Hi all
Hope you could shed some light to me, my dad's just about to start his 1st cycle of high dose chemo we have him on a cocktail but when is the best time to take the cocktail ? Cause when taking temodar it says he need to fast for 4hours before and have to wait half hour after taking it so do I give dad the cocktail half hour after tmz or before or when?
Also I'd like to ask people's views on folic acid as I've read that it can help with the mgmt
Thanks all
Sunday, 28 February 2016
Saturday, 27 February 2016
Update on Ozone & IV Curcumin
Hello Dear Friends,
I want to let you all know we are experiencing day-by-day improvements in my mom's health. She has GBM IV and was sent home with 3-4 months. She is increasing her physical activity, walking, no falls or seizures or headaches. Language abilities are coming back and her ability to express herself. It is like watching a time machine go backwards- amazing! We have not yet gone for an MRI scan as I want to wait a while more to see if it is stable improvement.
Still, I want to let you all know she is primarily doing IV Curcumin (400mg in 500ml saline) every 3 days alternating with IV Ozone therapy (80cc of 27gamma 2x/day) on the 2 days in between. We are doing both at home using a PICC line. These are the main 2 therapies and have seen significant changes.
Other cocktail remedies include:
Aunt Zelda's THC & CBD
Boswellia supplements, tincture & essential oil
Bach Flower remedies
Dexamethosone
Keppra
Helixor Misteltoe & Helleborus Niger
Gotu Kola
Ashwagandha
LDN
Melatonin
P.s. If you are thinking about using ozone via PICC, try to get silicone special ordered for you- claim an allergy to polyurethane if needed- because silicone is resistant to breaking down with ozone. In our case we didn't know that was possible and are weighing risks and potential benefits.... As we all do under such circumstances.
Anyone who wants more details is welcome to contact me: kusumacreates (at) gmail
Love to you and yours,
Kusuma
P.S.
The prescribing doctor's office has a paper on IV Curcumin, Click Here
See More details in the comments below....
I want to let you all know we are experiencing day-by-day improvements in my mom's health. She has GBM IV and was sent home with 3-4 months. She is increasing her physical activity, walking, no falls or seizures or headaches. Language abilities are coming back and her ability to express herself. It is like watching a time machine go backwards- amazing! We have not yet gone for an MRI scan as I want to wait a while more to see if it is stable improvement.
Still, I want to let you all know she is primarily doing IV Curcumin (400mg in 500ml saline) every 3 days alternating with IV Ozone therapy (80cc of 27gamma 2x/day) on the 2 days in between. We are doing both at home using a PICC line. These are the main 2 therapies and have seen significant changes.
Other cocktail remedies include:
Aunt Zelda's THC & CBD
Boswellia supplements, tincture & essential oil
Bach Flower remedies
Dexamethosone
Keppra
Helixor Misteltoe & Helleborus Niger
Gotu Kola
Ashwagandha
LDN
Melatonin
P.s. If you are thinking about using ozone via PICC, try to get silicone special ordered for you- claim an allergy to polyurethane if needed- because silicone is resistant to breaking down with ozone. In our case we didn't know that was possible and are weighing risks and potential benefits.... As we all do under such circumstances.
Anyone who wants more details is welcome to contact me: kusumacreates (at) gmail
Love to you and yours,
Kusuma
P.S.
The prescribing doctor's office has a paper on IV Curcumin, Click Here
See More details in the comments below....
Ozone Injection via PICC |
Curcumin |
Thursday, 25 February 2016
Promising trial info
this may have been posted already - does anyone have any further information or been involved with the trial?
http://www.dailymail.co.uk/health/article-3462823/Could-SKIN-CELLS-help-cure-brain-tumors-Transforming-cancer-hunting-stem-cells-destroys-disease.html
http://www.dailymail.co.uk/health/article-3462823/Could-SKIN-CELLS-help-cure-brain-tumors-Transforming-cancer-hunting-stem-cells-destroys-disease.html
Tuesday, 23 February 2016
Drug release times
Hi all
Has anyone investigated release time of each drug in their coctail and its relation to ingestion time of temodar (e.g. Disulfiram - 8/9 hours before TMZ, is that right)? Which drugs should be taken before temodar, which after and what's the necessary time distance between them?
