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This site is intended to be for friends and family to obtain news of Jane's progress, as a means for doctors to access information, reports, and scans, and finally, when I have more time, as a resource for those other poor souls experiencing Glioblastoma Multiforme (GBM).

Earlier History
28/30-March-2005
Jane managed to get along to Natalie's school and see her in a play during the week, it was so good to see Jane get out of the house and catch up with friends and teachers. Jane would really like visitors, plus it gives her a chance to practise conversation, please do not hesitate to call if you can drop around for a few minutes.

In general Jane is coping very well and is exercising every day but has very low white blood cell counts so we have delayed increasing the Temodal dose for a few days. The exercise has certainly improved Jane's blood pressure and it is now averaging in the 90's.

The next scans are two weeks away but we are already anxious about them. The last time we had a clean scan it only took a few weeks for the tumour to recur and grow back to the original diagnosed size, of course this time around we are bombarding the tumour with everything we can and have also had a clean PET, so things should be good.

Natalie brought home her school photos today, they are scanned here.

19/27-March-2005
Happy Easter to all! As I write the kids are turning the house inside out looking for Easter eggs, it sounds like we have a house full of elephants! There is so much laughter and excitement, it is a joy to behold.

Jane continues to improve, has started physio, and is working out on the bike at home twice a day for 20-30 minutes. We have purchased a recumbent exercise bike which makes it far easier for Jane to ride as it has a larger seat, hand rests, and back support. 

Now that we are some way past surgery, and it appears Jane has healed very well, we have been able to reintroduce a full schedule of chemo and supplements for her.
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It would be an understatement to say that it has been a tough couple of weeks for some of our friends, fellow travellers, and work colleagues. We hope that Easter brings them some joy and the weeks ahead are significantly better.

8/18-March-2005
Jane has settled in well at home and scans yesterday show that she is totally clear of tumour, which is what was expected given the good PET result last week.

Jane had 70mg of Caelyx yesterday and will continue on 100mg daily Temodal until day 14, where she will begin 200mg daily Temodal for days 15 - 28. Caelyx will then be given (IV) on day 1, Temodal will be ceased for days 1-14 (the nadir for Caelyx is 7-10 days), then 200mg daily Temodal for days 15 - 28. We will repeat this for at least a few rounds and perhaps try SN-38 in place of the Caelyx for a while.

There was a "flare" in the lung on the PET which has now shown to be slight pulmonary oedema which is probably due to her low blood pressure and hospitalisation (little or no exercise). We may look to hyperbaric oxygenation (HO) to help clear this up (although the proponents of HO claim that it causes systemic angiogenesis, which is scary).
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Its been a week of highs for Jane but many lows for others. Sadly the week started with the passing of Adam Lancman most suddenly and unexpectedly, he was a fit 46 years old with no known health issues. Adam was a good friend and vital member of the Australian Video Games industry and he will be greatly missed by all.

A number of people that Jane and I have been travelling with on this journey have also passed away this week and our hearts go out to all of those left behind.

1/7-March-2005
Jane's PET scan shows "no evidence of metabolically active tumour at this site or elsewhere in the brain". It's not over by any means, but the result cannot be any better than this!

23/28-February-2005
Nothing much has happened this last week, Jane has had a lot of rest and desperately wants to come home but is not ready yet, hopefully she will regain enough mobility and leg strength by the end of the week to be discharged.
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I must say that I truly hate having Jane in hospital, for all of the obvious reasons, but also because it seems that not a day goes by without an issue. We've had initial misdiagnosis (nothing wrong, go home), high fat and high sugar meals (brain tumours thrive on sugar and fat) and doses have been accidentally doubled, halved, or totally missed, luckily for us that none of these issues have caused Jane too much distress. (Me, well that's another matter!)

These errors have occurred to some degree at every hospital Jane has been admitted to, and she's been to quite a few on this journey. I therefore believe the problems to be systemic and just a part of modern medicine. The golden rule is to not be embarrassed about grabbing the patients file (normally at the end of the bed), and to not only read it, but be seen to be reading it by staff and nurses, making sure all dosages are ticked/signed for every day.

For those being admitted in Victoria, the best hospital we've been to for care was the Freemasons, the worst by far was Royal Melbourne Hospital.

14/22-February-2005
While we know that Glioblastoma Multiforme is a recurrent disease, that it can strike back very quickly, all indications so far from the scans and histopathology are that Jane has done remarkably well and things could not have gone any better with regard to treatment or surgery. Jane's spirit is great and she is more than relieved to still be here. She told me yesterday that during the few days prior to surgery she really thought she was not going to make it.

Jane's staples have been removed and the wound has really healed well, the bone was cut along the same line as last time, 20cm in length about a 7cm radius around the left ear, staples are regularly used to keep the bone together (they look like regular stationary staples). Jane is more than happy that they've been removed.

Jane has been recovering so well we have been able to transfer her from the Freemasons, where she spent two days after receiving chemotherapy, to Brighton Rehab for some physiotherapy and speech work (she still has some balance and speech issues).

