Friday, 31 July 2015

Seth- Cocktail Profile


RT/CT Cocktail

DX: April 2nd, 2015
Age: 54
Weight 73kg
GBM unmethylated parietal lobe.  25x 29mm
75% Resection: April 15th, 2015
RT/CT:  May 28th  to July 9th
Progression to 13mm: June 4th
Progression to 23mm: July 27th

RT/CT Cocktail was ramped up over 6 weeks.  Last 3 drus were only dosed for a couple weeks.

Drugs:
Temodar
Chloroquine Phosphate
Valproic Acid
Celebrex
Sildenafil
DCA
Minocyclene
Metformin
Sertaline

Supplements:
CBD
Pterostilbene
Fish Oil
Milk Thistle
D3
Green Tea
Curcumin
Lycopene
Maitake Mushroom
Reisgh Spores
Melatonin
B1

Environmental:
Low Carb, No sugar, No starch, No milled products
Walk pushing 65lb sled 45 minutes a day



Chemo Cocktail


Drugs:
Temodar    7 on, 7 off, 7 on, 7 off;  140mg
Macitentan 7 on, 7 off, 7 on, 7 off;  30 to 60mg
Disulfiram
Keppra
Chloroquine Phosphate
Celebrex
Sildenafil
Minocyclene
Metformin
Prozac
Cimetidine

Supplements
Same as above plus:
Boswellia
Selenium
 

ICT-107

Stephen and others

Phase 1 trials of ICT-107 looked very promising and I know phase 2 trials were started a few years back.  Any updates on how this is progressing?

Mike

Thursday, 30 July 2015

cocktail profile Corneliu

I want to update my hubby situation. we made MRI on 9 JULY , and sent it to his neurosurgeon, who said that is ok, . so we are very grateful and hoping that with this treatment Cornel will not make any recurence. Cornel take with prescription:
TMZ 400 mg / day 5/23
Celebrex 200 mg x 3 /day
verapamil 80 mg x 3 /day
keppra 500 mg x 3 /day
omeprazol 20 mg x 2 /day

without prescription :
Turmeric 720 mg x 3 /day
cimetidine 200 mg x 2/day
depakine 500 mg x 2 /day
Plaquenil 200 mg x 1 /day
MAITAKE mushroom 600 mg x 3/day
Astragalus 500 mg x 1 day
Aloe vera 450 mg x 1 /day
wormwood 425 mg x 3 /day
Reishi mushroom 600 mg x 3 /day
MILK THISTLE 1000 MG X 1 /day
Resveratrol 100 mg x 2 /day
lycopene 20 mg x 1 /day
vitamin D3 5000 iu x 2 /day
Yucca 500 mg x 3 /day
Folic Acid 800 mg x 2 /day
Vitamin C (natural from seabuckthorn and fruits) 500 mg x 1 /day
Agaricus 500 mg x 3 /day
Geranium robertianum 350 mg x 3 /day
Devils Claw 500 mg x 3 /day
Boswellia 500 mg x 2 /day
selenium 100 mcg x 2 /day
Cordyceps Sinensis 600 mg x 3/day
Metformin 1000 mg x 1/day 
DCA a half teaspoon /day
Omega 3 extrra x 2/day
melatonin 10 mg x 1

Cocktail Profile for Jeremy (Mikes son)

Here is my sons cocktail.  Chloroquine is being taken one month on, one month off.  Disulfiram is being taken on TMZ days.  EGCG taken only when taking TMZ.  DCA taken continuously.  Artemisinin and its analogs taken on a rotation schedule, but schedule is modified as necessary so they will be taken concurrent with TMZ.

Tumor specifics:  IDH1 mutant.  P53 mutant.

Last MRI was July 26th.  Inoperable brain stem GBM continues to be absent and the resected GBM (100%) in the left hemisphere shows no recurrence.  More diffuse lower grade non enhancing tumor is stable since late last year.  Concurrent use of Optune.



