Thursday 25 January 2018

Need suggestions to incorporate supplements in my mom's cocktail(GBM Patient)

Hi folks,

My mother(Age 47) was diagnosed with glioblastoma(IDH1/2 -ve, Methylated) in September 2017, and it has left me devastated ever since. She has completed her 6 weeks of radiation/chemo and her first cycle of 5/23 temozolomide. Her next cycle of temozolomide starts 5 days from now. I stumbled upon this blog just a week back, and have found this to be immensely helpful and resourceful.

I need help from you guys on what else should I incorporate in my mom's cocktail. Following are the supplements that are present in her cocktail per day already:

Metformin: 500 mg
Boswellia Serratta: 4000 mg
Resveratrol: 400 mg
Fish Oil: 3600 mg DHA+EPA + 400 mg of other omega 3 fatty acids
Curcumin with piperine: 5000 mg
Longvida: 400 mg
Quercetin: 5000 mg
Melatonin: 20 mg
Selinium: 200 mcg
Vitamin ADK supplement with 5000 IU Vitamin D3
Ashwagandha: 500 mg
Garlic: 6 cloves
Ginger: 6 cloves
Dendritic cell therapy: On the cards
Cannabis oil: Dropped because it was suppressing her WBCs

She is also on ketogenic diet and has done about 2 weeks of hyperbaric oxygen. We are looking at two more weeks of hyperbaric oxygen.

I'm looking for more supplements that are good adjuvants to temozolomide/standalone good adjuvants that I should definitely include in my mom's cocktail. It'd be great if you guys could help out in more supplements that I should include, I'm finding it very hard to self medicate my mom. Basis Ben Williams' book and reading several blogs, the following supplements have repeatedly been catching my attention:

1. DCA
2. Chloroquine
3. Care oncology clinic protocol(Metformin + Doxycline + Mobendezole + Atorvastatin)
4. Ruta 6 + Calceria Phos(Not sure if it is a good idea to use while on chemo)
5. Methadone
6. Veramapil
7. Low Dose Naltrexone
8. Disulfiram
9. Perilyl Alcohol
10. Methadone
11. Celebrex

She is already taking a total of 50 meds per day and I think she can take only 10-15 more. Would be great if you can help me from above list/any other supplement that should definitely be a part of her cocktail.

Thank you in advance!

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21 comments:

  1. Stephen W25 January 2018 at 16:36

    Sahil, I'm adding you to the Brain Tumor Library, so you can view my "Pharma and non-pharma list and ranking for GBM" as well as the many other resources there. The rankings are subjective and not set in stone, just a rough indication of things I personally would prioritize based on evidence, ease of access etc.

    I would consider either Celebrex or etodolac (both COX-2 inhibitors with approximately equal specificity for COX-2 versus COX-1), medicinal mushrooms (PSK/PSP/Coriolus, Maitake etc., probiotics.

    Are you sure it was cannabis oil that was suppressing white blood cells? Cannabis (specifically Sativex THC:CBD oral spray) has clinical trial evidence showing improved survival when added to dose-dense TMZ in a small randomized clinical trial.

    Perillyl alcohol is not widely available and requires special equipment. Some have flown to Brazil or had Clovis da Fonseca fly to their country (and pay his expenses) in order to access it.

    DCA can be purchased without a prescription online, as can low dose naltrexone. Most of the other things you mentioned would require a prescription.

    Disulfiram and DCA can both lead to peripheral neuropathy, so watch for this if you decide to try either of them. The proper dosing can be tricky with DCA as some people are slow and others are fast metabolizers requiring lower or higher doses.

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    1. Sahil Pruthi28 January 2018 at 12:20

      Thank you so much for sharing the documentation Stephen! Your content has been brilliantly organized and helped me understand things so much better. Basis your suggestions and going through your sheets, I plan to add the following:

      1. Cereblex 200-400 mg per day
      2. PSK/PSP
      3. LDN
      4. Care Oncology protocol

      However, I was going Ben Williams' book where I mentions a concern about the COX-2 inhibitors, quoting it:

      It is critical to note that many of the mechanisms by which NSAIDS work are strongly involved in the growth of high-grade gliomas, and that the expression of the cyclooxygenase enzyme that is the target of COX-2 inhibitors correlates strongly with the proliferation rate of glioblastoma tumors and correlates inversely with survival time (120,
      121).

      One of the research papers that he quoted: https://pdfs.semanticscholar.org/f6f4/07d5eb034c5c711cc5483a43048740fd9d74.pdf

      I see conflicting views about Cereblex, should I use it or should I not?

      Also, just wanted to know if the drug interactions list is exhaustive in the blog or not? I ask this because I'm just a little scared of drug interactions while self medicating my mom on the drugs that I've mentioned in my post.

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    2. Sahil Pruthi28 January 2018 at 12:23

      And yes, I'm pretty sure that the Cannabis was suppressing my mom's WBCs. I have been consulting Green Health Consultants for my mom for cannabis consumption who had told me that the cannabis can be a T cell suppressor in a few patients.

