My niece keep fighting with GBM. Last 3er January  did new MRI and we are waiting for the result but with the hope that the MRI were well (for some anticipated information)  ..

She has GBM no methilated and we think that temodar is not so effective in this cases. She had a second operation after first operation and treated with temodar. We read about Avastin that is very hopeful.

She started taking a non toxic cocktail of drug (curcumine, fish oil, Melatonina, PSK, Spirulina, Green te, vitamin C, D3,K2, resveratrol, etc) and Savitex with THC y CBD. She doesn't have any medical supervision about the cocktail. After a radioteraphy and little period of rest, she again is taking chemotherapy (temodar) and we think to add others drug (a little bit more toxic) that we read are good to fight against tumors, but we are scared about its interactions. We think to add Chloroquine and Celebrex (celecoxib). 

Do you think it’s a good option to join THC and CBD with Chloroquine and Celebrex?. I read about the moderate interactions between Chloroquine and Celebrex, but I didn’t read anything clear for me about THC/CBD and Chloroquine or Celebrex.

Please could you help us about your experiences? We would appreciate any  information. Thank you very much.

Sincerely, Jose Mª

JMRT

Intravenous Curcumin?

Any one has experience with this?

Help in moving forward with 20 year old son diagnosed with Grade 2 Astroscytoma

Thank you Stephen for the invite, and thank you to this community for all information gathered here, and Astrocytoma Options, regarding my sons recent diagnosis of a Grade 2 Astrocytoma.

This is all very overwhelming, in processing a lot of information, in a short period of time, while making decisions regarding treatments and such.

My son Brett, had a bad seizure on Christmas eve morning while playing football with his friends. Fast forward, he had surgery the following Friday, December 30th. His tumor was located on his right frontal lobe(cerebral), apparently just over 4 centimeters.

Post-op MRI report stated a full resection, however the Neurologist who preformed surgery said that he feels as though a piece, possible the rim of the tumor remained. When discussed with the tumor board, the over all consensus of the group, agree with him. Being that is it a slower grower tumor, that are allowing his body to heal, and have scheduled his next MRI next week, to further review.

We met with his Neuro Oncologist yesterday to go over his pathology report. Which is where I am seeking advice. Trying to stay positive through all of this, I felt like a UFC fighter kicked my in my stomach when I learned that his tumor is IDH1 negative, 1p/19q not co-deleted(none detected), his TP53 mutation: Present, 60 percent of nuclei stain positively by immunohistochemistry.

We have an appointment at UPenn Thursday afternoon for a second opinion. Do you have any recommended questions, regarding anything? I am starting to feel lost. From what I have read(very carefully), prognosis is quite favorable with IDH1 mutated, co-deletion in tact.

She offered us a treatment of radiation w/ Tremodar, or radiation 5x's a week followed by a restrictive diet chemotherapy, Matulane, Lomustine, Oncovin. She does not lean one way or the other. The choice is ours, however, she stated that statistics back up the second suggestion. I read that combination chemo and radio are best.

Please forgive me for throwing this all out there, I'm writing in my car while picking up my 12 and 14 year old from school. Absolutely and advice would be much appreciated!!

Sincerely,

Marlena

Hydrocortisone VS Prednisone

My husband, diagnosed May 2015 with left frontal lobe GBM, had been using dexamethasone but the side-effect were becoming too severe even though he was down to 2mg per day. His arms easily bruised, bleeding from thinning skin. Does anyone here have any experience with Prednisone or hydrocortisone? Since Dec. 1, my husband started taking prednisone but he seems to get quite irritable even on 7.5mg. A friend, who happens to be a neuro-onc visiting from Scotland, recommended switching over to hydrocortisone.  Our UCLA neuro-onc recommends that we see an endocrinologist, but that's harder to find than you would think. Any conflicts with other off-labels meds or supplements? Thoughts?

Re-evaluating sildenafil (Viagra) in GBM cocktails

A recent study published in Oncotarget calls into question whether PDE5 inhibitors like sildenafil are a good idea for GBM after all.  The study is called Type 5 phosphodiesterase regulates glioblastoma multiforme aggressiveness and clinical outcome. (click on title to redirect to the article).