Morning
Evening




Artemisinin  100 mg  Caps   5 days on 5 off 2

Artesunate 50 mg caps   5 days on 5 off 3

Artemether   40  mg caps  5 days on 5 off

2
Fish oil with High EPA/DHA 2
2
DCA  ~17 mg/kg/day  wt is 82 kg 700 mg
700 mg
Longvida Curcumin 6
6
Lycopene 10 mg   1
Melatonin 20 mg

1
Super Coriolus  3
3
Maitake D Fraction 3
3
Berberine  500 mg / capsule  2
2
Vitamin D 10,000 IU capsules 2

Ultra Soy Extract      1

Selenium  200 mcg 1

Milk Thistle   300 mg/capsule     2
2
Thiamin  250 mg

1
Pterostilbene       3
2
Benfotiamine    1

EGCG    (take on days with temodar)

4
Zinc  50 mg




PRESCRIPTION MEDS


Temodar


Vimpat


Tagamet  (200 mg tablets) 2
2
Metformin  (1000 mg tablets) 1
1
Celebrex      200 mg tablets 2
1
Sertraline (Zoloft)   50 mg  1

Minocycline  (100 mg tablets) 1
1
Chloroquine Phosphate    250 mg tablets) 1

Disurfiram (takes days you are on Temodar)

Cimetidine and Lansoprazole?

Hi all,

When perusing various cocktails posted on the groups I have noticed some people take Cimetidine, some take Lansoprazole (or Omeprazole), but no one seems to take both.  They seem to act in different ways (although treating similar systems for those using them for their intended purpose).  Is there a contraindication for using both?

Thank you!
Lori

Cocktail Profile - Chance - 38 Y.O. Male

Diagnosed at surgery 12-1-2014, near gross total. GBM-4. UCSF. Standard of care. Finished 6th round of chemo in July 2015. PTEN deletion - positive. EGFR - negative. MGMT - positive.

7-13-15: No tumor progression.
9-11-15: Some enhancement: edema or progression?
9-17-15: Tumor Board called progression.
9-28 to 30-15: Toca 511 Trial daily infusions at UCSF
10-26-15: Seizure, MRI demonstrating increased enhancement
10-30-15: First round Toca 5-FC pills (19 pills x 3 x day x 7 days = 399 pills)
11-20-15: Avastin infusion.
12-02-15: Neuro-opthamologist confirms right side vision loss as function of tumor.
12-04-15: MRI shows improvement. Avastin infusion. Second round Toca 5-FC pills begins.

Prescribed Meds:
Keppra - 1250 mg - 1 ea 2 x per day
Decadron - 6 mg - 4 mg 1 x per day, 2 mg 1 x per day
Lovenox - 100 mg injection - 2 x per day (for blood clot)
Metformin* - 500 mg - 1 ea 3 x per day
Toca 511 Trial (See Post "For Those Interested in Toca 511 Trial")
Avastin - 985 mg infusion every other week

Supplements:
Curcumin Longvida - 500 mg - 1 ea 2  per day
Moringa Oleifera** - 4 g - 5 ea 2 x per day
Boswellia  - 600 mg - 1 ea 2 x per day
EGCG Green Tea - 500 mg - 1 ea 2 x per day
Fish Oil - 1 ea 2 x per day
Pterostilbene-Blueberry 50 mg - 3 ea 1 x per day, 2 ea 1 x per day
Vitamin D3 - 5000 - 1 ea per day
Zinc - 50 mg - 1 ea per day
Melatonin - 20 mg - 1 ea before bed
Coriolus Super Strength - 600 mg - 3 ea 1 x per day, 2 ea 1 x per day
Myricetin - 100 mg - 1 ea per day

Added 12-01-15 to synergize Avastin:
Cannabis Oil (from Aunt Zelda) - 200 mg CBD
DCA 330 mg 3 x day and Vit B-1 500 mg 2 x day (weekdays only)
Honokoil 500 mg 2ea 2 x day


*Purchased originally from KiwiDrug.com. Now prescribed by PCP.
**Not part of typical cocktail but something known to Gilford family and Chance requested.


Ben Williams supplement list for reference

This is a list of supplements and doses that Ben Williams published awhile ago.  I re-post it here for the sake of reference.