I don't know if it had been discussed here, I couldn't find it in the previous posts.
Has anyone investigated release time of each drug in their coctail and its relation to ingestion time of temodar (e.g. Disulfiram - 8/9 hours before TMZ, is that right)? Which drugs should be taken before temodar, which after and what's the necessary time distance between them?
I don't know if it had been discussed here, I couldn't find it in the previous posts.
Monday, 22 February 2016
Dosage for Cannabis spray/oils
I continue to get different feedback on the dosage for cbd-thc (1-1 ratio) spray or oil. I am currently giving my husband 3 sprays per dose, 5 doses a day. Greg has been taking about 180mg per day since June 1, 2015. This dose was recommended by Dr. Allan Frankel, a former UCLA internist and now a medical marijuana doc in Santa Monica, California (http://www.greenbridgemed.com/). Other sites recommend as much as 700-1000mg of combined cbd and thc. That amount, 700-1000mg seems like a lot and it costs about $1,100 per month vs, $200 a month which is the amount we spend now. I know that money shouldn't be a factor but before we invest in this level of spending I want to make sure it is the right thing to do. Any thoughts?
Anyone going to the UCLA Brain Tumor Conference?
Hi -
Is anyone going to the UCLA conference next month? I'd like to go, but will likely be traveling by myself from Seattle. Has anyone been to it before? Find it worthwhile?
Thanks.
Annie
Is anyone going to the UCLA conference next month? I'd like to go, but will likely be traveling by myself from Seattle. Has anyone been to it before? Find it worthwhile?
Thanks.
Annie
Sunday, 21 February 2016
Events Calendar and Currently Recruiting Trials spreadsheet
I've created a new page called Events Calendar, found at the top of the blog with all the other page tabs.
Also, for those of you that I've shared the Brain Tumor Library with, in folder 0 you'll find a spreadsheet I've created to help organize data on currently recruiting clinical trials for adult gliomas (grades 2-4). I've started off with vaccine and virotherapy trials as a start and will expand from there. Access is open to anyone who requests it.
Also, for those of you that I've shared the Brain Tumor Library with, in folder 0 you'll find a spreadsheet I've created to help organize data on currently recruiting clinical trials for adult gliomas (grades 2-4). I've started off with vaccine and virotherapy trials as a start and will expand from there. Access is open to anyone who requests it.
Supplements... I need to know
My
brother, 34 years old, has a recurrent AA grade III. It looks that
conventional chemo treatment (Temodal for 5 mos and
Temodal+Carboplatin for last 2 months) is not effective so I'm
looking for additional treatments. I have been reading a lot of
articles in favor of supplements and some against them but we don't
have many options. The main question for me is how to find the
optimal dosages or optimal combinations. Another question is
where/what to buy. There are so many companies on the market so it's
really hard to choose among so many labels. So I need your help.
He's
on Depakine/Keppra for seizures and Vitamin D because of very big
deficiency.
- We'd like to try Curcumin. 4g or 8g/daily? Can you recommend some manufacturers by best quality/price ratio with best adsorption? Meriva, Longvida, BCM 95 or C3?
- I've read that Boswellia can be a replacement for dexamethasone. Is it so?
- Dosage for Fish Oil/Omega 3, Selenium. Manufacturers?
- Quercetin? I've read that it works great with Temodal and some other article states that there is no clinical evidence that Quercetin works.
And
the final question for cocktail drinkers is: did you choose
supplements for your cocktail by yourself or did some doctor
recommend it?
Where to buy pure CBD?
I am looking for a way of getting 100 mg / day of pure CBD. Does anyone
know of a recommendable and not too expensive product? (I came across this one
https://www.premiumcbd.co.uk/ but that is really expensive.)
I am aware that the usual recommendation is that CBD ought to be
combined with THC. However, the rationale for my wife to take CBD is
“indirect”: that it works well with Avastin. As Stephen has explained to me,
Avastin can “worsen hypoxia, leading to upregulation of hypoxia-inducible
factor 1 alpha (HIF1a), which helps the tumor survive these conditions.” CBD
can inhibit HIF1a.
So, if anyone has a suggestion for a source / manufacturer of CBD, I
would be very grateful.
