Jane Symons


This site was intended to be for friends and family to obtain news of Jane's progress, however we lost Jane due to radiotherapy side effects. As Jane passed away tumour free I feel there is hope in her story, and if you are recently diagnosed it may give some insight into what may lay ahead. I wish the best for all of those poor souls experiencing Glioblastoma Multiforme (GBM).

I launched an interactive site titled Brain Tumour Survivor in 2005 which focuses on treatment options and has a number of long term survivors as regular contributors, in terms of research and treatment, that site shall remain current.

Latest News

Thanks so much to those whom have sent cards, best wishes, and came from afar to attend Jane's funeral. I have been overwhelmed by the number of cards, flowers and emails, one day I hope to get back to acknowledge each and every one.

Jane's funeral, a positive celebration of her life, will be available via streaming and DVD video from here soon for those whom were unable to attend in person.

My dear wife Jane passed away tonight, the 19th of November 2005. I was with her at the end, it was sudden and unexpected, but painless, my hand happened to be on her heart as she drew her last breath.

Jane was still clean and clear of tumour right until the end, I sincerely hope that this gives all of you that are still suffering some hope that this can be beaten, I believe that it can.

For Jane, her radiotherapy treatment of October last year induced necrosis in the area of the Pons which ran rampant this last week and as a result she just stopped breathing.

For those yet to take radiotherapy, please make sure you are involved in the planning process, be sure to understand the different areas where the rays may go and the individual risks of each area. Most of all, find out if you have choices as to the direction of the rays in relation to that risk.

I am no longer fighting the fight with you but assure you all that I will help where I think I can.

Right now I need to focus on our beautiful children, please don't be strangers, or avoid contact, the kids need their friends more than ever.

Previous News
Latest News - 1/9 November-2005
Jane is getting better every day, she remains free of tumour and is looking the brightest she has been in many months.

She has no use of her right arm at the moment and cannot say anything other than "no", however, she still understands everything that is being said. We are hoping that it is just oedema now in the area of the pons and that it will gradually clear. It looks like it will be a very slow and drawn out recovery, hopefully the radio-necrosis will abate and she can heal.

On Friday Jane had her fifth infusion of Avastin (Bevacizumab), there is one infusion left to go in the course, in two weeks time. After that I don't actually have a plan, it looked like she would be capable of walking and therefore go to a rehabilitation hospital prior to coming home, but the latest setbacks with mobility might negate that.

Latest News - 5/31 October-2005
Firstly, I need to say that Jane's scans of two weeks ago are free of both residual or active tumour, she continues to be on adjunctive Avastin (Bevacizumab), Procarbazine, and Temodal (Temodar).

That said, she is really doing it tough, she is still battling intense post shingles pain even though they were gone three months ago, and of course she is trying to overcome the stroke (radio-necrosis). Jane had begun walking between parallel bars and her speech was getting very much better but of late she has gone downhill, hopefully this setback is just due to the pain and will pass. It is so hard not to become very emotional at these times, watching someone you love so much, struggling so hard to do just the very smallest of tasks that we all otherwise take for granted.

Having Jane in hospital gives me a lot of time to think about things, and I was going to write here of the terrible time we had just getting Jane treated, but I am now thinking better of it. The surgeon, occupational therapist, discharge nurse, and a host of others whom thought Jane was beyond rehabilitation were just plain wrong, but I will not give them space here. It may sound clichéd but when we were told that Jane could not have treatment I maintained a mantra that was "that Jane may well fail at rehabilitation, but that we will not fail to give her rehabilitation" and this did see us through and keep me focussed on what needed to be done.

Having time to think has also allowed me to reflect on the journey so far, to think about the things that matter, I am torn between Jane, work, and the children. It is often in my mind that perhaps by spending so much time with Jane and doing research that the kids are not only losing their Mum, but that I am also robbing them of their Dad, perhaps when they need me the most. I am so lucky to have family and friends that have really stood up to be counted when the going has been really tough, my Mum and Dad, Jan and Craig, and those that have cooked meals, looked after the kids or visited Jane. We owe you all so much and without you in our lives I would certainly not have been able to cope.

