and 70 women are diagnosed with brain tumours per year in the UK. So very rare in this age group. Prof Jones also said that Debs was not a 'classical' GBM because it was largely benign with aggressive 'hot-spots'. Does this make what Deb has very rare? How much experience do we have in treating this type/size of tumour?
A6 I think it is unhelpful to think in terms of 'hot spots' in the tumour. While there may be areas of varying activity, this must be treated as a GBM. The radio- and chemotherapy is most effective approach in high-grade tumours - i.e. the most rapidly growing (and therefore most susceptible) cells are most likely to be damaged; however, they are also most likely to recur. There are approximately 4000 new cases of primary malignant brain tumour (including GBM) in England and Wales each year. As you know these are graded, and it is the high grade tumours (3-4) that require treatment - the more aggressive the tumour, the more aggressive the treatment. Radiotherapy is the standard approach, and radio/chemotherapy is the 'gold standard in GBM. These tumours make up less than 2% of all new cancer diagnoses, so they are already rare. The term Glioblastoma Multiforme does not refer to a discrete form of tumour. Rather it is a histological description of the cell activity seen in a tumour. So, oligodendrogliomas, astrocytomas, and ependymomas are reclassified as GBM when they reach Grade 4. I don't think that within our patient population it is particularly unusual to have a tumour with areas of mixed activity. Choices of treatment are not influenced by what the tumour has arisen from, but by what it is classified as now.
Q7 What is the likelihood that the malignant cells will spread to other areas of the brain? Does their location and/or size may make this more or less likely to happen?
A7 Spread from GBM outside of the nervous system is very, very rare, and even into the spine is rare. It can however spread within brain matter and is said to infiltrate along 'white matter tracts'. This can happen despite the treatments mentioned above. Hence the need for regular scans. I wouldn't be able to say at this stage whether this is likely or not, and it does not necessarily depend on tumour size or location
Radiotherapy
For general information on radiotherapy see Annex 2
Q8 Please could you clarify the overall purpose of the radiotherapy? Is the aim of the treatment to shrink the overall tumour or focus on the hot spots? How deep are these malignant cells – can radiotherapy reach these areas effectively? `
A8 Radiotherapy is most effective on rapidly dividing cells i.e. tumour cells. As 'brain cells' do not divide - we have a set number from early infancy, then the radiation kills cancerous cells rather than the brain cells. However, it will still cause irritation and inflammation to non-cancerous cells. The effects of the radiotherapy usually start about half way into the treatment and can still be effective for several weeks after completion of the 6 weeks. Radiotherapy is effective on active cells, but cells have a life cycle. This means they have resting/dormant phases and active phases - the therapy acts on cells in their active phase. However, not all cells are active or resting at the same time. So, some dormant cells can become active after treatment effects have ended, and hence tumour recurrence. In addition, not everyone is susceptible to the effects of Temodal and will only get reduced beneficial effects.
Chemotherapy
For general information on chemotherapy see Annex 3
Q9 How does the temozolimide actually work?
A9 Temozolomide is a 'methylating' agent, and acts by blocking the repair mechanism of DNA. The effect of radiotherapy, and many cytotoxic drugs is to kill tumour cells by damaging their DNA - then as they split to duplicate the new ones are damaged and die. So, the radiotherapy damages the DNA of tumour cells, which then cannot repair themselves due to the action of the Temodal, and die.
Q10 I understand that although originally GBM was not thought to be very sensitive to chemotherapy, there is now a lot of evidence from randomised trials showing that temozolimide, taken together with radiotherapy, improves survival time and delays disease progression, compared with radio alone (by about 15%). But the treatment toxicity of a combined regimen can be substantial. Can you tell me what the likely impact on quality of life will be during treatment and how long can you expect it to last i.e. is there a bit more information as to what is to be expected in the next 6 months when having chemo, radio and steroids together?
A10 Temodal is much better tolerated than the older drugs. It is taken orally, and therefore has less of a systemic effect - less nausea and hair loss. But it can increase risk of infection and bruising/bleeding because of its effects on the immune system and bone marrow production.
Q11 If we do not get the funding for chemo, is there another drug Deb can take? If so what are the success rates for this?