Saturday, 20 February 2016
Valganciclovir and bevacizumab for recurrent glioblastoma: A single-institution experience
http://www.ncbi.nlm.nih.gov/pubmed/26893852
I will upload this to the Library. Keep in mind this was only 13 patients.
I will upload this to the Library. Keep in mind this was only 13 patients.
Incase anyone is interested:
http://www.neurooncology.ucla.edu/
The annual UCLA brain tumor conference. No cocktail discussions but looks like other good information.
I will be attending incase anyone once to say hello.
Marc
http://www.neurooncology.ucla.edu/
The annual UCLA brain tumor conference. No cocktail discussions but looks like other good information.
I will be attending incase anyone once to say hello.
Marc
fluoxetine and ondansetron
Has any one here used fluoxetine and ondansetron at the same time? If so has there been any side effects ? As I've read that it can have serious side effects
Thursday, 18 February 2016
TMZ Cycles
Hello All,
A quick question for my fellow GMB battlers, how many cycles of maintenance TMZ did you take or are you taking?
I should be starting my 6th cycle next week (if my platelets recover) of TMZ and Veliparib (trial drug) and my NO mentioned that since the trial ends with the 6th cycle, that we might be ending TMZ as well.
My understanding was that the maintenance period of TMZ was 12 to 18 cycles.
I plan on consulting other NO's for their opinion but I value this groups opinion as well.
Thanks,
Marc
A quick question for my fellow GMB battlers, how many cycles of maintenance TMZ did you take or are you taking?
I should be starting my 6th cycle next week (if my platelets recover) of TMZ and Veliparib (trial drug) and my NO mentioned that since the trial ends with the 6th cycle, that we might be ending TMZ as well.
My understanding was that the maintenance period of TMZ was 12 to 18 cycles.
I plan on consulting other NO's for their opinion but I value this groups opinion as well.
Thanks,
Marc
Unused Supplements
Sadly, my husband's 20 month battle with GBM came to an end in November last year.
I have many supplements - all unopened - to give away to those of you in need. All I ask is that you cover the cost of postage from Brisbane, Australia to you.
See the list below or (if it is not clear), email me: tclees@Hotmail.com and I will send you the list.
Kind regards,
Tracey
Qty | Capsules | Supplement | Brand | Exp | Link |
3 | 90 | Artemisinin | NutriCology | Sep-17 | link |
2 | 30 | Artemix | Wellcare Pharma | Jan- 17 | link |
1 | 90 | Astaxanthin | Green Nutritionals | Mar-17 | link |
4 | 30 | Atorvastatin 80mg | Various | Oct-17 | |
1 | 400g | Basic-Detox | Panaceo Gesundheit | Feb-20 | link |
11 | 100 | Beta-Carotene | Nature's Bounty | Feb- 19 | link |
1 | 120 | Borage | Jarrow Formulas | Oct-16 | link |
10 | 120 | Boswellia | Pure Encapsulations | Feb-18 | link |
1 | 100 | Boswellia | Source Naturals | Feb-19 | link |
1 | 150g | Broccoli Sprout Powder | Super Sprout | Jun-17 | link |
1 | 250 | Butyrex | TE Neesby | Apr-17 | link |
4 | 414g | Cellular Forte | Integrative Therapies | Apr-17 | link |
3 | 60 | Chaga | Planetary Herbals | Apr-19 | link |
1 | 113g | Chlorella Tablets | Sunfood | Jun-16 | link |
3 | 237ml | ConcenTrace Trace Mineral Drops | Trace Minerals | Oct-19 | link |
5 | 60 | Curcumin | Protocol | Mar-18 | link |
3 | 120 | Curcumin C3 Complex with Bioperine | Doctor's Best | Feb- 18 | link |
3 | 60 | Dong Quai Plus | Genesta | Oct-16 | link |
1 | 60 | E-Gems | Carlson | Dec-17 | link |
3 | 100 | Enhanced Super Digestive | Life Extension | May-17 | link |