While Jane is in hospital we have not been able to continue the "normal" medication protocols or supplements due to the healing process (and I doubt the nurses would like the dosing timetable). A summary of what has been administered follows:

Surgery (Craniotomy for Cyst and tumour/radio necrosis)
Surgery + day 1 Procarbizine 100mg, Dex 16mg
Surgery + day 2 Procarbizine 100mg, Dex 16mg
Surgery + day 3 Procarbizine 100mg, Temodal 200mg, Dex 8mg
Surgery + day 4 Temodal 200mg, Dex 8mg
Surgery + day 5 Temodal 200mg, Dex 4mg
Surgery + day 6 Temodal 200mg, Dex 4mg
Surgery + day 7 Temodal 200mg, Caelyx IV 70mg, Dex 4mg
Surgery + day 8 Temodal 100mg, Thalidomide 100mg, Melatonin 20mg, Clomipramine, Dex 4mg

We will continue this regime for as long as she is not at home. I expect we will change to Temodal 200mg 21/28 + Caelyx 80mg 1/28 as the major chemo.

Jane's blood is also very good and there are no noticeable effects from the Caelyx/Temodal mix as yet other than signs that she will lose what is left of her hair. We have had a PET scan booked for later this week which will hopefully confirm what the surgeon and histopathology results suggest.


11/13-February-2005
Jane is doing incredibly well, she's been moved out of the high dependency ward, is able to walk, and is pestering everyone she bumps into to let her go home.

I saw Jane's CT's (scans) on Saturday and they looked really good, no visible residual tumour at all.

I spoke to the oncologist today and have finally come to a conclusion of our next round. Jane will stop the Procarbizine (100mg) today and go to Temodal (100mg) daily from Sunday. On Wednesday, if not still in hospital, she'll go onto Caelyx as well. We've decided to stay with the Temodal 100mg 28/28 (every day) because of the very good results in trials of Caelyx and Temodal. We will likely switch to a Caelyx and Procarbizine mix, dropping the Temodal for a while, after a few rounds because of the tumour resistance issue. As a matter of interest when researching this I came across trials that show that extended use of low dose Temodal 14/28 is far better than 5/28 for both toxicity and long term survival (LTS).
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I've added a research page on which I shall provide links and information on treatments I find interesting or promising.

9/10-February-2005
The surgery was a great success, in the words of the surgeon "it went as well as any I've ever done".

We will wait to see a biopsy but there are indications that it is a big dead lump. The surgeon was very, very surprised at what he found and said whatever it is we are doing, just keep doing it. He was able to remove over 95%

7/8-February-2005
Today we found out that the tumour may get Jane via another avenue. It is mostly dead, becoming a cyst itself, but in it's death throws it is pumping out incredible amount of fluid, causing multiple cysts.

We have been advised that because of the location of these cysts that there is a 10% chance of fatality, 30% chance of disability (vision, speech, and mobility), 40% chance of staying "the same" and 20% chance of improvement. Not doing the surgery has a 100% risk.

Jane was to go into surgery on Thursday, this has now changed to Wednesday afternoon.

4/6-February-2005
Due to the recent issues with sporadic loss of leg control, memory, and general "fogginess" Jane had a scan on Friday evening. The good news is that the tumour has shrunk about 10%, the bad news is that the cyst that was 2cm diameter a mere 20 days ago has grown to 4cm x 5cm and is exerting great pressure on Jane's brain and left retina.

I rang the doctor on Friday evening and we discussed going back onto the Dexamethasone and the appropriate dose was to be 6mg. This has not really worked and we have quickly gone from 6mg Friday to 10mg Saturday and today 16mg. Jane is still in a bit of trouble, but it comes and goes. I spent the today agonising over whether to drive her to hospital or not, however in the end I've decided to wait to see how she goes tonight after the 16mg of Dexamethasone kicks in.

I have been researching GLIADEL Implants more in depth this weekend and it seems from trials that the median survival for Glioblastoma Multiforme patients is increased to 13.9 months from 11.6 months. These wafers can only be implanted during brain surgery, are fragile, have particular storage requirements (<20 degrees at all times), and are quite expensive (as with a lot of promising cancer treatment the Australian Government does not contribute at all to their cost). It also appears that they are not readily available "on call" in Australia and will need to be flown in from the US. Hopefully we will have time to find a good surgeon whom can implant them before Jane's situation degrades too much further.

We have appointments tomorrow and shall be seeking surgeons opinions, it is not a given that the cyst is in a location that is indeed operable.

30-January-2004/3-February-2005
Jane has had an up and down week. She's been sleeping a lot, and although there are no pressure effects (headaches, nausea, dilation of pupils, etc) she has been a little more unsteady on her feet and her memory has become a little worse.

Jane has started on Clomipramine and we are following the same protocol as the UK trial as funded by the Samantha Dickson Research Trust.

With regard to chemotherapy, we have been unable to work out a clear plan of attack and so for the next two weeks shall go back onto a daily dose of Temodal and Procarbizine at 100mg each. Jane's next scan shall be on February 14 and we shall discuss the way forward with our oncologist, hopefully reaching a conclusion then.

