Thursday, 25 May 2017

Bad Side Effects from Cocktail? Cannabis OIl? Combo? What caused them? What to Do?

Hello all. This is my first post. I apologize if this question has been answered but in a few searches I did not find answers to my questions. If anyone can point me to past posts that may help me or has any knowledge I would appreciate it. What I have read on this blog has been invaluable and I am sure will offer much guidance in the future.

Bottom Line: We implemented a cocktail:

  • Celecoxib (Celebrex), 200 mg/2x
  • Chloroquine Phosphate, 250 mg, 1x a day,
  • Metformin, 850 mg, 2x a day,
  • Disulfiram, 500 mg, 1x a day
  • Valproic Acid, 500-1500 mg, 3 x a day, only got to 1000 mg dosage

that started a week before standard radiation and TMZ. They were introduced one day at a time. There did not seem to be any side effects but by the second week when he was taking all together along with Keppra 750 mg 2x a day, TMZ 140 mg 1x a day, 8 mg of Zofran 1-3 x a day he was extremely nauseous and could not eat. He was also extremely tired and drained and all he wanted to do was sleep.

However, more seriously one weekend, in addition to sleeping 22 hours a day he had suicidal feelings, also paranoid, thinking someone wanted him to kill himself, being afraid to be by himself and also somewhat hallucinating, at times thinking he was in heaven.

During the week we also had added .3 g of DCA 3x a day.

In the previous weeks, even before the cocktail he had been taking Jayden's Juice, a 28:1, CBD to THC cannabis oil tincture, 2-3x a day plus occasional capsules of 10 mg of THC to 10 mg of CBD with no adverse effects.

However the night before the suicidal episode he had taken a capsule of 50 mg of THC. He woke up earlier than usual, feeling the most alert and least nauseous that he had felt in weeks so that morning he had a 10 mg THC to 10 mg CBD capsule and later that morning everything went wrong.

He was also taking these supplements:


  • 1 multi vitamin
  • D3-10,000 mg
  • Melatonin, 20 mg
  • CRONaxal, 100 mg oxaloacetate and 150 mg ascorbic acid, 3x
  • B1, 100 mg, to help with DCA
  • Digestive Enzymes, 3 x/day
  • Omega-3 Fish Oil, 500 EPA, 250 DHA-3 x/day
  • Boswellia, 400 mg, 3x
  • Adaptocrine (100 mg Vit C/ ginseng 200 mg/Ashwaganda 200 mg/Holy Basil 100 mg/Rhodiola 75 mg/Eleuthero 50 mg, Pantethine 78 mg) 2x
  • Curcumin 400 mg plus ALA 150 mg-3 x
  • Acetyl L Carnitine-500 mg-3x, to help with DCA
  • Maitake Full Spectrum Extract-300 mg 3 x
  • Coriolus Super Strength-500 mg, 3x
  • Serotone Apex Energetics(Vit B6 10 mg/ Niacin 50 mg/Folate 200 mcg/Vit B12 1000mcg/magnesium 10 mg/St John’s Wort 200 mg/5-HTP 75 mg/SAMe 60 mg) 2x
  • Selenium drops, not using now
  • Probiotic, 20 billion

His RO thought it was extremely unusual that he was so tired and had his THS and free t3 and free t4 tested. The TSH and free t3 came back low which was unusual in that it points more to the pituitary than to the thyroid. He has also been extremely cold especially his arms. At this point I told the RO all what he was taking and agreed to stop the off-label drugs until we could figure things out.

We stopped all off-label drugs 3 weeks ago and we stopped the cannabis oil for a week but for the past two weeks have been trying different ratios and strains of full extract cannabis oil as well as different methods of ingesting.

He was put on Dex, 2 mg for a couple of weeks but is now off it. Overall he has felt much better, energy varies, has an appetite most of the time and nausea occasionally. He's been having some really great days full of energy mostly when a lot of people are around but otherwise just wants to sleep.

He finishes his 6 weeks of RT tomorrow. I am trying to figure out what to do about the off-label drugs. The little research I have done points to the chloroquine causing the most extreme adverse effects, paranoia, hallucinations...

Has anyone else had this experience? Any of these side effects? Know what causes them? A combo of drugs?