A11 If the request for Temodal is turned down then we can appeal and have it reconsidered. However, if it looks as if this will drag on we would not delay starting the radiotherapy without it. There are other chemotherapy agents that are still commonly used for high-grade tumours and they are effective. But, as you say, Temodal has been shown to influence outcome, by on average two and a half months - but it's impossible to equate this to an individual. We would normally use Temodal as first line and if there were to be tumour recurrence then we would consider the older drugs. I could write reams on protocols and side effects for these drugs, but can we leave this until or if the eventuality arises.
Q12 Are there any ongoing clinical trials we could participate in? Are there newer chemo drugs that are not yet approved but are being assessed in trials?
A12 Drug trials are one way of gaining access to newer treatments. However, randomised controlled trials, by their nature mean the person has a 50/50 chance of getting the new treatment or the established standard treatment. We have been recruiting ourselves under Prof Cruikshank (for the Herpes simplex virus) but this is currently on hold. There are of course trials elsewhere in the country and you can enquire yourself whether Deb may be eligible.
08 July 2008 - Meeting with Mr Kay, Queen Elizabeth Hospital
Notes of meeting with Mr Kay, Consultant Neurosurgeon and Professor Jones, Consultant Oncologist on 08 July
Brain Tumour Update
Appointment at Queen Elizabeth Hospital, Birmingham – Neurosciences Clinic.
Date : 08 July 2008
Meeting with Mr Kay, Consultant Neurosurgeon, Fred Berki, McMillan Clinical Nurse Specialist
Mr Kay confirmed results of the biopsy, parts of Deb’s tumour are very aggressive. (Tumour type: glioblastoma multiforme – a grade 4 glioma tumour). We then discussed possible removal of part of the tumour (30-40%?)
Advantages of removal are that it would create more room and reduce “mass effect”. It may also reduce the requirement for steroids.
Disadvantages of removal are that it would not improve survival time for Deb. Like any operation there would be risk of infection and also stoke and epileptic fits. Could also mean at least a 6 week delay in radiotherapy/chemotherapy treatment. Deb made the decision not to go ahead with surgery.
Prognosis – Mr Kay said that this tumour was the most aggressive type but there was a wide range of outcomes. The average life span was from diagnosis was between 1 year and 18 months. However, many of the people who have this type of tumour are much older and have a shorter life expectancy. Others last 4-5 years or longer. Each person is different and reacts differently to treatment.
Mr Kay said we should be positive for the following reasons
1 Deb was young/fit and healthy and that makes a big difference to the outcome. Many of the people who die within a few months of diagnosis are much older.
2 That from the period of the first scan to the biopsy scan there was no apparent growth in the size of the tumour.
3 That there is a good chance that the tumour will respond to treatment.
We then met with Professor Jones who is the Consultant Oncologist who will now put a treatment plan together for Deb.
Reviewed the various scans on the computer and tumour was bigger than we thought. It is deep in the brain. The scans revealed that most of the tumour was benign, low grade and only a small portion was of the aggressive type. Radiotherapy will hopefully stop the tumour growing and sterilise a very high proportion of the cells. But because of the enormous number of cells there will be a few left that will not be eradicated. It is how rapidly these surviving cells re-grow that determines the effectiveness of the treatment.
We discussed the proposed treatment which will consist of both radiotherapy and chemotherapy.
The Treatment Plan
Radiotherapy will consist of Deb attending the QE Hospital within the next 7-10 days to have a plastic mask made for her head and neck. The purpose of the mask is to ensure that her head is in the same position every time radiotherapy is applied.
CT Scan will then be taken with mask fitted and a plan of treatment will be drawn up. Marks will be made on the mask to indicate where radiotherapy needs to be applied.
We will then meet with Professor Jones on Tuesday 29th July to discuss the treatment plan he has devised (ie amount of radiotherapy and chemotherapy).
Radiotherapy - is likely to be 30 treatments over 6 weeks Monday to Friday. Possible side effects – tiredness, hair loss, skin irritation, headache, stroke.