Here is the daily timetable of medication Jane is currently taking. We manage this by having nine jars with various times on them, eg. 7am, 8am, 9am, and I place the appropriate medication in each jar the night before they are to be administered. There are 101 tablets, 3 scoops, 8 sprays, 40 drops, 4 Reishi "drinks", 2 "missing link" drinks, three cups of green tea, and 2 litres of water!

20/29-January-2005
Jane has been enjoying the break from the daily chemotherapy regime that she has been on. She has been able to get in the pool most days, as it has been quite hot here this week, and is starting to get more mobile. Three of our four Children will be at school from this week so this will give me more opportunity to spend some time alone with Jane and also get her out of the house more.

We still haven't decided which chemotherapy mix to go to but expect that we will have done so by Tuesday this week and begin on Wednesday. As mentioned before this is a big step for us as the mix has been working so far, but we know we need to change as otherwise the tumour may become resistant to the chemotherapy, and if that should occur, then the drugs would be rendered useless.

We have been conversing with a number of patients in the UK and have found some great new friends. We have learned of some promising new treatments that are seemingly only being trialled in the UK. One of these is Clomipramine, which has been used for some time as an anti-depressant but shows promise as an anti-tumour agent in malignant brain tumours. We have spoken to the group that are funding and supporting the trial (Samantha Dickson Research Trust) and Jane will likely begin taking Clomipramine this coming week.

The blood pressure readings are still an issue for Jane, averaging 82 / 55, because of the Verapamil. Bit of a vicious circle, the low blood pressure induces "sluggishness" which in turn makes it hard for Jane to get about and exercise, which in turn effects her blood pressure and circulation.

13/19-January-2005
Jane had scans on Monday and it was good news. The MRI shows no significant change from the previous month except that everything is a shade darker. In light of the  Dexamethasone drop this month, it is very likely that the treatment is doing some good and is causing some tumour necrosis.

In general Jane's blood counts are now just OK, the Topotecan has dropped them substantially, particularly white blood cells and platelets. Until now they were extremely good and were actually getting better each month despite the treatment.

The Liver counts that were so bad in the last few weeks have just miraculously gone to extremely good, they have dropped 90% in just a few days! It is believed that this is due to the high glucose levels Jane has recently had contributing to a "fat liver" syndrome.

We now have the hard task of deciding what to do next. Jane has had 129 days of Temodal straight and months of the cocktail, including Procarbizine for 90+ days. I canít say that our regimen has worked better than the traditional 5/28 (5 days treatment, 23 days of rest) protocols would have, who can tell(?), but I am "happy" with the results we have now.

We have chosen daily, continuous treatment as we thought that if we are hitting the tumour every day, we would more likely get it while it is undergoing growth whereas the 5/28 protocol may not catch the tumour at the right time. Alternatively, the 5/28 allows for higher doses and longer recovery time. I know that it is an argument that I see as yet has had no conclusive outcome. In any case we cannot continue in this manner as the tumour will very likely develop a resistance to the Procarbizine, Temodal and Topotecan.

We have decided that while Jane is "stable" we should hit it with something else to hopefully kill the cells that may have become resistant. We will continue the Procarbizine, and we are probably going to look outside of the "Temodal" family, although I am looking at CCNU. At this time I think we will probably go to a round or two of Caelyx.
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The side effects of Oral Topotecan were negligible for Jane, apart from a drop in white blood cells and platelets, so I can say to others considering it that as long as your platelets are very good you should be OK.

12-January-2005
We had an interesting day yesterday as I found a quarter of a 4mg dexamethasone tablet on the bench in our kitchen, which means that Jane had only taken 1mg the day before (normally she has half a tablet which I rather crudely cut, this one must have shattered and Jane not seen that there were two parts). There were no adverse reactions or pressure effects, this is a really good sign. I will now alternate between 2mg and 1mg to see if that works, then in a week try 1mg.

The two most important issues that Jane faces now are the Blood Pressure and liver toxicity. (Her liver is around eight times more toxic than that of a "regular" person.)

Jane stayed awake most of the day and the kids had a great day playing with friends from South Australia.

6/11-January-2005
Jane has been battling some back pain the last few days, it is slowly getting better. Unfortunately the dexamethasone (corticosteroid) has caused deterioration in the muscles in her back and at the same time has caused deposits of fat (this is the sort of "round" look that cancer patients get in the face and body - Jane hates it). It makes it a little bit more difficult when you find that the regular prescription for back pain is indeed dexamethasone!

With this in mind, and the blood sugar issues, we have been cutting back the dexamethasone quite sharply. As we have alternated days of 6mg/4mg and then 4mg daily without issue, we have now done the same with alternating 4mg/2mg and Jane is now down to a daily dose of 2mg without symptoms of pressure effects. We will stay on 2mg for a week, then try for 1mg. After that there is a real art of getting the body to start producing it's own supply again. (Jane's glands would not have not produced a natural supply for quite a while because of the steady dexamethasone dose.)

