I am sincerely grateful to Stephen and everyone for all the useful information on this blog, which I've been reading for many months now. I am posting on behalf of a good friend who really wants to help Vasiliy...
Vasiliy is a brave 7 year old Ukrainian boy and he's got malignant brain tumour…I've got limited information at the moment but in case any further clarifications are required, I'd be able to get additional information.
In August 2016, it became obvious that Vasiliy's right side got weaker.
Doctor's note says: Left-sided peripheral facial paresis with double vision. There is also a case of dysphagia. MRI has proven bridge glioma of the brain. There are no signs of cerebrovascular accident.
TREATMENT:
• There have been no neurosurgery interference
• 31/08/16 - 07/10/16 - Radiotherapy 1.8 GY/day (45 fractions) followed by Boost 1.8GY/day (9 fractions) + Temozolomide
• There have been additional treatment of Avastin
In May 2017 the dimensions of tumour were: 46*52mm
At present, Vasiliy takes the following coctail from what is available in Eastern Europe:
Morning:
Vidatox 3 capsules
Peroxide with water 10 drops
Levain 1 tablet
Licam 1 tablet
Spiruflor 1tablet
Ensil 1 tablet
Megamin 1 tablet
Laminin 2 tablets
succinic acid 1tablet
Reviplant 1 teaspoon
Stone oil 50ml
3pm:
Levain 1 tablet
Licam 1 tablet
Reviplant 1 teaspoon
Ensil 1 tablet
Laminin 2 tablets
Stone oil 50ml
Evening:
Reviplant 1 teaspoon
Stone oil 50ml
Spiruflor 1tablet
Vidatox 3 capsules
I have clarified with puredca whether DCA can be considered, as an alternative treatment for small kids and they have confirmed that it should be added. But I, personally have some doubts now.. My husband has been taking DCA, Avastin and Valgancyclovir for nearly 1.5 years now for his Grade IV glioblastoma and he's got neuropathy developed, as either the result of any of those or a combination of all. Has anyone heard of any neuropathy symptoms in pediatric glioma and whether DCA is really safe to give to a small child?
Would anyone happen to know what could be also added to the above coctail to help with tumour fight for little Vasiliy? We'd welcome any advice and help.
God Bless You All!
Thank you for all your kindness and help,
Nina
It is not the healthy who need a doctor, but the sick. I have not come to call the righteous, but sinners.
~ Mark 2:17
Could you clarify: I'm guessing "bridge glioma" is a translation, but I'm not sure what it refers to. Brainstem glioma perhaps? What is the original term?
ReplyDeletePeripheral neuropathy would be a potential side effect of DCA in children, just as in adults.
I would like to hear more details about the tumor location. Is it located in the brainstem? (pons, medulla, or midbrain).
"There have been no neurosurgery interference".. Does this mean he has had no biopsy and diagnosis is from MRI imaging alone?
Hi Stephen, you were right.
DeleteI've got the original MRI results in Polish and it is brainstem tumour, although there is no diagnosis stated in the MRI results note. Please see below the translation for reference.
I've also checked regarding biopsy. It wasn't possible to take biopsy, due to difficult to reach tumor location. Therefore, NO diagnosis is based on MRI results, as per the parents, but in MRI note there is no mention of tumour being malignant.. Is there a chance it could be benign? Would any of the markers in the blood test indicate malignant tumour?
Based on our own experience the combination Temozolomide+DCA+Valcyte+Avastin+coctail of (blackseed oil, Corriolus, vitamin C, CoQ10, TransferFactor Plus, GE132, curcumin, milgamma+TriVit (A, C, E) +D3/Magnium) is working and the signs of remission have been first mentioned in my husband's case this April, but is it safe to use that combination for a little boy, especially if the malignant tumor can not be confirmed with histology?
Thank you
Nina
MRI results of the brain - 11/05/2017
Description of the examination
The examination was performed in the TSE, TSE and FLAIR and DWP sequences, in T1 and T2 images dependent, in axial, frontal and lateral surfaces, before and after the intravenous administration of the contrast agent.
Within the area of brainstem is a tumour mass size 46 * 52 with infiltration of limbs and nervous tissue of the left hemisphere and compression of the branches of the right hemisphere of the hemisphere.
The tumor mass occupies the structure of the quadrangle on the left side and the limb of the left hemisphere of the brain.
After the intravenous administration of the contrast agent, a focal enhancement of the tumor tissue was obtained.
The tumor mass impinges on the light of the IV chamber, critically limiting the chamber's size.
Supratentorial ventricular system with enlarged light, with the features of cerebro-spinal fluid hypertension. Provision of fluids subarchnoid
above cerebellar tentorium with preserved light.
In comparison with the RM examination of the head from November 21, 2016, progression of brainstem tumor mass is visible in the structures of the left hemisphere of the brain and the features of hypertension in the supratentorial ventricular system
Thank you, Stephen.
ReplyDeleteIn Russian it says: мостовая глиомы мозга but they had it translated from Hungarian, as he had his radiotherapy treatment there... The term should likely be глиомa cтволa головного мозга but we need to be sure... I've asked them already to send the results and description of MRI scans and to confirm whether or not the biopsy was taken.
I guess the tumor is a Diffuse Intrinsic Pontine Glioma, or DIPG. The diagnosis can be made with MRI alone (diagnostic criteria are described, biopsy can be performed to define molecular pathways for targeted therapy but is as such not mandatory). The classic treatment is indeed radiotherapy without or with chemotherapy. There are several approaches for DIPG, all in investigation: chemotherapy via classical routes or
ReplyDeleteConvection-enhanced delivery or intra-arterial applicaiton, targeted therapies, immunotherapies, oncolytic virus, etc
SVG, thank you for your comment. I'm checking whether the tumor originates from the pons. If so, I assume, immunotherapy wouldn't be possible, as there is no sample to use in developing immuno treatment. Correct?
DeleteRegarding other methods you have mentioned, are there any clinics, preferably in Europe, you're aware of?
Thank you for your help!
Nina