HM Medical Clinic

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Issue 4 - Feb 11
and Causes of Brain Tumours, Radiotherapy, Basic Anatomy, Tumour Recurrence and During International Brain Medication Management. Tumour Awareness week, 1st to Four years ago NOgIN was Our final session was 7th November 2010, we once launched to support patients extremely successful with two again held our primary annual and their families whose lives are presentations from patients. I fundraiser. Staff across the affected by brain tumours. With am sure the audience will agree Westmead hospitals wore their thanks to all of our presenters who that both patients (and husband) bright purple "NOgIN" polo have given up their time to present did an amazing job sharing their shirts throughout the week whilst at our information nights we are experiences with the audience. volunteering to assist with our excited to continue to provide this The program for 2011 will be raffle and BBQ. This is the third service in Western Sydney.
posted to all patients on our year we have held this event, data base and available on the with our raffle prizes growing 2010 Developments each year. The first prize was once • "Inaugral Carers Only Night" In
• Nursing Scholarship: Nurses
again a $1500 glass splashback June we held our first specific in Western Sydney can now donated by DecoGlaze. Our session for carers. The evening apply to NOgIN for education thanks go to Mr. Bill Lockett, was highly evaluated as carers assistance to enhance their Wendy Kelly and Denis Trimble, had the opportunity to engage knowledge and skills in the care associates of our support group, with our panel of experts in a of patients with brain tumours.
who either donated goods or relaxed setting, with an amazing volunteered their time to help. buffet sponsored by Sodexo. • Nursing paper published: Diane
Many other local businesses also Some comments from the Lear and Emma Everingham donated goods to support the evening included: "The social published a ‘ NOgIN: Three raffle and food for the BBQ. With setting was conducive to open Year Review" paper in the the amazing efforts of all these discussion", ‘Learning that we Australasian Journal Of people and the local businesses are not alone", "Finding out Neuroscience Nursing Vol 20 No that supported us, we were able more about palliative care was 1 May 2010. Copies available on to raise funds for our NOgIN most beneficial". With specific the websites.
trust fund, held at the Westmead thanks to our expert panel: Medical Research Foundation. Dr Mark Dexter (Consultant Neurosurgeon), Dr Phillip Lee 2011 Meeting Dates: (Palliative Care Specialist), Matthew Sproates (Occupational Therapist) and Diane Lear (Clinical Nurse Consultant). Please see page 8 for details on the next Carers Night.
1st Sept "Carers Only Night" "NOgIN fundraising BBQ at • Information Nights continued
Westmead Private Hospital every second month at November 2010".
Westmead Private Hospital. Topics included: The Benefits 7pm - 9pm Conference Room Useful Web Addresses of Massage, Coping Strategies, Management of Seizures and Westmead Private Hospital Headaches, Current Research April 2010 - Session 1 • A place for everything and • Be selfish – don't take on other Coping After A Brian Tumour everything in it's place (eg; use people's problems, put yourself the same place to hang up keys) Presented by: Diane Whiting, Clinical Psychologist, Brian Injury • Use "post it" notes • Limit other stressors in your life Rehabilitation Unit, Liverpool • Mobile phone – use as a diary for appointments or contact list • Try to maintain normal routines There are varying emotions • A diary or calendar as closely as you can experienced during the three • Don't be afraid to be creative stages of a disease process, or use different strategies (eg; following diagnosis, during whiteboard timetable) treatment and during the recovery phase as either a survivor or Radiotherapy for Brian Tumours during palliation. Patient's often Following treatment for a brain experience behavioral, emotional Presented by: Dr Jayamohan., tumour, most patient's can only and cognitive changes which may Radiation Oncologist, Westmead concentrate on one thing at a time and have difficulty multi Stage of Grieving
tasking. Fatigue and emotion can Some Facts
make it harder to concentrate and • Denial (the refusal to face the • With brain tumours each patient maintain attention. reality of the loss) is different, therefore each • Acknowledge the problem exists treatment is different. Well • Anger (protest against the meant comments from family • Organise your environment and friends are not always • Bargaining (attempt to • Use a cue card negotiate the reality) • Know your limitations (eg; • Radiotherapy is high energy • Depression (mourning the reduce external noise, restrict x rays (1000 times more than visitors if overwhelming) a normal xray), that damage the DNA of the tumour cells • Acceptance (making peace with • Undertake important tasks stopping the cells from dividing. when you are most awake and can concentrate better However it is difficult to deliver radiotherapy to just the tumour • Don't overload or try to take Create a positive lifestyle and cells and the normal cells in too much in at a time, keep control external factors (EASE) the brain may receive some stimulated, boredom can affect radiotherapy but these normal • Eating – the right foods and the your ability to think cells have the capacity to repair.
right portion helps to maintain • Take several breaks energy and control weight.
• Radiotherapy is usually given in • Break things down into smaller small fractions on a daily basis • Activity – remain active helps to normally over 6 weeks Monday enjoy life, such as maintaining to Friday, although dose and contact with friends and doing • Don't schedule too many duration may vary depending on activities on the same day the size and type of the tumour. • Sleep – poor sleep can lead to The daily doses allow the normal tiredness and irritability, rest cells to repair and gain function, • Word finding difficulties "tip of when you need to.
tumour cells do not repair.
• Exercise – can generate a sense • Radiation effects continue 3-4 • Use of the wrong word of well being and reduce stress months after the completion of and tension.
• Going blank during a • If you are receiving radiotherapy • Difficulty understanding what and chemotherapy together you • Cognitive strategies people are saying will need to closely monitor your • Try to describe what you want to blood count as you are more prone to infections.
• Formal counseling through a say or use a similar word social worker or psychologist • It is very unusual for a brain tumour to metastasise to Memory or Cognitive Changes
• Use your support networks – another part of the body.
don't be too proud or afraid to • Prior to commencing radiotherapy treatment, a mask localising the area using MRI Q. Do brain tumours cause other is made to keep the head still scan images. Primarily used for during treatment and also to small benign tumours less than A. Primary brain tumours do not enable the radiation oncologist 2cms in size such as acoustic metastasise (spread) to other to mark the targeted area. The parts of the body, however mask may cause claustrophobia Q. Why is a course of radiotherapy other cancers can cause in some patient's, if this is the metastasis in the brain.
case, notify your radiation A. Following radiotherapy the Q. Are there areas in the normal cells have reached brain better able to tolerate • There are other types of their maximum repair capacity, radiotherapy than other areas? radiotherapy used world wide therefore we do not repeat a such as, the gamma knife which A. The main part of the brain or radiotherapy course. There may is not available in Australia. cerebrum can take larger doses be a few exceptions such as a However radiosurgery is the of radiotherapy. Some parts long survival since the original same as the gamma knife and is of the brain e.g.; the visual available at Westmead Hospital. pathways are more sensitive In Australia radiotherapy is as Q. Why do normal cells repair to radiotherapy. Each patient's up to date and effective as and tumour cells are unable to treatment is individualised anywhere in the world.
where the brain and the tumour is mapped to determine the • Side effects of radiation include: A. Tumour cells have an unstable DNA and therefore are unable amount of radiotherapy they • immediate – tiredness, hair loss, to repair. Radiotherapy may will receive.
sore or blocked ears, nausea and control aggressive brain tumours vomiting is unusual and more but not completely remove common with chemotherapy. the tumour cells, therefore the • long term – loss of short tumour may remain dormant June 2010 - Session 1 term memory, occurrence of and reoccur.
Management of Headaches and secondary tumours although this Q. Can meningiomas be treated is extremely rare.
with radiotherapy? Presented by: Dr Mark Dexter, Q. Is the short term memory loss A. Meningiomas are usually Consultant Neurosurgeon, The benign and ideally treated by Westmead Hospitals A. It is very unusual for a return surgery. Some meningiomas are Classification of tumours
of short term memory, atypical and may require follow learning strategies for coping up with radiotherapy.