The blood pressure still remains an issue, it is too low, now averaging 85 / 65 and 70 BPM. Hopefully it will just increase over the next few weeks as I really don't want Jane to stop the Verapamil. (Perhaps I could find some ways to stress Jane out a little to get the numbers up Very happy)

We ran out of some prescriptions today and had to run into the city to get them written and filled. By chance I managed to speak to our Doctor as he was in his reception area. He is very pleased with Jane's progress, particularly the way she has coped with the introduction of Topotecan and the decrease in dexamethasone.
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There are a few people on the OzBrainTumour that are going through a particularly tough time right now. Jane and I wish you all the best and hope that your scans and appointments today/tomorrow go well.
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If you send an email with the Subject "subscribe" to updateme@symons.com.au you will receive an email whenever this site is updated. This will save you coming back here only to find that I have been too slack to update the page.

Sending with the subject "unsubscribe" will remove you from the list.
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Here is a very good series of video clips that explain a lot about cancer and tumour behaviour, it is very well worth a look. Just click on the first video clip and it will lead onto the next.

4/5-January-2005
Jane had two reasonably good days, the blood sugar averages are decreasing, and apart from some blurred vision she is feeling relatively well. Our next issue to tackle is low blood pressure, currently the Verapamil has Jane averaging 85/63 and 60 BPM (it is normally prescribed for high blood pressure).

Natalie and Antony are having a great time in SA.

23-December/3-January-2005
I Hope everyone has had as good a Christmas and New Year as we have. Jane is doing really well. Amazingly the introduction of Topotecan has not given Jane any side effects whatsoever.

We have been spending the last couple of weeks trying to figure out how to keep Jane's blood sugar counts within a reasonable range (she has been averaging around 13 on the meter, they should be between 5 and 8). We believe that the Dexamethasone is mostly to blame, but the Temodal is also adding to the issue. We have a prescription for Diamicron that seems to be alleviating the high levels somewhat, but will also trial taking the Dexamethasone last thing at night.

Tomorrow Antony and Natalie are off to South Australia for the rest of the week, they are so excited!

12/22-December-2004

It's been a long couple of weeks, with kids at home, Christmas, closing off business as best I can leading into the break, and  of course Jane starting all of these new treatments.

The PET scan was as thought, no change in size of the tumour, the middle of it is dead, and the edges may be live tumour or after effects of radiotherapy.

On Monday (20th December) Jane had another MRI. This showed no new growth other than what was described as a "tumour cyst" to the north-west of the main tumour mass, which went from 8mm to 10mm. This may well be a small tumour with a cyst attached or totally cyst - a further scan on 17th January will hopefully tell us that it is just a cyst.

Jane is very tired but is otherwise coping very well with the treatment. In fact, she is coping so well that we will be introducing another form of chemotherapy as part of the mix - Topotecan - in a 5 days on (1.5mg per day) and 23 day off protocol.

We have a phone appointment with Jeanne M. Wallace regarding Jane's diet and supplements tomorrow and I expect she shall have a whole lot of new things to add to the mix to counter some of the likely side effects of the prescription medication.

8/11-December-2004

Good news.

As the previous scans seemingly provoked a mixed response from the specialists with regard to necrosis we were able to make a case with them for Jane to have a PET scan, these are not normally available to patients with GBM as they are very expensive and there are very few PET machines in Australia. Unlike MRI and CT scans, the PET scan has the ability to directly show the amount of live tumour (In perhaps oversimplified terms, MRI and CT scans give you a map, like a road map {eg. Melway}, whereas the PET scan shows you the actual traffic that is on the roads.)

Jane had the PET scan on Thursday and the initial response I have from the operator of the machine and from our oncologist is that there is a fair degree of necrosis in the middle of the tumour. This means that the treatment is having some effect and that we are beginning to kill the tumour. I will see a full report and view the scans on Monday.

3/7-December-2004
The "cocktail" has been in full swing this past few days. I have been introducing two new drugs each day, utilising a binary approach to capture any side effects that may happen. If there are adverse reactions I figure that by doing this we could stop one drug, if the reaction stops (or not) we would then know the offending substance and look for an alternative.

Luckily we have had no adverse reactions and are now at full strength dosages, some 52 tablets spread throughout the day.

Jane is more tired than ever now and a little nauseas so I've introduced some Zofran to fix that and she is otherwise doing very well. She attended the Meditation classes on her own this week and came back via taxi - her first outing in four months without either friend or family present.

Antony continues to give Jane great cheer. During the week Jane, myself, and a friend from Canberra attended another award ceremony at Mentone Grammar where Antony gained another Academic Award for receiving straight "A" and "A+" grades  for both semesters one and two in all subjects studied!

30-November/2-December-2004
Jane is feeling quite well and is generally in good spirits.

The meditation on Tuesday was apparently a good session (I don't know as I went to sleep as soon as we were instructed to close our eyes).

We met up with other patients yesterday at the monthly brain tumour support group, which Jane really enjoyed. It does mean a lot for her to see that she is not the only one fighting this thing.

Jane's scan results are mixed. One oncologist says it's the same size as the mid-radiotherapy scan with likely necrosis. Another oncologist says it's a little smaller than the mid-radiotherapy scan with likely necrosis. The Peter Mac diagnostic report says progressive disease with no necrosis due to no lactate peaks on the spectroscopy. (Necrosis would be a good thing as it means dead tumour.)

