uses of dexamethasone in brain tumour

A number of questions have recently been asked in our email group about the use of the drug dexamethasone (commonly referred to as dex) in the management of brain tumour. Here are some notes that may be helpful, which should be read in conjunction with relevant parts of section 8 of our website, ozbraintumour.info. 

I am placing this note in the blog, in the open, because this is a subject of enormous importance to patient and carer, something that they really need to understand to get the best and safest results from use of this drug and to maximise quality of life.

In short, brain tumours do damage and eventually kill by crushing the brain. Dexamethasone is the most powerful anti-inflammatory drug available to oppose the inflammation and swelling in the brain caused along the way, thus reducing symptoms while ever possible, enhancing and prolonging life. At the same time, however, it is a powerful drug with some difficult side-effects, which means that its use cannot be routine or sustained for long periods. 

Someone asked if there was a lot of discussion of this also at the US-based brain tumor discussion group BRAINTMR. While I do not know the answer to that these days — having focused for many years now on this group for Australians — the issues are the same everywhere. 

Someone asked about limits to knowledge of use of dex in the medical profession. Relatively few doctors have experience in management of brain tumours and their awareness of dex is as the most powerful of corticosteroid drugs which are used mainly in rheumatological diseases, of joint inflammation and pain, and against inflammation generally. It is not a drug in general use in cancer treatment, its use in brain tumour reflects the fact that the brain is enclosed in the unyielding space inside the skull (intracranial space) where a foreign growth or angry swollen healthy tissues are problems because there is no spare room. 

Dex is about five times stronger, among the corticosteroid drugs, than prednisone, which in turn is about five times stronger than cortisone, which in turn is stronger than the drugs in things like Rinocort, sold over-the-counter for nasal inflammation, allergic reactions, or Pulmicort prescribed for lung and airway inflammation. All these are industrial products mimicking the structure and function of the hormone cortisol, which is produced in adult humans at the rate equal to about 0.7mg dex a day... the amount varies depending on our system's decisions about the amount needed, and depending on capacity to produce it. We need it to manage physiological pain and stress and oppose inflammation. 

The vicious cycle of pressure on the brain from a tumour includes these things:

• the tumour itself is a 'mass' exerting pressure, in the confined intracranial space
• the tumour, as it grows, produces considerable quantities of fluid, lactate
  
• there is pressure on healthy tissues which are then likely to swell and weep fluid (producing oedema (Americans say edema), causing more pressure
• neurosurgery, opening the skull and interfering variously, can anger and inflame healthy tissue
• chemotherapy is supposed to kill tumour cells (of course) and the death of cells causes inflammation
• radiotherapy, same as chemotherapy, kills cells and there is inflammation.

All of that feeds around upon itself in a vicious cycle: inflammation and swelling and fluid release causing an increase in pressure causing yet more inflammation, swelling and fluid release. All this together is 'mass effect'.

When a person presents with a brain tumour, the symptoms are not from the tumour itself, the tumour does not alter brain cells. The symptoms arise from the mass effect. Symptoms vary from person to person with exquisite differences because of the location of the mass effect and because of the brain's complexity and diversity of functions. If, over the course of disease, the location of the lesion remains the same, the symptoms may remain or grow from the initial symptoms experienced. There may be new symptoms if the mass effect becomes much greater or if there is a 'recurrence' of tumour in another location in the brain.

The use of dex thus becomes very important, to oppose symptoms, to prolong life and quality of life. In addition, consider the reality that as pressure builds, the impact on the brain is unlikely to be a simple graph line upwards, things break and there can be sudden deteriorations from which it may not be possible to recover.... so you take dex to avoid such catastrophic disease 'progression'.

It will be evident from the preceding paragraph that:

• dex may relieve symptoms, if there has not been irretrievable damage
• renewed symptoms call for consultation with a doctor about upping the dose of dex... it is possible that the symptoms may arise during the treatment cycle or just in variations of effectiveness of the dex day to day, so a brief boost in dose may be of value
• or renewed symptoms may mean that tumour is growing again, needing both management with dex and investigation and treatment if possible

It follows that it is important for patient and carer to report any substantial change in symptoms, any new symptoms, to the treating doctor... being a doctor familiar with use of dex in brain tumour. Do not expect every GP to be familiar with that, or every doctor on hand at emergency.

The need for complex management and higher dosing with dex will vary with the nature of the tumour, especially its aggressiveness... that is, if it is a higher grade tumour there will be more mass effect, more treatments, more changes in the situation.