The two main reason it has been included in GBM cocktails are for 1) proposed blood-brain barrier opening effects and 2) inhibition of immune suppressor cells as seen in mouse models and for other PDE5 inhibitors (tadalafil) in human studies.

This new study however, identifies high PDE5 expression in GBM as a positive prognostic factor. First, in a series of 69 GBM patients, high protein expression of PDE5 was independently associated with better survival in a multivariate analysis which included EGFRvIII expression, age, KI-67, KPS, MGMT status, and PDE5 protein expression.

This finding was validated in two additional GBM cohorts from "publicly available gene expression datasets".  In these GBM datasets, high expression of PDE5 mRNA was likewise associated with improved survival.   Recurrent tumors tended to have lower PDE5 expression than newly diagnosed tumors.

Cell line studies showed that PDE5 knockdown increased the invasiveness of cell lines and enhanced the survival of GBM cells following irradiation.

Although it's not clear how much sildenafil actually gets into a brain tumor to exert direct effects on PDE5 in gliomas (myself and others had been promoting sildenafil for potential indirect benefits on immune cell populations and BBB permeability), this study will certainly make us think twice about PDE5 inhibitors as a therapeutic strategy for GBM.

The methylenetetrahydrofolate reductase (MTHFR) variant c.677C>T influences overall survival of patients with glioblastoma multiforme

This was a 2008 article published in Neuro Onc 10.1215/15228517-2008-020.  PMCID: PMC2666227.

From what I gather, the C/T (C677T) A/C (A1298C) genotype (Greatly Reduced Activity, GRA) of the MTHFR gene is a risk factor for survival in GBM. C/C is considered normal. 

I did test our survivor for the MTHFR gene and he has the C/T polymorphism noted above.  It should be noted that this polymorphism is common in the general population.  

Individuals with the GRA MTHFR type mutation are expected to have greatly decreased folic acid metabolism and low folate levels. 

The authors of the study concluded that "folate supplementation or dietary strategies influencing methionine and further metabolites of methionine metabolism might be interesting candidate supportive therapies for GBM patients".  There is a product on the market known at L-methylfolate or Metafolin and also marketed as Deplin 7.5 mg or 15 mg.   Supplementing with regular folic acid would seem to be much less effective if one does not have enough MTHFR to convert folate to its active form that can pass the blood brain barrier.  My question is if anyone has any further information or experience with L-methylfolate supplementation in their BTcocktail. 

Agenus vaccine (HSPPC-96) plus pembrolizumab (Keytruda) for new GBM

We've just heard that UCLA will be starting a trial combining DCVax with nivolumab.

NCT03014804   (disregard the references to a "lung tumor" vaccine.  This is a GBM trial and those references were a mistake which should be fixed soon.

Another trial will soon be opening for newly diagnosed GBM testing the Agenus Prophage vaccine (HSPPC-96) in combination with pembrolizumab.  This is a randomized phase 2 trial and unfortunately one arm will be treated with standard of care + pembrolizumab + placebo, while the other arm gets standard + pembrolizumab + vaccine.

Another trial of HSPPC-96 for newly diagnosed GBM reported some results at ASCO 2015.  Patients with high PD-L1 expression had median survival of 18 months, while patients with low PD-L1 expression had an amazing median survival of 44.7 months.  There is thus very good rationale to combine this vaccine with a PD-1 inhibitor such as pembrolizumab.

NCT03018288

New disulfiram trial in Sweden

DIRECT (DIsulfiram REsponse as add-on to ChemoTherapy in Recurrent) Glioblastoma: A Randomized Controlled Trial

This is a randomized phase 2/3 trial with an expected recruitment of 142 patients recruiting in Norway and soon to be recruiting at multiple centers in Sweden.

One arm gets standard alkylating chemotherapy at recurrence, and the other arm gets standard chemotherapy plus disulfiram and copper.

NCT02678975

Cannabinoids question

hello everyone. Is there any value in taking a CBD only oil? This is now legal in Ireland, presumably because there is no THC present.  If so what would be the recommended dose?
thanks
Anne Marie

Chloroquine dose for EGFR Amplified/EGFRvIII positive GBM

Hello all, I just also reviewed this 1/17/2017 article regarding GBM and Chloroquine (https://www.sciencedaily.com/releases/2017/01/170117084050.htm) and there seems to be some efficacy with Chloroquine use in BRAF mutation positive GBM.  In our case the BRAF mutation was not detected and I'm wondering if CQ would still have a place in our cocktail in the absence of this mutation.  