I feel so very sorry for those also on this journey and hope that despite Jane's current misfortune that her continued tumour free status gives some hope to you all.

29 September/4 October-2005
Jane's FDG-PET scans are clear of residual or active tumour. Next month will mark a year of no tumour progression, at least we find ourselves dealing with just the stroke and not stroke plus tumour. That said, Jane is at her lowest ebb at the moment and is very depressed.

It is very hard for her to come to grips with her decreased abilities and she is feeling quite "down" because the "upper" effects of the Dexamethasone will have worn off too. Remarkably she has now ceased the Dexamethasone completely, going from 32mg to 0mg in three weeks. (This is unusually fast - don't try this without strict medical attention.)

22/28 September-2005
Jane has always recovered so fast from the deficits that the tumour and surgeries have delivered that it is taking a bit to get accustomed to the slow nature of stroke recovery. At the moment Jane doesn't think she's making any progress, but I can see that there are definitely small steps forward each day. I can now transfer her from the hospital bed to a chair without too much trouble, and last night she spoke her longest string of words since the stroke, "Ross, I didn't understand you, what did you say?".

The Dexamethasone is now down to 2mg/day, it has certainly been a rapid decrease, she should be off it entirely sometime next week. She had her second infusion of Avastin on Friday last and there seem to have been no side effects so far.

Tomorrow Jane will have a FDG-PET scan, followed by a FET-PET scan on Friday as part of a trial being run by the "Peter Mac". It should confirm for us if there is new live tumour present since the MRI of two weeks ago and also confirm whether these latest setbacks are indeed due to stroke and not tumour.
Jane would really enjoy people visiting with her, even for just a few minutes. She is at the Freemasons, you can click on the link to get details.
I have been sleeping every night down at the Freemasons with Jane and must thank Mum, Dad, and "Aunty Jan" for bearing the extra load of caring for the children while I am away.

19/21 September-2005
Jane continues to do well. She is yet to walk since the strokes but I am very optimistic that she will do so soon.

Jane has had aphasia (difficulty speaking) for some time now and I stumbled across a trick that has helped her and I hope will help others too. Jane has mainly only been able give Yes/No (and mostly "Yes" regardless of the question) answers since the stroke a week or so ago. Last night I found that if I got her to close her eyes tightly then she could learn and repeat most words spoken to her quite well. After saying them a few times she then found them a lot easier to say with her eyes open.

There are two phrases that are now her favourites since last night "where's mine" (in reference to anything I might happen to have) and "chocolate please" :) I spoke to our oncologist when he was visiting this morning and he put it down to the lowering of "data" going through the brain by closing the eyes, enabling more function for the speech area.

The Dexamethasone has been rapidly moved down to 8mg a day without incident, we are very lucky in this regard.

Last update I mentioned Jane was taking 4000mg of Acetyl-L-Carnitine a day, if you have a brain tumour please be aware that the MAXIMUM recommended dose for those that have a history of seizures is 1000mg a day.

15/18 September-2005
Jane is doing remarkably well, she has shown incredible resilience and dragged herself off the canvas yet again. It is almost certain that she has had a number of strokes in the Pons area of the brain, she is still free of visible tumour.

I have been giving her 4000mg of Acetyl-L-Carnitine , 2000mg morning and 2000mg at night, and the decline seems to have been halted. Today she was able to sit in a chair for the first time in more than a week and her remaining deficits are muscle weakness and more acute aphasia.

The doctor agreed to take the Dexamethasone down in 8mg increments rather than cease it immediately, she has successfully gone from 32mg to 24mg to 16mg in the past four days.

11/14 September-2005
The good news is that there is no tumour, the worst and saddest news is that Jane has suffered multiple strokes (infarcts) due to radiotherapy damage of supporting supply tissue. Apparently Jane is the first person at the "Peter Mac"  to have this occur in the Pons when being treated for the Left Temporal region.

Any function that has been lost will be permanent as the brain tissue has died (necrosis). The long term prognosis is unknown as there is no treatment known to stop radionecrosis. That said, I have purchased a number of supplements that Jeanne M. Wallace has indicated support brain function and will give those to Jane from today.

