Tuesday, 31 May 2016

Vaccines and Immunotherapy - German Clinics

Stephen, Linda, Annie, David and all on this blogsite -
we would like to start planning ahead for possible vaccines treatment. I have read through the information Stephen has shared on the four German clinics. Also heard about Linda working through a local clinic in Australia to avail of the same. Two quick questions:
1.  Is there a way to avail of the vaccines treatment in USA from these German clinics? Meaning is it possible to administer the injections after importing the vaccines that they prepare there? My mom can not travel in near future and therefore we are looking for options to get vaccines in USA. Has anyone arranged for it before in US?
2.  I have ordered gene testing of her tumor and detailed report on 500 genes should arrive in about 2-3 weeks. Can you please point to additional research to determine right vaccine/clinic selection.

thanks!

new IRM coming

Hello all.,

I am waiting the new IRM for Corneliu, he is programmed in 7 JUNE , and i will keep you all, posted.

My husband is retired from work ..medical reason, in other country they do the same? retirement  totaly ? i am just curious .

Melinda

Sunday, 29 May 2016

Dad's Cocktail - maintenance edits. Depakote, Metformin - continue daily?

All -


Dad seems to be about the same, maybe slightly more agitated, since my last post regarding growth.  I'm trying to score some Nivolumab.  If successful I will let you all know.  For now we are sticking with Avastin every 2 weeks + added in Temodar on the 5x day on cycle, as we never did that protocol just the initial dose during radiation last Sept/October.


Now that we're 6+ months post radiation, should I drop the Depakote?  We are new to Temodar 'maintenance mode'.  If I recall my notes, here's my thought on specific meds around Temodar:


7 days Pre-Temodar:
Depakote
Verapamil


During Temodar:
Depakote
Verapamil
Metformin
Disulfiram
Copper
Sildenafil


Constant:
Dex
Keppra
Plaquenil (it's all we have - I know phosphate is preferred)
Celebrex
Prozac
DCA
THC/CBD


If I go this route, we would be reducing the daily Depakote and Metformin - as Dad has taken both constantly since we started late August.  Any need to taper either of these?  Did anyone experience issues when dropping Depakote?


This is only the RX stuff.  I can post my whole cocktail if useful - just condensing for now. 


Thanks all.
Annie

Friday, 27 May 2016

Vadym and Tania. Please, help start correctly!

Hello everybody!
Thank you, Stephen, for having added me-)
My name is Tanya, I'm from Ukraine, Kiev. My husband Vadim, 46 years old, has been operated glioblastoma and 28 March 2016. Now he  gets radiotherapy and temozolomide.
Please, help us in the development of a strategy for the further treatment of Vadym.
We have the results of histology and immunohistochemistry:
1.Histology.
this is a very cellular glial neoplasm consisting of pleomorphic, atypical gemistocytic astrocytes which diffusely infiltrate the cerebral cortex and subcortical white matter, forming secondary structures of Scherer. Mitotic figures, including atypical forms, are readily recognized, as well as prevascular lymphocytic infiltrates and foci of microvascular proliferation. In addition, there are large areas of confluent necrosis with early organisation and some trombotic blood vessels.
2.Immunohistochemistry:
ki-67 ( sp6)- positive tumor expression to 15 %
Bcl-2a Ab-1 (Clone 100/D5)- tumor expression weakly positive,
p53 ( clone Sp5) positive expression to 5 %/
And another part of brain (left temple)/
ki-67- positive expression to 5 %
CD 45/T200/LCA Ab-2 ( clone PD7/26/16 +2B11)- positive expression in abscess,
GFAP glial fibrillary Acidic Protein Ab-6(GFAP) positive expression.

Conclusion :
Pleomorfhic glioblastoma ( ki-67- to 15 %) with a plot of abscecc.
Our protocol:
radiation and TMZ 180 mg 1х per day.
1. Metformin 2,5 mg per day (1+0,5+1)
2.Chlorochine 250 mg х 1 per day,
3. Levetiracetam 1g х 2 per day ( he has no seasures),
4. Dexametaxone 2 mg ( we are going to replace it for boswellia)
Supplements:
1 Boswellia serrata 6 caps. per day ( 1500 mg) http://ua.iherb.com/Himalaya-Herbal-Healthcare-Boswellia-60-Veggie-Caps/3689
2. Boswellia serrata 6 caps. per day ( 600 mg) http://ua.iherb.com/Life-Extension-5-Lox-Inhibitor-with-ApresFlex-100-mg-60-Veggie-Caps/40487
3. Curcumin 2400 mg per day http://www.ourkidsasd.com/products/2510%7CEnhansa%20(enhanced%20absorption%20curcumin)-Lee%20Silsby
4. Milk Thistle 150 mg х 3 times per day http://ua.iherb.com/Jarrow-Formulas-Milk-Thistle-150-mg-200-Capsules/127
5.Maitake 3 pills х 2 times per day ( Maitake body powder 3600 mg, Maitake Fruiting Body Extract PD- Fraction 1440 mg ) http://ua.iherb.com/Grifron-Maitake-Mushroom-Wisdom-Maitake-D-Fraction-Pro-4X-120-Veggie-Tabs/17000
6. EGCg 3 capsules x 2 time per day ( 2400 mg) http://ua.iherb.com/Now-Foods-EGCg-Green-Tea-Extract-400-mg-180-Veggie-Caps/11598
7. Iron 1 capsule 25 mg per day http://ua.iherb.com/Solgar-Gentle-Iron-25-mg-180-Veggie-Caps/10625
8. DHA 500 mg per day ( we are going to increase).

