Sunday, 28 February 2016

When to take cocktail? And folic acid?

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

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....

Ozone Injection via PICC


Curcumin

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.



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

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.

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.

  1.  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?
  2.  I've read that Boswellia can be a replacement for dexamethasone. Is it so?
  3.  Dosage for Fish Oil/Omega 3, Selenium. Manufacturers?
  4.  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.
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

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

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

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

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.).

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 
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
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
1Celebrex/Celecoxib/200mg -started January 26/2016
2Ridaura/Auranofin 3mg-started January 26/2016
3Emend/Aprepitant 80mg- starter January 28/2016
4 Antabuse/Disulfiram 250 mg-started January 27/2016
5 minocycline- 50 mg started February 04
7 Temodar - 75mg - 1 / day


She is also takes

Prozac / fluoxetine HLC 20 mg
Keppra - 500 mg - 2 X day
Metformin - 250 mg  -1 X day
Melatonin. - 20 mg - 1 X day ( stopped)
DCA - 500 mg - 2 X day- two weeks on, one week off


2- Aspirin - 81 g - 2 X day
3- Maitaki fraction 4X - 3  X 8 drops / day. 
4 Ashwagandha ( Withania    Somnifera)- 500 mg 1capsule / day
5 Boswellia Extract - 65% Boswellic Acids- 3 X 2 capsules 
6 HonoPure/ by ecoNugenics  3 X1 / day
7 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 tongue 
9Dr 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

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?

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
  1. Are my fears of dexa over-blown?
  2. If they are not, what alternatives do I have to the dexa?

Thanks in advance!

My Mum's story so far (GBM - trying cocktail and immunotherapy)

Hi all,

I thought it was time to share my Mums story so far. This blog has been just so helpful and I am so grateful to Stephen and all who contribute to this so thank you.

I will try to keep this as brief as possible and focus on the important and maybe interesting bits for others going through this.

My Mum, Marilyn, aged 66 was diagnosed in July with GBM. Symptoms were; getting lost on her drive home from work (a drive she has done many many times), text messages were getting muddled, trouble feeling stable when walking down stairs and some speech issues such as forgetting the word for things. The first scan showed a very large tumour in her front left temporal region and a very small one further back on the left side near her speech and communication region. She is being treated in the UK where we are from but I live in San Francisco so I am back and forth a bit (trying to not get fired from my job but be home as much as possible to offer her and my Dad support). My brother is a great support too and lives in the UK.

After diagnosis, she had keyhole surgery on the larger tumour which was a success with 99% resected. We decided to leave the smaller tumour alone as there was a risk of her speech worsening and her symptoms were so relieved after her first op. The plan was to try to hold this smaller one in place with chemo and radiation. As she is being treated by the NHS she didn't get any tumour tissue testing as a standard which absolutely boggles my mind! I had to fight hard for it. The results from the pathologist got back to us insisting there was too much necrotic tissue in her tumour to be able to test for anything.

Mum started on a cocktail during radiation mainly of supplements but towards the end of the 6 weeks had added CBD oil and a few repurposed drugs from the Care Oncology Clinic; Metformin and Mebendazole. Celebrex has been impossible to get hold of for us even with two letters of recommendations from two different oncologists to give to our GP. However I am chasing a few more options now so there is still hope here.

After radiation/chemo her symptoms worsened significantly, in particular her sentence forming and some of her movements. We were told this was just a result of the radiation and to be expected so we were hoping she might start to improve again but in mid November things got so bad she was rushed to hospital. She could not talk and her right side movement was significantly impaired. She was given a high dose of steroids (after not being on any after radiation) as they found she had severe cerebral oedema. This was unfortunately caused by the smaller tumour growing significantly since her first operation. It had grown and a new one was forming next to it and very close to Mums motorneruone center.


Thankfully surgery was an option. She ended up having to wait nearly 5 weeks for the surgery as it was a 'really busy time of year'. It was a very long 5 weeks and Mum got back onto a cocktail during some of this and had been finding the CBD oil particularly helpful. She was not keen on taking THC but is very happy to take the CBD and feels brighter after doing so. The surgery happened on Christmas Eve and went as well as possible. The surgeon was a bit amazed/stumped to find so much necrosis, he said it "was all grey" and he could not see any live tissue. Normally there is some necrosis but he was really stunned to find as much as he did and felt that whatever she has been doing she should keep on doing that! I am not sure what to think here as her original tumour was also full of necrotic tissue so it could just be the nature of this GBM. It was interesting hearing how shocked the surgeon was though and how positive he felt that something was causing it to die.