NOW, WHY IT IS IMPORTANT TO GET OFF DEX IF YOU CAN.

Taking doses of corticosteroid higher than normal production will distort a wider array of steroidal hormone activity. The symptoms may be of Cushing's Syndrome. This may be unpleasant, it may be more serious. (NOTE also that the management of the hormones involved is in part by areas of the limbic system in the brain which can be impacted by tumour, depending on location, so some of the symptoms of Cushing's may be present in other circumstances. And these hormones can be disordered by stress of whatever kind and thus easily tipped further in some cases by smaller doses of dex.

Among important considerations to note are that the person taking dex is likely to have a big appetite and in any case gain weight. Also be aware that cortisol and thus dex are 'catabolic' substances, pulling minerals from bone and muscle (as is normal in daily exercise, but this is unrelieved) so that bones at the top of leg and arm become weak and dangerously brittle. Take care with contact sports and ski-ing!

There may also be a swing to diabetes symptoms, which need attention... the symptoms to watch for are frequent urination and great thirst. 

Unfortunately also, a small proportion of people experience violent psychiatric symptoms, psychosis, research here. The psychotic reaction is really different from the tendency in the Cushings Syndrome circumstance (see earlier link) for mood change and anxiety, which are in any case things one may experience in dealing with a brain tumour... Do seek support if the lesser symptoms become troubling. Do note that the psychosis problem is likely to emerge fairly swiftly, you will tend to know if this is going to happen pretty quickly. NOTE that to continue using dex in circumstances of psychosis is likely to require advice from another medical speciality, the psychiatrist, to administer anti-psychotic drugs.

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Given the hazards associated with use of corticosteroid drugs, among which dex is the biggie, there is a general reluctance to their use by many very sensible medical practitioners and definitely a desire for the patient to get down off the drug as soon as possible. You do not want a person aged 20 to have lifelong disability from inappropriately sustained corticosteroid therapy. However, the outlook for someone with an brain tumour is different, because the threat to life without dex may be very great. And quality of life may be seriously diminished without it.

Nevertheless, all along the way, efforts need to be taken to reduce the dose. If it has been up just for a few days, it may be reduced swiftly. If for longer, much more care in weaning... look to the Addison's symptoms, the opposite end of the spectrum from Cushing's. There is also a need for special care when the dose is falling below normal daily production, between 1mg a day and 0.5mg dose. Here a good doctor will stop regular simple dose division and give the patient a day on, a day off, or such, to jolt the system back to life while avoiding bad side effects. The ideal situation for any brain tumour patient is thus to have complete remission of disease, no tumour growth on scans, no need for dex, Hooray!

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DEX AND OPERATIONS

Normally there will be a larger dose of dex administered over several days before neurosurgery, to reduce swelling and make the operation safer.

Then, however, there will be a need after the operation to lower the dose swiftly — as well as opposing inflammation dex opposes wound repair, and you need that repair. 

THEN, however, especially in patients who have had multiple other treatments, healthy brain tissues may be angered by yet another intrusion and there may be a new round of swelling and symptoms. Do not allow despair to build among treating doctors, ask them to whack the dex back up and see what happens!

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END OF LIFE USE OF DEX

We all, all, want life to continue with maximum quality of life and then drop swiftly and painlessly. Well, dex can help with that... it is not a cure for brain tumour any more than for toothache, but with brain tumour it may help a patient to get the maximum from life for as long as possible and then facilitate comfortable dying.

Some special considerations apply at end of life. Dex can often be used, with rising doses, to sustain a quality of life in a brain tumour patient such that the patient does not slip into long somnolence or coma, or desperately frustrating disability. So the dex dose may be raised (all this under the supervision of the right doctors who know what they are doing) until of no further value, no further benefit. Then the question becomes whether to maintain the high dose or withdraw it. Weaning bit by bit does seem to be in the minds of some doctors but the anecdotal evidence is that it is a very unkind thing to do. Withdrawal of dex entirely in a patient near death (not eating, not drinking, not communicating) means that half the drug will be gone from the system within a day and this is likely to allow the mass effect to have lethal consequence. This is not euthanasia, but withdrawing of a useless substance. It may be an issue for most if the tumour is not reversed and has its way. Discussion of end-of-life choices is something for every adult, well or sick. And all this, every idea and suggestion, every notion of possible treatment here, is guidance for discussion with a doctor, nota case  for independent action, this is a major drug.