Primary – gliomas, meningiomas, mechanisms are very useful.
schwannomas, pituitary Q. Is a glioblastoma multiforme Q. Is the short term memory (GBM) one of the tumours loss because the radiotherapy treated for cell control? Secondary – metastasis from lung damages the brain? A. A GBM is a difficult tumour A. One of the functions of the to cure, however studies have Grading of tumours
cerebral cortex is storage of shown increases in duration Graded according to the World memory and the cerebral cortex of living when treated in Health Organisation (WHO) receives the majority of the conjunction with surgery, radiotherapy during treatment.
radiotherapy and chemotherapy.
Q. Are there different types of Q. Should you exercise during Clinical review, imaging (CT scan, A. Radiotherapy is given in two A. It is best not to do too much as you will tire easily, taking a long Conventional – usually given daily walk is preferable.
Surgery, medications, over a period of six weeks on a Q. What is whole brain Radiosurgery – given A. Whole brain radiotherapy is Headaches may be caused by stereotactically where the usually used for metastatic specific area is targeted by • increase in the pressure in the brain (intracranial pressure/ICP), • irritation of the coverings of the pain across the forehead with a brain (dural irritation) sensation of eye strain. Treated • Usually focal, close to the brain • healing of the bone and muscles with relaxation and simple tumour or surgical site following surgery analgesia, avoid narcotics.
• Usually self limiting (stop by • cranial nerve involvement Q. Is it common to suffer (usually the 5th or trigeminal headaches after surgery? • Usually short in duration A. Headaches are dependent on • Usually occur in the first 7 days • tension and/or stress the site of the operation and most painful when the neck • Pain sensitive structures are the muscles have been involved.
Factors that lower the seizure
skin, skull bone, dura or covering of the brain and the blood Q. Is Amytriptyline used for vessels supplying the brain.
• Sleep deprivation Increased intracranial pressure
A. Often used for headaches with • Hyperventilation a low starting dose of 10mgs, when used for depression the • Photic (light) stimulation Headache is typically worse in the doses are higher. Medication morning and may be associated needs to be weaned slowly to with nausea and/or vomiting and prevent a reactive depression. visual changes. The headache is The same applies when certain due to brain swelling from the anticonvulsants such as Epilum tumour, associated oedema and are used for headaches.
possibly blockage of the brain fluid • Metabolic disturbances (cerebrospinal fluid). Q. Can you take Epilum with other Seizure first aid/What to do if you
witness a seizure
A. Yes, Epilum is metabolised • Swelling – steroids such as differently and won't interact if • Relax/don't panic Dexamethasone (decadron) or you are taking it for headaches.
• Avoid injury to the patient Q. What is the incidence of • Place the patient on their side • Removal of the tumour recurrence of meningiomas? • Call an ambulance • Drainage of the cerebrospinal A. This will depend on the fluid with an external ventricular grade of the tumour and the Q. Do you know when a seizure is drain (EVD) or shunt completeness of the removal. In a grade 1 meningioma it is A. Some people will get an aura unusual for a recurrence, in a or sensation such as a smell or A constant headache associated grade 2 meningioma there is a feeling sick in the stomach with photophobia and a sensitivity recurrence rate of 75%, a grade to noise, often caused by blood 2 tumour is usually treated with Q. Are panic attacks the same as products in the cerebrospinal fluid.
radiotherapy after surgery. If there has been complete removal A. No, panic attacks are often the recurrence rate is 7%.
