Good news from MRI scan. GBM Tumor shrinkage from 4.5cm to 2cm

Happy New Year everyone. I wanted to give a positive news update as it is great motivation when there only seems to be negative news regarding glioblastoma. My dad had his 3 month MRI scan follow up (since the last scan in September) today and it shows tumor shrinkage from 4.5cm (in addition to swelling) down to 2cm and no swelling. 

What was added since the previous MRI scan (September) was starting these drugs in October:

• 16 mg dexamethasone and then slowly reducing to 2mg now; 
• Biweekly IV Bevacizumab - avastin ; 9 rounds completed; 
• 2g daily Valaciclovir - valtrex (1g in the morning, 1g in the night);
• 100mg daily Artemisinin;
• 500mg daily Astragalus. 

I think the Bevacizumab - avastin and Valaciclovir - valtrex really helped.

I want to share his treatment as I know there is no one cocktail list and it can be difficult to know what to take and also where to get the drugs or supplements. We began by taking the list of "A" drugs from the table which Stephen shared with us after I emailed him directly. Stephen also provided a link to the Ben William's and Richard Gerber's cocktail list. Since my dad is unmethylated we tried to follow Richard Gerber's cocktail list as closely as possible. We printed out the BT Cocktail list Stephen shared with us, modified it to the "A" drugs and printed this as my dads list to show his oncologists and GP with the dosage he was taking. We were lucky some friends were able to get chloroquine phosphate, Celebrex and melatonin over the counter in Spain. This meant we could start slowly adding drugs one by one before getting the GP to prescribe these drugs to my dad. His oncologist was happy for my dad to try whatever he wanted once he did the treatment they suggest - he was free to add any supplements or drugs once we provided the oncologist and GP with the cocktail list, dosage, purpose (this info from the cocktail list Stephen shared) and the date we added the drug and only one by one with two weeks apart. For the likes of Valaciclovir - valtrex we named the researchers who carried out the study and the publication and then our GP was happy to prescribe these drugs from our local pharmacy.

We check his drug interactions using drugs.com website. It allows you to enter the list of drugs and says potential side effects or which drug combinations throughout the day to avoid. We also get the pharmacist to make up weekly blister packs and they put his drugs into morning, lunch, evening and night - this service really helps us keep organise. We keep a day example of how the pharmacist previously made up the blister pack and hand that in to the pharmacist the following month so they remember - as even for the pharmacist its alot in the cocktail to remember.

We are attending 2 hospitals because one is a general hospital to deal with his seizures and it is 10 mins drive away and his oncologist/neurologist hospital are 15 mins away from our house - we are very lucky with the excellent healthcare in Ireland and that it is all provided for (consultation, MRI scans, surgery, radiation, chemotherapy, Bevacizumab - Avastin, prescribed cocktail medication, social worker, counselling, hospital stays, blood tests, tumor analysis).

We were taking N-acetylcysteine early on (it is a Glutamate transporter 1 (GLT1)) but we stopped as we read it might enhance the tumor growth - we do not know if it is good or bad to take??? I think the seizure drugs blog glutamate transport?

We also obtained Disulfiram but never added this to our cocktail as we do not know if it interacts with the seizure drugs??

We also were taking Ranitidine (75mg daily) but stopped this after reading about side effects combined with Bevacizumab - avastin. Although my dad never had any issues. 

We are also interested in adding more to the cocktail perhaps similar to the CUSP9rv3 clinical trial cocktail such as ritonavir. We are also continuing to do research on HAART/HIV antriviral treatment as apparently HIV patients in Brazil/Mexico did not get GBM's over a 20 year period. 

My dad needed to take Duclox for constipation during chemo but is fine now.

My dad does not follow a ketogenic diet but we do encourage him to have a vegan diet as much as possible low in sugar. However if he wants to eat biscuits, bread, chocolate etc he does - he loves Latte's and dark mint chocolate. He does not have any alcohol due to the seizure medication.