The Dexamethasone will be stopped as it has no efficacy for the current situation.

We just hope for a miracle, that the supplements will kick in, and that Jane's body will find a way within itself to heal the "unhealable".

8/10 September-2005
The past three days have seen a rapid decline. On Tuesday Jane was able to speak reasonably well  and climbed two flights of wooden stairs without issue.

On Friday morning Jane awoke with little consciousness or mobility, there was no power in any of her limbs. Despite this she was able to get into the day oncology centre and have an infusion of Avastin (Bevacizumab). By Friday afternoon she was unconscious and deteriorating quite rapidly. Dexamethasone (8mg) was administered to ease pressure and wake her up, and thankfully it appears to be working as she woke up on Friday night.

At the moment Jane has no ability to take anything via the mouth so no chemo and supplements can be administered, hopefully that will change today.

Despite being told that it is highly unlikely that surgery would be successful, we are seeking surgical opinions from various surgeons. As the area will be incredibly delicate to operate in (if at all possible) and the risk to mortality is very high, there are very few surgeons with the ability to operate, and they are all in Vancouver this week at a conference.

We are also looking at stereotactic radiotherapy and Jane will have an MRS on Tuesday to help ascertain whether this will be available to her.

we are now over the initial shock of this recurrence and I have conformation from Jane that she wants to fight on. Despite the bleak odds of success, we have renewed hope.
As a note to those deciding whether to cease chemotherapy as they might think the "coast is clear", Jane's case is a warning that even after seven months of entirely clear and clean scans (reports one month ago said "ongoing complete response"), without treatment of the disease, recurrence can occur very quickly.

28 August/7 September-2005
It is not good news. After so many clean scans one might think that the hard yards were over, that Jane might be heading towards remission, but alas not.

Jane had an MRI scan yesterday that has shown growth of a new tumour or radio-necrosis in an area of her brain known as the Pons. Unfortunately for Jane this area will be very likely inoperable via surgery or stereotactic radiotherapy, it is regarded by many as the "soul" of the brain and is integral in many of the body's basic functions, it controls respiration and regulates heart rhythms and is a major route by which the forebrain sends information to and receives information from the spinal cord and peripheral nervous system.

Jane will try a course of Avastin (Bevacizumab) with Temodal (Temodar) plus Procarbazine starting on Friday. The Neulasta worked very well in increasing Jane's white blood cell counts last time, so we will also get that administered on Friday.

We hope that this cocktail will turn things around (once again), but without surgery or radiotherapy to help out this time, Jane is really fighting against the odds.

Jane is recovering well from her CPT-11 infusion, I think she has gone past the low point and is getting better each day. Yesterday she had an injection of Neulasta to try and bolster her immune system (mainly the white blood cell counts), it will be interesting to see how it performs. Jane will have two more infusions of CPT-11 before moving onto CCNU (Lomustine) for two to three months.

All four of the kids have Chickenpox, which they no doubt caught from Jane's shingles. When researching them I found out that the English prior to 1900 called their children "Chickens" (in much the same way we now call them "kids"), hence Chickenpox.

As you can see I've updated the headings on the site to make them easier to read. I've also added a status area to the top right and will change the colour of the "visiting" using red, yellow, and green to show whether it is OK to visit. As mentioned before, visits to the house, guestbook entries, emails, and phone calls are the best medicine for Jane at the moment.

The shingles are are almost gone and Jane is doing very well, so well that she was able to have another infusion of CPT-11 (Irinotecan) last Friday and has resumed all of her other medication (see "Daily timetable of medication" on the right side of this page).

The plan, at this time, is that Jane will likely do another two or three rounds of CPT-11 and then switch to CCNU (Lomustine). After this she will go back to adjunctive Procarbazine and Temodal (Temodar) on a 7 day on/7 day off or 14 day on/14 day off cycle. There is considerable evidence indicating that these protocols are likely to provide better outcomes for both toxicity and longevity than the traditional 5 days on/28 days off chemotherapy protocols.

It's been a crazy two weeks. Around ten days ago many of Jane's deficits (mobility, speech, memory) became very acute. I was very worried that it might be tumour infiltration of the surrounding tissue in the left temporal area, however it seemed too quick a recurrence based on the very recent clean scans. There was a thought that it might be a blocked shunt so Jane had a scan last Wednesday (the 3rd), the very good news is that the scan was once again clear and the shunt was not blocked.

This left us puzzled as to what was going on, so on Friday last week we stopped all medication with a view to reintroducing them one by one to see if it was a drug interaction/toxicity issue. Even after ceasing the medication Jane still seemed in a decline. By the Monday of this week simple tasks and comprehension were beyond her. Then all of a sudden the reason for the problems came to the surface, it was shingles, a recurrence of childhood chickenpox. It was such a relief to know that this episode was not tumour related.

The shingles manifested themselves as a ten centimetre high rash of blisters going from her spine from right to left all the way to her abdomen, it looked like someone had poured boiling water across her skin and they were very painful. Now, after five days of treatment and visits from nurses to change dressings Jane is much improved, mobility, speech, and memory are all much, much better.

Jane is now back on all of her medication and the next treatment with CPT-11 (Irinotecan) will be after the shingles disappear, probably towards the end of this week.

It is the anniversary of Jane first going into hospital with a massive brain haemorrhage due to the underlying left Temporal GBM. Reaching this milestone is a great feat given that her prognosis in October 2004 was just a few weeks.

Regardless of whatever happens from here, we will know that Jane has exceeded her own expectations and is happy with the course that she has taken. The view of Jane and I is not a new one, it is that dealing with this monster is a matter of risk minimisation. We have added a number of therapies along the way, each of which represent a reduction in risk of mortality due to the disease.

We, of course, do not propose that we hold the cure, or that our beliefs are any more "right" than anyone else's, we would never be so judgemental, we can only report what has worked for Jane so far. Indeed, we have both seen therapeutic outcomes attributable to religion and belief alone.

I thank those that have prayed for Jane, those that have helped care for her so that I can have time to research, those that have cooked meals, the Mentone Girls' Grammar School that have looked after our children after school most days (including Antony and Jo-Jo (Josephine) who don't even attend there), those who have visited or sent best wishes to help keep Jane's spirits high, and all those that have offered their assistance along the way.

Jane had a really good PET scan result, the conclusion:

"Appearances are those of an ongoing complete metabolic response. There are no features to suggest residual or recurrent metabolically active disease in the left temporoparietal region."

We had the scan cover her entire body, so there is also the good news that there is no sign of the tumour spreading to the abdomen via the shunt.
I am often asked how people can help. The *most* important thing right now is that people keep in touch with Jane and visit or write, she needs to know that people care and are still thinking of her.

Jane has had another very good week. It started with her attending the BTA Workshop and meeting up with a number of other survivors. Jane started taking Modavigil on the Sunday (100mg), it is a CNS stimulant and it has made her a lot brighter and able to stay awake longer during the day.

Monday saw the family on the front page of our local Leader newspaper (I will scan a copy of this at some stage). I am hoping that this will provide some pressure on the drug manufacturer Pharmion help us out with the cost of Thalidomide (which at $1425 per month is about half of our monthly medication/supplement bill at the moment).

Thanks to our wonderful radio oncologist at the The Peter MacCallum Cancer Institute Jane will have a PET scan tomorrow, this will hopefully confirm the findings of the clean MRI scans.
I have launched a new site for Brain Tumour Survivors and their carers, it can be found at www.btsurvivor.com

The aim of this new site is to share information on treatment decisions, stories of long term survivors, and give the newly diagnosed hope.

Another clean scan yesterday for Jane, no sign of residual tumour. This is particularly good news as she's been off the Temodal (Temodar) for some time now, and hopefully means that the CPT-11 (Irinotecan) is something that her tumour responds too. There have been no noticeable side effects from the CPT-11 other than some initial lethargy (tiredness). 

The scan did show some necrosis (dead tissue) due to pressure effects, we will meet with the surgeon to see if he can tell us more about what this might mean.

