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.
22/27-August-2005
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.
14/21-August-2005
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.
1/13-August-2005
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.
23-July/1-August-2005
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.
22/23-July-2005
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.
16/21-July-2005
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.
6/15-July-2005
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.
29-June/5-July-2005
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!).
15/23-June-2005
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).
5/14-June-2005
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.
1/4-June-2005
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.
22/31-May-2005
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.
09/21-May-2005
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.
06/08-May-2005
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.
01/05-May-2005
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.
27/30-April-2005
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.
24/26-April-2005
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.
21/23-April-2005
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.
20-April-2005
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.
08/19-April-2005
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).
31-March/08-April-2005
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!
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