This time around with the surgery we had asked again for tumour tissue testing but had no luck again due to the necrosis. We also decided to pursue immunotherapy at IOZK in Cologne with Stefaan Van Gool. Mum's tumour was frozen and shipped off to Cologne and they seem to think they can still build a successful vaccine with the tissue so that was some good news.

Mum's NO had wanted her to switch to PCV after she progressed during radiation but we felt it was too soon to give up on Temodar for a whole lot of reasons. With the number of scans she has had in the past few months we are able to see that a tiny bit of growth from her original resected tumour has stayed static indicating something is holding that in place. She started on her first month of the high dose Temodar a few weeks ago. Between days 5-10 of the month she will go to Cologne for her treatment.

The first NDV injection was done on Tuesday. They had her on a drip of Selenium, Vitamin C and Newcastle Disease Virus at the same time as having Hyperthermia treatment. She tolerated it well. She went back the next morning for the same again. So far my Mum and Dad have found the clinic to be really pleasant and they have been well looked after. Mum had a slight fever during the night on Wednesday but is good right now. Attached a picture of Mum undergoing the IOZK treatment...



We are adding and adapting Mums cocktail gradually but this is it below for next week. We have Cimetedine and Sildenafil waiting in the wings and are working on getting Celebrex and Minocycline too. We have not added the COCs other prescribed drugs, Doxycycline and Atorvastatin as there is not enough evidence of efficacy with these. We may consider adding DCA as well -especially as it is accessible although I am concerned about the potential side effects and being so far from home so often it is hard to only hand out the instructions and not be there to manage any potential symptoms.

______________________________________________________
First thing in AM         Lanzoprazole                      (x1)        30mg
______________________________________________________
Before Breakfast          Levetiracetum                    (x1)        500mg
                                     Wild Alaskan Fish Oil          (x1)        1125mg
                                     Selenium                             (x1)        200mcg
                                     Broccoli Sprout Extract       (x2)        1000mg

During/After                 Dexamathasone                 (x1)        2mg 
Breakfast                      Metformin                          (x1)        500mg
                                     Zinc                                     (x1)         50mg
                                     Boswellia (Wokvel)             (x1)         333mg
                                     Curcumin (Longvida)           (x2)        1000mg
                                     Ashwaganda                       (x1)        125mg
                                     Coriolus PSK                      (x2)        1200mg
                                     Honokiol (HonoPure)          (x2)         500mg
________________________________________________________
Before Lunch/Mid        Wild Alaskan Fish Oil           (x1)        1125mg
Morning                        CBD oil                                              100mg
                                      Pterostilibine                       (x1)         50mg

During/After                 Vitamin D3                            (x2)         4000IU
Lunch                           Green Tea Extract                (x1)         725mg
                                     Pterostilibine                        (x2)         100mg
                                     Boswellia                             (x1)         333mg
                                     Ashwaganda                        (x1)         125mg
                                     Mebendazole                      (x2)         200mg
 _______________________________________________________
 Before Dinner/Late      Flaxseed oil                         (x1)        300mg
Afternoon                     Curcumin                             (x2)       1000mg

During/After                Levetiracetum                    (x1)        500mg
Dinner                          Metformin                          (x1)        500mg
                                     Milk Thistle                         (x3)        450 mg
                                     Coriolus PSK                      (x2)         1200mg  
                                     Vitamin D3                          (x1)        2500IU
                                     Chloroquine                      (x1)         250mg
                                     Honokiol (HonoPure)         (x2)         500mg

_______________________________________________________
Bedtime                        Melatonin                           (x1)          10mg 


Does anyone know of any reason to not take a very high dose of Vitamin D3 for extended periods?
Whilst supplement shopping today I read the label on the back of one of the Vit D3 5000 IU bottles that said to only take once every other day and to be wary of taking for continued periods. I am not sure what side effects there might be and again I am sure whatever they may be are most likely insignificant compared with the potential benefits in this case.


Has anyone got any good methods for organising supplements? Any recommendations on pill organisers? I noticed Ben Williams uses them in the survivngterminalcancer doco. There are a whole range on Amazon. It makes sense to prepare a weeks worth ahead of time.

I am so grateful for this space to share and discuss. Thanks so much Stephen -I am not sure I can say thank you enough times!

Best wishes to all.

Alison

Edited to add IOZK cost breakdown: