Wednesday, 30 March 2016

Corticosteroids (eg dexamethasone) and survival in GBM

Click here to view abstract

This study includes such names as Roger Stupp and Michael Weller on the author list, so cannot be taken lightly.

This paper consists of a retrospective human study and a mouse study.  The mouse study shows an antagonistic effect of dexamethasone on the efficacy of radiation (mouse survival was shorter when given dexamethasone with radiation compared to radiation alone).   An anti-VEGF antibody (similar to Avastin) was used in another group mice as an alternative means of edema control, and no interference with radiation was observed.

"Beyond the established adverse effect profile of protracted corticosteroid use, this analysis substantiates the request for prudent and restricted use of corticosteroids in glioblastoma."

Saturday, 26 March 2016


Anyone used the cough medication- Noscapine? I read on another group that it crosses the blood brain barrier, is synergetic with Temodar, BCNU and cisplatin. A long term GBM survivor used it in 2009 .,. If someone else used it on this group, can you pls share your experience and if you know if it has any contradictions with Avastin and/ or PD-1?


Friday, 25 March 2016

Hi All,

Anyone Here tried Cannabis oil? I am getting conflicting information regarding which is more effective in GBM. Is it a more THC component or a more CBD component? Also, what method have you found to be more effective and tolerable? I am being told sublingual but again, I am so new to this subject and am looking at your kind sharing of knowledge/ experiences to educate myself.

Would the Cannabis contradict with Avastin or with immunotherapy? I think I read somewhere that CBD can have anti oxidant characteristics which can protect the cancer Cells from dying?

I would appreciate Any tips or sharing of experiences.

Much thanks and God bless to all,

Metformin and Melatonin

I'm currently stable with residual disease on watch and wait. Trying to decide whether to take melatonin and Metformin. I don't want to minimize their efficacy when I need them during active treatment at a later date. Anyone have any insight into this? Grace and peace, Danny

Fake curcumin?

I purchase Longvida curcumin under the brand name of Nutrivene and it's appearance is orange and you can see the tiny grain like clumps. I purchased Longvida curcumin by Blackmores(Aus brand) and the appearance is very different with the curcumin being a pale yellow with the consistency of fine powder.... Something doesn't seem right. Could you let me know what your Longvida curcumin looks like. Thanks Linda

Thursday, 24 March 2016

Willing Drs?

Just curious if anyone is having success finding a dr. who is willing to prescribe and monitor the cocktail?

Disulfiram when combined with copper enhances the therapeutic effects of temozolomide for the treatment of Glioblastoma.

View study here

This study is exciting as it is the first study of disulfiram + copper in orthotopic GBM patient-derived xenograft mouse models.  Disulfiram and copper were given orally, not by injection, at clinically relevant doses.  The disulfiram + copper had little effect on its own in the mice, but sensitized the tumors to TMZ.  The testing was done on both newly diagnosed and recurrent samples.

Wednesday, 23 March 2016

Chance to try Optune - Can we talk?

Hi all,

We've been missing in action as things have been happening quickly. I think I already told about the progression(s) before Chance could even take the Toca 5FC pills. And it continued after taking the Toca 5FC.

They added Avastin, then at last MRI in February there was further progression, so they dropped the Toca 5FC and added CCNU. He has only had one round so far.

He experienced a loss of right field of vision, but to him it wasn't a right side problem, he was seeing blurry out of both eyes (which of course made reading, emails and text problematic).

Our NO, suggested Optune. Chance is taking his daughter to Hawaii in April and he wanted to wait until after the trip. Seemed perfectly logical to all, but his right vision has diminished dramatically in the last couple of weeks. Dr. Taylor said not to postpone the Optune, so we're moving forward.

I wondered if we could have a discussion of tips, dos and don'ts for Optune use. I read somewhere that a cooling hat was really helpful in hot, humid weather, but when I tried to find one, they were all one size and reviews revealed complaints that the hat was too small (and that of course wasn't considering those arrays). Others required water to create the cooling effect, but I didn't know if that would cause irritation.

I know we'll get lots of info when they actually bring the unit, but I thought hearing what works/what doesn't from users would be very helpful - especially in relation to traveling or athletic endeavors.

Thanks and appreciation - Jude

Tuesday, 22 March 2016

Fluvoxamine (anti-depressant)

Fluvoxamine, an anti-depressant, inhibits human glioblastoma invasion by disrupting actin polymerization

(clicking on the study title will send you to the article)

This was an intracranial (orthotopic) glioma mouse model, using human glioma initiating cells injected into nude mice.  The mice were treated with fluvoxamine, an anti-depressant, by intraperitoneal injection, which improved mouse survival somewhat.  The study is mainly interesting as I haven't seen this drug used in vivo in cancer models before.

Seattle Science Foundation Event - Youtube Link

Hi -

A few of us went to this on Friday (very nice meeting you Korey, Mike, and Jaki!)