1 | 100 | Eyebright and Golden Seal | Natures Sunshine | Mar-17 | link |
5 | 120 | Fish Oil 700 | Vital Nutrients | Dec-17 | link |
4 | 10 | Freestyle Optium B-Ketone test strips | Abbott | n/a | link |
1 | 120 | Garlic | Nature's Bounty | Jan-18 | link |
1 | 120 | Genistein Soy Complex | Source Naturals | Dec-18 | link |
2 | 120 | Green Tea Extract | Source Naturals | Dec-18 | link |
2 | 305g | KetoCaNa | KetoSports | link | |
4 | 60 | Lactoferrin | Symbiotics | Aug-16 | link |
1 | 60 | L-Tryptophan | Source Naturals | Dec-18 | link |
1 | 60 | Lycopene | 21 Century | Oct-17 | link |
9 | 60ml | Maitake D Fraction | Mushroom Wisdom | Sep-17 | link |
2 | 60 | Melatonin 5mg | NutriDoc | link | |
11 | 60 | Melatonin 5mg | PhysioLogics | Feb-18 | link |
1 | 90 | Metformin 1000mg | Amneal Phamra | Jun-17 | |
1 | 100 | Metformin 500mg | Sandoz | Feb-18 | |
1 | 60 | Milk Thistle | Thompson's | Oct-17 | link |
12 | 60 | Phyto ADR | Pure Encapsulations | Oct-16 | link |
2 | 240 | Plant Enzymes | Now | Mar-19 | link |
4 | 90 | Pomegranate | NeoCell | Jan-18 | link |
1 | 90 | Probiotic Defense | Now | May-17 | link |
1 | 100 | Propolis 1500 | Now | Aug-17 | link |
12 | 60 | PS-7 Mushroom Extract | Myco Nutri | Jun-18 | link |
6 | 90 | PSK Trammune | Defend Health Naturally | Nov-18 | link |
1 | 60 | Reishi Extract | Life Extension | Dec-16 | link |
1 | 30 | Resveratrol Age Defence | Ethical Nutrients | Jun-16 | link |
1 | 50 | Revital 8 (Resveratol and Green Tea) | Fusion Health | Mar-17 | link |
2 | 75 | Selenium Cruciferate | Ecological Formulas | Mar-17 | link |
4 | 60 | Shark Liver Oil | Amino Acid & Botanical Supply | Jul-17 | link |
1 | 100 | Sodium Selenite | Twinlab | Feb-20 | link |
37 | 5 | 20mg Temodal | Merck | Jul-17 | |
3 | 5 | 100mg Temodal | Meck | Jul-17 | |
1 | 100 | Thiamine Hydrochloride | Betamin Sanofi | Apr-18 | link |
2 | 20ml | Thuja D6 | A. Vogel | Feb-20 | link |
1 | 75 | Thymus | NutriCology | Feb-18 | link |
1 | 60 | Vitamin B3 | Nature's Own | Apr-17 | link |
1 | 250 | Vitamin E | Source Naturals | Oct-18 | link |
1 | 60 | Wild Oregano Oil | Solgar | Apr-18 | link |
Wednesday, 17 February 2016
Tuesday, 16 February 2016
Other Cocktail Trials?
Anyone aware of trials in the works? Also, anyone hear how cusp9 is going? I do a search every week or so but can't really find any leaks.
Grace and peace my friends,
Danny
Monday, 15 February 2016
disulfiram side effects ?
Hi everyone my dad finished his 6weeks of radio plus chemo on the 2nd of feb and a gave him a break from the whole cocktail approach. I've added a few more things to the cocktail aswell and I am starting him on one drug and introducing another 4-5 days after. He started chloroquine phosphate 5 days ago and I added Disulfiram yesterday. Everything seemed good no side effects but today dad's been sick and light headed I know that there is a lot of alcohol in most house hold products but how sensitive is it to alcohol ?
MRI Frequency
Is anyone getting their MRIs more frequently than every 8 weeks and/or regularly using gamma or cyber knife?
One of the support foundations recommended that I get a MRI every 6 weeks (my tumor is currently stable, dx 11/2014). They opined that this makes it easier to catch the tumor while it is small thus lending the tumor management to either gamma or cyber-knife surgery. Having heard stories about how fast the tumor can grow, this strategy appears to make sense to me and could allow for "routine management" of the tumor in a less invasive manner. (I realize a multi-focal or certain tumor locations require additional considerations.)