Given that we now know that the tumour went from Zero (post craniotomy) to 5.1 x 5.3 x 5.8 in 24 days (mid-radiotherapy) we know that weíve at least slowed it down, if not stopped it growing.

Thanks to our wonderful oncologist we have been able to get all of the medication I've requested, some of which has required great effort from his staff as the substances are restricted. Jane begins the "cocktail" today. (As always anyone reading this whom needs medication but can't get the prescriptions can email me anytime for contacts).

25/29-November-2004

The last few days have been very "up and down" for both Jane and I as we nervously awaited the scans of the tumour to be taken on Monday (28 November 2004). These scans will tell us what has been going on, whether the treatment so far has worked, and also dictate what the likely effective treatments and prognosis may be. We will be picking up the results on Tuesday and visiting our oncologist soon after. Scary stuff.

We are so thankful to people for the "random acts" of kindness, I won't name them here as I haven't asked their permission, and in my dazed and tired state would likely misspell names, but they know who they are. We are so very thankful for the lifts to/from school, days out for Jane, nappies, meals, etc...

A lot of people do ask what they can do, a question I never quite know how to answer as I am so focussed on treatment. It has been great to receive calls, cards, emails, and generally just messages of support, it really helps Jane get through the day and this is probably the best thing anyone can do to help Jane right now.

22/24-November-2004
It's certainly been a very busy few days for Jane. On Monday a friend took her along to a class on makeup, hair, etc, at Cabrini in Malvern, which I believe was titled "look good-feel good". She enjoyed herself immensely and even came home with a new head of hair.

Tuesday saw us off to another meditation class at the Chinese Medical Centre in Brighton. It is so relaxing that Jane nearly nodded off again, as did I. I would certainly recommend Meditation for anyone that has a stressful life or is in need of some relaxation. It's pretty amazing how a few minutes of relaxation can recharge your batteries.

Wednesday was a very long and rewarding day. Jane started off with a morning tea with mothers from Natalie's school MGGS. In the afternoon we were very pleased to find out that Antony had won the Academic Award for his year level at MGS. Jane looked very proud indeed as we attended Melbourne Town Hall where his award was presented later in the evening.

There have been no signs of headaches at all, in fact things have been so good that the only issue Jane has had the last few days is that the "new hair" is a little itchy.
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Some people have had trouble with the Guestbook because of firewalls etc.. if you would like to leave a message but have had difficulty, please email it to me and I will post it up.

17/21-November-2004
Considering that we've taken the Dexamethasone from 16mg to 12mg it's been quite a good week. Jane is still sleeping a lot but there have been no headaches, which is great news as it means the pressure effects in the past are more likely to have been due to inflammation caused by the radiotherapy and Temodal than the tumour.

Jane has enjoyed getting out and about over the past few days, shopping with Auntie Jan and to the movies with my mother.
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We received some fantastic school photos of Jo-Jo (Josephine) and Antony from Mentone Grammar.

16-November-2004
Another appointment with our Chinese doctor today, this time I also picked up some "dirt" (that's what the medicine looks like) for myself as well. Much study today into BCNU and PVC. It seems PVC is the way to go but it is very harsh and the diet required is extremely restrictive and if not monitored very closely can cause serious side effects.

Tonight we went to our second meditation lesson, Jane had relaxing time and is certainly gaining some benefit from being able to relax her mind and body.
 
15-November-2004
We are on our way to the various Doctors, hopefully by the end of the day we will have finalised the immediate treatment that Jane will receive up until the point of the next scan, which I believe is still a few weeks away.
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We had a very good day with the Doctors, we are indeed very lucky to have found two Doctors that are so understanding, work well together and whom will let us tailor a regime based on the very latest research and our belief that we must hit this thing hard with everything available. For all sorts of reasons, medical and governmental, this level of care is very uncommon within Australia (or anywhere else for that matter). Jane will have another MRI on 29-November to see how the radiotherapy has performed. Along with the oncologists we have devised a treatment cocktail that includes:

Accutane (13-cis retinoic acid)
BCNU or PVC (both are heavy duty chemotherapy)
Celebrex
Gleevec (also known as STI-571)
Melatonin (already doing this at 21mg daily)
Tamoxifen
Temodal (already doing this at 100mg daily)
Thalidomide (Drug made famous by birth defects and very hard to obtain)
Verapamil

Now that we know the course of treatment we will be able to define the dietary and supplement needs with Jeanne M. Wallace so as to counteract the various side effects and promote the cocktails efficacy.

12/1314-November-2004
The weekend was fairly uneventful for Jane, lots of sleeping. I purchased a treadmill for Jane on the weekend, hopefully this will allow her to regain some fitness and strength. Antony and Natalie had a great time visiting the circus with friends on Saturday.

12-November-2004
All of our Doctors appointments for today have been cancelled. We have been rescheduled for Monday but been told to "bring a good book".

11-November-2004
For those of you whom know about Natalie collapsing (fainting?) during Violin at school, we have had numerous tests back and a clear CT of her brain. All blood counts are normal and she is now OK. It is very likely that she had a virus.
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Jane is feeling a bit tired and is currently very frustrated with the restrictions that have been placed on her with regard to mobility and diet. Unfortunately she has to have someone with her constantly as she is still at risk of seizure and still has short term memory issues that prevent her dealing with anything that could cause injury if unchecked (cooking, etc..).