However, as was pointed out on this blog, retrospective studies have indicated Chloroquine as being particularly effective in EGFRvIII positive GBM, which is the case with our GBM. I also noted clinical trials going on using CQ in GBM, but could not find any prelim data.  We just finished cycle 2 of TMZ and want to add Chloroquine to our cocktail right away.

Does anyone have an idea regarding the dose (mg) and how it should be taken? (one a day? twice a day? only during the 5/28?  Regards,

Stephen W edited this post to include the following image:

Recent paper on GBM and Chloroquine

We're not been able to use chloroquine ourselves for a while, especially since we've been off TMZ for so long. Still, interesting revisiting of it:

https://www.sciencedaily.com/releases/2017/01/170117084050.htm

From Musella's website: Immunotherapies for GBM: Tumor Vaccines by Linda Liau, M.D., Ph.D., M.B.A.

Immunotherapies for GBM: Tumor Vaccines by Linda Liau, M.D., Ph.D., M.B.A.         This is a video about the DCVax trial, given by one of my all time favorite brain tumor doctors, Dr. Liau.  This looks very promising. We are hoping to hear the results of the big phase 3 trial soon.  In the earlier trials and in the early progressors which were excluded from this trial but were followed as they took the vaccine,  about 25% of the patients went on to be long term survivors, with many alive and progression free 5-10 years later.  That is unheard of with the standard treatments. Some other immunotherapies have also reported similiar results (although not as long follow up).    We are hoping this large phase 3 trial shows something close to that so it can be approved quickly and all patients can benefit from it.  Best of all it had no serious side effects. Dr. Liau is on the Musella Foundation Medical Advisory Board.  The Musella Foundation has supported Dr Liau's immunotherapy research with $375,000 in grants and we have never received any financial  support from the company developing this treatment, Northwest Biotherapeutics.

What else would you do?

On 08/29/16 my 41-year-old brother in perfect healthy suddenly presented with a massive headache which ended up as a 5-cm R frontal GBM (+MGMT; wtIDH, EGFRvIII amplified, PD-1/PD-L1 negative, HLA A*02:01 negative), 90-95% resection on 8/31/16 at Cedars-Sinai, remainder 5-10% abuts the ventricle, Caris & Foundation testing done, did not qualify for or declined upfront clinical trials, started w/ stupp protocol w/ in 4-weeks after surgery, but upped radiation dose in week 5 of 6, 1st MRI showed stable findings but new nearby tiny satellite lesion seen, Keppra for first 2-months, 2nd cycle of TMZ completed yesterday (1/16/17), 7-week delay between TMZ cycle 1 & 2 due to a 2.5-week experimental T-cell / stem cell immunotherapy out of states, added Nivo (Opdivo) during the end of RT & going on 6th infusion now (insurance not covering), starting Pomalyst this week (pending insurance approval), Optune ordered end of Nov 2016 but still delayed due to insurance denial, started high dose Vitamin C infusion 10-days ago and working up to 100 g, CBD/THC oil 1:1, life-style modification, difficult to follow restricted ketogenic diet, has had no seizures and no requirement for steroids beyond the post-op taper, tolerating treatment very well, has no symptoms, labs are normal, and only neuro deficit is subtle mild cognitive impairment. MRI last week had not changed but most likely viable tumor tissue seen, hoping it is pseudo-progression, awaiting result of second liquid biopsy.  Inquired and/or consulted with Duke, MD Anderson, UCLA, CSMC, NIH, Dana Farber, Cleveland Clinic, Hoag, UCI, USC and some international sources, in addition to attending SNO 2016, but walked away with very little.  So we started our own prescription drug cocktail early on and have kept adding.  Did pharmacogenetic (PGT) testing and do frequent labs to monitor for drug-drug interaction.  Current NO has no objection to the cocktail and in-fact recommended a few on the list.  Current cocktail includes:

- Valcyte 450 twice daily
- Celebrex 200 mg twice daily
- Metformin 500 mg twice daily
- Imipramine 100 mg at bedtime
- Mebendazole 100 mg twice daily
- Livalo 4 mg daily
- Ondansetron 8 mg as needed for nausea
The non-Rx part of the cocktail includes (still trying to fine tune the dose)
- CBD/THC 1:1 oil
- Coconut oil
- Ashwagandha
- Turmeric (curcumin)
- Boswellia serrata (Indian frankincense)
- L-Proline
- L-Lysine
- Selenium
- Zinc
- Resveratrol
- Tart cherry
- Colloidal silver
- Green tea extract and will be adding Melatonin 20 mg

Will be doing an early follow-up MRI 3-weeks from the last one on a 3-Tesla w/ DTI, spectroscopy and perfusion weighted, for whatever it is worth.  Meanwhile, trying to be proactive and need to start considering options in case of “recurrence” as will be excluded from most trials since we’re already doing immunotherapy.  Thinking of adding intravenous Resveratrol and Curcumin infusion which I just found got my hands on.  Was thinking of adding Yervoy but hesitant given potential for serious side effect in combo w/ Nivo.  Hope our path ends up helping you and truly appreciate all of your guidance and feedback. 

Off label drugs for astrocytoma grade 3

We are looking for repurposed drugs for a family member and since most of the research has been done for GBM that is grade 4 tumor I wonder if there is anything to take into account while treating a grade 3 tumor. I once read somewhere, but can't remember where and how reliable this source was, to be careful with cytotoxic drugs for lower stage cancer as they may cause the tumor to develop to a higher grade. Could you let me know what are your opinions on this? What type of drugs would you chose or have you chosen for lower grade tumors? Thank you.

Start DCA while on dex?

So, I have DCA in the freezer, ready to use.

Bought from PureDCA.com.

They recomended  600mg dca + 375mg of thiamin TWICE daily for 80kg man. My husband now is 84.6 kg.

Not sure if he can start DCA (sodium version) if he is on 7mg of dexamethasone and thus should have low sodium diet.

He currently does not have any treatment. 

Last DC vaccine was on 31st November 2016. 

SPMF treatment ended on 12th October. Were told that therapy 'lasts' for another three months (forgive me my imperfect English).

Current drugs:

Dexamethasone	4-3-0 (mg)
Omeprazole 20	0-0-0
Levetiracetam 750 mg	1-0-1
Endoxan 50 mg	1-0-0 (cyclophosphamide)
MGN-3 1000 mg	1-1-1 (shitake powder)
Rytmonorm SR 325 mg	1-0-1 (propafenonum for heart)

Supplements:

Vitamin D 5000 UI	0-1-0
Vitamin C 1000 mg	0-1-0
Caltrate Plus	0-0-2 (calcium)
Magne B6	1-0-1 (magnesium)
MarineOmega	1-0-1 (omega 3)
LifePak	1/2-0-1/2 (multivitamine)
Cordyceps	2-0-2
Reishi

We also plan to start applying 25% DMSO gel from Jacobs labs topically on his head.

(We hope to decrease his significant edema in the brain.)

Any advice on DCA start/not to start/when will be much appreciated.

Husband has all kinds of side effects from dex. Started higher doses on September. Moon face, insomnia, big abdomen, myopathy, osteopenia...

God bless,

Hana

Cronaxal

Has anyone tried Cronaxal or might have any info regarding whether it is worth trying? Thanks
http://www.cronaxal.com

Unmethylated treatment advice

Hi,
My beautiful husband had removal of GBM left parietal tumour last October.
Histopatholgy results:

The sections show multiple fragments of hyper cellular brain parenchyma, diffusely infiltrated by tumour composed of hyper chromatic and atypical glial cells, set in a fibrillary background.   The glial cells have a broad morphological spectrum which includes scattered epitheloid forms with abundant pink cytoplasm and smaller glial cells with a high nuclear to cytoplasmic ratio. Frequent mitotic figures are present including atypical forms. Multiple foei of palisading tumour necrosis and microvascular proliferation are seen.

ATRX: retained 

IDH1 (r13211) immunonegative

EGFR; strongly and diffusely positive

P53: positive in approximately 30% of the tumour cells

Ki67 prolification index: approximately 20%

Unmethylated 

Glioblastoma IDH-wild type grade 4 

After surgery we have commenced veliparib  + radiology.