My most important question is, what can i add to protocol during radiotherapy?
Are the supplements, my husband takes, permissible with radiotherapy?


I would be wery gratefull for any your comments!
I wish you all good health! Thank you and especially to Stephen!
PS. Excuse me, please, for my english....it is wooden.
Tania.

Tuesday, 24 May 2016

Aunt Zelda's CBD & THC

We have helped a few of you and have been helped in return. Thank you. I apologize for a repeat posting however:

I found more Aunt Zelda's CBD oil (10g unopened and 8g opened) & THC (unopened 5g). Please contact me if interested.

 In addition we still freely offer to anyone in need:

  • Dexamethosone (barely used)
  • Atovaquone -PCP Pneumonia prevention while on chemo (unopened)
  • Ondansatron (Both opened and unopened)
  • Keppra (Opened & unopened)
  • Eliquis- Blood thinner (unopened & opened)
  • Midazolam (Unopened & unused) (emergency seizure control- What the ER uses)
  • Hospice medicines (Unopened end-of life comfort care meds)
  • Balsalazide Disodium- used for ulcertive colitis (Both opened and unopened)
  • Carnivora extract (barely used)
  • Ellagic Acid
  • Frankincense Extract
  • Ruta 6C & Calc phos homeopathic (open & unopened)
  • A variety of of Urinary tract supplements....


Costly items we would much appreciate some reimbursement if you can offer it:
http://www.helixor.com/integrative-cancer-therapy
  • Helixor Helleborus Niger D12 (4 unopened packs from Europe $75 each) (for inflammation)
  • Helixor Misteltoe Viscosan A 1, 5, 10 strengths ($150 worth)

Needs a good home:
  • Soft Foam helmet- saved my mother so many times when she became prone to falls

Best wishes to you and your family,

Kusuma

kusumacreates@gmail.com

Avastin works better with unmethylated tumours phase 2 study



http://www.brainlife.org/abstract/2016/Brandes_AA160306.pdf

Sunday, 22 May 2016

Newly diagnosed. Need help.

Thank you for adding me to the group.

My father (age 61) was just recently diagnosed with GBM grade 4. He had a small tumor in his left temporal lobe and had an awake surgery at UCSF two weeks ago where they were able to remove all of it. He is very healthy and fit and has been recovering so well from the surgery.

His test results came back and he is unmethylated, IDH-1 negative. 

I have read the Ben Williams book, watched the documentary, read everything I can find on the internet. I realize that being unmethylated means the chemo won't work well, if at all. Is there anyone that can help me to create a cocktail treatment plan for him? Is it still worth doing the chemo even when you are unmethylated? 

Also, the only clinical trial available to him at UCSF right now is the nivolumab one. Not sure if that is the right way to go at the point?

Any advice would be greatly appreciated. Thanks so much!

Targeting Invasion - Fluvoxamine

http://astrocytomaoptions.com/targeting-invasion/

FLUVOXAMINE

In March of 2016 a Japanese group published research showing that the cheap, off-patent anti-depressant fluvoxamine inhibits GBM migration and invasion both in vitro, and in vivo in an orthotopic mouse model using human glioma-initiating cells [23].
In this study, 18 antidepressants and antipsychotics were screened in vitro for their ability to inhibit actin polymerization in GBM cell lines, a process essential for cell migration and invasion. Of these, the most potent inhibitor was found to be fluvoxamine. Fluvoxamine treatment of three GBM cell lines inhibited cell migration in a dose-dependent manner. In contrast, fluvoxamine had no effect on cell proliferation in the same three cell lines.
In follow-up studies, the brains of nude mice were injected with human glioma-initiating cells. One week later, fluvoxamine treatment of the mice was initiated by daily intraperitoneal injection. The dosage of fluvoxamine used in the mice had no effect on mouse body weight. At four weeks, tumors were isolated and histologically examined. Untreated tumors showed a disorderly invasion into healthy tissue, while tumors from fluvoxamine-treated mice were significantly smaller with invading cells forming island-like shapes that clumped together at the tumor border. CD133 positive cells (a marker of glioma stem-like cells) were found localized to the small tumor area in the fluvoxamine-treated mice, while CD133+ cells had spread out from the main tumor in untreated control mice. Vascular endothelial cells and proliferative Ki-67-positive cells were also greatly reduced in the fluvoxamine-treated tumors. Survival of mice in the fluvoxamine-treated group was extended.


