Brain Cancer: GBM - Remembering Raisa
Introduction
In early July 2011, Raisa began experiencing severe headaches,
nausea, & vomiting. Based on the severity of the symptoms, Raisa and
my Mom (Tanya) repeatedly visited
The doctor returned with results and the first thing he said
was, "You have a brain tumor, and we have an ambulance ready for you to travel
directly to OHSU."
When arriving at OHSU in
At this point the mass was sent out for a biopsy to determine
type & grade, and our family prayed for a benign tumor.
Raisa recovered well and was asymptomatic. We
optimistically waited for results of the biopsy.
Diagnosis
We met again with Dr. Koppa a few days later, and he revealed
that Raisa had a Grade 4, GBM (Glioblastoma Multiforme) - the worst and most
aggressive and infiltrative brain tumor that a person can get. Our hearts
sunk, and tears then spilled truly for the first time. We discussed few
options we had and based on Dr. Koppas suggestion, he advised that we start
with Radiation therapy, then follow Dr Neuwelt's suggestion of using Temodar
Chemotherapy; which is a first line of defense for Glioblastomas. Dr
Neuwelt is the head of cancer research at OHSU, and was well known.
We agreed and Raisa scheduled herself for Radiation therapy at a nearby
facility shortly after. Raisa underwent radiation treatment for 6 weeks
before starting Temodar.
Just like most people in this situation, the moment we all got
home, we hit the ground running in a desperate attempt to find a
solution. Raisa, Fred (Raisa's husband), Anastasia (Raisa's
sister-in-law), & myself (Andy - Raisa's brother) began collecting books,
articles, and anything else we can get our hands on to find options for a
cure. We decided to do what we can simultaneously alongside Chemotherapy,
but ensuring that it's not conflicting. Of course anything we decided to
do, we ran by Dr Neuwelt's team first to get approval.
1st alternative solution: Regiment stew.
This was a book (Surviving "Terminal" Cancer) written by Ben
Williams, PhD had the same type of brain tumor. This was a story that
outlined supplements that he took at the same time as using Avastin, and 10
years later he was still going strong.
So we assembled the following regiments:
- Coriolus PSP, Maitake Gold 404, Melatonin, RaspberryGold Ellagic Acid, Borage Oil, Beta Carotene, Nature's Way (Alive!), Ultimate Probiotic, Turmeric
Note: If you're curious about mg details/doses/sources/details, email me at GoktasAndy at gmail dot com, and I can share our Google drive doc that shows every detail of our research & supplement stew that we assembled.
Only Coriolus PSP was able to be taken at the same time as
Chemotherapy because it did not act as an Antioxidant (conflicts with
chemotherapy), but instead was used as an immunomodulator to boost Raisa's
immune system during chemotherapy, thus helping keep immunity up during chemo
treatments.
2nd alternative
solution: Juice Cleanse
This was from another book (A Cancer Battle Plan) that outlined
a success story of Anne E. Frahm that did a juice cleanse that included:
Grape Fruit, Olive Oil, Carrots, Kyo Green (contains superfoods), apples, &
psyllium husk for Fiber; followed by enemas to extract colon toxin content
buildup.
My wife (Anastasia) and I tested the juice cleanse with Raisa and
found that it was tough but doable. Enemas are not fun, but are
necessary. This was not something we proceeded with vigorously as Anne
did in the book, but we knew that this was an option down the road (if needed)
based on how far the Regiment stew, healthy eating, & alkaline water
helped.
3rd alternative
solution: Healthy eating
Just like any healthy diet, stay away from bad unhealthy sugars,
sodas, white bread, white rice, artificial ingredients, non-organic foods, etc.
Technically, we must avoid most of the Western diet.
The diet then began.
4th alternative
solution: Alkaline Water
After additional research, we found that higher pH/Alkaline
water has antioxidant properties that may hinder cancer growth.
My wife (Anastasia - Raisa's sister-in-law) and I decided to
purchase a water ionizer from a local Athena dealer.
From that point forward, we began using alkaline water in our daily intake as a family.
Temodar Chemotherapy
Raisa used Temodar for 1 1/2 years and routine MRIs continuously
came back with no new tumor growths.
New Brain Stem Tumor
After 1 1/2 years of Temodar, Raisa found that she is beginning
to feel numbness in her left cheek & tongue. So Dr Neuwelt ordered an
MRI and finds a new tumor in the Brain stem (the worst possible location for a
brain tumor). He advised us that the cancer is not longer treatable with
Temodar and she is not a surgical candidate due to the location of the
tumor.
He begun to discuss the next options "“ Blood Brain Barrier
Disruption (BBBD) treatments (which is the protocol study) and the next line of
defense. We agreed and scheduled the new treatment.