called pseudo seizure Pain at the incision site or the site of the attachment of Q. Can seizures be controlled by muscle, which is associated with movement. Treated with mild A. Yes, in approximately 75% of analgesia and anti inflammatory Seizures and Driving Anti epileptic drugs/
Cranial nerve involvement
Presented by: Dr Mark Dexter, A burning or stabbing pain Consultant Neurosurgeon, The Prophylactic - to prevent seizures in the distribution of a nerve Westmead Hospitals (neuropathic pain). May be due to Seizures are the presenting Therapeutic - following a seizure pressure on a nerve. Treated with symptom in 26% of all patients 75% of seizures can be controlled anticonvulsants, anti depressants admitted with a brain tumour, and with medication and sometimes radiotherapy.
may also occur following surgery. Common drugs – Phenytoin They may be focal (affecting one (dilantin), Carbamazepine part of the brain), generalised or Headache is worse at the end of (tegretol), Epilum, Rivotril and the day, described as a band like

your surgery. There is no seizure • Can be administered capacity in the brainstem and • New drugs and treatments may intravenously or orally cerebellum, therefore patient's have unknown side effects with acoustic neuromas and • Not metabolised by the liver pituitary tumours are exempt • The drugs or treatment may be • Routine blood levels are not • You are not permitted to drive for 6 months following a seizure, Q.How many CT scans would be • Choice of anticonvulsant for or for 12 months if you have had too many in a lifetime? patient's taking Temodol as the many seizures or if you are an A. You need to look at the Temodol level decreases with necessity versus the risks. patient's taking Dilantin and • If you have neurological Current scanning techniques deficits such as memory loss or have improved and are much Side effects
decreased concentration you are quicker and therefore less not permitted to drive radiation. There is however a cumulative risk, particularly in young people.
Q. If you have had a removal of August 2010 - Session 1 a meningioma what are the chances of it growing back? Current Research in the Treatment • Dose required up to 3000mgs A. There are different types of meningiomas. 90% are grade Presented by: Prof Brian Owler Q. If you are taking 3000mgs a 1 tumours with a very minimal Consultant Neurosurgeon day, how do you know if it is chance of recurrence if the The Westmead Hospitals, Sydney enough if there are no blood tumour has been completely Adventist Hospital & Norwest resected. The risk of recurrence increases if there has been only A. If you are seizure free Research is based on the partial resection because of the Q. Do you always lose location of the tumour. Atypical consciousness in a tonic/clonic epidemiology and treatment and meningiomas (grade 2) require management of brain tumours.
additional radiotherapy because A. Yes, the patient will lose there is a risk of recurrence.
Who conducts the trials
awareness in a generalised Q. Is it safe to have another course Trials are typically multi centred and conducted both within Duration of therapy
Australia (COGNO) and overseas.
A. The general rule is a certain Prophylactic – sometimes only
dose of radiotherapy as it given for the first 7 days following affects the normal tissue also. surgery. Often six weeks to 3 • Care is provided by leading This will depend on the dose and the time frame between treatment. Patients may be able Therapeutic – ceased following 1
• Patients have access to new to have an extra focused boost year of seizure free period drugs and interventions (stereotactic) of radiotherapy.
Variable – individualised
• There is close monitoring of dependent on your particular health care and side effects pathology and whether • You play a more active role in radiotherapy was given after your own health care surgery. You will need to discuss this with your neurosurgeon/ • Opportunities to make a valuable contribution to research • If the study approach is found to be of benefit you may be one • Refer to the RTA guidelines for of the first to benefit from the specific instructions • The time you are not permitted Westmead Private Nurses with Ruth to drive following surgery is Neurosurgical patient dependent on the location of August 2010 - Session 2 the International Journal of October 2010 - Session 1 Aetiology of Brain Tumours Oncology 32: 1091-1103 in The Wonders of the Brain - 2008 reviewed a meta analysis Presented by: Prof Brian Owler of long term mobile use and Consultant Neurosurgeon The the association with brain Presented by: Dr Gordon Dandie, Westmead Hospitals, Sydney tumours. Another inter phone Consultant Neurosurgeon Adventist Hospital & Nowest study conducted in 2000- Westmead Hospital & Westmead 2004 established there was no increased risk unless phones had The brain is a complex organ been used with high use for • There are currently divided into two hemispheres and greater than 10 years.
approximately 450 new cases of four main lobes. Most tumours brain tumours per year, and they Q. Why were there so few develop in the main part of the account for 1.4% of all cancers numbers from France in the brain which is called the cerebrum.
in males and 1.2% in females. A tumour and swelling in these • Brain tumours are the most A. Some centres did not choose to lobes will cause deficits as outlined common solid tumours found in participate in the study.