Jane was to have another infusion of CPT-11 today, however we have decided to wait another week for her blood counts to improve. We have noticed that Jane's counts go up really fast but decline quite quickly as well, rather than the normal gradual increases and gradual losses. I am trying to do some research into why this would be the case.

Jane began CPT-11 (Irinotecan) intravenously last Friday, there have been no side effects so far other than being very tired from Monday afternoon. The nadir (low point) for CPT-11 (Irinotecan) is normally ten days, so the side effects will likely peak in about a week from now.

Switching away from a chemo that has been working is one of the biggest risks that Jane has taken so far, there will be a scan on 14th July. Hopefully we will find that the CPT-11 (Irinotecan) is working as well as the Temodal (Temodar) has done.
I am trying to put some pressure on HBA (our health insurer) to cover the Thalidomide. We have had insurance since 1994 and have top cover at $250 plus per month, but at this time they are prepared to only fund $20 for each $1425 that I pay out. They are reviewing our case and I hope to hear back soon. (In the US and elsewhere Thalidomide is covered by insurance, HBA have said that this is not relevant.)
The annual brain tumour workshop put together by Brain Tumour Australia (BTA) is to be held on July 16 and 17 in Melbourne. The theme and title is "Pathways '05: A weekend of information, support and sharing", registration and event information can be found by visiting the BTA website at www.bta.org.au

23/28-June-2005 (Happy Birthday Jane!)
Today we are celebrating Jane's 36th birthday!!

Jane is a little sleepy but otherwise doing really well. Exercising every day more and more plus now going out for more physio, occupational therapy, and speech therapy. We are all over our colds/flu, I am so glad that it was so short lived, given that this remains the case Jane will start CPT-11 (Irinotecan) on Friday.

I've been investigating Alzheimer drugs to see if they'd help Jane but it seems not, our advice is that they don't even work for Alzheimer patients (this pharmaceutical business is a whole new world!).

Jane has had an "interesting" week, the four children have had varying degrees of flu/cold symptoms through the week and I've now got a cold. Consequently, Jane's immune system has taken a battering, yesterday, for the first time in a long time, she could not remember their names and had difficulty reciting her date of birth. With that sort of a scare we headed off yesterday morning and she had a scan. The results are that there is still no sign of tumour at all and her shunt is not blocked, so we have no idea what is going on with her memory.

Her blood counts had a significant drop late last week and the only thing we've done differently lately is introduce the Ruta/Calc' Phos' protocol but we can't really see that as the issue, it is most likely that there is an underlying infection, for which she has been prescribed ciproxin. Hopefully that is also the reason for the memory issues. Apart from all of that Jane is doing very well, her mobility is now pretty good (she walks about unaided) and rides the bike at least 2 x 15 minutes on most days.

Jane is also spending some time each Wednesday at the Bethlehem Hospital in Caulfield South meeting with other brain tumour patients, getting a massage/ having reflexology /reiki and doing "arty" stuff, she is really enjoying all of that. I would recommend that anyone interested in attending should give them a call (Jane would love to meet some of you).

Whenever we all get well again Jane will take the big leap away from the Temodal (Temodar) and start on the CPT11 (Irinotecan).

Sorry for the lack of updates, but it's a case of no news is good news. Jane continues to thrive and I've spent the last two weeks in intensive research. We really need to find another "base" chemotherapy treatment to switch or rotate to, we still have the fear that the tumour may become resistant to the Temodal or that she will have issues with her blood (leukaemia) from the extended use. I am thinking of rotating in CCNU (Lomustine) as they are currently doing with some patients at Duke. If we are lucky we might be able to get a cocktail of Avastin (Bevacizumab) and CPT11 (Irinotecan), although it may be best to keep this cocktail in reserve in case we need it later. Jane was to have another Caelyx infusion tomorrow, however I've delayed that until at least Friday so that we can decipher the best way forward.
I've updated the Research page so that it includes all of Jane's current medication and PDF files of the trials that are a part of the reasoning behind me adding each to the protocol. I hope to do the same for her list of supplements soon.