Dennis Argall

I am not a doctor, talk to your doctor about any of this, the issues vary from person to person.

Written on the basis of almost a decade experience sharing the histories of brain tumour patients and studying the biochemical issues. We eventually learned enough to use dex well when my wife Margaret had a GBM in 2000-2001

POSITIVE TALES OF COURAGE

JAYNE'S TALE OF COURAGE


In response to the attitude of taking control over your BT, I am a firm believer, I would like to share with you something that I am going thru at the moment that I see as a great big step to me regaining some form of control over my life. Whenever I see my neuro he never fails to tell me that my BT has 100% chance of recurring. Now although in the past I have never believed anything is 100% as there is always room for improvement or to be the 1% difference out there. This statement he kept making obviously stuck with me and since the BT diagnosis I have had a very hard time trying to plan anything that involved a future. I have looked seriously at study and given up because the man in my head says "why bother you won't be here" . This has happened with many things I have tried to plan. And believe it or not i am a very positive person so this was also getting me down that iI could not quiet the man in my head. Well I have taken a major step in my life to maintain some control and that is, I have amongst other things, a breast disease that currently sees me with10 tumours that are at present benign, however could turn malignant. I have previously had 14 tumours removed and I have a family history of breast cancer also. Now my neuro says don't worry about that, concentrate more on the brain tumour recurring and worry about the breast cancer if it happens. He just didn't get it. I am booked into hospital on the 5th May to have a bilateral mastectomy and then onto reconstruction. My chances of breastcancer are around 40-50% due to the history I have and so for me the removal isn't an option and it is something I can control. It is amazing how much lighter i feel after making this decision. It is not only a decision that to me says I do have a future but it is also a decision that says I have control over something major in my life.


So I suggest each and every one of you, regardless of the decisions you need to make, be them as drastic as mine or not, take control as soon as you can. Things tend to look alot different.


Cheers

Jayne

JUST HOW IT IS

"YOU LOOK GREAT..."
"Thank you"

This has become a common first greeting and then I just hope that they don't ask me how I feel...or how I've been...

A well recognised situation amongst brain tumour survivors and the acquired brain injured. It is so difficult to explain to people how it really is for you when you look well. Most of the challenges we have are hidden until a situation may arise that brings it out from hiding and often even then it is only us that knows we are not functioning properly.

One of these situations is when I go shopping - which I avoid if I can, or make it quick. I leave home armed with dark glasses, ear plugs and elbow crutch. I am alread tired by the time I get there, just from getting ready to go out, so there is already a disadvantage. As soon as the doors open and I enter the shopping complex a miriade of environmental pollution assaults me. I can't just ignore them, my brain won't let me. The lights, the blaring music from the coffee shop, the shoppers walking around, kids squealing, shoppers talking and oh, so much to look at. Ok, concentrate - need to get a shopping trolley - I make my way over slowly watching the ground for anything I might trip over. I mentally apologise to any friends who might be nearby and I don't see (it's too hard to look around - fatigues the eyes too quickly) or hear (plugged up).

I can't go fast otherwise I can't see what's on the shelf - my eyes are still looking left even though I have turned my head to look right - oh, sorry mate, didn't see you there. I stop where I know the spreads are and turn to face them so I can see them clearly. I can't just see and grab like I used to as I zoomed past. I move slowly around the store so I don't fall over or bump someone or something, but fast enough to get out of there as soon as possible. My eyes are starting to see double, I don't dare look around, starting to feel weak in my legs and oh boy everything is getting noisier - why do they have to have the music up so loud. Crash, bang, why can't people work quietly - my right shoulder starts to jerk followed by my arm - oh I must get out of here. Someone has turned up the volume - yes, I still have my earplugs in. I make it through the checkout before I burst into tears - thank goodness for the dark glasses.

I make it home on my mobility scooter and crash on the lounge. My head is pounding and my feelings are torn between anger and thankfulness. Anger at 'life not being normal anymore' and thankfulness for my new found independence and remind myself "things could be worse".