Q. I have a cousin with two The frontal lobes are responsible
• Brain tumours are formed by daughters both diagnosed with for movement and power of the cells that grow out of control a meningioma, do you see a limb's, the expressive speech area, correlation in this? personality, sense of smell and regulation of behavioral and social • It is very rare for a brain tumour A. We often see families with to spread (metastasise) to other clusters of tumours, but there is parts of the body, but cancers no evidence to prove they are The temporal lobes control
from other parts of the body, memory, hearing, receptive such as the breast, lungs or speech or interpretation of speech Q. Would you suggest screening kidneys can spread to the brain.
and part of the visual pathways.
tests for families? Risk Factors
The parietal lobes control
A. Depends on the test. There is a geographical sense, ability to dress • Male - most common tumours in risk of tumours developing from and spacial orientation as well as males are gliomas radiation in young people from part of the visual pathways.
having multiple CT scans, MRI • Female - most common tumours scans are safer but not always The occipital lobes major function
in females are meningiomas • Race – mainly Caucasians Q. Is Avastin a good drug with • Age – most common in the over A. Your medical oncologist October 2010 - Session 2 • Family history – brain tumours can provide you with more are not considered genetic, but information on certain Tumour Recurrence and Grading the risk is slightly higher if there medications. In my experience Presented by: Dr Gordon Dandie, is a family member with a brain there have been good benefits Consultant Neurosurgeon for a long time. It has been used Westmead Hospital & Westmead in other types of cancers but the • Radiation - increased risk if you results have not been as positive are exposed to radiation at work Tumours are defined as either • Formaldehyde – pathologists benign where they compress the
Q. What is Gamma Knife? and embalmers who work with surrounding tissue but do not formaldehyde are at increased A. Gamma knife is a form of invade it. Malignant tumours
stereotactic radiotherapy, which have a tendency to invade the is focused to a small target. It is surrounding tissues and spread • Mobile phones – there have used for small tumours and has to distant sites in the body. It is been a lot of studies published exactly the same effect as the very unusual for a brain tumour in regards to the use of mobile linear accelerator machines that to metastasise to another part of phones and the incidence of are used in most hospitals.
the body. Tumours are classified brain tumours, which have been according to location, grade and inconclusive. A study in The World Health Organisation
dose whilst receiving (WHO) is used to standardise the • Unknown mechanism of action description and aggressiveness of • Side effects – upset stomach, • Mainly used for focal seizures increased appetite, insomnia, Grade 1 – benign and slow
• Avoid if their has been a weight gain, altered blood previous reaction to Phenytoin Grade 2 – can be malignant or non • Blood levels need to be
malignant. Relatively slow growing checked regularly • Simple analgesia but can sometimes recur as a • Side effects – low sodium levels higher grade tumour.
in the blood, hypersensitivity • No anti clotting effects Grade 3 – malignant tumours
• Well tolerated and often recur as a higher grade Ranitidine (Zantac) Grade 4 – malignant and very
aggressive, reproduce their cells • Modifies transmitter levels in • Prevents acid production • Protects against gastric erosions, • Useful in partial or absence stress ulcer formation • Side effects – decreased December 2010 - Session 1 • Acts in the stomach to block acid platelet function (clotting Common Medications in Brain • Interacts with other drugs such as Warfarin, anti fungals and Presented by: Dr Jacqueline • One of the newer anti epileptic McMaster, Consultant Neurosurgeon Westmead Hospital Anti Nausea agents
& Westmead Private Hospital • Unclear action, may block Medications are used to treat a • Increases stomach emptying symptom or complication.