Jane continues to improve, over the past week she has become much brighter, has increased confidence, and is actively exercising on the bike for ten minutes twice a day. She has an impulse to want to ride on roller coasters so we will likely head up north for a holiday very soon.

Jane is doing so well that we are able to add 100mg of Procarbazine (another chemo) back into the protocol as well. I've updated the daily running sheet, which is available by clicking here or to the right under "Medication Timetable".

We've had a few visitors during the week which has really made Jane feel good and has also helped Jane increase her vocabulary. Please feel free to drop in anytime.

Jane is looking good, her health is improving every day, things are probably better today than at any time in the last four months. She had another clear MRI scan yesterday, there is no sign whatsoever of residual or active tumour, it was about as good as a scan could be. If you have some time on your hands then please come and visit, Jane needs all of the mental stimulation she can get.

Jane began taking Esberitox this week, 3 x 3 tablets per day and her white blood cell counts have improved dramatically, this even though she is on 100mg of Temodal every day.

Although Clomipramine has been shown to have many positive effects for Jane, and is thought to have anti-tumour properties, we have decided to cease it as it is making her blood pressure drop too dramatically, averaging 80/55 (hypotension).
This week we were saddened to hear of the passing of Nigel, husband of Liz. We send our sincere condolences to Liz, Peter, and Ian, and wish them all the best at this most difficult time.

It's been quite a while between updates, this is not a sign of anything going awry, just that I've had my hands full and been away for a few days. Jane has been getting better every day, especially since we have reintroduced the Clomipramine to her daily protocol of drugs/supplements. It seems that it has just taken some time for the protocol to "kick in" again. While in hospital only a small percentage of the prescription drugs are administered and none of the supplements/ alternative medicines. She is feeling so well that we now have to watch out that she doesn't just go off down the road by herself (she did this yesterday when everyone was busy doing other things).

She is currently receiving speech pathology, occupational therapy, and physiotherapy in our home rather than at hospital, I think this makes a great difference to the effectiveness of the treatment. She is currently exercising for sometime of the day and has been able to walk to the end of our street and back, a great achievement given that she has spent so many of the past four months on her back in hospital.

Jane came home on Friday and is improving fast. She has had a fantastic mothers day, the kids gave her many gifts, mostly made at school, amazing what you can do with string, glue, cardboard, and pasta :)

The flash cards have not been needed so far as she has been able to speak fairly well and is able to walk about the house unaided, a remarkable improvement.

I would encourage everyone to please try and give Jane a visit, it really gives her a boost.

Here is the latest scan of the area we are looking at, I have annotated the edge that is most likely to have recurrence. As you can see there has been a fair amount of tissue removed.
The Daily timetable of medication has been updated to include the current state of affairs.
Added a history button to make this page a little smaller. I have also added a small text about our experiences at Royal Melbourne Hospital and a short version of events prior to October 2004.

Jane had another MRI scan today, no tumour present, that makes at least six months progression free. She will be coming home from the Freemasons tomorrow, just in time to celebrate mothers day with the kids.

Jane's aphasia is still a big problem. I have made and laminated a number of flash cards that have pictures that say things like "Toilet", "Eat", "Drink", etc.. , so she can hopefully communicate with us a bit better. Her memory is improving every day and she can understand all that is said to her.

She is so very happy to be coming home.

On Thursday the 28th Jane had a shunt installed leading from an incision behind her left ear internally down to her stomach, she has come through the operation and recovered very well. It must be quite a painful procedure as this is the first time that I have really seen her grimace in pain and have to ask for relief.

While she is still quite confused, and her aphasia continues to be a big problem, she can now remember her name and recognise other people. I can see that some pressure has already been relieved as her left eye has become closer to normal (it had been very dilated due to pressure behind the retina).

She is being transported today from the Epworth High Dependency Unit to the Freemasons, which Jane is happy about as it means that she is one step closer to coming back home. At this stage we anticipate that she will be there for four days.

Everything was looking very good however after the drain was removed an amount of air entered the cavity and since that time Jane has been unable to remember her name, her children, nor who I am. She has been put on 100% oxygen to hopefully collect and clear out the air but it is clear that she is getting worse over time and that a permanent shunt is going to be required as soon as possible. It cannot be installed today as the area around the drain site has become puffy and may be infected, a sample has been taken for analysis.