Inline image 1

ellagic acid

http://www.ncbi.nlm.nih.gov/m/pubmed/19501395/

http://www.ncbi.nlm.nih.gov/m/pubmed/26959625/


Saturday, 21 May 2016

2016 WHO Classification of Tumours

Hello everyone

I just found a link to this on the brainstrust.org.uk site.  You may well know about it already?  I downloaded the full paper.  Most of it was way over my head, however it seems an important step from the WHO in recognising the importance of genetic factors in brain tumour classification and treatment.

Abstract

The 2016 World Health Organization Classification of Tumors of the Central Nervous System is both a conceptual and practical advance over its 2007 predecessor. For the first time, the WHO classification of CNS tumors uses molecular parameters in addition to histology to define many tumor entities, thus formulating a concept for how CNS tumor diagnoses should be structured in the molecular era. As such, the 2016 CNS WHO presents major restructuring of the diffuse gliomas, medulloblastomas and other embryonal tumors, and incorporates new entities that are defined by both histology and molecular features, including glioblastoma, IDH-wildtype and glioblastoma, IDH-mutant; diffuse midline glioma, H3 K27M–mutant; RELA fusion–positive ependymoma; medulloblastoma, WNT-activated and medulloblastoma, SHH-activated; and embryonal tumour with multilayered rosettes, C19MC-altered. The 2016 edition has added newly recognized neoplasms, and has deleted some entities, variants and patterns that no longer have diagnostic and/or biological relevance. Other notable changes include the addition of brain invasion as a criterion for atypical meningioma and the introduction of a soft tissue-type grading system for the now combined entity of solitary fibrous tumor / hemangiopericytoma—a departure from the manner by which other CNS tumors are graded. Overall, it is hoped that the 2016 CNS WHO will facilitate clinical, experimental and epidemiological studies that will lead to improvements in the lives of patients with brain tumors.

Growth.

Hi -


Met with the local oncologist yesterday to go over our MRI results.  He assured me they were very bad.  I'll share with you:


There is interval increased surrounding vasogenic edema.  Abnormal increased FLAIR signal is seen extending to the splenium of the corpus callosum.  There is also further craniocaudad extension of the vasogenic edema.




Current measurement of the ring-enhancing lesion:  5.7 x 4.1 x 3.8 cm in AP, transverse and craniocaudal dimensions (previously 4.3 x 4.4 x 3.1 cm) current measurement of the cerebral edema and abnormal T2-weighted signal 7.3 x 5 by approximately 6 cm (previously 4.5 x 5.0 x 3.5 cm).


You guys...  I'm feeling many things.  We've been on an Avastin alone approach (++ cocktail) since October.  When I was at UCLA last month I spoke with Dr. Liao who asked why we stopped the Temodar if the MRI did not show progression?  (It did not - the decision to halt Temodar was made in response to Dad's weakened condition, which in retrospect may have been due to the impact of radiation to the motion strip of his brain).  We may have stopped Temodar prematurely.  So now, 6-7 months later, I asked the local oncologist - can we revisit Temodar?  He said that sounded like a rational approach and sent us off with a script and with our Avastin for the 2 week interval.


The ONLY change made in the past few months was the addition of Valcyte late March.  Could Valcyte cause false growth?  Could Valcyte cause real growth?  Is the timing more likely coincidental given Dad's at the 6-7 month window of Avastin use?


We're not eligible for the Polio trial as Dad can't walk.  What else should I try...?  Has anyone tried Temodar post Avastin failure?


Thank you all.  You are my friends in this and I appreciate you.
xoxo Annie

Metronomic TMZ with adjunct supplements/chemo for recurrence

Hello,

Has anyone had good results after a recurrence of a high grade glioma using Temodar on a daily low dose in combination with another agent? I'm looking for an approach that might increase it's effect for my wife who had a recurrence (AA3). Her NS has made the suggestion (just the TMZ alone) and I would assume her oncologist will be advising the same. Given that it appears her tumor didn't respond to TMZ in the first place I'm questioning that it will be the same outcome as before. Perhaps CCNU might be the better choice, or combining them if she tolerates it.
Ray

Dose anyone where to buy Celebrex from ?

