The following is an outline of treatments Supatra
has undergone since diagnosis and those she is currently on now. We hope that this information will be
helpful to those seeking information for their own loved ones with brain
tumours, especially those children with DIPGs. It must be pointed out that
Supatra is not cured nor has she improved from her initial symptoms which
resulted in her diagnosis but Supatra is alive, functional and still has a
quality of life far beyond what the doctors initially thought would be the case. It should be noted that Supatra’s first
alarming symptoms started in November 2010, she was then diagnosed on 26 Jan 2011, and
was not expected to live long past her March 2011 birthday. The median life expectancy for Supatra's Grade IV DIPG
tumour is 9 months according to the doctors. Supatra is now in her 16th month since disgnosis and
20th month since symptoms first started (in retrospect we determined
that her sudle symptoms first started in late August / early September 2010 and the first "I know there is something definitely wrong with my child" symptoms in November 2010).
We are not sure what is keeping her tumour stable
but but we now do believe that a lot of this is due to the Thai herbal
medicine that has been prescribed by a retired Thai oncologist who has a large
following in Thailand, has an 80% cure rate for some cancers and who’s
medication he gave away to the Thai Government Pharmaceutical Organization (GPO) for the benefit of everyone. Some of these formulations have now been approved by the Thai Federal Drug Administration. Why do we believe this? Because we have been giving Supatra these
pills since approx. two weeks after her diagnosis. The antineoplaston’s have also had an initial positive impact on the
tumour and we think that the combination of the medications and supplements we
are giving her now is keeping the tumour stable – which is one hell of a lot
better then growth! Of course, we
continue to be anxious as we approach each scheduled MRI scan and the next one
scheduled for the 30th May 2012 will be no exception.
|
Treatment
|
Date Started
|
Date
Stopped / finished
|
Dosage(s)
|
Aim
of Medication/Treatment
|
|
Dexamethasone steroid, Part I
|
25 Jan 11
|
25 Jul 11
|
2 x 7.5ml
/ day for 3 days then wean down until
about 2.5ml once a day for 3 days before stopping.
|
Reduce swelling in the brain cavity. Supatra
was on and off this steroid during this period - mostly on. Each time starting with a large pulse of 2 x 7.5ml Dex per day
for 3 days then starting the weaning process.
|
|
Ranitidine Hydrochloride
|
25 Jan 11
|
|
2.5ml per day before steroid dose
|
Protects stomach from harsh affects of steroids on gut.
|
|
Radiotherapy
|
6 Feb 11
|
16 Mar 11
|
54
Gy in 30 refractions
|
Shrunk Supatra’s tumour and reduced some of her
symptoms but never cured her left facial palsy. Supatra was almost 6 yrs old at this time and tolerated the
treatment well and only become nauseous a few times which was controlled by
taking Ondansetron.
|
|
Ondansetron
4mg/5ml
|
6 Feb 11
|
16 Mar 11
|
5ml
each day of radiotherapy
|
Given
everyday of radiotherapy for the prevention of nausea.
|
|
Thai Herbal medication
(consisting of some red capsules and small white pill.
See note below about how we got these and why we tried them)
Thai Government Pharmaceutical Organisation (GPO)
identity number it has been assigned is GPO1986, which may also be the year
the drug was first applied for to the Thai GPO
|
10 Feb 11
|
Present
|
First year: 4 x red capsules twice a day for a total of
8 x caps and one white pill once a day every second day. All taken 30mins after a meal. Since February 2012, red capsule dosage
remains the same; small white pill is decreased to once every three days;
additional two white caps taken with each dose of red caps for a total of
4/day. All taken at least 30mins
after a meal in the morning and evening.
|
Stop
tumour from growing but Thai doctor stated it will not shrink the
tumour. Since February 2012 the Thai
doctor has prescribed a reduction in the frequency of the small white pill
but prescribed an additional two white caps that is supposed to help detox
Supatra’s liver. This was done after
reviewing her blood panels.
Cost:
approx. £400.00 every two months
Procurement: Punny’s brother has to personally drive to the doctors location
and pick up the prescription and the doctor will only issue two months supply
at a time. It is then sent through
the mail to us.
|
|
BGlucan Herbal Mushroom extract from Taiwan.
|
Mid April
2011
|
Present
|
7 capsules/ day at least 30mins before a meal. Broken
down to 4 in the morning, 3 before lunch, 3 before supper.
|
Balance
and boost a person’s immune system.
This herbal medication contains over ten different mushroom extracts.