I have been very worried about risk of Jane's GBM travelling through a shunt and causing new tumour growth in her abdomen. The surgeon maintains that the risk of this occurring is in the order of 1%. I have looked at having an external shunt installed rather than it going into the stomach but the infection rates seem very high (almost 100%) and with low immunity Jane could not withstand this.

Jane is looking good and is able to get out of bed for meals and so on. She had a CT scan and from what I can see of the film there is no new growth of tumour, which is a relief as Jane has been off chemo for quite a while now.

Jane still has the tube attached to her cranium and is leaking copious amounts of cerebral fluid. Unfortunately her brain has not enlarged to occupy the drained space so the plan at the moment is for her to stay in the high dependency ward for another two days, remove the temporary tube she has now, then discharge her from hospital on the Monday (ANZAC day).

A scan will be done in two weeks and if the fluid is still building up, as we expect it will, Jane will be readmitted to hospital for the another operation to install a shunt (a permanent internal tube going from behind her ear to her stomach) to allow continuous drainage.

Jane has had a successful operation today, the fluid drained so far has been clear of infection or blood, she is not in any pain and is doing fine. There is a tube attached just above her left ear which has been pushed via a small incision in the bone through to the tumour site.

It is very likely that she will be in hospital for the next seven days while the amount of pressure and drainage is monitored. Hopefully the fluid will dissipate and not reoccur so that an operation to insert a shunt is not required.

As reported earlier, Jane is perhaps now paying for the early vigour with which we attacked the tumour as her white blood cell counts remain fairly low, I am hoping that this is a delayed reaction to the Caelyx but this may be more than wishful thinking on my part. In any case, even with hindsight, we believe we have chosen the best options available to us as the prognosis in October 2004 was only three months, seven months have passed since then.

The surgeon thinks our MRI scans were a fantastic result but is worried about fluid build up in the cavity where the tumour was. The effects of this fluid build up have become more apparent every day, with loss of some right hand side function, mobility, speech, sight, memory, and hearing. Jane is to go back into hospital this morning to have the tumour site drained and washed out. After the operation Jane will be monitored for recurrence of the fluid build up and should it reoccur then she shall have a tube connected from the tumour site to her stomach (commonly known as a shunt).

On the outside Jane looks very good and is exercising every day on the bike for an hour or more, however on the inside her blood counts are reflecting the heavy and adjunctive doses that she has had to date. Her bone marrow has really been depleted and this week her white blood cell counts started to drop quite dramatically as the Caelyx started to kick in. She will be taking a break from the daily Temodal for a week and putting the next Caelyx round off for another week as well.

As Jane is temporarily off the chemotherapy (Caelyx and Temodal) we decided to go in and have an MRI scan yesterday rather than nervously wait until next week. The very good news is that the scan shows no new tumour, we are very relieved. Discounting the surgery due to the cysts, that's quite a few good scans in a row, since December there has been no tumour growth.
Antony had his ninth birthday party last Sunday and JoJo (Josephine) had her fourth birthday during the week and is still so excited by it all that it is nearly impossible to get her to sleep at night!

Previous History click here

Jane Bathing Teagan and Jo-Jo post radiotherapy
Antony School (8 Years old)
"concert with Nat"
Josephine (Jo-Jo) School (4 Years old)
Albert Park
At the farm
Natalie School (10 Years old)
Riding Nan's Horse
Teagan David Bowie "look"
Brief History