Genistein (from soy) : 50 mg/day
Silibinin (from milk thistle): 600 mg/day
Green Tea Extract: 1450 mg/day
Curcumin (from turmeric): 800 mg/day
Resveratrol: 150 mg/day
Lycopene: 20 mg/day
Maitake D-fraction (or PSK) : or 3 g/day for PSK
Melatonin: 10-20 mg/day
Vitamin D3: 5000 I.U./day
Fish Oil: 5000 mg/day


Copious amounts of garlic, berries, cheeries, pomegranate juice, and broccoli sprouts.

MATIAS - cocktail profile

Hi everyone!

So, I guess I´ll be the first one publishing my cocktail here!  

I think it is very straightforward and easy to understand, so I´ll just clarify that the items in bold are actual drugs, while the other are -mostly- supplements.  About genistein, it´s in red because I think the dose might be low, so if anyone is taking it, I´ll like to hear your opinion.




I´ll like to add that, besides from the cocktail above, that I take everyday, I do the following activities, which are related to my GBM treatment:

  • monthly 5-day TMZ cycle (going for my 13rd cycle, and pretending to go up to the 24th).
  • 4 daily Perillyl alcohol inhalations (around 30-40 minutes each).
  • go to the gym twice a week.
  • do a massage occasionally.
  • follow a quite rigorous, very low-carb diet.

I´ll add some information about my own case here:

  • giant cell GBM
  • surgery on May 5th, 2014
  • 31-year-old when diagnosed (33-year-old now)
  • radiation + TMZ (SOC).
  • MGMT: positive.
  • IDH1: negative.
  • EGFR: positive (>90%,+++).
  • supplement cocktail started right away, with curcumin (added other supplements along the way).
  • drugs where added this year, progressively.

I´m looking forward to hearing what you guys and girls think about my cocktail, how it compares to yours and what else you do to fight GBM!

All the best,

Matias.


Cocktail Profiles

I have an idea to increase the utility of the blog further:

Cocktail Profiles.  I encourage everyone who is on the author list (if you're not on it and would like to be, let me know) to start a new post and for the title of the post call it: your name - Cocktail Profile.  Then on this post simply make a complete list of your current cocktail including doses.  The label for these posts will be "cocktail-profile".  The author can add this label or I will add it.  Every time there is a change to the cocktail, the author can edit the post to update it.  Then in the future anyone will be able to pull up an up-to-date list of everyone else's cocktail by selecting the "cocktail-profile" label from the list of labels on the right of the screen.

In addition to cocktail information, any information on pathology (for example MGMT status, EGFR status, IDH1 status, p53 status) and conventional therapies, and stage (newly diagnosed, stable, progressive), would also be helpful.


Chris Elliott Fund - a resource for those seeking clinical trials

Wondering if anyone has experience with this group?

Thanks!

Tapering Decadron

This has been Chance's biggest challenge, it seems, so I wanted to ask for suggestions/support.

His resection was December 1, 2014, and he's been trying to divorce the decadron ever since. He is down to 1.75 mg per day: 1 mg at breakfast, .75 at lunch. It was suggested by Aunt Zelda's that he taper in quarters, instead of halves, and we liked the idea very much.

He's had a series of setbacks: a blood clot in his leg, bronchitis, his last round of chemo... He got very nauseated at the end of chemo and didn't eat for one full day, which means he didn't take his Decadron either, and he got a terrible, crippling headache. Yesterday, he ate a bit and he took the 1 mg Decadron and within a few hours he began to feel better. It gave us a peak into how much power the Decadron still holds.

His hematologist recently mentioned he has patients that are unable to get off Decadron, so they just continue indefinitely on the lowest possible dosage. Chance is 38 and his biggest complaint is insomnia, but of course he's gained weight and is discouraged every time he looks in the mirror. He has always been very physically active and worked out at least five days a week.

I recall Rich said he finally just bit the bullet and stopped, but I wondered what others had done. Chance is working, so a debilitating, endless headache is pretty much out of the question. Any ideas how long it may last?