I'm guessing that there are complications with respect to getting too much radiation (from both the procedure and MRIs), having insurance pay for it, and inconvenience of more MRIs. It seems to me however, that perhaps these are outweighed by the benefits of potentially using gamma/cyber-knife rather than traditional surgery, taking chemotherapy, or scrambling to find an appropriate clinical trial.
Any thoughts?
Mike B
Treatment tip
Dear fellow brain tumor battlers!
I have got a treatment tip that I would like to share with you. It is
perillyl alcohol via nasal inhalation. It has shown good results in phase 1 and
2 trials (198 patients), and it is exceptional in having practically no side
effects; see http://www.ncbi.nlm.nih.gov/m/pubmed/26175929/?i=2&from=perillyl
Note page 1585:
“All patients were only under palliative symptomatic treatment because
they had failed current standard of care for malignant glioma recurrence. For
therapy of these patients, POH [perillyl alcohol] was diluted in mineral water
with pH above 7 (in an attempt to alkalinize the acidity of peritumoral edema)
and was administered in a common nebulizer by intranasal inhalation four times
a day. The initial individual doses were 67 mg qid (268 mg total per day),
which were escalated up to 133 mg (533 mg total). t was noted that adhesion to
the protocol was high (> 95%). At the highest dose, POH occasionally caused
nose soreness and in rare instances nose bleed. After 4 years under continuous,
exclusive POH treatment, 19% of patients still remain in clinical remission,
while drug side effects were almost non-existent. It was concluded that
long-term POH inhalation therapy is a safe and non-invasive strategy with
efficacy against recurrent malignant glioma.”
See also
https://www.mskcc.org/cancer-care/integrative-medicine/herbs/perillyl-alcoh ol
There is only one person entitled to
offer the treatment: Dr. Clovis Olando. He is co-operating with oncologists who
wish to offer the treatment to their patients. Unfortunately, my wife’s
oncologist is overly conservative – as many oncologists are, I am afraid – so she
did not want to co-operate. If this is also the case with your NO, you have
two options:
1: To consult Dr. Olando on a private basis. His email address is:
clovis.orlando@uol.com.br He is
willing to travel.
2: If you cannot afford that, it can easily
be self-administrated. While it is not possible to buy POH in a nose spray /
nebulizer – since it is not approved yet – it is possible to buy POH and fill
it in a nebulizer. There are probably many suppliers. We bought ours from Sigma-Aldrich.
They only sell to companies, however, so it required the kind assistance of our
family doctor. It is probably possible to find suppliers that sell to private persons.
All the best,
Thomas
Saturday, 13 February 2016
Keppra and Temozolomide
Hi Everyone!
I'm new to this blog. I've read many posts and this is a great help to me, as I'm a beginner in the drug coctail treatment.
Our story briefly:
1) My father, 55, was diagnosed with an unknown brain tumor in October 2015 (the biggest dimension 43 mm). Craniotomy was carried out 3 days after the diagnosis. Preliminary histopathology - astrocytoma III, final result - glioblastoma IV.
2) First MRI after the surgery in December, right before chemoradiation, showed still a big tumour. According to the oncologist - radical recurrence. According to another neurosurgeon (we consulted the MR image in another hospital) - first craniotomy improperly done (!!). I'm not sure who's right... the other neurosurgeon, specialized in gliomas, was very convincing.
3) We decided for another surgery (by another surgeon). The resection must have been deeper as afterwards my dad's sight is worse (he sees everything darker, has problems with reading, seeing details etc., however he's getting better, it's been 6.5 weeks since the surgery).
4) Now chemoradiation. First cycle of Temodal during radiation for 42 days on a daily basis.
5) Tumour unmethylated, IDH1 negative. Other genetical tests of a frozen sample in progress.
We are at the very beginning of the drug&supplements treatment. It's very difficult to collect all the prescribed drugs. We're located in Poland. Started like that:
Temodal (150 mg/day);
Depakine (valproic acid) 2x500mg/day- prescribed by the neurosurgeon to prevent seizures;
Keppra (will start tomorrow, 2x500 mg/day)- added in order to sensitize the tumour for TMZ (prescribed by our GP on request, she agreed);
Dexamethasone (2 mg/day);
Proton pump inhibitor (1x/day) - drug called IPP20 in Poland;
"Pheonix tears" with high THC and CBD (rectal application) - 2 ml/day
Curcumin (up to 3000mg/day)
Quercetin
Vitamin C (1000 mg/day)
Sugar-free diet and radical reduction of meat. Working on reduction of gluten.