BACKGROUND:

• My father was diagnosed with Grade 4 GBM after a grand mal seizure 24th Feb 2019. Located in the left temporal lobe, around 3cm.
• He had a successful craniotomy on the 7th of March 2019. About 95% removed, at least all visible tumor was removed.
• He completed the 30 sessions of radiation/310mg TMZ. 17th April 2019 to 30th May 2019
• He then did 3 months of 5/23 400mg TMZ chemo. July-September 
• TMZ was stopped and been doing Avastin every 2nd Monday since 23rd September 2019 - today 13th January 2020 still doing.
• Some notes to point out: he was swimming the evening before he had his 1st seizure. He couldn't finish a pint of guinness that night and had some pins and needles in his right arm before sleep - he had no other symptoms to indicate this tumor before 24th February 2019. He had the seizure in the middle of the night. 7th March Surgery went really well and was chatting away normally 1 hour afterwards. To this day he has never had any pain or headaches. He had no side effects during radiation and chemotherapy apart from the seizure 5 weeks after it finished. 

Side Effects:

• 30th June 2019: About 5 weeks after 30 sessions radiation/chemo and after having daily tingling, we spent the day walking around the countryside for many hours. We had a 2 hour car journey and he was 2 hours late taking his Keppra (at the time he was only on 1g total in the day, 500mg morning and 500mg evening). That night he had 4 multiple seizures. He came through after the 1st seizure but he seemed to have panicked when he saw the paramedics that he went into the 3 other multiple seizures. The hospital induced him into a coma for 24 hours which we were not expecting. His Keppra dosage was increased to 2.5g a day and they added phenytoin 300mg in the morning. They also restarted him in dexamethasone 2 weeks 4mg and then 2 weeks 2mg.
• 4th September 2019: He had been having foot twitching since 30th June every night when sleeping. From the end of August he was starting to mix up people's names and words due to aphasia resulting from the edema. Hospital increased the Keppra to 3g per day, added Clobazam 10mg x 2 and 16mg Dexamethasone daily - which we have been reducing since September until now (18th Jan) where he is on 2mg Dexamethasone. His speech has now returned to 100% and no seizures  after adding Phenytoin, Clobazam. There was alot of swelling/looked like the tumor was very active by MRI and due to MGMT unmethylation the hospital stopped the TMZ and have now been giving him Bevacizumab - Avastin on Mondays every 2 weeks, 9 rounds so far.  Bloods are all normal and within range.
• October 2019: My dad took Zovirax tablets and then switched to Valtrex as it apparently has better bioavailability. For 2 weeks when he started taking this we noticed he broke out in large cystic type spots around his face and neck - it almost looked like his body was trying to get rid of toxins??? These spots went away after about 2 weeks after starting the Acyclovir treatment.

Daily Routine: He carries around Midazolam injections in case he was ever to have a seizure

MORNING:

1. 8.30am: Ensomeprazole 40mg (One tablet a day). Stomach protector for steroid

After Porridge (with seeds):
9am: Following medication all prescribed by GP 

1. Dexamethasone 2mg (One tablet a day). Steroid to reduce swelling
2. Ramipril 5 mg (One tablet per day). ACE inhibitor, Lower Blood Pressure, Prevents accumulation of Tumor associated Macrophages) 
3. Phenytoin - Epanutin 300 mg - (3 x 100 mg tablets all taken at this time. Anti-seizure
4. Clobasam - Frisium 10 mg (twice a day, 10 mg in morning, 10 mg at night) Anti-seizure
5. Levetiracetam - Keppra 500mg x 3 (twice a day, 1.5g in morning, 1.5g at night) Anti-seizure
6. Metformin Hydrochloride 500 mg (twice a day, 500mg in morning, 500mg at night). Diabetes and Immune booster
7. Valaciclovir - Valtrex 500mg x 2 (twice a day, 1g in morning, 1g at night) Anti-viral, HSV, VZV, EBV, CMV. Guanosine binds to cancer cell DNA and converted by viral thymidine kinase and host cell kinases to aciclovir triphosphate (ACV-TP)
8. Chloroquine phosphate - Avloclor 250 mg. (One tablet per day, 155mg active chloroquine base). Malaria. Inhibition of late-stage autophagy
9. Minocyline 100 mg (twice a day, 100mg morning, 100mg evening - one month on and switch one month off to use Mebendazole instead). Targets macrophage/microglia. Anti-seizure
10. Mebendazole Vermox 100 mg (twice a day, 100mg morning, 100mg evening - one month on and switch one month off to use Minocycline instead). 

After omelette (with garlic):

10.00am: Supplements. Mainly obtained from iherb apart from Turkey tail which is difficult to get in Ireland and we get via evitamins.