BTW, Chance has just started Boswellia, which I know can help from an anti-inflammatory angle, but Dr. Lee (hematologist) said it will not help with the other symptoms.

Thanks.

Wednesday, 29 July 2015

Don't be shy

Somebody just commented that it seemed like everyone had gone a bit quiet since we transitioned to the blog format.  How is everyone finding it so far?  I wondered if people were comfortable with the idea of starting a new post to ask a question or leave a short comment on a new topic.   It doesn't have to be an essay or anything traditionally associated with a "blog".  A single sentence is fine for a new post.  Keep the questions and comments coming.  Also, I'm happy to help people who are challenged with the new format, so feel free to email me with concerns.  I'd like to encourage people to get familiar with the new blog, as it has the major advantage of searchability by keyword, among other advantages.  However if anyone needs time to adjust and wants to continue using the cocktail thread at cancercompass, that is of course fine too.

braintumourreconnaissance@gmail.com

Stephen

Monday, 27 July 2015

Mefloquine; Memantine; Metformin; Temozolomide

Dear all,
What do you think about adding the above medications to the cocktail? I was browsing trials on MDA site and ran across this one
http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/2011-0374
Quoting:




Temozolomide is designed to kill cancer cells by damaging DNA (the genetic 
material of cells). The damaged DNA may cause tumor cell death.

Memantine is designed to block the activity of a protein found on the surface 
of cells that may control tumor growth and survival. This may stop further 
spread of tumor cells.

Mefloquine is designed to block a protein that helps to clean the waste in the 
cells and to destabilize the cell membrane. Blocking this protein may cause 
tumor cell death.

Metformin is designed to block a protein in tumor cells that is important in 
tumor growth and blood vessel development. This may cause cell death or reduce 
the spread of the disease.

I already take Metformin and TMZ.  Have a chance to order Mefloquine and Memantine and wondering if I should. Is Mefloquine similar to Chloroquine?
Thank you!

Sunday, 26 July 2015

melatonin and seizures


dear all,
has anyone experienced side effects of melatonin related to seizures increase??

We started taking melatonin yesterday as a component of our radiation cocktail..and i read few posts warning people on anti-seizure medications from using melatonin..in fact i also found posts contradicting this fact..so it is very controversial..

This post summarizes the issue:

http://epilepsytalk.com/2012/11/19/epilepsy-and-melatonin-yes-no-or-maybe-so/

Withania somnifera (ashwagandha) inhibits tumor growth in rat glioma model

Withania somnifera Suppresses Tumor Growth of Intracranial Allograft of Glioma Cells

In this study, oral administration of an ashwagandha water extract to rats bearing C6 gliomas for 21 days significantly inhibited tumor volume.  The dose of ashwagandha was equivalent to 140mg/kg dry matter.  Using the allometric scaling method that would be in the neighborhood of 1500 mg of ashwagandha (dry matter), but allometric scaling is a pretty unreliable method to determine equivalent human doses.

I've uploaded the study to the Brain Tumor Library on Google Drive.  Let me know if you want access to the library.

See my update on the Supplements page at Astrocytoma Options.

Stephen

Saturday, 25 July 2015

Boswellia during radiation

Does anyone of you have experience with Boswellia serrata to replace the steroids during radiation??

i read a study with 4200mg /day ..what do u think??
Or should i go with 3600mg/day??

Sarah

Friday, 24 July 2015

Glioblastoma...Our Cocktail and Story version 2

On November 11, 2013, a brain tumor caregiver named Tom started a thread at the forum Cancercompass, called Glioblastoma...Our Cocktail and Story.  Little did he know that this thread would live for over a year and a half, amass over 220 pages of comments, and become perhaps the most lively discussion of drug and supplement cocktails for brain tumors on the internet.

Has the time come to move the discussion elsewhere?  Shall we move the discussion here?

Searchability, fewer technical glitches, increased user-friendliness.  A blog devoted to the brain tumor cocktail approach.

What does everyone think?  Everyone who wants to become a blog author here, or simply reply to another's post, is welcome.

Stephen