I have one question and would be grateful if anyone could advise sth:
What would be the best scheme of taking Keppra to sensitize the tumour for TMZ. Does it matter, if the first doze (500mg) is taken with Temodal on an empty stomach or he can take it later, after his daily radiation (with a meal afterwards)?
Should we add Prozac and Disulfiram, apart from Keppra, for a better chance of TMZ working?
Cheers!
Piotr
I'm new to this blog. I've read many posts and this is a great help to me, as I'm a beginner in the drug coctail treatment.
Our story briefly:
1) My father, 55, was diagnosed with an unknown brain tumor in October 2015 (the biggest dimension 43 mm). Craniotomy was carried out 3 days after the diagnosis. Preliminary histopathology - astrocytoma III, final result - glioblastoma IV.
2) First MRI after the surgery in December, right before chemoradiation, showed still a big tumour. According to the oncologist - radical recurrence. According to another neurosurgeon (we consulted the MR image in another hospital) - first craniotomy improperly done (!!). I'm not sure who's right... the other neurosurgeon, specialized in gliomas, was very convincing.
3) We decided for another surgery (by another surgeon). The resection must have been deeper as afterwards my dad's sight is worse (he sees everything darker, has problems with reading, seeing details etc., however he's getting better, it's been 6.5 weeks since the surgery).
4) Now chemoradiation. First cycle of Temodal during radiation for 42 days on a daily basis.
5) Tumour unmethylated, IDH1 negative. Other genetical tests of a frozen sample in progress.
We are at the very beginning of the drug&supplements treatment. It's very difficult to collect all the prescribed drugs. We're located in Poland. Started like that:
Temodal (150 mg/day);
Depakine (valproic acid) 2x500mg/day- prescribed by the neurosurgeon to prevent seizures;
Keppra (will start tomorrow, 2x500 mg/day)- added in order to sensitize the tumour for TMZ (prescribed by our GP on request, she agreed);
Dexamethasone (2 mg/day);
Proton pump inhibitor (1x/day) - drug called IPP20 in Poland;
"Pheonix tears" with high THC and CBD (rectal application) - 2 ml/day
Curcumin (up to 3000mg/day)
Quercetin
Vitamin C (1000 mg/day)
Sugar-free diet and radical reduction of meat. Working on reduction of gluten.
I have one question and would be grateful if anyone could advise sth:
What would be the best scheme of taking Keppra to sensitize the tumour for TMZ. Does it matter, if the first doze (500mg) is taken with Temodal on an empty stomach or he can take it later, after his daily radiation (with a meal afterwards)?
Should we add Prozac and Disulfiram, apart from Keppra, for a better chance of TMZ working?
Cheers!
Piotr
Friday, 12 February 2016
Effect of Disulfiram Administration on Rat Brain Glutathione Metabolism
http://www.ncbi.nlm.nih.gov/pubmed/8142069
This study is not about brain tumors, but it does show that oral administration of disulfiram to rats (12 mg/kg), which would convert to about 125 mg for an average adult using allometric scaling, is sufficient to decrease the brain levels of reduced glutathione (GSH), increase the levels of oxidized glutathione (GSSG), and thereby decrease the ratio of reduced to oxidized glutathione from 122:1 to 12.8:1.
I propose that this could be a particularly effective therapy in IDH1-mutant tumors, which already have lowered baseline levels of NADPH, reduced glutathione (GSH) and impaired antioxidant capacity.
I will add this study to the Library.
A typical anti-alcohol abuse dose for disulfiram is 250 mg daily (500 mg has also been used). Watch out for peripheral neuropathy (pain, tingling, numbness in fingers, toes, etc.).
This study is not about brain tumors, but it does show that oral administration of disulfiram to rats (12 mg/kg), which would convert to about 125 mg for an average adult using allometric scaling, is sufficient to decrease the brain levels of reduced glutathione (GSH), increase the levels of oxidized glutathione (GSSG), and thereby decrease the ratio of reduced to oxidized glutathione from 122:1 to 12.8:1.
