8/12/05 After a second radiological exam, an
MR Spectroscopy ,
doctors confirmed that Katya has an inoperable brain cancer with
a dire prognosis.
Here is a discharge order from OHSU
with the initial diagnosis.
8/13-8/30/05 We sent Katya's exams for second opinions
to world famous oncological and neurocurgical centers in the US (San
Francisco, Boston, Philadelphia, Johns Hopkins, NCI,
Washington DC) and abroad (Russia, Israel, Germany).
They all agreed with the diagnosis and the prognosis and gave virtually
identical possible treatment options.
8/18/05 Katya was placed on an all natural
low sugar, high fiber, gluten free diet.
She started taking vitamins and mineral supplements.
8/28/05 Katya started taking melatonin and artemether.
8/31/05 Katya started homeopathic and herbal treatment.
9/15/05 Second MRI exam.
The tumor is stable in size. Two small areas of enhancement have appeared.
9/27/05 Initiated a treatment plan based on several
small molecular inhibitors: Gleevec (imatinib), Tarceva (erlotinib), and
Zocor (simvastatin).
11/18/05 Fourth MRI exam.
The tumor is stable in size.
Severe hydrocephalus was found.
Katya was taken to OHSU Doernbecher Children's Hospital,
where she underwnet a shunting surgery.
12/20/05 Fifth MRI exam
showed that the tumor grew in size by about 10%
1/03/06 Started 6 week conformal radiation treatment (performed
without sedation locally, in Eugene radiology clinic).
3/03/06 Sixth MRI exam (first after the
radiation treatment) showed that the tumor shrunk by about 15% in
the maximal dimension and 35% in the other two directions.
The enhanced areas significantly decreased in size.
4/05-4/07/06 Katya hospitalized with high fever
(103o) and diarrhea. Even though no clear reason
was found, the general opinion is that it was a stomach flu.
4/12/06 Started treatment with Nimotuzumab (Theraloc, hR3),
an experimental humanized monoclonal antibody.
4/14/06 Seventh MRI exam
No change in the tumor size and no new enhancement.
6/8/06
Katya underwent a planned surgery at OHSU to install
a port-a-cath, a device for intravenous access for patients who need
frequent intravenous infusions.
It consists of a port and an intravascular device
inserted in a vein and tunneled under the skin of the chest.
The operation went well.
6/9/06
Started treatment with Ruta Graveolens 6c and Calcarea Phosphorica 3x.
It is a homeopathic treatment widely used for brain cancer patients
in India (and more recently in the US) with some documented
and
anecdotal success.
7/10/06 Eighth MRI exam
The tumor grew a little bit in size.
Significantly increased enhancement and vasogenic edema.
A small second tumor is identified within the right frontal horn.
7/19/06 Started Avastin/Irinotecan treatment (biweekly
infusions).
9/6/06 Ninth MRI exam
The primary tumor is fading (and its size remained the same).
The secondary tumor grew a little bit and
yet another small tumor appeared in the left frontal lobe.
Both secondary tumors increased in size and intensified.
The primary tumor spread into
the cerebellum
vermis.
10/11/06
During our visit to OHSU for a regular Avastin infusion
Katya's neuro-oncologist reviewed her last MRI and
concluded that the treatment no longer works,
since the primary and both secondary tumors progressed.
The chemo regimen has been stopped.
We are considering doing focal radiation for the secondary tumors.
10/14/06
Due to a rapid progression of symptoms most likely related to the
primary tumor activity, we decided not to start radiation for the secondary
tumors.
Mixed results:
The enhancement on the primary tumor on the brainstem decreased noticeably.
On the other hand, the secondary tumor increased in size and
another small tumor appeared in the left frontal lobe.
Both secondary tumors increased in size and spread into the
corpus callosum. There is area of enhancement in the right
frontal horn tumor.
The primary tumor also progressed into the cerebellum vermis area.
Symptoms and deficiencies
August 2005.
Crossed eyes.
End of September 2005.
Weakness in the right leg and hand.
Mid-October 2005.
Facial asymmetry.
First half of November 2005.
Hydrocephalus symptoms.
Treated by a shunting surgery on November 18.
Beginning of January 2006.
Difficulties with chewing and
speaking (possibly due to radiation edema).
Decreased after starting Decadron as the radiation treatment
progressed.
Early February 2006.
Low white blood counts, diarrhea, vomiting,
complete loss of appetite, canker-like sores in the mouth.
These symptomes subsided a bit after we reduced the dosage of
Rapamycin.
End of February 2006.
Symptoms receded and are approximately at
the early October level.
Katya regained strength and mobility in the right leg and
hand. Started walking unsupported again. Facial asymmetry
became less pronounced.
Mid-April 2006.
Weakness on the right side of the body further reduced.
Left eye started moving again, but the double vision is still present.
Early May, 2006.
About two-three days after weekly
Nimotuzumab infusion Katya develops nausea and diarrhea.
They usually disappear three days later.
These effects stopped by May 16.
Mid-May 2006.
Right hand became weaker again, but at the same time
facial asymmetry further reduced.
Early June 2006.
Katya's energy and physical strength further improved.
Now she again enjoys vigorous activities like walking, running, biking,
dancing etc.
First week of July 2006.
Katya became more symptomatic. Her left eye turns more inwards.
Facial asymmetry became very noticeable. Still, Katya hardly notices
any changes. Her spirit and the level of physical activity remain high.
End of July 2006.
In the beginning of the Avastin treatment Katya had occasional diarrhea,
nausea and vomiting which we treated with homeopathic remedies and Zofran.
All these symptoms stopped by August 1.
August 2-20, 2006.
Immediately after the second biweekly Avastin infusion
Katya developed a very rapid breathing (40-45 times per minute).
This is a known, although not very frequent, side-effect of Avastin.
Next time the infusion will be done at a slower rate.
Even though it only caused her a minor discomfort,
Katya was kept in the hospital for two days.
On August 5 her breathing rate went down to normal.
Similar effects occured after the next Avastin/CPT-11 infusion.
This time, though, she was released from hospital right away
and after a few days her breathing normalized.
During the last several weeks Katya's physical strenth and activity
level increased noticeably, whereas her symptoms remained more or less
stable.
September 5, 2006.
Katya's symptoms seem stable. Some of them (like right hand movements)
are slightly improving and other (like the right foot weakness) are not.
However, her physical and psychological state is much better than
before the beginning of the Avastin/CPT-11 treatment.
Physically she became stronger and more active. She enthusiastically
participates in various vigorous activities (like walking, biking and
running) which she was not able to do not so long ago.
Also she has been in a very good, joyful and cheerful mood almost
throughout the whole period.
September 22, 2006.
Symptoms are worsening. Muscles on the right side of Katya's face
almost stopped working. She also started having difficulty walking
and prefers to move by other means.
We are thinking about doing radiation treatment of the area of the brain
with the two new tumors. Currently we are studying various radiation
options.
October 2, 2006.
Katya is having difficulty with balance and is trying to avoid
walking on her own. Her speach is becoming more blurred.
October 12, 2006.
Katya stopped walking and cannot stand on her own.
Her speech is increasingly blurred. She is still in good spirits though.
October 16, 2006.
Symptoms progressed a bit further.
Katya cannot hold her head in a vertical position or sit unsupported for
more than a few minutes. Still she enjoys playing outdoors and
going for a walk in her stroller