Here is the link to the broadcast if you'd like to hear what was discussed:

The beginning is cut off a little.  The first speaker is Cecelia Soderberg ( who was asked if her studies of Valcyte were only effective on newly diagnosed GBM.  She said 30 of their subjects were recurrent GBM and that all showed improvements.

I also attended the earlier portion geared towards medical professionals.  I am waiting on that link and will post once I receive it.


Sunday, 20 March 2016

My wife has been on a ketogenic diet for some time now and I've been weighing the pros and cons of this.

Came across this excellent video, which is <24 minutes, from the "father" of the ketogenic diet as it relates to GBM. I thought it worthwhile to share:

This is expanded on greatly via this podcast from his acolyte, Dominic D'agostino:

Download it here to listen while commuting as it's like three hours. Both are worth the time to listen to, if only for background.

I'd like to hear if you are on a ketogenic diet and if it's helped you at all.

Friday, 18 March 2016

Seizure and Brain Bleed

My 61-year-old, otherwise healthy, husband had a major seizure at 4:am Tuesday, think Grand Mal. This was the first time anything like this has happened, very frightening. Greg was rushed to our local hospital and released withing 4 hours. He had a CAT scan and it looks like he has a small brain bleed. Greg's neuro-onc didn't seem overly concerned. She has him back on Keppra 750mg twice a day. His short-term memory is even shorter if that's possible. His walk is even more hesitant.  We're waiting for the results of the second CAT scan, taken yesterday morning. We're back at UCLA next Wednesday for his routine MRI, blood and visit with neuro-onc. Has anyone had a similar experience? What does it mean to have a brain bleed, even a minor one? Do you recover from that or is the "new normal" reset?
Newest response from Greg's neuro-onc: "I don't think so.  These symptoms are quite typical of a bleed but as long as there is no worsening of the bleed, which sounds like there's not, he'll get better in about 3-6 months.  But he may feel better if we give a short burst of steroids for 4-5 days, 4 mg twice a day, before going back down to 4 mg."
Additional question: About a month ago, we stopped (cold turkey) almost all complementary meds, including chemo to give Greg a break. We also stopped cbd-thc sub-lingual spray. He continued to take curcumin+, metformin and just a couple of other meds but not the 25+ vitamins/supplements that have been part of his cocktail since September. Could that have something to do with the seizure/brain bleed? 

Saturday, 12 March 2016

More Good News on Curcumin

Another positive study on Curcumin. Still wondering what a good daily theraputic dose of Longvida would be.

Friday, 11 March 2016

Does this mean we shouldn't take green tea and curcumin together?

2004 Jun 4;279(23):24007-14. Epub 2004 Mar 24.

Green tea polyphenol and curcumin inversely regulate human involucrin promoter activity via opposing effects on CCAAT/enhancer-binding protein function.


Antioxidants are important candidate agents for the prevention of disease. However, the possibility that different antioxidants may produce opposing effects in tissues has not been adequately explored. We have reported previously that (-)-epigallocatechin-3-gallate (EGCG), a green tea polyphenol antioxidant, stimulates expression of the keratinocyte differentiation marker, involucrin (hINV), via a Ras, MEKK1, MEK3, p38delta signaling cascade (Balasubramanian, S., Efimova, T., and Eckert, R. L. (2002) J. Biol. Chem. 277, 1828-1836). We now show that EGCG activation of this pathway results in increased CCAAT/enhancer-binding protein (C/EBPalpha and C/EBPbeta) factor level and increased complex formation at the hINV promoter C/EBP DNA binding site. This binding is associated with increased promoter activity. Mutation of the hINV promoter C/EBP binding site eliminates the regulation as does expression of GADD153, a dominant-negative C/EBP factor. In contrast, a second antioxidant, curcumin, inhibits the EGCG-dependent promoter activation. This is associated with inhibition of the EGCG-dependent increase in C/EBP factor level and C/EBP factor binding to the hINV promoter. Curcumin also inhibits the EGCG-dependent increase in endogenous hINV levels. The curcumin-dependent suppression of C/EBP factor level is inhibited by treatment with the proteasome inhibitor MG132, suggesting that the proteasome function is required for curcumin action. We conclude that curcumin and EGCG produce opposing effects on involucrin gene expression via regulation of C/EBP factor function. The observation that two antioxidants can produce opposite effects is an important consideration in the context of therapeutic antioxidant use.

Wednesday, 9 March 2016

Request for information on CUSP9v3

Hello to everybody!

First of all I want to say thank you to Stephen for accepting me on this blog, It is a very helpful source of information and I deeply hope to find a right way to cover for my sister.

Here you can find a brief clinical story of Lorena:

Within few days she will undergo a magnetic resonance, to confirm or to retract the result of the previous MRI done on January. The medical result has shown the presence of an extended edema and other distinguish hallmark of glioblastoma. But Dr. Milanesi, her radiotherapist, supports the possibility that the edema may ensue from the toxicity of the CyberKnife procedure undergone in November.

Today we succeed in getting in contact with Dr. Marc Eric Halatsch who suggests to treat Lorena the use of CUSP9v3 therapy which can be administered by any licensed physician.