1. Boswellia NOW 500mg tablet. (1 of 3 tablets per day) Reduces edema
2. ECG (green tea extract) . Now 400 mg. Sensitizer to TMZ by GRP78 inhibition
3. Maitake D Mushroom Wisdom (600 mg tablets – 1 tablet per day). Immune
4. Curcumin. Doctor's Best (1000mg tablets – 1 tablet once per day but give other brands of Curcumin later in the day as this is not Longvida and difficult to swallow) Immune; STAT3 inhibitor
5. Multivitamins. Optimum Nutrition, Opti-Men. (1 tablet once per day)
6. Vitamin D3.  NOW (10,000 IU tablets – 1 tablet once per day). Cell differentiation; Immune
7. Mushroom supplement mix from Fungi Perfecti Host Defense Stamets 7 (Royal Sun Blazei; Cordyceps; lions mane; Maitake; reishi; Chaga; Mesima); Immune
8. Artemisinin. Doctor's Best (100mg tablets – 1 tablet once per day) Malaria and Direct Cytotoxicity, apoptosis

LUNCH:

After snack:

1pm: Medication prescribed by GP 

1. Celecoxib - Celebrex (200mg tablet) Arthritis and COX-2 inhibitor, Immune (PGE2 inhibition),  reduces edema

1pm Supplements:

1. Astragalus NOW (500mg tablet) Immune

TEA: (meal followed by a glass of Kombucha or Kefir)
After snack:

5pm:

1. Omega 3-6-9  Now Foods, 1200 mg - 1 tablet per day) From Borage, Flax Seed & Fish Oils Increased oxidative stress in tumor cells
2. Milk Thistle, Silymarin Now Foods, (300 mg tablet) Immune and liver support
3. Berberine Natural Factors, WellBetX (500 mg tablet).Glucose metabolism and Induces senescence of  cells by down regulating the EGFR-MEK-ERK signalling pathway
4. Boswellia NOW 500mg tablet. (2 of 3 tablets per day) Reduces edema
5. Curcumin. Protocol for Life Balance, Curcumin SLCP Longvida 400 mg and  Advanced Orthomolecular Research (AOR) Curcuviva 400 mg (80 mg curcuminoids and Nordic Naturals Curcumin Gummies Mango 200mg Longvida. Prefers the Nordic Naturals gummies. Immune; STAT3 inhibitor

EVENING:

9pm: Medication prescribed by GP 

1. Clobasam - Frisium 10 mg (twice a day, 10 mg in morning, 10 mg at night) Anti-seizure
2. Levetiracetam - Keppra 500mg x 3 (twice a day, 1.5g in morning, 1.5g at night) Anti-seizure
3. Metformin Hydrochloride 500 mg (twice a day, 500mg in morning, 500mg at night). Diabetes and Immune booster
4. Valaciclovir - Valtrex 500mg x 2 (twice a day, 1g in morning, 1g at night) Anti-viral, HSV, VZV, EBV, CMV. Guanosine binds to cancer cell DNA and converted by viral thymidine kinase and host cell kinases to aciclovir triphosphate (ACV-TP)
5. Atorvastatin 20 mg (1 tablet a day) Manage Cholesterol
6. Minocyline 100 mg (twice a day, 100mg morning, 100mg evening - one month on and switch one month off to use Mebendazole instead). Targets macrophage/microglia. Anti-seizure
7. Mebendazole Vermox 100 mg (twice a day, 100mg morning, 100mg evening - one month on and switch one month off to use Minocycline instead). 

9pm Supplements:

1. Resveratrol Now Foods, 200 mg,
2. Soy Isoflavones with Vitamin B6. Holland and Barrett Contains active daidzin, genistin and other isoflavones, phyto-oestrogens
3. PSK or PSP (Turkey Tail Mushroom/Corilus versicolor/Trametes versicolor) NFH Hot-Water extract Immune 500mg (obtained from Walmart) have backup from evitamins from Mushroom Wisdom. 
4. Probiotics; Garden of Life, Dr. Formulated Probiotics, Mood+ ( 1 tablet once per day); 16 strains  50 Billion CFU¹ (203 mg)
5. Boswellia NOW 500mg tablet. (3 of 3 tablets per day) Reduces edema
6. Spirulina powder mixed in with green juice