I propose that this could be a particularly effective therapy in IDH1-mutant tumors, which already have lowered baseline levels of NADPH, reduced glutathione (GSH) and impaired antioxidant capacity.
I will add this study to the Library.
A typical anti-alcohol abuse dose for disulfiram is 250 mg daily (500 mg has also been used). Watch out for peripheral neuropathy (pain, tingling, numbness in fingers, toes, etc.).
Thursday, 11 February 2016
Avastin alone vs. Avastin & chemo
To those of
you battling with recurrent GBM (or grade 3 tumors): Are you being treated with
Avastin alone or Avastin plus chemo?
My wife is being treated with Avastin +
lomustine (CCNU). Yet I have just seen that a recently completed phase 3 study concludes
that combining Avastin and CCNU does not improve survival. http://www.cancernetwork.com/sno-2015/lomustine-bevacizumab-fails-improve-survival-recurrent-glioblastoma
The prior phase 2 study indicated prolonged PFS for MGMT methylated patients
receiving the combination, but the 9 months overall survival was precisely the same
(67 %) for MGMT methylated patient receiving the combination vs. those
receiving Avastin alone.
The obvious
question is: Is it worthwhile enduring the extra toxicity events that the chemo
causes when it is so questionable if anything is gained by it?
Would it not be
better to stick to Avastin alone (and combine it with DCA, Chloroquine, CBD,
and Honokiol, as recommended by Stepehen)?
Tuesday, 9 February 2016
Drug reaction / seizure ??
Hi guys my mom is a newbie to CUSP9 - too forever for a doc to prescribe anthing
Ps. dR. Fox website for choloroquine (sp?) is a nightmare
Last night.."........
First, she felt dizzy, stared off with her " brain spinning" this kept off and on for a few minutes
Then the horror started. it seemed as if she was not there. So we called 911. She was conscious but was not responding to any paramedic requests such as the ability to squeeze their hand. We asked her 3x to smile and she didn't respond. She just lay there with her eyes open. At the hospital, she had progressive short term memory loss. For the first hour, she kept asking where she was and why she was there. Shortly recalling bits of information and eventually the medication she took before hand.
This was all between 9pm -2am
This was all between 9pm -2am
Today she is tired and sleeping but comprehending. Says it's nothing compared to other seizures she's had before and doesn't believe it's a seizure
At 3pm she took 5 pills of CUSP
At 3pm she took 5 pills of CUSP
Then temador
Then RSO
Went for a long walk ( 2 -3km ?). Felt good. Acted normal
At 7 -730 gave her 1000mg keppra
830 gave extract 2 capsules of broccoli/ sprouts/turmeric
9pm the nightmare started ......
Boom
cT scan ( couldn't find a vain for contrast ) said tumor has no changes ( jan 11th 1.9cm tumor still waiting for MRI date
No bleeding, no stroke
9pm the nightmare started ......
Boom
cT scan ( couldn't find a vain for contrast ) said tumor has no changes ( jan 11th 1.9cm tumor still waiting for MRI date
No bleeding, no stroke
1Celebrex/Celecoxib/200mg -started January 26/20162Ridaura/Auranofin 3mg-started January 26/20163Emend/Aprepitant 80mg- starter January 28/20164 Antabuse/Disulfiram 250 mg-started January 27/20165 minocycline- 50 mg started February 047 Temodar - 75mg - 1 / dayShe is also takesProzac / fluoxetine HLC 20 mgKeppra - 500 mg - 2 X dayMetformin - 250 mg -1 X dayMelatonin. - 20 mg - 1 X day ( stopped)DCA - 500 mg - 2 X day- two weeks on, one week off2- Aspirin - 81 g - 2 X day3- Maitaki fraction 4X - 3 X 8 drops / day.4 Ashwagandha ( Withania Somnifera)- 500 mg 1capsule / day5 Boswellia Extract - 65% Boswellic Acids- 3 X 2 capsules6 HonoPure/ by ecoNugenics 3 X1 / day7 Coriolus Super Strenht ( Coriolus versicolor mushroom 600 mg - 3 X1 per day.8 Ruta Graveolens 6 ch - 3-4 pills - two to three times a day under tongue9Dr Reckeweg S2 ( cal area phosphorica 3X - 2 pills X 2 day
Do you have a different time suggestion to give it to her ?