Cost:
£50.00 per 120 cap bottle
Procurement: through a Tao Master in
Thailand who acquires these from Taiwanese sources. Bottles are then shipped to us.
|
|
Burzynski’s Antineoplaston (ANP) treatment
|
14 Sep 11
|
Present
|
Target dose based on weight of patient is
200ml/infusion for AS-10 and 18ml/infusion of AS1-2; 6 infusions per 24 hrs once every four
hours. Once at target dose it takes
2:10 hrs per infusion.
|
Experimental treatment designed to reduce and/or
eliminate the tumour. A complete
response for DIPG tumours is low at around 30% with longer term cures even
lower. HOWEVER, this is one hell of a
lot better then the 0% chance the oncologists give DIPG patients. See additional note below.
|
|
Dexamethasone steroid, Part II
|
21 Sep 11
|
24 Nov 11
|
Small 1.25ml / day
|
Required as Supatra’s tumour reacted to initial
antineoplaston treatment with tumour breakdown which results in initial
swelling of tumour inside brain.
Where as the NHS always told us to start steroids with a large pulse
and then wean down; the Burzynski clinic doctors told us to start with a low
1.25ml dose and only increase if necessary. She was then weaned off Dex by 24
Nov 11 as she was off ANP treatment and then started on a very slow increase
in ANP treatment over several months.
|
|
Dexamethasone steroid, Part III
|
12 Jan 12
|
11 May 12
|
1.25ml/day
|
Supatra
was put back on this low dose to counteract any possible swelling in her
brain resulting from the ANP.
|
|
Potassium Supplementation
Sando-K, effervescent Tablets,
|
25 Sep 11
|
Present
|
1 Tab dissolved in a small glass of water every 12
hrs.
|
Balance electrolytes as the ANP treatment can alter
sodium and potassium levels in the blood which must be rectified. Initially prescribed at a lower dose but
then slowly increased as required and prescribed by the doctors.
|
|
Iron supplementation
Sytron 190mg/5ml Elixir
|
8 Jan 12
|
Present
|
15ml / day initially for first few months but now
reduced to 10ml per day taken in 5ml increments spread through the day.
|
Supatra’s blood analysis always showed a very low iron
count and we asked that she be given this supplement in case this low iron
was affecting other things in her body.
The doctors said it didn’t really matter but we believe otherwise.
|
|
Blue Green Algae, 500mg
|
9 Feb 12
|
Present
|
2 caps twice a day during or immediately after meals
|
detoxing brain and body of the affects of radiotherapy
and for helping the body's immune system.
|
|
Grape Seed Extract, 50mg
|
17 Mar 12
|
Present
|
1 cap twice a day during or immediately after a meal
|
Studies have shown Anti-tumour properties in grapeseeds
but we are not sure the amount that would be needed nor whether the product
that we are using is pure enough but felt it would not hurt to try giving her
this. See this article: http://www.medicalnewstoday.com/releases/240883.php
With all new herbal treatments We always start off on the lowest possible dose first and watch for any negative reactions before increasing it.
|
|
l-arginine, 500mg
|
17 Mar 12
|
Present
|
1 cap twice a day during or immediately after a meal
|
Studies have shown that l-arginine supplementation may improve recovery of T-cells which are suppressed in tumour patients. See this article: http://www.medicalnewstoday.com/releases/238155.php
|
|
B12, rice and bran oil
|
20 May 11
|
Present
|
1 gel cap in the morning
|
vitamin booster
|
|
Kids Omega-3
|
15 Feb 11
|
Present
|
1 gel cap in the morning
|
vitamin booster
|
|
Vitamin C and Zinc effervescent tablets (1000mg Vit C
and 15mg Zinc)
|
10 Feb 11
|
Present
|
half a tab a day dissolved in water
|
Vitamin booster and there is anecdotal evidence that Vitamin C may have an
anti-cancer affect.
|
|
Vegetable and fruit juicing
Spinach
broccoli
carrots
beets
oranges
Apple (sometimes)
Cauliflower (sometimes)
Kiwi (sometimes)
ice (turns it into a fruit-type smoothie)
Honey (sometimes)
blue berries (sometimes)
Strawberries (sometimes)
|
10 Feb11
|
Present
|
4-8 oz glass each time
|
It has been an uphill battle to get Supatra to drink
these juices and we have tried too many combinations, additions to, and
subtractions from the recipes that it would be impossible to recall them
all hear. For the last three months
we have managed to give her at least a 4-6 oz glass of juice every other day
or so. Only advice I could give is to
add a fair amount of fresh oranges, some ice, and sometimes some honey helps
to make it more flavourful for a child.