NIGHT:

11pm: Medication prescribed by GP

1. Melatonin 20mg; 

Useful links we used:

Ben William's cocktail: https://btcocktails.blogspot.com/2015/08/ben-williams-cocktail-profile.html

Richard Gerber's MGMT unmethylated cocktail: https://btcocktails.blogspot.com/2015/10/rich-cocktail.html

CUSP9rv3 Cocktail list (Neurology consultant DR. Marc-Eric Halatsch) https://clinicaltrials.gov/ct2/show/NCT02770378

Positive correlation between HIV antiviral treatment and low occurrence of glioblastoma https://www.researchgate.net/publication/266011045_Gliomas_and_brain_lymphomas_in_HIV-1AIDS_patients_reflections_from_a_20-year_follow_up_in_Mexico_and_Brazil

https://virtualtrials.com/survive.cfm

https://virtualtrials.com/noteworth.cfm

http://www.anticanceralliance.com/cusp-nd/

https://www.survivingterminalcancer.com/

https://clinicaltrials.gov/ct2/show/NCT02770378

https://www.frontiersin.org/articles/10.3389/fphar.2018.00218/full

https://www.canceractive.com/article/repurposing-old-off-patent-drugs-as-new-and-effective-cancer-treatments

HAART Antivirals? Atorvastatin dosage?

My dad is on valtrex (valaciclovir/valacyclovir) daily and I noticed it is a guanosine analogue. I was wondering if anyone is taking HIV HAART treatment, such as tenofovir as well? It is a adenosine analogue and therefore I would imagine would work well to bind to Cytosine and Valtrex to Thymine in the cancer DNA? I would imagine antiviral drugs are limited if only 1 of 4 potential DNA base analogues is used? I know the CUSP9 protocol is using ritonavir but it is just used by itself - perhaps a cocktail of antivirals need to be used to combine with the cancer DNA?

Also we were wondering about Atorvastatin dosage as he is on 20mg a day but Care Oncology seem to recommend people are on 80mg a day? Do people get side effects on this dosage? Should we increase the dosage?

Background on my dad:

My father was diagnosed with Grade 4 GBM after a grand mal seizure 24th Feb 2019. Located in the left temporal lobe. 

He had a successful craniotomy on the 7th of March 2019

He completed the 30 sessions and then 3 months of 5/23 TMZ chemo. In September 2019, there was alot of swelling/looked like the tumor was very active by MRI and due to MGMT unmethylation the hospital stopped the TMZ and have now been giving him Avastin on Mondays every 2 weeks.  Bloods are all normal and within range.


He was having trouble with speach and twitching in September time but this is now gone and he is back to 100% after adding Phenytoin, Clobazam and Dexamethasone

Daily:

Seizure drugs: 1.5g x 2 Keppra ; Phenytoin; clobazam daily. 
He carries around Midazolam injections in case he was ever to have a seizure but has only had 2 occassions this year.

2 x 2 mg Dexamethasone daily

Experimental Drug Cocktail (Ben Williams):

1g x 2 Valtrex (valaciclovir/valacyclovir); Chloroquine (155mg active ingredient); Celebrex 200mg; metformin 500mg x 2; 20mg Atorvastatin; ramipril; ranitidine 75 mg;  melatonin 20mg; 100mg mebendazole (1 month on/1 month off); 100 mg x 2 minocycline (1 month on/1 month off);

Daily supplements of multivitamin; 16 strain Probiotics; PSK; Maitake D; ; Mushroom supplement mix for brain (lions mane 300mg; bacopa 250 mg; reishi 150 mg; gotu kola 130 mg; ginko 120 mg); curcumin (longvida); vitamin D; ECG; Milk Thistle; Berberine; Boswellia; Resveratrol; Omega 3-6-9; Soy Falvonoids (geinistein); Astragalus; Artemisinin

Cocktail questions, also foot twitching?

My dad aged 59 had a grand mal seizure 25th Feb 2019; operation/debulking 7th March 2019, Radiochemotherapy 30 sessions in May 2019. Completed 2nd round of 5/23 chemo cycle. He is negative for IDH, MGMT.