Chemotherapy – Temozolomide (Temodal)
Fred Berki and Professor Jones will this afternoon put an application in for funding (£12,000) from the PCT for Deb to be given this drug for her treatment plan. The drug is only prescribed at present for patients with brain tumours following surgery. But, Professor Jones feels that it would be beneficial for Deb to have this drug and hopes that the application will be successful given Deb’s young age and lack of symptoms from the tumour.
The chemotherapy will be taken every day in pill form during radiotherapy and for then on monthly cycles for at least 6 months.
Possible side effects – sickness/vomiting/constipation. The drug also affects bone marrow and white blood cells so there is an increase risk of infection or bruising/bleeding.
Reduction in the tumour will not be evident until some months after therapy when a CT scan will be taken.
Professor Jones stressed that this tumour was not a classical Glioblastoma in that most of the tumour was low grade. He was therefore positive about the outcome of the treatment and mentioned that he’d had one patient survived for over 10 years.
We’ve talked about all of this with Sam and Kate which is an enormous amount to take on board. We’re all positive. We need you to be positive with us and I know you all will be.
Brain Tumour Update
Appointment at Queen Elizabeth Hospital, Birmingham – Neurosciences Clinic.
Date : 08 July 2008
Meeting with Mr Kay, Consultant Neurosurgeon, Fred Berki, McMillan Clinical Nurse Specialist
Mr Kay confirmed results of the biopsy, parts of Deb’s tumour are very aggressive. (Tumour type: glioblastoma multiforme – a grade 4 glioma tumour). We then discussed possible removal of part of the tumour (30-40%?)
Advantages of removal are that it would create more room and reduce “mass effect”. It may also reduce the requirement for steroids.
Disadvantages of removal are that it would not improve survival time for Deb. Like any operation there would be risk of infection and also stoke and epileptic fits. Could also mean at least a 6 week delay in radiotherapy/chemotherapy treatment. Deb made the decision not to go ahead with surgery.
Prognosis – Mr Kay said that this tumour was the most aggressive type but there was a wide range of outcomes. The average life span was from diagnosis was between 1 year and 18 months. However, many of the people who have this type of tumour are much older and have a shorter life expectancy. Others last 4-5 years or longer. Each person is different and reacts differently to treatment.
Mr Kay said we should be positive for the following reasons
1 Deb was young/fit and healthy and that makes a big difference to the outcome. Many of the people who die within a few months of diagnosis are much older.
2 That from the period of the first scan to the biopsy scan there was no apparent growth in the size of the tumour.
3 That there is a good chance that the tumour will respond to treatment.
We then met with Professor Jones who is the Consultant Oncologist who will now put a treatment plan together for Deb.
Reviewed the various scans on the computer and tumour was bigger than we thought. It is deep in the brain. The scans revealed that most of the tumour was benign, low grade and only a small portion was of the aggressive type. Radiotherapy will hopefully stop the tumour growing and sterilise a very high proportion of the cells. But because of the enormous number of cells there will be a few left that will not be eradicated. It is how rapidly these surviving cells re-grow that determines the effectiveness of the treatment.
We discussed the proposed treatment which will consist of both radiotherapy and chemotherapy.
The Treatment Plan
Radiotherapy will consist of Deb attending the QE Hospital within the next 7-10 days to have a plastic mask made for her head and neck. The purpose of the mask is to ensure that her head is in the same position every time radiotherapy is applied.
CT Scan will then be taken with mask fitted and a plan of treatment will be drawn up. Marks will be made on the mask to indicate where radiotherapy needs to be applied.
We will then meet with Professor Jones on Tuesday 29th July to discuss the treatment plan he has devised (ie amount of radiotherapy and chemotherapy).
Radiotherapy - is likely to be 30 treatments over 6 weeks Monday to Friday. Possible side effects – tiredness, hair loss, skin irritation, headache, stroke.
Chemotherapy – Temozolomide (Temodal)
Fred Berki and Professor Jones will this afternoon put an application in for funding (£12,000) from the PCT for Deb to be given this drug for her treatment plan. The drug is only prescribed at present for patients with brain tumours following surgery. But, Professor Jones feels that it would be beneficial for Deb to have this drug and hopes that the application will be successful given Deb’s young age and lack of symptoms from the tumour.