10-November-2004
This afternoon Jane and I are to attend a brain tumour group at the AMREP Education Centre Alfred Hospital.
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The meeting was probably the best few hours Jane has had for a while. I think she really felt she was not alone in this, that there is a wider community facing the same issues and choices.

9-November-2004
Now that the radiotherapy burns have healed over we are using hospital grade Sorbolene cream to ease the inflammation and moisturise the resultant scar tissue on her neck. Jane went out shopping today with Auntie Jan and enjoyed herself immensely, as did Teagan, whom now runs expectantly to the pusher whenever anyone goes near the front door.

Tonight Jane and I are to begin Meditation classes in Brighton with our Chinese Doctor.

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The Meditation class went really well, The class size is really good, there are only four of us. The first "lesson" went into a number of calming visualisations that were very relaxing, so much so that we both nearly nodded off to sleep a number of times. It is already apparent that this will be of great benefit to Jane.

8-November-2004
Jane is feeling very well considering what she has been through and is looking forward to getting to visit with as many people as possible before school breaks up and Christmas is upon us. Apart from being very itchy and sensitive to pressure Jane's neck has fully recovered and her hair is starting to grow again (we are yet to see if it will grow back curly or not, apparently this is a common side effect). We are very much looking forward to meeting with our doctor on Friday the 12th to discuss the next steps that need to be taken.
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A guestbook has been added to the site so that people can leave positive messages here for Jane and others to read.

5-November-2004
The major news is that the radiotherapy burns have nearly healed over, quite tender still, but Jane has regained the top layer of skin to almost all of the back of her neck.

More updates are on the way... much time has been spent in the last week researching literally hundreds of treatment protocols, drugs, supplements, etc and deciding which direction to go from here. Our next scans are some way off as the side effects of treatment so far need to settle down before they would become useful.

27-October-2004
No more radiotherapy!!! We are continuing with the current regime of medication and have just received an inch thick report from Jeanne M. Wallace that I will be studying tonight. We will be having a nurse come by each day to look after the burns and apply new dressings.

Janes' short term memory has been taking a belting during the past few days but other than that she is doing really well and
is sleeping much less, now around 12-16 Hours per day. She is up to having visitors or phone calls in the morning or afternoon.

26-October-2004
We met with the radio oncologist today and discussed the turnaround in health since the Dexamethasone increase to 16mg. As the "pressure effect" symptoms have all but gone he is thinking that the tumour growth seemingly indicated by the scans on 7 October 2004 may have in fact been a side effect of the radiotherapy rather than tumour (perhaps cyst, inflammation, etc.) - if so, this is very good news. He also explained that while the treatment stops tomorrow the burns will peak in about a week.

25-October-2004
Jane remains positive but the radiotherapy is now really doing a lot of damage to the skin, with the epidermis (top layer) being totally burnt off at the back of the neck (hopefully the same degree of damage is being dealt to the tumour). There was some good news as a duty doctor took a look and found that it was not infected as I had previously thought.
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As we go into the final two days of radiotherapy, I need to thank all at the The Peter MacCallum Cancer Institute in Moorabbin. Without exception, from the front reception desk, to the doctors, nurses, and radio-machine specialists, the people there have been just fantastic. If you are unfortunate enough to have to go through radiotherapy treatment we would have no hesitation in recommending them.
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I've been emailed that the nutritional and diet reports are on their way from dietician Jeanne M. Wallace, PhD, CNC. I can only hope that cooking and arranging the new diet will be within my skill set. (Poor Jane!!)

23/24-October-2004
With just three radiotherapy treatments to go we are finalising the research into what is to happen next, look to the "Currently Researching" list to see what we are looking into. We're glad that the treatments are nearly over as Jane's left hand side now looks like it's been cooked and there are multiple sites of infection due to the burns. Other than that Jane is doing quite well and stayed up all afternoon on Sunday with visitors.

20/21/22-October-2004
Jane has continued the recent trend and has been feeling very well, she has had nausea just the once in three days and importantly has had no headaches. There is some hope that the tumour is reducing in size, time and scans will tell. The next scan will be a few weeks away now after the effects of radiotherapy settle down.

Today we spent the entire day out and about with Teagan while Josephine was with Auntie Jan on a trip with her preschool to a local farm.

We also visited with the radio oncologist today after radiotherapy. Jane and I are really happy with him, if you are in Melbourne and need someone you can trust and talk to please email me and I'll give you his details, same can be said for our chemotherapy specialist (email janes-site@symons.com.au).

19-October-2004
No problems at all today, not even the slightest bit nauseous directly after the radiotherapy. Jane is getting more accustomed to wearing her reading glasses (she never needed glasses prior to the brain haemorrhage) and I've talked her into finding something she'd like to buy for herself from the mountain of Christmas catalogues seemingly coming in on the hour.