Do you believe it's a drug reaction ?
AVERT trial at Duke now recruiting
Nivolumab With DC Vaccines for Recurrent Brain Tumors (AVERT)
This is a trial testing
- CMV-targeted dendritic cell vaccine +
- PD-1 antibody (nivolumab)
- a single dose of Td toxoid (tetanus-diptheria) prior to the fourth vaccination
The trial is for first or second recurrence of high grade glioma (grade III or IV), no prior treatment with Avastin (bevacizumab), age 18-80.
Drugs/Supplements Organization
Once a week I put together Greg's vitamins/supplements, pharma both off-label and his psychotropic meds. I work off a 4-page sheet. I also have a separate sheet for his cannabis spray which he takes 5x a day. I try to break out what should be taken with meals and those that can be taken during the course of the day. It is not a perfect system. I know he is not getting the full impact on some of these supplements since some require eating with protein or fat, etc. That's just too much for us to manage right now. My main goal is eating him to eat since I think chemo has really done a number on his taste buds. I use two 7-day systems and two 7-day, am/pm systems. The meds in the fish dish are steroids (4mg), Provigil (100mg 3x a day) and sodium (1000mg 3x a day). All were purchased on Amazon. I had to graduate to a much larger 7-day system when his daily vitamin/supplements continued to grow. For his chemo meds, that's handled separately.
Monday, 8 February 2016
Pill organization
Can't figure out how to reply. Here's my system. I fix up 5 days worth or so at a time. It's easy to throw the quantities in several cups in a row, and see what I'm low on:
Astragalus/Supplements/Ralph Moss blog
On his blog Ralph Moss says that in some study only alcohol extract of Astragalus was beneficial to cancer patients. Bellow link to his blog
http://www.ralphmossblog.com/2011/01/what-really-works-part-one_08.html
http://www.ralphmossblog.com/2011/01/what-really-works-part-one_08.html
Does the apigenin cross the BBB?
Bellow is a study of apigenin and glioblastoma. There is a lot of apigenin in parsley and especially a dried parsley. Will this cross the BBB? Dr. Ralph Moss has some information on apigenin on his blog.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3288342/
http://www.ralphmossblog.com/search?q=apigenin
Any opinions?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3288342/
http://www.ralphmossblog.com/search?q=apigenin
Any opinions?
Drug/supplements organizer
Here is how I organize my husband's meds and supplements. Double container I use for prescriptions meds and multivitamins and the other two containers I use for AM supplements and PM supplements. There is also another container for TMZ days. For bed time meds we just have PSK and melatonin bottle at his nightstand. At this time we don't have lunch time meds as its harder for him to remember to take it so we just keep it simple. I use a big plastic container to keep all supplements in one place and that way its easy to just pull out the container from the kitchen cabinets with everything inside instead of taking individual bottles (I need to find a bigger one now).
Sunday, 7 February 2016
Dexamethasone vs. confusion
My wife is very confused lately - more so than usual. It's been about two weeks after the SoC of radiation and chemotherapy.
We have been trying to wean her of Dexamethasone so she's currently on 4mg in the morning and 2mg at night. But we're worried that her state of confusion is dampening her already dampened spirits.
I'm very wary of dexa - at our first hospital, the surgeon gave her a whopping 64mg a day, or 16 tabs. Her tumor wasn't considered "a time bomb" at the time but two weeks later, we rushed her to the hosptial as the tumor became very, very aggressive. I don't have anything to support this but I'm certain that the dexa had a hand in this as I feel it increased the glucose in her blood resulting in the growth. Our NO says there's little support for this.
Now, our new issue is that she was fine on 4/4 so we dropped her (per the NO) to 4/2 but her confusion has increased dramatically.
I'm trying to counter this is 2400mg of Boswellia (specifically http://www.amazon.com/Boswellia-Serrata-1200-Mg-Capsules/dp/B00C6B17VM) as well as turmeric and celebrex but it doesn't seem to be cutting it.
Questions
- Are my fears of dexa over-blown?
- If they are not, what alternatives do I have to the dexa?
Thanks in advance!
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