Acquired Brain Injury Booklet

I came across this very informative booklet written by a NeuroPsychologist. It is very easy to read and understand and very helpful for those who have been through surgery/radiotherapy/chemotherapy/ and now living with acquired brain injury. Deficits that you have to live with every day which have greatly impacted and changed your life. I feel it provides the missing link for me and has helped me to understand my own situation better. Some of it refers to traumatic brain injury but that is still very relevant. Any insult to the brain leaves some level on injury.

http://www.tbiguide.com/index.html

INVIGORATING INDEPENDENCE

WHEN WE HAVE SOMETHING ALL THE TIME we really don't value it until it is gone. Then to get it back, well that's an invigorating experience. Yes. I'm talking about independence. Due to nerve interference, from AstroBoy, to the eye muscles, my eyes don't align correctly or move as efficiently as they should. So two and a half years ago I stopped driving. Since then I have relied on my husband, son and friends, to take me shopping or just go out for a coffee. I adpated fairly well to this new situation until probably the past couple of months. I started to really feel like I needed to 'get out of these four walls'. The main friends who came to visit or take me out, were all of a sudden all away together! Yes, they could have timed it a bit better than that! Added to this sudden sense of isolation was my noise issue. Even if I could get out, where could I go, everywhere was noisy...and noise is not good.

While we were in Perth, at Crawford Lodge, I used a mobility scooter and found out it was rather fun! We started thinking about the idea of how good it would be to have one here. The idea developed into 'googling' which developed into nitty gritty research....next thing I know I HAVE ONE! I never thought I would get so excited about owning my own 'gopher' (this is what they used to be called), and I am not even old. But somehow age doesn't come into it with BT.

I have only owned my Meteor for 5 days and have been into town every day since - one day twice. It is taking a bit of getting used to - I can understand how they get tipped over. The controls are very sensitive and sometimes I end up a couple of feet futher ahead than I intended, sometimes I get brought to a sudden stop! It is a challenge still for my eyes in just the same way that driving is, but the difference is I am on the footpath and can go at my own pace, stop and take as long as I like to cross the road. But hey who cares...I am FREE.

I will never take independence for granted again.

Independence is invigorating no matter what form it comes in or how we get it back. It is when we lose our own sense of control that our world starts to fall apart around us. We feel powerless, something else has taken control of us. It is really important to keep a sense of control about us. It may not be the same as it was before but to maintain any degree of control is invigorating. It started for me as soon as the idea was formed.

So no matter what the doctors say, no matter what the statistics say, no matter what research says, no matter what the majority say, whatever way you can, however small, get back some sense of control over your own life. Wonderful things start to happen.

Lou

BT and Depression

I don't know if it's the right time or not to write about depression when you are feeling depressed. You tend to think differently about some things at those times then you do when you are relatively ok. The thing is it is when you are depressed that you need to write about things to get them off your chest and out of your head - sometimes you can see things clearer then. So please bear with me if I don't quite sound like 'me' - I am at this moment feeling quite down and do need to share it.

What are some of the things that contribute to the down times with BT?

• the physical position of the tumour itself can contribute as well as chemicals or hormones the tumour may produce
• feeling alone - no one really understands what you are going through even though loved ones and friends may try
• day to day living with symptoms that challenge your every waking moment
• everything you do is harder and takes longer
• you can't do what you used to do - your life has changed and no-one asked you
• everyone else seems to be getting on with their life and yours has come to a standstill
• you feel vulnerable, life is on shaky ground
• guilt for being a burden to loved ones and not 'pulling your weight'
• sadness - you grieve what you have lost
• you just don't feel 'normal' anymore and 'new normals' keep changing
• you can't sleep
• fatigue rules your life
• you can't work in the community anymore
• you 'look normal' so others think there is nothing wrong with you

I mention these things not to be negative but to say, even though we feel alone and no-one really understands, those of us who are brain tumour survivors, DO understand and know first hand what you are going through. I say this to convince myself as much as to say it to others! I need to know that there are others 'out there' who do understand because they are going through the bt journey themselves.

If you are suffering depression or anxiety I would highly recommend a therapist who does Cognitive Behavioural Therapy along with a book called "Reinventing Your Life" by Jeffrey E Young.

Anyone who wants to add to this list please feel free to either comment or send me a post that I can add for you.