We are now on a break and due to commence veliparib + temozolomide in about a week (6 month treatment:one week on tablets ; three weeks off)

Current supplements

Curcumin 

Silymarin 

PSK

Selenium 

Vitamin D

Multivitamin 

+ Ketogenic diet 

Because we live regionally (in Australia), we are now assigned a local oncologist (not neuro-oncologist).  This VERTU trial is the only offered treatment.  The oncologist is reluctant to discuss other options/supplements.

The registered nurse overseeing the trial said that if I approached the doctor and asked to add a medication they would consider it, so we have an appointment next week that I have an opportunity to put a case forward for other treatment, hence I am asking for advice.

Question: should we be pushing for Keppra?  

Question: should we be looking for other treatment... I am not hearing much of anyone on veliparib.

Question: Please advise if it would be beneficial to add artemisinin to the supplements, and if so how will that work with the veliparib  + temozolomide 

Question: Do you have any other recommendations for supplements?

Thank you in advance for any assistance.

And I also thank you all for writing on btcocktails  and sharing stories and knowledge... It makes me feel not so alone.

dendridic vaccine plus virus

Dear all,
we are planning on getting the vaccine with Van Gool for my 17-year old pretty soon. I know he is using  Newcastle virus with it, but I wonder if this would be the most effective/aggressive option. I have seen mixed reports on its efficacy, so I wonder if tetanus shot or Hilton would be a better option to add to the vaccine. From what I read, tetanus seems a lot more effective. As much as I trust Van Gool's expertise, I still can't fully put my faith into any one treatment if there is a possibility of something working better. I am sure Van Gool would insist on his approach, but I wonder if this is because he truly believes it is better tan others ( such as tetanus) or because this is the only protocol they use at the moment. Would anyone have an opinion on that? Thanks!

PLK1, IDH1, and Genistein

Came across this study on sensitizing IDH1 mutant tumors to TMZ.  Inhibiting PLK1 sensitized mutant IDH1 gliomas to TMZ in mice.  

PLK1 INHIBITION ENHANCES TEMOZOLOMIDE EFFICACY IN IDH1 MUTANT GLIOMAS

They used the small molecule BI2536 which is not currently available outside of clinical trials.   However, I did find a 2016 study on Genistein (which is available retail) and its possible inhibition of PLK1.

 Sensitivity of TP53-Mutated Cancer Cells to the Phytoestrogen Genistein Is Associated with Direct Inhibition of Plk1 Activity.

Some more info on Genistein here as well.

DMSO

Dear friends,

Anybody having experience with DMSO?
http://www.lifeextension.com/magazine/2007/7/cover_dmso/Page-01
Concerning brain swelling and also killing GBM?
I also saw succesful story of one Czech guy using CDS2 with DMSO as spray on his head?
Wondering wether such usage also can be effective.

Thak you,
Hana

Fasting during chemo cycles?

Hi all,

As there is some evidence in mice studies that fasting can be beneficial during chemo cycles, both sensitizing the tumor cells and protecting the regular cells I'm wondering if anyone here has tried it?

If yes, would you be willing to share your experiences?

How long time did you fast? Did you see any direct benefits? Any negative effects? How easy was it to tolerate fasting while taking chemo?

Grateful for any feedback.

Thanks

Long-term control and partial remission after initial pseudoprogression of glioblastoma by anti–PD-1 treatment with nivolumab

That is the name of a letter published online yesterday in Neuro-Oncology journal.  Click on link to the partial extract here.

I'll be uploading the full one-page letter to the Library.  Immunotherapy folder, Immune checkpoint inhibitors subfolder.

Cannabis oil

Has anyone purchased cannabis oil in the US? I looked up the shop in CA ( from the link provided here) but was a bit confused as to which kind to buy and the logistics of it. Would it even be possible to order and have it sent to us? We live in New Jersey, so I wonder if anyone had any luck buying it on the East Coast? Thanks!

Brain Research Institute

I found this link on ABTA and thought it was helpful. 

http://www.cancerresearch.org/cancer-immunotherapy/impacting-all-cancers/brain-cancer

Johns Hopkins response to cocktail therapy

Found this interesting.  A couple of neurosurgeons at Johns Hopkins were having an open Q and A about brain tumors this past week.  I asked a simple question about combo therapy and got the below response.  I guess this response should be expected though so not all that surprising. 