Overall he has been doing ok with the treatment. The only set back was when he had around 3 to 4 multiple grand mal seizures around 30th June 2019. We had no warning about that seizure and our medical team didn't warn us that he could get seizures from the radiation swelling 4 weeks post radiation (we thought maybe just during radiation treatment). He had no side effects during radiation treatment period itself - we were shocked that it happened - 

Question 1: Seizures post radiation 4 weeks after radiation

I guess it is a "normal" side effect? We thought seizures would be a side effect later on when the treatment might stop working. The hospital put him into an induce coma for 2 days to stop the seizures. He took steroids for about 6 weeks after and has come off the steroids now and has had no further seizures. We are also surprised that nobody ever mentioned to us to have buccal midazolam injection at hand as when we called the ambulance, the paramedics had to call the fire brigade for an advance paramedic to inject IV anti seizure drug. If we had the buccal midazolam this might have prevented the multiple seizures. He now carries the buccal midazolam injections around.

Question 2: Foot twitching post seizure, same side as tumor

His Keppra was 2 x 500mg up until then and now they have increased it to 2.5g per day and added Phenytoin. Since that seizure he has had a foot twitch during the night and a sore pain in his thumb - can be normal effects from the swelling and tumor? The tumor is on the left side and the twitch is on the left side which is unusual? The doctors would expect the tumor to effect the right side.

We stopped doing the cocktail after 30th June with the big seizure then but then continued with Chloroquine and Celebrex a week later. We have since started back doing the cocktail (see below).

Question 3: Celebrex

I read the Brain Tumor Charity do not support taking Celebrex and some articles says it is not good to take, what is the opinion about it now given the new clinical trail data? Also it seems like it can react with Epainutin (Phenytoin) so we give it to him in the evening. - https://www.thebraintumourcharity.org/brain-tumour-diagnosis-treatment/treating-brain-tumours/treatments-licensed-other-illnesses/celecoxib-celebrex/

https://bpspubs.onlinelibrary.wiley.com/doi/full/10.1111/bcp.12785

Question 4: Daily timetable of cocktail

Do people have a daily timetable to avoid interactions between anti-seizure drugs and others? 

Question 5: Disulfiram

We have disulfiram but we have never given it to him as it seems to interact with the Epanutin (Phenytoin). Have people taken this together?

Question 6: Curcumin

He is taking Doctors Best High absorption Curcumin with C3 Complex and Bioperin 1000 mg. This tablet he finds hard to digest because it is very big and solid even using a tablet cutter. Is there a different brand which people recommend which is easier to take?

Question 7: Reishi

He is taking Reishi as part of a multi-mushroom supplement for Brain function called Fungi Perfecti, MycoBotanicals for the Brain. However we read on Sloan Kettering that reishi is not good to take?

https://www.mskcc.org/cancer-care/integrative-medicine/herbs/reishi-mushroom

Question 8: Ranitidine in absence Cimetidine

He is taking Ranitidine as we could not get cimetidine. We asked a friend in Spain to get the cimetidine but they got us cinitaprida normon? It is for treating stomach ulcers but I guess its totally different as it doesn't appear to be a H2 antihistamine. We were not sure if it was any use giving it to my dad? We have not given him the Cinitaprida normon but we give him 75mg Ranitidine a day.

Question 9: Mebendazole

He is taking Mebendazole 100mg daily - i know its well below the dosages a human would need to take compared to the mouse study? Do people take much higher doses? The studies do not seem clear about it but I know it is used in Care Oncology alot? 

Question 10: Antibiotics Doxycycline/Minocycline

Antibiotics – he was only on these when during radiochemo phase but not now…Care oncology seems to recommend doxycycline and a rotation with other antibiotics such as minocycline? Should he start taking this too? How much do people take, do people rotate each month? Surely antibiotics will cancel out the effects of building up the immune system? 

Question 11: Valacyclovir and other antiviral drugs?

Should we look into taking Valacyclovir? (I know there is no right or wrong cocktail). If so, how do people get this, how long do they take it for? We read somewhere that people can get tested for different virus's in their system such as Herpes? Is there a test for CMV? Is there any other herpes/CMV drugs we should take?

Question 12: Amino acid Brain supplements L-tyrosine and N-acetyl cysteine

We had been giving him L-tyrosine and N-acetyl cysteine and we stopped after the seizure. I know Cheryl Broyle mentioned using NAC. I don't know if these 2 compounds have good/bad effects on the brain? For a normal brain they are meant to be good. 