• Best for partial seizures • Acts on the brain receptors to Seizures (anti epileptic
• Better tolerated than most anti inhibit nausea and vomiting medications) are administered if you have had a seizure or Q. Can you have vomiting without • Side effects - drowsiness if you are prone to having a seizure for a minimum of three A. Yes, this is caused by pressure months following neurosurgery, • Steroid 20-30 times stronger on the vomiting centre in the dependent on the location of the than natural steroids • Decreases the fluid in the Q. What can be done to prevent abnormal blood vessels of the • Prevents spread of abnormal A. There are a lot of newer anti electrical activity • Two primary roles in nausea medications that act on • Most common drug the vomiting centre.
• Used for most seizure types 1. Decreases brain swelling Q. Can you stay on steroids before and after continuously for a long time? • Can be given intravenously or neurosurgery and during A. Yes, usually on a lower maintenance dose. Being on • Side effects – cognitive (slow 2. Anti nausea actions related to high dose steroids for a long thinking, slowing of memory), brain swelling and treatment time can lose their efficiency.
liver disturbance, hypersensitivity Q. Can you take Tegretol and • Variable dosage, initially high Panadol together? • Blood levels need to be checked doses (e.g. 4mgs/ 4times a day), A. Both of these medications slowly weaned to a maintenance are metabolised in the liver. If

you have a normal functioning caused a ‘stir' shortly after arriving liver, you can still metabolise in ICU by setting off alarms on the both safely. Taking these two This is Linda's story as prepared by monitoring equipment. Nurses medications together is only a Martin and is a condensed version rushed over to ascertain what contraindication, your Doctor of a talk given by Linda and Martin was going on – her arms and legs will need to monitor your liver at the NOgIN meeting on 7th were moving up and down in December 2010. Linda's attitude the bed. Linda simply said "I'm Q. What are the long term side always prevails in situations of alright! I'm just checking to make effects of Keppra? adversity and while there is light- sure everything still works." She hearted style used here, this does was simply moving all her limbs A. Keppra is a relatively new not deny the seriousness of this to make sure. Linda was quickly drug with no long term studies, situation. This story is not meant despatched to a ward the next however all drugs are rigorously to be frivolous, nor make light of day and after 5 days in hospital, tested and controlled by the TGA anyone else's situation. recuperating, Linda was allowed prior to availability.
home. However before discharge Linda was diagnosed with a brain Q. How quickly should came the news that the pathology tumour on the morning of March Dexamethasone be weaned? of the tumour was not good – 27th 2007. We knew something it was malignant, and she was A. The rate of weaning is serious was going on when three in for a ‘fight'. Treatment with dependent on how long and doctors came into the bed cubicle both intensive radiation and at what dose you have been at Westmead Hospital. Linda had chemotherapy were her next taking Dexamethasone. For been referred to Westmead the example the higher the dose previous evening by our family and duration, the longer or GP, after a few days of flu like Six weeks later Linda started slower the weaning process. symptoms. No one expects to radiotherapy and chemotherapy Patients are often kept on a low hear that news – Linda reacted by – this lasted for 6 weeks. While or maintenance dose for a long saying to the doctors "It's just a various conversations leading up headache, give me some panadol. to these treatment, mentioned Treat the guy in the next bed, he's various side effects, it is hard Q. What should you do, if you to appreciate these until they forget to take your anti seizure occur. For Linda they occurred That afternoon, we arrived at "in spades", she became very Westmead Private Hospital to be A. This is dependent on the type nauseous, requiring considerable admitted for surgery the next day. of medication and how long anti nausea medication. That in First step, however, was a head you have been taking it. Take turn brings its own side effects. MRI, and this was a problem! the medication as soon as you For me, it was just a case of ‘hang Linda is claustrophobic and head remember if it is only a couple of on for the ride'. I was lucky in MRIs are probably one of the most hours or for a daily medication, regard to my work situation – my confining medical procedures only one day late. Missing employer was very understanding, a person can have. After some multiple doses of a medication allowing me basically to work ‘part 90 minutes of trying to convince such as Dilantin, will cause the time' about 4 hours a day. This Linda that it would be alright, the blood levels to drop and will allowed me to attend to Linda in radiographer gave up. We were take a long time to become the morning and complete some grateful for her patience, but therapeutic again if you just household chores, going to work it just wasn't going to happen. continue to take your regular mid morning but also leaving We then attended reception at dose. If you are unsure call your work around 2pm to transport about 6 pm for admission. The local doctor, the Neurosurgical Linda to radiation therapy. Being next day an MRI with sedation Registrar at Westmead Hospital a knowledge worker, most of my was arranged. Linda was still or the nursing staff from the work activity is email and phone apprehensive and I was allowed ward where you were cared for conversations. I don't need to be to stay in the MRI room, while the at work. There were many times MRI was underway. Fortunately I sat outside the radiation suite the sedative worked and Linda at The SAN Hospital, reading successfully completed the MRI.
