Glioblastoma HELP!!

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This topic contains 9 replies, has 6 voices, and was last updated by  Anonymous 6 years, 2 months ago.

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  • #3642

    glio2012
    Participant

    Hello,

    I am desperately wanting to know if someone here use DCA for glioblastoma with good success.  My dear mom has brain cancer since april of 2012 and had the surgery and went through chemo and radiation which almost killed her.  Her tumor did not show shrinkage and is growing back.  Her doctor advice us that they do not have anything else that can treat her.  She got bone marrow suppression due to chemo and radiation.  To me bone marrow suppression was due to chemo drug temador.  Please anyone who can advice what dosage of DCA i can start my mom with and any advice will be greatly appreciated. 

    My mom is always giving and never expect anything back from ppl who she helped and that really make me depressed because she cannot enjoy her own life.

    Desperate and really appreciated any help and/or advice.

    God bless!!

    glio2012

    #4618

    Dan52
    Participant
    #4622

    Anonymous

    We have started a DCA protocol for cancer in Nassau, Bahamas.  I do not know if it will be open to non-Bahamians.  One of the baseline studies we would request is a FDG PET/CT and in your Mom's case an MRI as well.  The ideal test would be FDG PET/MRI but I do not know of any center doing that. 

    If you have interest in this protocol related above, let me know and I will inquire further. 

     Stephen B. Strum, MD, FACP

     

    Board Certified: Internal Medicine, Medical Oncology

    #4674

    glio2012
    Participant

    Hello Stephen B,

    Could you please give me more info on it?  Thanks

    Does anyone know using DCA can decrease potassium and increase chloride?

    Thanks in advance,

    #4675

    Anonymous

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    Glio2012, 

    I am not aware of any decrease in potassium levels using DCA. DCA has listed a number of biological actions that are purported to be active vs cancer:

     DCA actions include:

    depolarization of the mitochondrial membrane, 

    suppression of glycolysis, 

    enhancement of mitochondrial oxidation, 

    production of reactive oxygen species, 

    induction of the plasma membrane potassium channel Kv1.5, release of pro-apoptotic factors from mitochondria.

    –Babu 11

     

    from the DCA site, some members have been extremely helpful (synergistic if you will) in finding and sharing crucial information that might play a HUGE part in enhancing DCA activity.  This is what makes me feel very good about devoting significant time to patient forums.  I am looking into the issue of using DCA with drugs called demethylating agents that can "awaken" specific proteins that carry DCA to the cancer cell.  These are transporters.  If DCA can be transported more effectively to the cancer cell then the dose of DCA can not only be lowered but DCA will have increased selectivity against cancer along with increased efficacy in killing cancer. 

     

    Also, for many of you there is a need to realize the value of synergy in treating illness. DCA and other drugs of known anti-cancer efficacy would be reasonable to use in combination.  For too many of you we do not have time to do the step by step studies to FIRST show DCA has anti-cancer activity.  For me, this is a crucial first step. I do not like to assume that Drug "A" works and because Drug "B" is already known to work then let's add A + B.  This leads to years, if not decades, of controversy and lack of established fact.  Thus, our protocol in the Bahamas is with DCA as monotherapy. 

    In the meantime, I am exploring trying to get demethylating agents to be used with DCA in a second phase of our study, hoping that the first phase confirms the anti-cancer activity we have seen in patient TM. 

     

    The personal link to the Bahamas trial is  Örn  Adalsteinsson, Ph.D.

     

    Örn Adalsteinsson, Ph.D.

    T: 610-628-3419

     

    Stephen Strum, MD

     

    #4676

    Anonymous

    Dr. Strum

    What types of cancer are being tested in the Bahamas trial?

    #4678

    glio2012
    Participant

    Dr. Strum,

    Thank you very much for your quick respond.   I start my mom on the DCA and i start noticing her left side (which is the side affected) is swollen  Is that normal and she feels very weak to where she was not able to grip well. 

     

    Warmest regards,

    #4679

    Anonymous

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    Glio2012, 

    In a patient with glioblastoma, a primary brain tumor, any change in motor function such as not being able to walk, speak, grip etc is a huge concern that the Glioblastoma is progressing.  If your Mom's grip is weak in the right hand, for example, that would relate to a problem on the left side of the brain.  If this is the case, your Mom's local medical oncologist should be notified.  Either the tumor is increasing or there is associated edema involving the brain causing the problem.  In either case, this is a cause for significant concern.  

    For you and others on this site please be aware that my input as a cancer physician is purely that of a volunteer.  Some of you are understanably needy but I am in no way involved in the care of the patient.  I am here to give general advice and not specific care.   Please be aware of this since a few of you have initiated an almost daily email private message to me. If this continues, I will have to remove myself from further involvement on this site.  There is a fine line between my wanting to help and that of being "used" way too much instead of your local physicians. 

    Stephen Strum, MD, FACP

    #4726

    menabulldog
    Participant

    To moderator— (this is only meant to help, but ok not to publish if you dont feel comfortable)

    i dont know if this is common knowledge —but when you combine dca with omeprazole with sulindac , you stress cancer mitochondria more. also  for gliomblastoma , one wonders if a multimodal approach with dca would help??

    would a combo of metformin,dca,omeprazole,sulindac,mebendazole,hydroxychloroquine,valproic acid, high dose simvastatin,amiloride,sulfurophane,dihydroartemisinin,and egcg , at the right doses   provide a survival benefit ?   when combined with chemoradiosurg early in course and taken chronically.

    ( each agent affects multiple signalling systems in GBs.)

    The references for each agent can be found in PUBMED –.

     also , has any thought been given to taking dca at smaller dose or same dose , but 3 times a day? Maybe i am wrong, but i think dca has halflife in body is not more than 4 hours ….  one can check the pharmacokinetics of dca on Pubmed. 

    #4727

    Anonymous

    menabulldog: I am familiar with the synergistic literature with drugs like omeprazole (Prilosec) and DCA. What you are proposing is something that goes way beyond adding one or two drugs to a foundational drug, in this case DCA, for synergy.  

    Your email above has some merit in that if we had a task force of committed individuals that would review the  peer-reviewed literature on these various agents and sort out the ones where there is hopefully human data, then protocols involving clinical trials comparing doublets or triplets of agents would be reasonable.  But what you propose above is science fiction in that no recognized medical person or facility would throw the kitchen sink at a patient, even a cancer patient, with 4 or more agents without fearing major drug interaction and law suits.  

    But again, the problem with this site and its members is that we toss out a lot of provocative ideas but only 1 or two of those participating are doing any leg work.  

     Never doubt that a small group of thoughtful, committed people can change the world.  Indeed, it is the only thing that ever has. –Margaret Mead 

    Stephen B. Strum, MD, FACP

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