Question 13: Vitamin C IV

I read up on Vitamin C IV and I don't know if we should try that - it doesn't seem clear if it is effective or not and it doesn't mention it could flush out the anti-seizure drugs?? Those studies mention N-acetyl cysteine reverses the benefits of IV Vit C?? 

Question 14: Berberine

Only recently ive seen many people taking berberine. Are many people taking this supplement?

Question 15: Other Repurpose drugs

Interesting article with a few extra repurpose drugs which I have not mentioned above. Not too familar with them and the cocktail?

https://www.canceractive.com/article/repurposing-old-off-patent-drugs-as-new-and-effective-cancer-treatments

https://www.frontiersin.org/articles/10.3389/fphar.2019.00681/full

Prescribed by GB:
Keppra - Anti seizure. he was on 500 mg x 2 day but since the seizure it is now 2.5g per day. 

Epanutin - Phenytoin. Anti seizure..100 mg x 3
Atorvastatin – Cholesterol treatment 20 mg per day
Metformin – diabetic, 500 mg twice a day
Ramipril - To lower blood pressure, 5mg

Melatonin 20 mg

Off-label prescription/non prescription drugs:
- Chloroquine Phosphate, 250 mg/day
- Celebrex (Celecoxib), 200 mg/day

- Mebendazole 100mg - this is the recommended daily dose for normal pinworm treatment but i read people are on more?

- We could not get Tagamet (cimetidine), so we were using Ranitidine, another Histamine H2 receptor (usually used for stomach uclers - repurpose of Cimetidine is immune, anti invasion. We do not know if Ranitidine is a good replacement but apparently cimetidine can interact with Celebrex, but I think Ranitidine has reduce side effects to Tagamet). - we have not restarted Ranitidine yet

Supplements: Majority of these we get from iherb apart from the coriolus versicolor which we order from evitamins.

- Coriolus versicolor extract PSK/PSP (Turkey tail mushroom)
- Maitake-D mushroom extract, 1200mg per day
- Reishi mushroom extract - for immune. We got Fungi Perfecti mycobotanicals for the Brain
- Curcumin High absorption extract 1000mg
- Omega-3-6-9 1200 mg
- Boswellia extract 500 mg – to reduce edema
- Standard multivitamin/multimineral capsules, time-release
- Probiotic (Garden of Life, Dr. Formulated Mood+ 16 strains)
- Vitamin D, 5,000 IU/day
- Selenium (we just used a multi purpose vitamin)
- Soy Extract (we were using Soya Isoflavonoids which I think contains genistein which is meant to be good).
- Resveratrol 200mg
- Green Tea Extract ECGg 400 mg

- Silymarin

Stopped taking - should we take again?

- NAC N-acetyl cysteine– I noticed Cheryl Broyle was taking this but it is not on Stephen’s cocktail list.
- L-Tyrosine 500mg – I did not see this on any cocktail list but it is an amino acid which is meant to help with brain function.

Never started this but should we after the seizure? Can it interfere?:

- Disulfiram and he has not started this. 

Induction of Mitochondrial Dysfunction and Oxidative Damage by Antibiotic Drug Doxycycline Enhances the Responsiveness of Glioblastoma to Chemotherapy.

https://www.ncbi.nlm.nih.gov/pubmed/28842551

Any opinions on this study? Dosage in humans?

Intravenous zoledronic acid for cocktail?

There are many articles on the possible benefits zoledronic acid in the treatment of glioblastoma.
https://www.ncbi.nlm.nih.gov/pubmed/?term=Zoledronic+glioblastoma

For example, MTZ Regimen (2016) suggests using:
oral minocycline 100 mg three times daily, oral telmisartan 80 mg twice daily, and intravenous zoledronic acid 4 mg once every 28 days
https://www.dovepress.com/toward-a-noncytotoxic-glioblastoma-therapy-blocking-mcp-1-with-the-mtz-peer-reviewed-fulltext-article-OTT
https://www.ncbi.nlm.nih.gov/pubmed/27175087

Since many patients with glioblastoma include in their cocktails minocycline and telmisartan (or captopril), may be necessary to think about adding an injection of zoledronic acid as non-toxic supplement, 4mg once every 28 days?