At the same time, we introduced the 5th Alternative solution: Raw Food Vegan Diet
It concerned us much more as the abnormal aggressiveness
& increase of the symptoms increased rapidly (tumor growth causing pressure against brain
stem, thus causing neurological symptoms), so we were not simply going to wait
and have standard "commercialized" medicine help us as our 'only' option.
Note: There are NO long term success stories with only traditional treatments (radiation & chemotherapy), but only those of who go above and beyond have a chance and sometimes have successful
results.
So in addition to the BBBD protocol treatment, we decided to add
a bit more on our end by adding a new alternative solution - a Raw Food Vegan
diet.
Carole (Raisa's sister-in-law) came in to help. She had done vegan diets in the past and is familiar (discussions with clients of hers)
with the Raw food vegan diet. She was able to address the typical
questions & concerns about protein, calcium, etc. All nutritional details were addressed and clarified.
For added motivation & support, we also watched the
documentary "Forks over Knives".
We also met with Dr Dave Allderdice, a Naturopath Oncologist in
So we began our Vegan Raw Food Diet. Smoothies in the
morning and healthy meals for lunch & dinner. Anastasia (my wife)
& Carole (sister-in-law) began thorough research in new recipes to make
vegan raw foods enjoyable.
Blood Brain Barrier Disruption / Chemotherapy
The BBBD treatment was administered 3 days after discovering the
new tumor growth on the brain stem, and within a few days after completing the
BBBD treatment, Raisa's symptoms continue to worsen and get to the point of
impairing her ability to walk, talk, and to fully use her right arm and
leg.
Anastasia, Tanya, & Raisa informed Dr Neuwalt's nurse of
Raisa's progressing symptoms to which she ordered Raisa to be put on steroids
(helping with swelling/pressure of the tumor).
3 days later, Raisa deteriorated even further and my
mom (Tanya) contacted my wife (Anastasia - which is a Oncology RN) that Raisa
was having trouble holding water in her mouth and couldn't get out of bed.
As of this day, she was unable to use the walker anymore and needed the
assistance of a wheelchair. Anastasia urged a call to 911 due to the
speed of increased symptoms and severity.
The ambulance arrived and Raisa was transported to OHSU.
The ER doctor was advised by Dr Neuwelt's team to perform anther
MRI one week earlier than scheduled.
Avastin treatment
We come back the next day and Dr Neuwelt's team advises us that
the brain stem tumor has progressed and increased in size, additionally a new
small tumor was found on her temporal lobe.
Overall, the BBBD treatment didn't seem to be working either,
or at least not having a large impact on treatment. They then advised us
to begin Avastin treatment ASAP.
Unfortunately, because this was not a standard treatment (but it
is FDA approved), it required insurance approval before treatment could be
rendered.
Thursday, we waited. Friday, we waited. Business were closed on
the weekend, so we decide to head to the beach in
Before Raisa and the ladies were able to leave for the High Tea
lunch reservation, Fred (husband) received a call from OHSU and excitedly
announces that Avastin was approved.
Raisa & Fred rushed straight to OHSU and began treatment that
day.
Then we waited.
Something to note:
All sources tell us that Avastin is not designed for
"treatment", but only as a medicine to decrease symptoms as much as possible,
and inevitably having the unfortunate end result as tumor continues to
grow.
Burzynski Treatment
We've had many recommendations to the Burzynski clinic in Texas,
but haven't pursued it yet because of the cost. Insurance does not cover
these services. At least most insurances don't cover because it's
considered a "Supplemental treatment".
I contacted the Burzynski clinic in
Wrap up
This is where you all come in. The Shadrin & Goktas
families are unable to afford this treatment and pray that some generous people
chose to donate and help in finding a solution.
The outline above was simply to help you understand that we all
went above and beyond standard treatment. Alternatives that have had
successful results nonetheless for others. There are many more details
that I can provide, such as the fact that I even spoke with the Mushroom
Science vendor (Coriolus PSP & Maitake Gold 404 manufacture/supplier) in Eugene,Oregon "“ specifically with the engineer that
worked directly with Ben Williams for 10 years, but this letter would be become
endless.
Again, we pray for your generosity and hope that we can collect enough donations for Raisa's treatment. Please understand that your donations will be used wisely, and accurately as indicated with the plan listed above. I will also provide routine updates to this page to keep everyone up-to-date on Raisa's progress. Please continue visiting this URL/webpage for new information.
We will not stop fighting until our last moment on this planet, and even so, we will go down swinging.
Please help us fight, and we plan on defeating cancer that "thinks" it cannot be stopped. Time is of the essence, and God bless.