Do someone have undergone on this kind of procedure?
Thank you in advance

Tuesday, 8 March 2016

Edema generated on flight?

Hi All, we arrived on Sunday to Duderstadt to get some treatment for my wife. Today I felt her a litle bit like disconnected also with some symthomps increased around her hemiparesia. Talked with out second line onchologyst, the one that supports cocktail approach, and told us this long flights (30 hs) may cause edema, added to the fatigue, jetlag a also taking in considerarion that her last surgery was on February 22nd, yes almost 2 weeks, this maybe the main reason of her current status. He reccomends to start 24mg daily to reduce edema.

You can call us crazy, but the situation really diserve it. Whenever I have time will post a briefly her story/fight.

Thanks for the inputs.

Saturday, 5 March 2016

Taurine supplementation slows tumor growth in a nude mouse GBM model

This is not the most accurate model for human GBM (U87 GBM cell line which is going on 50 years old; subcutaneous rather than orthotopic tumor implantation), but still interesting, showing that taurine supplementation slows tumor growth in the mice by antagonizing hypotaurine.

Hypotaurine evokes a malignant phenotype in glioma through aberrant hypoxic signaling

Wednesday, 2 March 2016

Induced Hypothyrexinemia

I am going to give this concept a run and I was wondering if anyone else out there has tried it.  Right now I am trying to get the drugs and dosages together to get started.  I am reading in Aleck Hercbergs study that he started his patients on 40-50 mg of methemazole and 5 to 6 micrograms of T3.  Dr hercbergs sent me an email saying that I could also use cytomel starting at 12 micrograms/day.  Just curious to know what other people are doing.

Tuesday, 1 March 2016

Head Protection from Falls

Quick note, we have saved my mom from having to go to the ER many times with a simple soft foam helmet she wears whenever she gets up to go anywhere. We never know when she will get dizzy, have a seizure, or just trip and fall, but we don't want to immobilize her. Every doctor has been very happy to see this simple solution. The sizes run small, so I recommend getting it large or XXL.

You can see ours here on Amazon:

  • ProForce Lightning Karate / Martial Arts Headgear (Size:Medium (Head Circ: 21&quot; - 22&quot;) Color:Blue) by Pro Force
  • New Information on NovoCure TTFields in Combination with Immunotherapy

    Hello all,

    NovoCure went public  this past year, which increases the transparency in the company.  The following is from the conference call that they had with investors today, but provides information that I have never seen addressed with regards to NovoCure:

    Okay, that's helpful. Lastly for me, so a bit of a long-winded question so please bear with me. But obviously Celldex has their second interim analysis for RINTEGA in March, and their product addresses about 25% to 30% of GBM patients.
    And some docs we've spoken with have indicated they might not use Optune on top of RINTEGA because of added cost, the burden to the patient, and some uncertainty around whether Optune is additive. So how do you plan to ensure that a positive outcome for RINTEGA does not negatively impact adoption of Optune? Thanks for taking all my questions, guys.

    I'm going to turn this one over to Eilon Kirson, but clearly, immunotherapy is a topic of interest, with respect to the specifics of Celldex, but also more broadly. We've demonstrated, over time, how well Optune works with chemotherapy, anti-angiogenic therapies, and of course we are focused on immunotherapy as well. Eilon, why don't you provide a little bit of an update with respect to our work in this area?

    So this is actually a little bit of new information which we haven't shared before. As we've promised in previous meetings and have committed to looking at the effect of Tumor Treating Fields together with immune therapies, we have actually started a large project in pre-clinical research looking at combination of Tumor Treating Fields with immune therapies, and specifically we looked at PD1 inhibitors.
    And we have some very interesting initial findings, showing first of all that Tumor Treating Fields do not adversely affect the immune cell infiltration into the tumor. So this potentially allows for a full immune response to be mounted against tumor cells using immune therapy in the presence of Tumor Treating Fields.
    In addition to that, there is work that was presented from Tel Aviv Medical Center, where they applied Tumor Treating Fields to immune cells, to specifically CD4 cells, and looked at the functionality of these cells. And they found that there was no decrease in several of the major immune activity parameters, including secretion of anti-tumeral molecules, increased PD1 expression and exhaustion on the immune cells, and active degranulation. So all of these immune parameters are maintained in the presence of Tumor Treating Fields.
    Finally, we looked at combination of Tumor Treating Fields together with specifically PD1 inhibitors in animal models. And so that tumor volumes were lower for the combination treatments of TTFields with PD1 inhibitors, significantly lower than either treatment alone.
    So we feel a lot more comfortable today saying that what we've said before without the data just as a belief. But today, I think we have data to support the fact that Tumor Treating Fields will be able to used together with immune therapy, and that should actually I think make it much easier for prescribers when this data is published and presented. It will make it much easier for users to use TTFields together with immune therapies if they're approved.

    It seems as though their preclinical animal models are showing a benefit when NovoCure is combined with immunotherapy.  Let's hope this continues to play out in humans.