and sending work emails while Later that day, Linda underwent Linda was being treated. Linda surgery to remove the tumour completed the radiotherapy in from her temporal lobe – this early June, but chemotherapy operation was 5 ½ hours long, continued for a further 6 months, and went well. Linda was in ICU until just prior Christmas when she The NOgIN Nursing Team at the overnight after surgery, and refused to continue – the side Inaugral Carers Night, June 2010

effects were making her too ill This immediately set her long acknowledge the wonderful work and miserable, and she wanted to steroid taper program ‘back on its of the many health professionals enjoy the Christmas period with heals'. It took some time for the who have been part of Linda's her family. After Christmas, with Tegretol reaction to work through story, all of her doctors (I won't the agreement of her doctor, she Linda's body – taking about 3 name them all here), the nursing did not resume chemotherapy. weeks. During this time, all her staff, various radiographers, and The next episode in this story skin peeled off - even the soles of a special mention to our dear concerns Linda's experience with her feet! Linda has since ceased friend Vicki who we've known for Dexamethasone (dex). Most other her dependency on artificial many years and who, coincidently, people are on ‘dex' for a number was a specialist nurse in the of months after surgery and while Since then Linda has been ‘well' "neuro ward" at Westmead receiving radiotherapy, and then and I am pleased to say all her Private Hospital when Linda was taper off the drug. Linda tapered scans for the past 3½ years have first diagnosed. Vicki was an off and ceased taking it just been clear. We sincerely hope that immense support for Linda and I before Christmas. Unfortunately Linda's Story continues like this during this time, and a wonderful her adrenal glands were very "resource" with her knowledge ‘relaxed' and did not kick back in again to make the natural steroid. This affected Linda after a busy Some reflections on this story Christmas day by making her very from Martin's point of view. I tired – she slept about 20 hours learnt the contemporary source a day for a week. It took a little of information in our society – the while for me to realise something Internet, is not a good place to go was wrong and it wasn't just a for information about cancer and simple case of a very exhausting cancer treatment when you are Christmas. Linda restarted the dex. personally involved. The statistics After another failed attempt to are stark and the many individual taper of dex during 2008, she was testimonials (or memorials) don't referred to an endocrinologist. help – they plant negativity in Guest speakers Martin & Linda at This doctor moved Linda from your mind. I learnt (some would NOgIN Meeting December 2010 Dexamethasone to Cortisone – this say the obvious) statistics on life allowed a gentler taper over many expectancy don't translate well months, avoiding her earlier issues. to individual cases - every case is International Brain Tumour She had almost completed this different. Doctors do tell you a alternate approach to wean off lot of information, but ask any artificial steroids, when the next questions anyhow. The trick is to 1 - 7th November 2010 event in Linda's story occurred. write it all down while you sit in front of them – take the time (they Recognition of our sponsors: Linda suffered a seizure in October are patient). Lastly as Linda often • DecoGlaze, Seven Hills (2008). A scary event when said in situations like this – "Take • Bungaree Butchery, Toongabbie never experienced before. Linda each day as it comes (don't think was admitted to hospital to be • Westmead Private Physio too far ahead)".