Hi all
Dose anyone know where to buy Celebrex from online that is reliable source ?
Thank you

Friday, 20 May 2016

Prazosin

Summary on Astrocytomaoptions.com

PRAZOSIN
Prazosin is an old drug, first approved by the FDA in 1976 (brand name Minipress) to treat hypertension, through antagonism of α1 and α2B adrenergic receptors (adrenoceptors). It is off-patent and cheap, costing as little as $10 (US) for 30 1mg capsules.
In the spring of 2016, a French group published research showing that prazosin could inhibit the growth of recently-resected human GBM xenografts injected into the brains of immunodeficient NOD scid gamma (NSG) mice [63].
In vitro, five different α-adrenergic receptor antagonists were tested for effects on glioma-initiating cell viability. Of these, only prazosin showed significant inhibitory effects on cell viability, also inhibiting sphere-forming ability of the cells. Prazosin also negatively impacted survival of differentiated GBM cells, while having little effect on healthy neural stem cells.
Freshly-resected human GBM cells were sorted for the markers CD133 and EGFR, and injected into the brains of immunodeficient NSG mice. Upon the detection of tumor mass, the mice were then treated by intraperitoneal injection with prazosin twice weekly for 45 days. Prazosin treatment significantly reduced tumor size and increased mouse survival in these models, compared to untreated tumor-bearing mice. Prazosin treated mice also showed a reduction in the proportion of CD133+ cells in the tumors (CD133 is a marker of GBM stem-like cells, with high tumor initiating potential). A 10-fold lower dose of prazosin, comparable to a typical anti-hypertension dose, also significantly reduced tumor size and increased mouse survival. Additionally, prazosin treatment similarly reduced tumor volume and increased mouse survival in a syngeneic GL-261 mouse glioma model using immunocompetent mice.
The specific mechanism responsible for these observations was next investigated. The researchers found that prazosin causes glioma cell death by apoptosis, both in vitro and in vivo, but did not induce apoptosis in non-tumor cells in the mice. The lack of effect of other adrenergic receptor blockers (besides prazosin) on GBM cells suggested its effects were independent of α-adrenergic receptor blocking activity. Instead, they found that the effects of prazosin on GBM cell death were dependent on PKC𝛿 (protein kinase C, delta isoform), as silencing of PKC𝛿 protected the GBM cells from the effects of prazosin. Prazosin also significantly inhibited the activation of AKT (also known as protein kinase B), which is a central hub in GBM pathology, at the center of the PI3K/AKT/mTOR proliferative signaling pathway. However, the silencing of PKC𝛿 in the cells reversed these effects on AKT. In mice, PKC𝛿-silenced tumors were unresponsive to prazosin.
In summary, these observations indicate that prazosin, a cheap off-patent hypertension drug, may have clinical use in GBM, especially those with alterations in the PI3K/Akt pathway.

Thursday, 19 May 2016

volasertib

Hi all dose anyone have any information about volasertib?
I have been researching it recently and it seams promising 

Is Vasculogenesis the reason for Tumor growth after Radiation?

Stephen and all -

What's your experience or opinion on anti-vasculogenesis following chemo and radiation therapy?

Research below is claiming that Radiation kills the angiogenesis mechanism and the tumor grows back not due to angiogenesis but due to vasculogenesis after standard therapy. So HIF-1 and SDF need to be inhibited. Plerixafor is one such treatment. More articles available on Google search.

http://www.ncbi.nlm.nih.gov/pubmed/20179352

Tuesday, 17 May 2016

RVSRIPO AND CHEMO

Well, I guess PVSRIPO is relevant to cocktail approach.  What I thought was the most promising in the CBS report is that when they added chemo later to one the treatment had failed on, it actually had a complete response. The immunotherapy made tumor more vulnerable to chemo. I'm surprised they were all surprised by this. This just confirms the future must be a cocktail approach and not a silver bullet.

Grace and Peace,

Danny  

Dose anyone know of any drugs targeting vegf?

Hi all
My dad had his scan results last Friday.
Over a month ago we was told that the tumor is growing and it spread to the other side of the brain so they took him of Temodar.
However on Friday we got the result and it was quite different. It hasn't grown atall and the blood supply is slowing to the tumor.
I have my dad on a wide range of repurposed drugs and supplements so it would be hard to say what's working.
Dose anyone know of any that would do this ?

Monday, 16 May 2016

Radiation 60% of Brain

My husband was diagnosed May 1, 2015, with GBM, right frontal-lobe and had 60% of his head radiated under the usual protocol of 30 days + chemo. One year out, and though his tumor(s) are stable, his deficits seem to be more pronounced. I was wondering if there is anyone here with similar, right frontal lobe, lots of brain mass radiated, who could tell me what to except one year out with this level of radiation. I know radiation impacts good brain cells, but is it permanent, and is there anything that could be done to rebuild. So far cognitive therapy hasn't worked much.