      My mom's WBC count wasn't increasing from 2000 despite giving WBC injections(Grafin) for 2 consecutive weeks. I stopped cannabis for a week and gave the WBC injections, and her WBC increased to 12000.

      She also told me that the dendritic cell therapy and the cannabis protocol shouldn't be done together because of the above mentioned reason, which is where a lot of patients go wrong I've realized.

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    3. Stephen W28 January 2018 at 13:57

      "expression of the cyclooxygenase enzyme that is the target of COX-2 inhibitors correlates strongly with the proliferation rate of glioblastoma tumors and correlates inversely with survival time"

      This statement is in support of COX-2 inhibitors like Celebrex. If COX-2 expression correlates inversely with survival time, that would suggest using a COX-2 inhibitor could be beneficial.

      COX-2 leads to production of prostaglandin E2 (PGE2) which has immunosuppressive and proinvasive effects.
      https://www.ncbi.nlm.nih.gov/pubmed/25912457
      COX-2 inhibition is probably especially important during and after radiotherapy, and in combination with immunotherapies. Several in vivo models show improved efficacy for anti-cancer vaccines when combined with Celebrex or other COX-2 inhibitors.

      Delete
    4. Stephen W28 January 2018 at 14:13

      No the drug interactions on the blog is not exhaustive. You can use a free drug interactions database at drugs.com (click on Interactions Checker), but a lot of the results and warnings have to be taken with a grain of salt. I mainly use that database for the literature references.

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    5. Sahil Pruthi7 February 2018 at 23:43

      Hi Stephen,

      Needed a few suggestions from you and it would be great if you could help here:

      -I had noticed that your excel sheet mentioned of LDN as grade A, but there was no mention of methadone. Basis my research, they both target the opioid receptors. Since my mom is going through her temozolomide cycles, which one would you recommend more as an adjuvant? I'm only getting to read positive success stories for both.
      Can both of them be used together? Can they be used while on Dendritic cell therapy?

      2. I plan to start dendritic cell therapy for my mom and the doctor there plans to start 50mg of cyclophosphomide everyday for better functioning of the dendritic cell therapy. While I researched, I also got to know that Metformin, statins and COX-2 inhibitors(as you pointed in the message above) are also good adjuvants for better functioning of the DC therapy. I want to know if I use all of the above mentioned, will the efficacy increase further or some interaction might just result in decrease in the efficacy of the dendritic cell therapy?

      Thanks

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    6. Stephen W8 February 2018 at 12:12

      Hi Sahil,
      This is a great question. I recently re-did my rankings prioritizing agents with beneficial immune effects. I clearly need to add methadone to the list of agents, thanks for pointing out this oversight.

      Methadone is an opioid specific for mu-opioid receptors. Naltrexone is an opioid antagonist with greatest specificity for mu-opioid receptors.

      Low dose naltrexone *temporarily* blocks opioid receptors causing the body to compensate by increasing production of endogenous opioids, most notably "opioid growth factor" or met-enkephalin, which has greatest activity at delta-opioid receptor.

      So, there is a chance that even low dose naltrexone could interfere with methadone treatment, by temporarily blocking the mu-opioid receptor where methadone is active.

      If you can get a prescription for methadone, I would probably prioritize that (over LDN) during chemotherapy, as methadone is thought to be a chemosensitizer.

      I'm not sure if methadone would be adviseable during immune therapy, as opioids can have immunosuppressive effects. It's also recognized that opioid effects on the immune system are complex.
      https://www.ncbi.nlm.nih.gov/pubmed/26985446

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    7. Stephen W8 February 2018 at 12:35

      Where are you pursuing the dendritic cell therapy?

      I've seen multiple (in vivo) studies showing improvement of vaccine efficacy by COX-2 blockade (for example, with Celebrex). COX-2 is the rate-limiting enzyme in the production of prostaglandin E2 (PGE2), so any blockade of COX-2 would lead to lower levels of PGE2. PGE2 has immunosuppressive effects in the cancer setting.

      Enhanced immunosuppression by therapy-exposed glioblastoma
      multiforme tumor cells
      https://www.ncbi.nlm.nih.gov/pubmed/25363661

      I've seen only one in vivo study on the anti-tumor immune stimulating effects of metformin. In this model metformin enhanced CD8+ T-cell function and infiltration into tumors.
      http://www.pnas.org/content/112/6/1809

      Could you provide a link for the statin + dendritic cell therapy study?
      After a brief search I could only find studies showing suppressive, tolerogenic effects of statins on dendritic cells.