Dear all,
my 17-year old son will finish RT and temodar on December 28th and we are planning to go to Van Gool's clinic in mid January for the dendric vaccine. In the meantime, I would appreciate advice on supplements for him to take in the meantime. Currently the only one he can tolerate is melatonin, but my hope is that he can do much more once he is off temodar and radiation.  If you could include the dosage that would be great! He is about 140 lb. ( 63 kg.)
Thanks!!!!!

Optune OS for rGBM (at first recurrence)

I initially dismissed the idea of using the Optune device because the OS for rGBM in the EF-11 trial (as shown on the Optune website) was only 6.6 months vs. 6 months using chemotherapy.

However, since reading the PRiDe (Patient Registry Data) analysis (and Stephen's summary on astrocytomaoptions.com) of Optune users I'm becomming more optimistic. The PRiDe analysis is based on a separate database of 457 patients using Optune outside of clinical trials. The PRiDe analysys parses patient data by the number of recurrences and indicates an OS for patients at first recurrence  of 20 months (from the time of recurrence).

The source of this comes directly from the  PRiDe study:




The table indicates that Optune works substantially better for 1st recurrence patients than for patients with 2 or more recurrences.

It appears that the reason the OS of 6.6 months from the EF-11 study is so much shorter (6.6 vs. 20 months) is because only 9% of the patients in the EF-11 study were at first recurrence (i.e.  if 91% of the patients were at 2 or more recurrences and if these patients do much worse, then the OS of the entire group is heavily weighted towards patients with more than one recurrence - resulting in a much lower overall surviva).

The source of this is also shown within the PRiDe study:




It was pointed out to me that there are some flaws with the PRiDe data:

1. The research was based on patients outside of a clinical trial, so these patients may have used additional treatments.

2. The OS of 20 months comes from limited follow through data in that the 20 month OS is really based on the average of a range of 14 months to 26 months from the Kaplan-Meier data. I’m a little ignorant when it comes to Kaplan-Meier data, but somehow they use averages when there is insufficient follow-up data . It was explained to me that the 20 month OS is likely overstating the true OS, but it can still be concluded that the OS for first recurrence using the Optune (and possibly additional treatments) was at least 14 months.

So my understanding of the data is that patients using the Optune at first recurrence would have an expectecd OS (from recurrence) of closer to 14 months than the 6.6 months from the EF-11 study.

The PriDe paper is in the library that Stephen W put together.

Mike B

free live-streaming tonight Mara Gordon talk (Aunt Zelda's)

I was made aware of this through a blog contributor and figured others out there might be interested.

The event is called "Treating Cancer with Cannabis"

Register here if interested:
https://www.learngreenflower.com/events/treating-cancer-with-cannabis?oprid=18420

Therapy of Glioblastoma Multiforme Improved by the Antimutagenic Chloroquine

Methods: In a prospective controlled randomized trial, 18 patients with GBM underwent standard treatment with surgery, chemotherapy, and radiotherapy; nine received an additional 150-mg dose of chloroquine daily starting 1 day after surgery and continued through the observation period. Nine matched patients were included as controls. Neuroimaging studies and clinical response were periodically compared. The follow-up period ranged from 24 to 50 months. Survival time was defined as the main outcome measure.

Results: Survival was significantly longer in chloroquine-treated patients than in controls (33 ± 5 and 11 ± 2 months, respectively [p < 0.0002]). At the end of the observation period, four patients (46%) treated with chloroquine were alive, two had evidence of tumor remission after 2 years; in another two, tumor recurrence developed after 2 and 4 years of remission, respectively. No control patient survived more than 22 months after surgery.

Conclusions: Chronic administration of chloroquine greatly enhanced the response of GBM to antineoplastic treatment. Because the cytotoxicity of chloroquine on malignant cells is negligible, these favorable results appear mediated by its strong antimutagenic effect that precludes the appearance of resistant clones during radiotherapy and chemotherapy.

Source Here

What are your thoughts on immunotherapy to prevent GBM recurrence?

If the IDH1 tumor my girlfriend has is currently in complete remission, would it be fruitless to discuss with oncologist to enter a trial to take checkpoint inhibitors (like Yervoy and Opdivo) to prevent recurrence or to kill remaining cells that may not be seen via MRI?

Best company for insurance coverage for GBM?