|
|
Budwig Diet (cottage cheese and flax seed oil)
Our mixture:
cottage cheese (as per Internet directions)
Flax oil (as per Internet directions)
freshly ground flax seeds (after initial mixing of main
two ingredients)
Water (enough so to be able to drink it through a
straw)
Frozen Strawberries
|
May 2011
|
Present
|
As per Internet recipe
|
This recipe has been another struggle for us as this is
not something a child would normally like to eat. We have given this to Supatra off and on - mostly off since
about May of last year. We managed to
get her to eat it everyday for almost two months prior to our Burzynski trip
and she was doing extremely well at the time and for the first time since
diagnosis managed to get her off steroids for almost two months. I recently started adding a little water
to the mixture and then frozen strawberries.
The water thins the mixture so that she can drink it and the frozen
strawberries turns it into a frozen yogurt smoothy. She likes this very much and has been drinking it everyday for
the last several weeks!
See this article for more info: http://cancertutor.com/Cancer/Budwig.html
|
Note: All supplements and alternative herbal
medications were first discussed and cleared with the Burzynski doctors in
order to ensure that there would be no negative interactions with the ANP
treatment.
Thai Herbal Medicine
After Supatra’s initial diagnosis, Punny told her
brother in Thailand and her brother researched what was available in his
country. He came across Dr. Sommai
Tongprasert who is a well known, even revered retired oncologist who developed
a herbal medicinal treatment for cancers and developed over 40 years. Normally, he does not treat foreigners as
his main aim is to provide cancer treatment to Thais, especially the poor. However, he listened to Punny’s brother and
looked over Supatra’s diagnosis scan and prescribed these pills which he stated
would not cure her but should stop the tumour from growing. Although I was very skeptical about this
initially I also was not too fussed as there was no other treatment hope we
were given by Western doctors. I do not
believe that Dr. Tongprasert has given a markable name to the pills he
prescribes us and I only know it as GPO1986 from the one research extract I was
given. Dr. Tongprasert has given other
herbal formula's that have shown very good anti-cancer results in other cancers
to the Thai Government Pharmaceutical Organization (GPO) which has now produced
several marketable products that have been registered with the Thai Food and
Drug Administration. My wife tells me
that the pills we are getting for Supatra may not be the ones that are now
being produced by the GPO as the doctor has many different formula's for
different cancers and so I will have to do further investigation to get you the
reader some more detailed information so that other DIPG patients may try this
as well. If you would like to know
more then please visit these links about the doctor and his cancer cure
successes (it must be caveatted that these links are not scientific in nature
but do give you some background info on the doctor's life, research, Thai
government involvement and links to other articles which may be of interest).
http://www.medical-tourism-in-thailand.com/g-herb-capsule-1.htm
http://cancerhealingstory.blogspot.co.uk/2011/01/cancer-patient-testimonials.html
In order for Supatra to get this medication we
must place an order with Punny’s brother every 6 weeks and he then travels for
2 days, waits with hundreds of other patients to see the doctor and get a new
two month supply for Supatra. He then
packages and sends it to us by courier.
Without his dedication, effort and time we would not have access to this
drug, which might be the reason for Supatra’s tumour stability.
Burzynski’s Antineoplaston (ANP) Treatment
Because of the relatively low chance (but much higher then current available conventional treatments) of success
with this treatment we continue to give Supatra other medications listed in the
above table and continue our search for new research/clinical trials and
alternative medical avenues hoping that attacking the tumour with as many drugs
and natural remedies will over power the cancerous cells, kill the tumour,and
finally balance her body so that whatever the underlying problem is/was causing
her cancer in the first place is remedied.
After the initial two months Supatra’s main tumour mass shrunk 12% and
one extension of the tumour could no longer be seen in the MRI scan. Since then Supatra’s tumour has remained
stable except for a small 0.2cm growth in one of the dimension measurements
seen in her 1 Feb 12 scan. We believe
this was a direct result of the need to take her off the ANP treatment in
mid-November 2011 due to neurological seizures. After this we purposely started Supatra back on ANP treatment in
late November 2011 and increased her dosages towards her target dose much
slower than was prescribed by the Burzynski clinic. This resulted in Supatra not reaching her full target dose until
late April 2012 BUT she was very near to her target dose by late January
2012. This period of being off ANP and
the very low dosage she was on for all of December 2011 very likely allowed the
tumour its ability tore-grow a little which then showed up in her 1 Feb 12 MRI
scan. However, this same scan also
showed a reduced enhancement of the tumour and since then her 22 Mar 12 scan
showed a stable tumour (no growth) and a continued reduction in
enhancement. 