Do I re-introduce? If so, what? when? What role do these drugs play after the initial SofC? How do they work with the adjuvant TMZ? We did not use Celebrex very long because it is an NSAID and he had a spine surgery and for bone fusion they advised waiting 3 months. We also have a prescription for minocycline but have not used it yet.

Back Story:
My husband is 45 and above average healthy until his grand mal on 2/16/17 where he dislocated his shoulder and had a 75% compression fracture of his T-8. He was subsequently diagnosed with a GBM and had a complete resection on 3/3/17. His tumor was in his left temporal lobe and he had his hippocampus and amygdala removed as well as part of his occipital lobe and parietal lobe. He is functioning quite well, better than expected despite these deficits.

Thanks for any insights.


Is it legal to buy CBD oil in Vancouver?

Does any body know if it is legal to buy CBD oil in Vancouver?


My friend tell me everybody can have 5 gram Marijuana from August this year? Correct?


Best Regards
James Zhou

Wednesday, 24 May 2017

Left over supplements

Hi everyone,

Unfortunately my dad passed away last month after fighting for 13 months. He got the rare side effect of a gastrointestinal tear after 1 avastin infusion.

This blog helped me a lot through the journey so I wanted to pass along our unused supplements if anyone wants them. They are opened.

Mushroom science turkey tail - 1/2 full bottle
Longview curcumin - almost full bottle
wokvel Boswellia serrata extract - full bottle
Pterostilbene - full bottle
Myriams hope CBD oil - almost full

Email me at jennabeck27@gmail.com

sugar substitutes

Dear all,
My son has been pretty good with avoiding sugar, but on a rare occasion when he wants something sweet (sweetening a veggie smoothy or adding it to baking), which substitute do you think could be less harmful - honey? agave? stevia? Thanks!

Tuesday, 23 May 2017

Jeanne Wallace

Hi all,

Anyone have experience with Jeanne Wallace/Nutritional Solutions? I just read about another long term GBM survivor (10 years) who used her services. It seems there are a few of them. I'm thinking of going with her.

Maria

Sunday, 21 May 2017

Targeting Tumor Metabolism - DCA, Selenium, and CoQ10

Hi all,

My Dad (diagnosed GBM Nov. 2016) is soon to be on his 6th TMZ cycle and has had two Avastin Infusions. I've mentioned before on here we are going to use the minimal amount of Avastin, spread out as far as possible, as to not allow the tumor to adapt. We have had great results from Avastin so far.

My hunt to find ways to make Avastin more effective quickly led me to the idea of adding DCA to our cocktail. Originally when I mentioned DCA to our NO he didn't think it was worthy for reasons I didn't full understand.

Now that we are using Avastin I will bring this up again, but my research on DCA and it's "support" of the mitochondrial function also led me to Selenium and CoQ10.

We already have a hefty daily cocktail so I'm just checking in if others have opinions:

Few quick questions:

  • Are there any other current studies that show dosage amounts for DCA with Avastin and it's benefits when taken together? I really want to show a good reason for pushing DCA when I see the NO next. I have only found the one referred to on the astrocytomaoptions website here (using mice): 
https://www.ncbi.nlm.nih.gov/pubmed/23361368

  • CoQ10 - I'm curious why this supplement is not on the shared "Pharma/Non Pharma List Rankings for GBM" spreadsheet. This appears to be just as beneficial as Selenium in supporting mitochondrial function. Any thoughts on why this isn't mentioned as often as Selenium? Preferred dosage and brand?
  • Selenium - I was excited to see is ranked fairly high on the spreadsheet. I also have read it not only helps with mitochondrial function but can potentially make TMZ treatments more effective - looks like standard dosage is 200mcg/day. Any opinions on good brand?

Thank you all for reading and supporting.

Ari

Friday, 19 May 2017

Curcumin

Hi all,

My apologies if there is an answer to this somewhere on the blog here.

My ND recommends BCM-95 Curcumin. But I see most people use Longvida. I'm trying to figure out which is better for crossing the BBB. I know there is a Curcumin folder but I'm having a hard time accessing anything online right now.

So, thoughts, experiences, etc. with BCM-95? She says it's the one most researched.