Lou

Johanna and Nasser's story

My talented husband, Nasser, of 23 year has been diagnose with GBM grade 4 in September 2008 and like all of us, it came as a shock as he only presented with a head ache. He's 7 months post op from a "complete" surgical by Dr. Friedman at Duke. He has gone through the radiation, chemo and is now participating in the vaccination studies that they have available at Duke. He now take 5 days of Temador once every month for 12 months. Fortunately, he had a total resection of two large tumors; one being parietal the other occipital.
My Husband is a medical physicist that was trained at Harvard and has helped so many other victims of cancer. Now, he is a victim of cancer himself. Not just any cancer, but a grade 4 GBM.. He has 20 plus years of experience and took his own MRI to the brain lab and mapped out his own treatment plan.
So when I ask why him, a man who can help so many other victims of cancer, he replies that this is Gods' will. He is only 55 years old, in extremely good physical health, and is the loving father to 4 wonderful boys. I'm heart broken, scared, saddened and hopeful all at the same time. I think about all the people he has treated and all that have benefit from his extraordinary talents and those that may never benefit. It truly make one believe that life's unfair. While all of his cognitive abilities are still intact and he has resumed work, there are some new "little" issues that sneaks up on him. Like for some reason his ADH (anti diuretic hormone) quit working. So he developed "DI". Now one has to wonder if the hypothalamus or the pituitary gland is involved. Is it tumor regrowth or edema? It's always something.
People have reached out to us both in the medical community and within our home town, all wanting to know what they can do......Nothing except pray. My job is to stay strong be positive, support him and the children. It's a hard job. As the caregiver, I quickly learned that if you do not take care of yourself, you will eventually not be able to care for others. Support your family with sound nutrition, physical activity and offer them a spiritual leaning post. Some will find that because of their loved ones affliction, God has abandon them. I thought so myself too.That's okay, because that part of the process. This is going to be one of the hardest roads I've traveled so far and I'm hopeful that between good thoughts, good karma, lots of prayer and strong advances in medicine. We will all have the opportunity to beat this. We have had 3 MRIs since his surgery and all of the have been clean or "unchanged". He has been fortunate to have been taken off both the Keppra and Decadron. He does drive, but only short distances. Occasionally he complains of a headache that he will take Motrin or Vicroprofen for relief. He has a slight left sided field cut in his vision and knows to compensate for that, especially when he drives. He still has the ability to sleep endlessly if allowed, and does tire easily. I encourage him to walk or spin on the stationary bike in order for him to get some exercise. I worry because I read a lot, I know this is an aggressive tumor and regrowth is entirely possible. As I watch his hair slowly grow back, I can only hope and pray that is all that will grow back. Despite it all, we have taken the necessary steps to ensure that our family business is in order. This is a hard, but necessary process to complete; especially if there are children involved. It's best to be pro active rather than reactive. This is essentially where we currently exist. I had to slowly and gently tell the children, (21,19,& twin 17 year olds), the possible outcomes of this type of cancer. Like with any cancer, I encourage them to spend as much quality time with their Dad.This is the stuff that memories are made of and God willing, there will be many! I wish all of you well!
God bless. My thought ,prayers, and hopes are with you all.

Johanna

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CRAWFORD LODGE

I want to make mention here of a special place in Perth in which has become our 'home away from home'. I know that without the security of knowing we have accommodation here our journey would have been a lot more stressful.

http://www.cancerwa.asn.au/patients/accommodation-in-perth/
http://www.scgh.health.wa.gov.au/patients_and_visitors/services/index.html

Crawford Lodge is run by the Cancer Council WA and is accommodation for Country Cancer patients and their carer while undergoing treatment for cancer. Costs are partly covered by the PATS (patient assisted travel scheme). They made us feel very welcome and because my surgery and radiotherapy was at Sir Charles Gairdner Hospital (which is right next door) it was very convenient and minimised the travelling required. This all helped make these times go smoothly for us. My DH couldn't be with me during Radiotherapy so my MIL came as my carer (I am unable to fly on my own) and stayed with me the whole 8 weeks.

Every time I need to go back to Perth we have been able to stay at Crawford Lodge and we are most grateful for the facility. There has been a great need for futher accommodation as the waiting list at CL is huge. Milroy Lodge at Shenton Park was opened this year providing an extra 26 rooms. It is only by the dedication and hard work of committed, community, fund raisers that such places are possible.
You can find all the information you need on the above sites and also much more information on the Cancer Council of WA here:

http://www.cancerwa.asn.au/

Lou

MY BT JOURNEY

THE BEGINNING

I didn’t know it then, but on a day in September 2007, my life was about to go down a path I never knew existed. I am on that path now and the path I used to know is growing a little dimmer as my new destination creeps into focus.

For just a few weeks I had been noticing my eyes didn’t seem quite right, like something was a little out of focus. I put it down to eyestrain and fatigue, which fitted in with the rest of my body. Then I started to wake up with headaches. This was highly unusual for me – I never suffered headaches, apart from the occasional, mild, tension ones. These were different. I decided it was time to visit the doctor. The first two doctors I went to put it all down to my existing, clinical depression, and one, told me to ‘go home and get a good night’s sleep.’ This left me feeling very frustrated and misunderstood. I knew there was something else wrong – In fact I’d had this feeling for sometime. I went to see an optometrist who had never seen someone’s eyes do what mine were doing, but he felt I should seek another doctor’s opinion.
The third doctor was a lot more understanding and as soon as she saw what my eyes were doing, along with the other symptoms I was having, she rang a Neurologist for me right away.

THE SYMPTOMS

Up to this point the main symptoms I was having were: eye symptoms, double vision, fatigue, morning headaches, heat sensitivity, slight balance issues, and light sensitivity. Along side this was a history of long-term depression.

THE DIAGNOSIS

My first MRI revealed ‘a lesion’ in the brainstem. It seemed to puzzle my Neurologist as to him it didn’t appear ‘typical’ of any tumour and it didn’t appear ‘typical’ of an MS lesion. We were leaning this way because of my symptoms and because my mother had passed away with an aggressive form of MS. However he wanted to admit me to Royal Perth for further tests and consideration of my case by other specialists in the field.

So here I was, on my own, with ‘something’ in my brainstem and I wanted to know, NOW, what it was. I had the weekend to fill in. I spent many hours, in the Perth City Library, searching for the answer in a book and on the net. This only created further questions with no answers.
Monday I was admitted to Royal Perth – the beginning of many doctors visits which still left unanswered questions. I will never forget the visit from the Neurosurgeon. He left me feeling like I was doomed…wanted to know how young my children were, did I have a job, did I have someone at home to care for me? He threw all these long technical names at me and left me still without a clue.
I returned home, which was over 3200kms away, after a week, still with a ‘lesion’ in my brainstem – probably MS. They said, come back in 3 months for another MRI and we will see what has happened. It seems that ‘time’ was needed to establish a bit more of a history, which would hopefully prove if it was MS or not. I felt like my life had been put on hold. Time never went so slow as it did now.

I had already made the choice not to drive until the double vision improved. This was caused by the tumour pulling on the abducens nerve, which controls one of the muscles to the eyes. This in turn causes the eyes not to track in time with the head when it moved from side to side. Along side the abducens nerve in the vestibular nerve, which affects the balance.

Three months later I was back in Perth. This MRI showed little change to the tumour and no change to my symptoms. The NO felt he could now safely say it wasn’t an MS lesion – there was no other evidence of MS anywhere else in the brain – but a tumour. I didn’t – and still don’t – know if that was good news or not. My diagnosis was more of a transition than a direct hit. I was getting used to the idea that I had MS but then it was like “oh it’s not that, it’s a tumour, that could be better, but then maybe not”.
For my NO this was probably better because they like to know where they are going…this is the problem…this is the treatment…we get a solution…all is well. If it were only this easy.

We had found the problem. We knew it was a tumour, but what type of tumour? This needed to be found out to plan the treatment. The only way to find this out was to do a biopsy. My NO was keen on this but my Neurosurgeon wasn’t as it was what they termed “tiger territory”. There were big risks going into the brainstem, but because a small portion of it was invading the 4th ventricle it might be possible, he said, to get a small biopsy. It would mean an open craniotomy.
I was booked in to Sir Charles Gairdner hospital to have this performed in February 2008. We needed accommodation and will be forever grateful to the Cancer council of WA for providing Crawford Lodge to all country cancer patients. It has certainly made our trips to Perth so much easier having a ‘home away from home’.

THE SURGERY

I awoke from surgery thinking my head was going to explode. I had never experienced pain like it. Any tiny movement made me nauseous with the need to be sick. It was hours before anything worked for the pain. I was in ICU for 2 days then moved to HDU (high dependency unit) for 2 days. Because of the brain swelling and pressure on the nerves, existing symptoms were made ten times worse, especially the double vision. My eyes, apparently, were all over the shop. I know I couldn’t focus on anyone or anything for a few days. I had to wear a patch over one eye, which helped a lot. I didn’t get to walk for 4 days and then only a few steps. I spent 11 days in SCGH before they let me go back to Crawford Lodge, which is right beside SCGH. I couldn’t fly back home for another 2 weeks until a CT scan showed no swelling or air in the brain. While in SCGH I had a small amount of physiotherapy to get me walking again but no other treatment was indicated.