All-

With 'ObamaCare' potentially under threat in the new administration we are considering changing insurance companies.  We think that the opportunity to get the best insurance for GBM coverage while the pre-existing condition coverage is intact may be smart.

We have private insurance so any company is on the table.

What are peoples experiences with this.  Is there an insurance company know to be the best for coverage?

Thanks as always

Winston
Brooklyn

Metformin's Debilitating Side Effects

My sister stopped taking metformin as she could not tolerate its side effects. She complained from severe nausea, dizziness, and fatigue. Anyone knows some tricks to overcome this problem?

She currently is on Temodar, Keppra, Vitamin D3, Curcumin, and Memantine. 

Thank you.

Going off Avastin, considering Optune

Sorry for the delay in replying about the Avastin causing more tumors.  For some reason, I can't get that posting to accept this reply to SteveMPFP so I'll start a new thread.   First, an update...

I've decided to go off of chemo until Jan 7. The Avastin was making me have chemo brain and neuropathy and I decided I simply don't want to live that way. Plus, this recent information out about Avastin promoting the formation of new, "satellite" tumors really hit home. While I was pleased that the Avastin took care of my swelling, I did, indeed, get a new tumor while on it. I told my new NO that we have never really given the supplements, especially the CO (cannabis oils), a fair chance because I've always been on a chemo at the same time. Avastin, for example, somewhat shuts down the blood brain barrier as these publications attest. He agreed I could give the supplements and CO a fair shot. It's a bit scary.

He wants me to consider Optune, the non-chemical therapy that sends electrical fields into the brain. For those who are new to this, these fields interrupt cell division by forcing the cells' microtubule subunits to align to the electrical grid and since it's only tumor cells that are dividing, the normal brain cells are unaffected, so the theory goes. I have already started the process of getting approved.

But a thought occurs...would Optune not also interfere with supplements? If they cross the blood brain barrier in any sort of a polar form, with any sort of an ionic bent or even an R-group that is even slightly positive or negative, wouldn't the molecules' conformation be affected by an electrical field just like the cells' microtubules are? Your thoughts?

Dear All,

I kindly ask for advices regarding Vitamins/Meds I could give my dad. I am new to all of this, doing my best by reading studies and this blog. My dad had surgery on August 3rd, diagnosed on August 18th. We live in São Paulo-Brazil and there are no clinical trials here and a bunch of other stuff available in the US/Europe. Which makes my situation a little harder but we plan to travel for vacation to the US in January so maybe then I can buy some meds/vits. His tumor is on the right frontal lobe. He's doing great, no side effects, no after effects whatsoever. Still working, going to the gym, golfing and playing tennis. He's 1,75m and 87kg.

So long story short:
He had pulmonary embolism after surgery which postponed the beginning of his cancer treatment
IMRT began on October 3rd with Temodar.
Temodar 42 days-cycle ended on November 13th - 145mg/daily
IMRT ended on November 17th - total of 6000cGy (there were a few holidays in-between)

Currently he is on a pause from his cancer treatment, MRI scheduled for this Friday (high hopes everything is fine!). His onco explained us last week that from now on he is going to be on a 5 days on / 23 days off of Temodar cycle for the next six months, starting on December 17th.
First cycle with 300mg, from second cycle on 400mg.

Although I know this is the standard protocol, I feel like there are more stuff I can do for him.

His current meds/vits are:
Phenytoin 100mg 3x/day - he started having seizures, that's how we found out
Carbamazepine 200mg 2x/day - same reason as above
Rivaroxaban 20mg 1x/day - for the pulmonary embolism
Dexamethasone 4mg half pill 1x/day - for edema
Vitamin C 1mg 1x/day  - got the idea from here, approved by the doc
Vitamin D 2000IU 1x/day - got the idea from here, approved by the doc
Green tea whenever he wants to drink it which is like, 2x/week - got the idea from here, approved by the doc

Once he starts the next chemo cycle, onco told him to take Trimethoprim/sulfamethoxazole 3x/week also for six months.