assessed after the seizure, going • Fernwood,Blacktown Club home again after 2 nights with a A brief comment on NOgIN, to • Catherine Hardman Tegretol medication regime. those who may not have attended • Rydges Parramatta a meeting yet. For Linda and I, Unfortunately Linda was referred • Cumberland Country Golf Club NOgIN has provided a venue to back to hospital four days later • Officeworks, Castle Hill meet people in a like situation with a massive reaction to the to ourselves. Getting the right • Arthurs' Restaurant, Kellyville Tegretol – she looked as if she had information is sometimes difficult • Archangel Gabriel Consultancy ‘gone 5 rounds in a boxing ring' especially when you are vulnerable • Sodexho – swollen face, red skin over her and apprehensive of what is • The Flower Factory, Westmead body like bad sunburn. There was going on. I have no hesitation in • Reliable Corporate cars a real concern that the swelling recommending NOgIN to other may affect her breathing, and she • Nepean Motor Group people and their carers – it is a was admitted to hospital again • Price Attack, Castle Hill wonderful arrangement, run by for observation and treatment. • Coca-Cola Amatil (Aust) Pty Ltd Emma and Diane, in a very caring The treatment for such an and professional manner. inflammation in the body is . • Westmead Private Pharmacy large doses of artificial steroids. As a final word, I wish to Information Sesssion Dates for 2011 Friday 13th May 2011The Menzies Hotel Westmead Private Hospital, Conference Room A free information day for (Ground Floor) - light refreshments are provided brain cancer patients and their Casual chat and supper families presented by the Cancer Institute NSW Oncology Group Neuro‐Oncology.
The day features educational sessions presented by brain cancer 1st Feb Benefits & Demonstration of a clinicians and professionals involved seated massage. Participation in all spectrums of care throughout the patient journey. There will be both adults and paediatric 5th April 1. Managing changes to thinking Diane Whiting and behaviour after diagnosis Clinical Psychologist For further information contact of a brain tumour Julie MacDonald on 8374 5683 or [email protected] 2. Chemotherapy for brain Medical Oncologist 7th June 1. Current research on the "Carers Only Night" treatment of brain tumours Consultant Neurosurgeon Book your seat for dinner 2. Are there any causes of brain with a panel of experts! When: Thursday 1st 2nd Aug 1. Palliative Care Options Palliative Care Consultant 2. Radiotherapy & treatment Where: Conference Room for brain tumours Radiation Oncologist Westmead Private 1st Sep "Carers Only Night" Panel Discussion - RSVP 1st Aug Bookings are essential as 4th Oct 1. Managing memory & cognitive Matthew Sproates numbers are limited Occupational Therapist 2. Financial Advise Cancer Council TBA RSVP to Emma on 837 8926 or email: everinghame@ 6th Dec 1. Management of seizures Dr Andrew Bleasel ramsayhealth.com.au by 2. Patient & partner stories Consultant Neurologist Disclaimer: This newsletter does not intend to replace individual treatment prescribed by your physician.
No part or whole of this newsletter may be reproduced without permission of the NOgIN coordinators/editors NOgIN would like to thank Westmead Private Hospital Executive Team for their ongoing support, providing the conference room, supper, free parking and making the publication of this newsletter possible.
Diane Lear
Clinical Nurse Consultant
Clinical Nurse Consultant
Westmead Private Hospital
02 9845 5555 Page: 09113
02 8837 8926

Source: http://www.westmeadprivatehospital.com.au/Our-Services/documents/NOgIN/WPH%20NOgIN%20Support%20N_Letter%200211.pdf