The Pathology results revealed I had a Pilocytic Astrocytoma. The good news was that this is a ‘benign’ form of astrocytoma; the bad news was where it had taken up residence. It is positioned in the upper medulla, lower pons and growing into the fourth ventricle. The other bad news was that there didn’t seem to be any treatment that would be helpful in eliminating this type of tumour. Benign tumour cells grow very slowly compared to malignant, so don’t benefit greatly from radiation or chemotherapy. Well, if nothing else, I left with a very impressive scar down the back of my head and neck.

The first visit I had back to the Neurosurgeon after surgery remains a mystery to me. I walked in with an elbow crutch and dark glasses on. He looked at me, pointed to the crutch and said “what’s that for?” and “What are you wearing them for?” I was flawed and didn’t know what to say. I didn’t think he would have needed to ask me that! I had balance issues and light sensitivity before surgery and here we were only 3 weeks after surgery; hadn’t anyone else had these issues from brainstem surgery? Three months later, and the last time I saw my Neurosurgeon, I was still wearing the glasses and still using the crutch. I told him I still have light sensitivity and balance issues and double vision. The tumour was still there; nothing had changed. He told me he wouldn’t consider operating on me again. Trying to remove the tumour, he said, could leave me ‘a basket case’.
I wasn’t prepared to just accept this as had heard of others who had brainstem tumours and had been successfully operated on.

I wrote to 2 other well renowned Neurosurgeons and they were both of the same opinion – too dangerous to operate – so I became settled on that.

RADIOTHERAPY

Sometime in the middle of 2008 the double vision got slightly worse. My NO wanted me to see the Radio Ooncolgist. He said it seemed to be behaving more aggressively than a benign tumour. The RO was reluctant to do anything unless my symptoms were a lot worse as he felt that nothing would be achieved. He told me that whatever they did wouldn’t improve my symptoms and wouldn’t decrease the tumour. The only advantage would be that it would slow the growth temporarily. We acted on this advice and decided to leave things be and take the wait and see approach.

We did this until October 2008 when I felt that things were getting worse and I was concerned that the bigger it got the greater the area that would be affected by Radiation when I did eventually have to have Radiotherapy. Was it better to have it while the tumour was relatively small, seeing as it seemed to be behaving a bit more aggressively? It was decided that we would go ahead with the Radiotherapy.

Because there is no room for error in the brainstem, I had to be fitted with a mask which enabled them to bolt you down to the table. This would be used each treatment, to ensure that my head didn’t move during administration of radiation. Fractionated Stereotactic Radiotherapy allows the majority of the radiation to go to the tumour itself, minimising exposure to the rest of the brain. I had 30 treatments over about 7 weeks.

Immediate side effects were minimal due to a low dose of dexamethasone during the course of treatments, counteracting any swelling. The main symptoms were fatigue and difficulty sleeping at night.

WHAT NOW - 12 MONTHS LATER

I have had 2 MRI’s since radiotherapy and there has been no decrease in size to the tumour. However there was a satellite lesion in the pons which is now gone. The second MRI showed a slight increase in tumour mass but they don’t know if it is tumour growth or scar tissue, or dead cells which radiotherapy will cause.
My symptoms are slightly worse since radiotherapy with a whole new one presenting itself. 6 months after radiotherapy I have become very sensitive to noise. This has been very life changing and socially debilitating. There is no medication for this. Its earplugs or earmuffs. The NO has no idea why it is happening. This is one of the frustrations with neurological deficits – there is still so much unknown about the brain, especially the brainstem.

I have named my tumour...AstroBoy...which came about because it is an Astrocytoma (derived from the astrocytes, which are star shaped cells). I figured that it is going to be with me for a long time and so we needed to establish a peaceable relationship. He isn't my hero - I didn't even know about the cartoon astroboy when I named it!

So for now I am thankful for all those who love me and support me and I count my blessings every day.

Lou

making sense of life and grief

My daughter Liz has written at her web site on the subject of grief and life and much more. This is a beautiful exploration of the way life can, if we open to it, acquire such great depth of meaning. In writing to tell me and other family members of this text, Liz wrote; "... wrote it on my lunch break when I should have been writing other things." I said no, this was clearly the thing to be writing. Hope you find it rewarding to read. If you are moved, leave a comment.

Dennis