The kids are excited as the pool is almost chemically balanced and ready to be used. As always anyone wanting some relief from the heat this summer please don't hesitate to come down for a swim, and perhaps even a vegetarian meal :)

18-October-2004
Christmas shopping was the order of the day, we drove into Melbourne and have now got all of the kids presents sorted. In the end it was a bit much for Jane as we forgot her anti-nausea medication (Zofran Wafers) but it was worth it just to get her out in the sun. Radiotherapy went well, only seven treatments left now.

17-October-2004
We went on a family outing for the first time in two months today. Jane stayed awake and alert the for the entire trip, not only that, she had a full dinner and got the kids ready for bed. Many of you have asked for photos of Jane, so I took one tonight of Jane bathing Teagan and Jo-Jo (Josephine). The drugs and hospitalisation have effected her posture and made her face rounded, and of course the radiotherapy has left its mark, but the spark in Jane's eyes and beauty still shine through regardless.

Jane has also been accepted as a patient of Jeanne M. Wallace, PhD, CNC. From accounts of survivors and various cancer hospitals it appears that she is the United States' foremost specialist with regard to GBM and nutrition. She shall do a full dietary analysis for Jane.
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Jane had a full nights sleep for the first time in quite a while last night. We were prescribed some cream for the radiotherapy burns, which has really helped. The burns are all over the left hand side of her head and are quite a bit worse than a bad case of sunburn. She has lost most of her hair, but a few strands remain. The radio oncologist said this was very surprising and added that they were her best friends (as they'll never leave her regardless of what she does to them :) . Jane is feeling well enough that we will be going for a drive down the coast later on after lunch.
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Added "Currently Researching" to outline what we are currently looking into as possible treatment post radiotherapy.

16-October-2004
Jane stayed awake for most of the day, with just a couple of two hour naps, and ate a good meal at dinner time. She is getting better every day.
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More scans added, these are from September 8 and were used for planning the ~60gy / 30 sessions of radiotherapy. It is clear from these scans that a lot of the tumour was resected during the Craniotomy.

15-October-2004
Jane is feeling the best she has done for two months. She is still sleeping a lot but it is a truly amazing turnaround as we were seriously considering ceasing radiotherapy treatment only a week ago. We can only hope that this means that the water around the tumour bed has begun to be absorbed and that the tumour has stopped growing. There are now only eight radiotherapy sessions remaining now.

14-October-2004
Jane was up early today and got the kids ready for school and made their lunches, a pretty good effort, radiotherapy is at 10:00am.
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A note of thanks for the cards and emails, it really perks Jane up when she receives them.

13-October-2004
Another good day. Jane went to radiotherapy, had all her medication without trouble, ate well (for the second day running), and has been awake for five hours during the day. I asked the Chemotherapy Oncologist about adding Thalidomide but was told that there are no studies indicating good results for GBM, he suggests waiting until after the radiotherapy, having a scan, and perhaps adding another chemotherapy treatment such as Celecoxib.

12-October-2004
Radiotherapy was at 10:15am today. Jane handled it quite well and a check up revealed that she has stopped losing weight (she had previously dropped 10kg in two weeks). She is very sleepy right now but it looks like she'll be awake for the afternoon.
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Jane made some calls and stayed awake for a couple of hours this afternoon with a visitor. Notably tonight she has eaten a "real" meal for the first time in six weeks, two of Auntie Jan's bean burritos with heaps of fresh home made guacamole on top.
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Nine new scans added for the MRI on 3 August 2004, most clearly show the tumour. (When reading scans the orientation is reversed, left is right and right is left.)

11-October-2004
Off  to radiotherapy today at 1:30pm. Jane's not looking forward to it, her head is very sensitive due to the radiotherapy and she has very little hair on the left of her head.
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Jane coped well with the radiotherapy and meeting with the doctor today, until she got outside the hospital, where she was ill and could not walk to the car. She's much better tonight though, had another liquid meal (Blended BonSoy, bananas, vitamins and NW Protein Powder) for dinner, watched a little television, read a schoolbook with the kids, and is now asleep.

10-October-2004
Another good day, Jane has slept all morning but there has been no vomiting or headaches.  More visitors in the afternoon, which is good as Jane then stays up in the day and gets to sleep at night (an unusual occurrence at the moment).

9-October-2004
Jane is doing quite well today, she's been up and about most of the day and meeting with visitors. Perhaps it's the extra Dexamethasone finally kicking in and not having radiotherapy on the weekend.

8-October-2004
The radio oncologist has indicated that it is likely the tumour has indeed grown and is around 2cm diameter. He has indicated that because the original scan was not of the "contrast" variety, we can not be sure what the size of the tumour may have been prior to the radiotherapy treatment. We will continue the radiotherapy and see next week how it reacts. If Jane is OK then we may double the dose, that is, do the radiotherapy twice a day. (There is no hard evidence that this helps, but there is anecdotal evidence of success to be found on the internet.)

7-October-2004
The CT scan seems to show that the tumour is growing. From the scale on the scan I think it is around 2cm in diameter, there is a lot of necrosis, swelling and "water" (cyst?). There are indications of a lot of pressure, the left ventricle is completely closed (not visible). It seems what we are doing is just not enough and we have to consider whether to continue radiotherapy or not. We will find out more when we meet with the radio oncologist tomorrow.