      "We previously demonstrated that atorvastatin induced immature dendritic cells (DCs) derived from spleen in vitro. Administration of these tolerogenic DCs led to amelioration of experimental autoimmune myasthenia gravis (EAMG). The protective effect was mainly mediated by inhibited cellular immune response, including up-regulated regulatory T cells and shifted Th1/Th17 to Th2 cytokines."
      https://www.ncbi.nlm.nih.gov/pubmed/26311508

      "Our data suggest that atorvastatin-induced immature BMDCs are able to secrete tolerogenic Dex, which are involved in the suppression of immune responses in EAMG rats. Importantly, our study provides a novel cell-free approach for the treatment of autoimmune diseases."
      https://jneuroinflammation.biomedcentral.com/articles/10.1186/s12974-016-0475-0




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    8. Sahil Pruthi9 February 2018 at 00:58

      Hi Stephen,

      I plan to start dendritic cell therapy for my mom at Verita Life Bangkok. They won't be using the tumor block since it is stored in paraffin, but have their own GBM antigen bank against which they shall train the dendritic cells.

      So methadone is a chemosensitizer and probably can have immunosppressive effects on the DCs. Since I'm doing both together, I guess I can't do methadone :/

      I think I'd add LDN to the protocol then, hope that's okay?

      https://www.ncbi.nlm.nih.gov/pubmed/24455776

      The above study says that LDN can enhance the efficacy of the DC therapy as well.

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    9. Sahil Pruthi9 February 2018 at 05:01

      I spent a lot of time searching for the article on statins and DC therapy Stephen, I couldn't find it. So sorry :(

      The article that I'd read wasn't a Pubmed research, but it said Metformin, Cyclophosphomide and Statins help in better functioning of the dendritic cells. Cyclophosphomide has been recommended by my oncologist at Verita, I'm already giving Metformin and was considering adding a statin as a part of Careoncology protocol.

      Wanted to be sure if it is safe doing them all together while on dendritic cell therapy. I'll go ahead with Metformin, LDN, Celebrex and Cyclophosphomide while on the DC therapy. Hope that's alright? Won't do the entire Careoncology protocol.

      I'll share with you that article on this thread itself whenever I stumble upon it again.

      Delete
    10. Stephen W9 February 2018 at 11:18

      Using LDN in vitro wouldn't mimic the effect of LDN in vivo. The primary of effect of LDN in vivo is to increase the bodies production of endogenous opioids, such as met-enkephalin. None of this would occur in vitro.

      Delete
    11. Stephen W9 February 2018 at 11:20

      There is definitely good research supporting the low dose cyclophosphamide. The only thing I'd question would be the statin.

      Delete
    12. John10 February 2018 at 03:04

      Hi Sahil - I also heard from a couple of different doctors that Methadone should not be taken during an immunotherapy. By the way, Methadone is extremely popular amongst cancer patients here in Germany, where it's been touted by some as a kind of potential miracle cure. However, at least my oncologist has not subjectively seen this effect with his GBM patients, so I guess the verdict is still out there. Obviously, there are also some who claim to have observed a strong effect + a lot of positive case reports...

      One thing I would consider adding is probiotics. There are some studies that suggest it might have a pretty direct effect on immunotherapy / vaccination success. Though I think still poorly understood today, the gut has a strong link with the immune system.

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    13. Stephen W10 February 2018 at 11:34

      Exactly John. I'm a big supporter of probiotics especially to increase the efficacy of immune therapy.

      The most compelling study yet published may be this one:

      https://www.ncbi.nlm.nih.gov/pubmed/29302014

      I'll upload this to the Immunology folder in the Library right now.

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    14. Stephen W10 February 2018 at 11:36

      I've uploaded to the "Microbiota" subfolder of the Immunology folder.

      Delete
    15. Sahil Pruthi11 February 2018 at 19:42

      Thanks for the inputs here John! I've read of the miracle cure stories with Methadone too, which is why I was keen on using Methadone.

      Delete
    16. axel valdivieso3 April 2018 at 17:50

      Hello, My father is in a similar situation starting Inmunotherapy at IOZK next month and just after the 6 weeks radio-TMZ treatment for GBM. He didnt want to use much suplementation during radio as Ketogenic diet didnt go well with his stomach, (mainly accepted sativex, melatonin, choloroquine and metformin) trying to decide on the suplementation forward as he is now open to more supplementation, I was wondering if we could get Access to Stephen W brain tumor library somehow. Thank you very much in advance

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    17. Stephen W3 April 2018 at 22:12

      Hi Axel, I need your email address to share the library with you. My email address can be found on the User Information page (one of the pages at the top of the blog)

      Delete
  2. Vpnow25 January 2018 at 22:34

    Hi Sahil, please read a post here from last week about improvement of ketogenic diet. There is evidence that it might work sinergistically with alpha lipoic acid, hydroxycitrate and capsaicin supplements.
    Also i would suggest adding Milk Thistle for its liver protection properties and anti tumoral effects.

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    1. Sahil Pruthi29 January 2018 at 04:40

      Thank you so much Vlad! Yes I've gone through that post too. She is going through hyperbaric oxygen right now. Will add more adjuvants that go well with the ketogenic diet going forward.

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  3. Vpnow25 January 2018 at 22:42

    I forgot to mention that we are for a month on Keto diet plus above supplements. Obviously is to early to draw any conclusions but it seems to be working so far as things are stable for the moment.

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