01-Aug-2004 Massive brain haemorrhage
01-Aug-2004 Hospitalised at RMH
14-Aug-2004 Transferred to Melbourne Private
17-Aug-2004 Craniotomy left temporal lobe
18-Aug-2004 Glioblastoma Multiforme confirmed
23-Aug-2004 Transfer to Brighton Rehab
01-Sep-2004 Home! (Scan shows no tumour)
17-Sep-2004 Radiotherapy begins for ~60gy
06-Oct-2004 Severe pressure effects, Dex 16mg
07-Oct-2004 Regrowth to 5.1 x 5.3 x 5.8cm
09-Oct-2004 Pressure effects rescind
26-Oct-2004 Final of 30 Radiotherapy sessions
09-Feb-2005 2nd Surgery at the Epworth
11-Feb-2006 Histopathology - No active Tumour
20-Apr-2005 Drain excess fluid at the Epworth
28-Apr-2005 shunt installed at the Epworth
01-Jul-2005 Switch to CPT11 from Temodal
28-Aug-2005 Stroke in the Pons
09-Sep-2005 Avastin introduced at 400mg
10-Sep-2005 Switch to Temodal+Procarbazine

Medication/Supplement Timetable
Click here for the daily medication timetable
Current Medication (Prescription)
Accutane 160mg (14 days on/14 days off)
Cimetidine 800mg (400mg twice daily)
Celebrex 800mg (400mg twice daily)
CPT11 (Irinotecan) (infusion every 14 days)
Melatonin 20mg (at night before bed)
Tamoxifen 200mg (100mg twice daily)
Thalidomide 150mg (At night)
Current Chemotherapy Rotation
Avastin (Bevacizumab) (anti-angiogenesis)
Procarbazine 100mg (50mg twice daily)
Temodal (Temodar) 100mg (100mg at 06:00)
Medication (Non-Prescription)
Chinese Medicine (immune system, digestion)
Green Tea (drink 4 times a day minimum)
Acetyl-L-Carnitine 500 mg
Adrenotone Plus
Alpha Lipoic Acid 50 mg
Berberine 200 mg
Boswellia 300 mg
Bromelain 750 mg
EGCg (Green Tea) 500 mg (not on CPT-11)
Glutamine Powder 8 oz
Grifron Pro D Fraction 2 oz
Molybdenum #7 Trace Minerals 2 oz
NatCell Thymus-p NF 1 oz
Nutrient 950 w/o Cu, Fe & Iodine
P5P50 - Activated B-6 50 mg
Shark Liver Oil 1000 mg
Ultra Pure Fish Oil 360/240 1200 mg
VascuStatin 250 mg
Vitamin D 1000 IU
Previous Medication/Treatment
Accutane 120mg (21 days on/7 days off)
Caelyx (IV) 70mg (1 day one/27 days off)
Clomipramine (ceased 1/7/2005 due to Low BP)
CPT-11 (fortnightly, ceased 22/02/2005)
Craniotomy (surgical "debulking" 17/08/2004)
Dexamethasone 16mg (6/10/2004 - 16/11/2004)
Dexamethasone (weaned off 17/01/2005)
Dexamethasone (weaned off again 28/02/2005)
Diamicron 30mg (ceased 10/1/2005)
Dilantin 400mg (ceased 6/12/2004)
Procarbazine 100mg (ceased 13/02/2005)
Procarbazine 100mg (ceased 01/07/2005)
Radiotherapy 30 x ~2gy (started 17/09/2004)
Temodal (Temodar) 100mg (100mg at 06:00)
Topotecan 1.5mg (ceased 31/12/2004)
Zantac 450mg (150mg three times daily)
Zofran Wafers (4mg as required, not often)
01-Aug-2004 CT  Low Medium High Resolution
03-Aug-2004 MRI Low Medium High
08-Sep-2004 CT  Low Medium High
Currently Researching

Boswellic Acid
Celebrex (Celecoxib)
CPT-11 (Irinotecan)
Ellagic Acid
Gamma-Linolenic Acid (GLA)
Glitazones (Avandia, Actos)
Monoclonal Antibodies
Nicardipine, Nimodipine, Verapamil (Calcium
                                        channel blockers)
Krestin (from mushroom Coriolus Versicolor) Procarbazine
Radiosurgery (Gamma Knife,
                     Linear Accelerator {LINAC})
RMP-7 (Cereport)
Rosigtilazone (Avandia)
STI-571 (Gleevec)
Vitamin D (Alfacalcidol)
VP-16 (Etoposide)

This site is maintained by Ross Symons, whom
is contactable at janes-site@symons.com.au


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