6-October-2004
Jane is not well today. Dexamethasone is being increased to 16mg as as the pressure on her left hand side has increased. She is vomiting and has constant headaches. She is to have a CT scan tomorrow to see what's up. We are half way through the radiotherapy.

5-October-2004 and before....

These are notes taken from my diary and memory of the time directly after Jane had the initial symptom of a brain haemorrhage....

Day 1 - At emergency I am told that Jane has had a Massive Brain Haemorrhage and will likely not make it to see the next morning. She is transferred to Royal Melbourne Hospital (RMH) "we donít know why it occurred" - Told Jane could go home Day 4.

Day 2 - Still going home Day 4. Told that there is no problem that they can find. (** However I now have an internal email dated this day where a doctor asks for an MRI immediately because he believes there to be an underlying tumour **)

Day 3 - Still told that they can find no reason for the Hemorrhage, Jane is assessed for rehab and transfer is booked. I am still not told of tumour suspicion. MRI was taken that day.

Day 4 - Told that they need to do a small biopsy, Jane must stay in hospital. This biopsy was to be a "needle" collecting a sample of brain tissue.

Day 5 - no change in diagnosis, no discussion of the MRI. (At this time I would not have even known what an MRI was.)

Day 6 - Doc requests conference, discusses biopsy as a surgery, I explain I was told it was a needle, doc explains that it is a full craniotomy "as they think there is something there". Told surgery is an emergency as hemorrhage could recur and that would likely be fatal. Surgery is set for Day 11, apparently the first available. I talk of changing to the private system as this was only meant to be two days, now it's going to be more than 11, told not to worry about it, just get the craniotomy over with.

Day 7 - Nothing. Except Jane is spaced out and fed handfulls of pills and shots regardless of whether she is in pain or not. (she is on a dosing "schedule", there is no interaction to decide dose)

Day 8 - Same as 7.

Day 9 - met the surgeon. His first words "I just got your file yesterday, sorry" almost like a "donít blame me, I didnít do it line from Bart Simpson". I am told that it could be a fast growing tumour and things donít look good, the biggest issue is to get the surgery done ASAP as a second hemorrhage would likely prove fatal.

Day 10 - Jane is prepped.

Day 11 - Surgery is cancelled!!!!!

Day 12 - meet surgeon, told that surgery "could" occur on Day 18 but not definite (remember it's emergency life/death). I ask what can I do to get Jane treated NOW - told to go private and then you can just be "booked in" - I am sooooooo calm externally but internally as close to killing someone as I will probably ever get. Surgery is "booked in" for day 17.

Day 13 - Jane is more dazed, confused, I assumed this was due to her condition. Otherwise no change.

Day 14 - Transfer to Melbourne Private Hospital. Drug regime is changed, nurses check if she needs them before administration, most are ceased or decreased in short order. By night Jane is more responsive and feeling better.

Day 15 - Jane is bright, memory has come back, I can converse with her. She tells me how much nicer the nurses and doctors are here (Melbourne Private) than at "the other place" - little did she know that they were the same doctors and predominantly the same nurses.

Day 16 - Jane is really good, if I didnít know otherwise I would think there is nothing wrong. Individual care and attention has made a huge difference.

Day 17 - surgery goes ahead as "booked" (unlike under the public system)

Day 18 - Glioblastoma Multiforme confirmed, I start research, you know the rest.

RMH plainly misled me about Jane's condition, they also misled me about the benefit of going private, where Jane would have had her operation a lot earlier (and received far better daily care).

At RMH I saw people bring food to people whom were not in a state to feed themselves, then sometime later someone else would remove the food untouched. People with brain injury roved the wards at all hours, one poor gentleman could not remember seeing doctors at all (he obviously had seen them) and would sit next or accost anyone walking by to tell them of his plight, often swearing at the top of his voice for hours (even in her sedated state Jane was so scared), I have so many other things that I could talk of regarding unchanged bedpans, etc, etc, etc. The memories of RMH still haunt me and I feel guilt that I haven't gone back there and kick their backsides for the way they treat people. I would have probably not been able to achieve much though as I have subsequently found that RMH has a long history of bad practises and indeed at the very time Jane was there a very damning inquiry was just completed. I would have thought they'd be on their best behaviour, alas not. You don't have to search the internet much to find issues with RMH, within two minutes I came up with these and numerous others:

Threat to patients at city's hospitals (this was in 2002)
"Health Services Commissioner Beth Wilson yesterday released a 68-page report highlighting problems at the Royal Melbourne ranging from the accuracy of medical records and drug dispensing, to deficiencies in communication and management."

Nine hospital patients may have been exposed to CJD
"The Royal Melbourne Hospital deeply regrets that a lapse in our stringent infection control procedures has occurred," said the hospital's chief medical officer, Dr Jenny Bartlett.

I am so troubled with what I allowed to happen back then in just going with the flow and accepting the RMH advice. I was an idiot, nothing more than a spectator, maybe I was in shock but I will never forgive myself for it. Their extreme lack of care has had one ever-lasting positive effect, it caused me to realise that I must take control, that I must be determined and not waiver otherwise Jane will not get the care she needs.
 

     

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