The chemotherapy will be taken every day in pill form during radiotherapy and for then on monthly cycles for at least 6 months.
Possible side effects – sickness/vomiting/constipation. The drug also affects bone marrow and white blood cells so there is an increase risk of infection or bruising/bleeding.
Reduction in the tumour will not be evident until some months after therapy when a CT scan will be taken.
Professor Jones stressed that this tumour was not a classical Glioblastoma in that most of the tumour was low grade. He was therefore positive about the outcome of the treatment and mentioned that he’d had one patient survived for over 10 years.
We’ve talked about all of this with Sam and Kate which is an enormous amount to take on board. We’re all positive. We need you to be positive with us and I know you all will be.
19 June 2008 - Biopsy at Queen Elizabeth Hospital
16 June 08
Saw Kerry for pre-admission screening at QEH for the biopsy which will be carried out on Thursday the 19 June. Discussed whether biopsy would be carried out under general or local anaesthetic. Lying awake for an hour with your head clamped in a frame while someone drills holes in your skull does not sound an attractive idea so Deb opted for a general anaesthetic. Deb will have a piece of her head shaved. They will attach the frame to her head in 3 or 4 places. She will be scanned in the frame to provide accurate location for the tumour for the biopsy. She is likely to be discharged on the Sunday and we will get the biopsy results in a couple of weeks.
Deb gave urine and blood samples and was screened for MRSA.
17 June 08
CT scan 09:15 QEH.
18 June 08
Deb admitted to hospital for biopsy - Ward East Lower A, Green Zone. Called in early so MRI scan could be carried out but in the end this was not done. On admission saw locum Dr Lawrence Riley. There will be CT scan tomorrow to get coordinates to pin point position for the biopsy (active parts of the tumour). We talked about the risks associated with the procedure - seizure and internal bleeding. The procedure itself is relatively quick but fitting the frame etc takes the time (he estimated about 2 hours).
19 June 08
Biopsy due to take early in the morning but postponed because no anaesthetist was available. We were told Deb would have to be discharged and return the following week but anaesthetist found and biopsy took place at 14:30.
20 June 08
Deb discharged at 12:30. No after effects from the biopsy/anaesthetic. Appointment made to see Mr Kay to discuss the results from the biopsy on 8 July 08.
Saw Kerry for pre-admission screening at QEH for the biopsy which will be carried out on Thursday the 19 June. Discussed whether biopsy would be carried out under general or local anaesthetic. Lying awake for an hour with your head clamped in a frame while someone drills holes in your skull does not sound an attractive idea so Deb opted for a general anaesthetic. Deb will have a piece of her head shaved. They will attach the frame to her head in 3 or 4 places. She will be scanned in the frame to provide accurate location for the tumour for the biopsy. She is likely to be discharged on the Sunday and we will get the biopsy results in a couple of weeks.
Deb gave urine and blood samples and was screened for MRSA.
17 June 08
CT scan 09:15 QEH.
18 June 08
Deb admitted to hospital for biopsy - Ward East Lower A, Green Zone. Called in early so MRI scan could be carried out but in the end this was not done. On admission saw locum Dr Lawrence Riley. There will be CT scan tomorrow to get coordinates to pin point position for the biopsy (active parts of the tumour). We talked about the risks associated with the procedure - seizure and internal bleeding. The procedure itself is relatively quick but fitting the frame etc takes the time (he estimated about 2 hours).
19 June 08
Biopsy due to take early in the morning but postponed because no anaesthetist was available. We were told Deb would have to be discharged and return the following week but anaesthetist found and biopsy took place at 14:30.
20 June 08
Deb discharged at 12:30. No after effects from the biopsy/anaesthetic. Appointment made to see Mr Kay to discuss the results from the biopsy on 8 July 08.
Saturday, 2 August 2008
12 June 08 - Side effects from the steroids
Deb and Jacqui
Deb is on the steroid Dexamethasone. The dose will vary during her treatment but at present it is 2 x 2 mg tablets per day. Deb has some side effects from taking the steroids including:
- Cushingoid face ('moon' face)
- Weight gain
- Inability to sleep
- Increased appetite
- Eye disorders
- Candidiasis (thrush)
Friday, 1 August 2008
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