Also, is there need to worry about curcumin causing the tumor to adapt? I've gotten a few studies to open and it seems to impact the tumor in a number of ways. Could this pose a risk?

Thank you.

Maria

Saturday, 13 May 2017

PARP Inhibitors - Combining SAHA and Olaparib? Preparing for plan b

Hi All,

My Dad was diagnosed with a GBM in October 2016 and has since had chemoradiation, on his 5th TMZ cycle, and has had two Avastin infusions.

The Avastin infusions immediately cleared up his MRIs (the inflammation, not the tumor) and have allowed us to taper his decadron from 4mg/day to 2.5mg/day, but we know that Avastin is not the long term answer so I am preparing for our next step.

As I'm sure everyone is, I'm pushing to have a better than standard of care "newly diagnosed stage" plan (which is right now), as well as a plan for if/when we hit the "recurrent stage".

My last post mentioned our NO's interest in Abemaciclib and the possibility of getting compassionate use, but since then our NO was at a Brain Tumor Conference in Zurich, Switzerland (Lilly, the drug manufacturer of Abemaciclib was there) and did not receive any promising results or information to keep us pursuing this path.

Our next plan is to look at PARP Inhibitors. An article and strategy that quickly caught my families attention is about the combination of SAHA (an HDAC class I + II inhibitor) and Olaparib (a PARP inhibitor).

See the following article below:
https://www.ncbi.nlm.nih.gov/pubmed/26794465

and for full article see this link:
http://onlinelibrary.wiley.com/doi/10.1016/j.molonc.2015.12.014/full

A previous post on this blog mentioned Rucaparib (another PARP inhibitor) has been shown to not penetrate the blood brain barrier effectively, but has anyone heard specific results about oliparib?

Both Olaparib and SAHA are being tested individually in currently active clinical trials with TMZ but I have not been able to find any of the results.

One caution our NO mentioned was that PARP inhibitors can cause issues with blood counts, especially for someone who is on TMZ cycles.

Would love to hear what you all think about this plan and whether you have heard the good/bad/ugly on the PARP Inhibitor trials I mentioned about.

Amazing community we have here. Thank you all for the time.

Ari
Oakland, CA


Wednesday, 10 May 2017

Oligoastrocytoma grade 3, progression, next steps?

Hello all and thank you for this great community!

My sister (30yrs) was diagnosed with anaplastic oligoastrocytoma GIII a year ago. This was a reoccurence, since 5 years ago it was oligoastrocytoma grade 2. Back then she received surgery + 8 cycles of TMZ.
This latest one was partially removed in surgery (it's in temporal lobe). She received RT + TMZ (60Gy, 30days) and after that she has completed 10 TMZ cycles. Latest MRI showed that there might be tumour progression, but it's not definite according to doctors. Next scan will be in two months. Until then she will continue on TMZ for two cycles more.

We're a bit concerned since part of the tumour is still there even after RT and chemo and it might be progressing.
PAD report says: IDH1 negative, mitosis 33/10 HPF, MIB activity 25%,
Previous tumour showed 1p19q deletions.
We have asked for a more specific analysis of the tumour and will receive results in couple of weeks (MGMT, EGFR, etc.).

Until then, our NO recommends to continue with TMZ and see what MRI shows in July.

We have plans to try Keytruda or other aPD1, what's your view? Or is there some other sytostate (CCNU, PCV) we should try before aPD1 ?

Her clinical condition is very good so we try to balance between good quality of life and try to treat this when there's better changes for that.

Supplements she currently takes:
-D3
-Selenium
-Longvida Curcum
-Probiots (L. Casei et al.)
-Leveriacetam

br and thanks,
Juha



Repaglinide (diabetes drug)

Identification of repaglinide as a therapeutic drug for glioblastoma multiforme



Uploading the study to the Brain Tumor Library, folder 2 (Therapies - preclinical (in vivo) studies

Disulfiram and alcohols

I was thinking about disulfiram and alcohols - does it interacts with ethanol and methanol only? What about sorbitol, mannitol etc? Should all "-ols" be avoided in diet?
Mainly what about perillyl alcohol - it is monoterpene but does it have something in common with alcohol?
Can you take them simultanesly- disulfiram and perillyl alcohol (solution with NaCl only)? What are your thoughts and experiences?
Bb