Biopsy report: 
AE1/AE3 - negative
EMA - negative
GFAP - positive
Ki67 - 50% positive
Neurofilament - negative
Protein S100 - positive
ARTX - nucelar reaction preserved
IDH1 - negative
Mutations p.Arg132Cys / p.Arg132Gly / p.Arg132His / p.Arg132Leu / p.Arg132Ser in the 132 gene codon IDH1 were not found
P53 - plurifocal reactivity (2+/4+)
EGFR1 - positive, score 220/300
MGMT - negative (unmethylated)


Is there anything I can give him to make him better? Am I missing something? What else could I do for him?
I accept every advice and suggestion, I'm kinda lost and blind here but always hoping for the best.

Today is his 61st Birthday.
Happy birthday dad! We love you so much!

Thank you for being the best support system anyone could've asked for!
My heart goes out to every and each of you!

Grade 2 oligodendroglioma: Cocktail suggestions while on PCV?

Dear all,

I'm looking for some suggestions on ingredients to add to my wife's cocktail while on PCV chemo for a grade 2+ oligodendroglioma (large and inoperable). The treatment might be followed by proton radiation if deemed necessary.

Currently she is taking the following daily:

Keppra 1500mg
Curcumin Longvida 1600mg
Ashwagandha 1000mg
Boswellia 1000mg
Pterostilbene 100mg
Vitamin D 5000 IU

Planning to add:

PSP
Berberine

She also plans to do water fasting for the first five days of each cycle while taking the Lomustine.

We would of course like to make this treatment as effective as possible so if someone has some recommendations I would much appreciate it.

Many thanks
Peter

Triple combination of dual checkpoint blockade + radiosurgery -> 100% mouse survival

http://clincancerres.aacrjournals.org/content/early/2016/12/04/1078-0432.CCR-15-1535.long

I don't recall seeing a mouse study this successful before.  This study utilized the orthotopic, syngeneic GL-261 mouse glioma model.  Triple combination of PD-1 antibody, TIM-3 antibody, and stereotactic radiosurgery led to 100% mouse survival at day 100, while all untreated control mice were dead by day 30.  Furthermore, the "cured" mice were completely resistant to new tumor formation when re-challenged with glioma cells.  I'll upload this study to the Library, in the Immunology and Immunotherapy folder, Checkpoint inhibitor subfolder.

Recommended Institutions, Neurosurgeons, Neuro-oncologists

It occurred to me that we need a listing of preferred institutions and doctors by general area.  I'll start with a few suggestions of my own, but please add your nominees in the comments and I'll edit the list accordingly.  Once we get a good list going, I'll make a page out of it for easy reference at the top of the blog.

NORTH AMERICA - WEST

Institutions: UCLA (Los Angeles), Cedars-Sinai (Los Angeles), UCSF (San Francisco), Swedish Medical Center (Seattle)

Neurosurgeons:  Linda Liau (UCLA), Mitchel Berger (UCSF), Keith Black (Cedars-Sinai), Charles Cobbs (Swedish), Brian Toyota (Vancouver, Canada),

Neuro-oncologists:  Timothy Cloughesy (UCLA), Albert Lai (UCLA), Santosh Kesari (John Wayne Cancer Institute at Providence Saint John's Health Center), Jethro Hu (Cedars-Sinai)




NORTH AMERICA - EAST

Institutions: Duke University (North Carolina), University of Florida (Gainesville), Dana-Farber Cancer Institute (Boston), Beth Israel Deaconess Medical Center (Boston), Massachusetts General Hospital (Boston), Cleveland Clinic, Memorial Sloan Kettering Cancer Center (New York), Johns Hopkins Hospital (Baltimore)

Neurosurgeons: Allan Friedman (Duke), John Boockvar (Lenox Hill Hospital, New York),

Neuro-oncologists: Roger Stupp (Northwestern), Eric Wong (Beth Israel Deaconess), Benjamin Purow (University of Virginia)



EUROPE

Institutions: German Cancer Research Center - DKFZ Heidelberg

Neuro-surgeons: Hugues Duffau (Neurosciences Institute of Montpellier, France; supratotal resection of low grade gliomas)

Avastin Aids in the Formation of Satellite Tumors?

This just in from Uncle Ronnie's moonshot program:  https://www.sciencedaily.com/releases/2016/11/161117134353.htm

I have had a new tumor form, still small thankfully, since going on Avastin.  The research is still preliminary but if it turns out to be correct, this would obviously be very disturbing.

I am curious...how many of you have had the same thing happen?