Levi's cocktail update & pretty good MRI at 8 months

Luckily my husband (who is MGMT methylated, wild type and has a multifocal tumor) got a quite promising MRI report today after a slight progression in late August following radiation therapy. We need to wait for the NO's opinion till 12/18 but it's clear for us that this is good news because the report contains words like regression (both in the thalamic and frontobasal areas), reduced T2 signaling, reduced edema. 

The only negative statement mentions increased rCBV at some parts of the frontobasal tumor. Good results were not so surprising since he is doing very well. He basically slept through the 2 months after radiation therapy but now he is is back to normal. His only deficiency is left-side peripheral vision loss due to surgery. 

Since my previous post we made some changes to his cocktail. Thanks to a nice blog member's guidance my husband started to take D,L methadone a month ago. He will reach the therapeutic dose (2 x 35 drops) soon. It didn't have enough time to make a difference yet so I chalk the fairly good MRI results up to the cocktail approach. I hope that the next MRI in late February / early March will be even better thanks to methadone. 

With mebendazole, we try to follow Care Oncology's protocol so after the 3 months course of mebendazole which he we'll complete within days we'll alternate it with minocycline (instead of doxycyclin). Somebody stated on a forum that mebendazole and minocycline do the same job. I suppose mebendazole isn't the strongest part of our cocktail considering its bioavailability and the fact that he takes way less than the dosage used in clinical trials. So maybe it would be wiser to choose minocycline on the long term. What do you think, dear fighters & relatives, should we pick the substitution alternative or should we favour minocycline? If so, which one would be better, 100 mg or 200 mg? I have concerns about putting all our eggs in one basket. Maybe if the current cocktail works we can keep up with it, otherwise what will we have left in case of a progression if we blow all our ammunition now?

Current cocktail:

- TMZ 280 mg (5th cycle completed)

Tried to increase it to 380 mg for one cycle but BP dropped to 40,000 so it turns out that he can tolerate only 280 mg.

Morning, on an empty stomach: 

1,5 g PSK mushroom

250 mg EGCG (500 mg on TMZ days + fresh green tea)

1000 mcg sulforaphane from dried broccoli sprouts (2000 mcg on TMZ days)

2000 mg Fish Oil

250 mg vitamine C

D,L methadone 25 drops 

0.5 liter of beetroot-carrot-apple-orange juice ( I don't really believe that it can help but at least it's delicious.) I used to make fresh pomegranate juice daily but then I read that it can increase the concentration of corticosteroids so we stopped it. 

After breakfast:

Curcumin 1000 mg

Fluoxetine 40 mg

Alfacalcidol 2.5 mcg 

Metformin 500 mg 

After lunch:

mebendazole 100 mg / minocycline 100 mg

methylprednisolone 16 mg (I hope it'll be reduced after the next meeting with the NO) 

cimetidine 2 x 200 mg 

During the afternoon & evening 

cimetidine 1 x 200 mg

silymarin 630 mg (I increase it on TMZ days to 850 mg but just like everybody else I'm just guessing with the dosage)

celebrex 400 mg

metformin 500 mg (1500 mg on TMZ days in total) 

DCA 500 mg x 2 + 500 mg B1, 2 weeks on, 1 week off

This means 15.6 mg/ kg. He was on 500 mg x 3 / 20.4 mg/ kg for several weeks, parallel with his Temodal cycle increased to 380 mg but it caused neuropathy in his hands and feets and balance issues so we decreased DCA to 15.6 mg/ kg and symptoms disappeared. I'm not sure if it was Temodal or DCA because both of them were decreased after these issues. Now, we try DCA without B1. We'll see...

After dinner:

Chloroquine (Delagil) 250 mg (Only every other day since he takes cimetidine.) 

Selenium 200 mcg

cup of tomato juice as Lycopene source

Before bedtime:

D,L methadone 25 drops 

melatonin 20 mg 

PSK 1.5 g

cimetidine 1 x 200 mg

- Omeprazole 40 mg x 2 (2 days before and 2 days after TMZ days) 

Vadym and Tania. Please, help start correctly!

Hello everybody!
Thank you, Stephen, for having added me-)
My name is Tanya, I'm from Ukraine, Kiev. My husband Vadim, 46 years old, has been operated glioblastoma and 28 March 2016. Now he  gets radiotherapy and temozolomide.
Please, help us in the development of a strategy for the further treatment of Vadym.
We have the results of histology and immunohistochemistry:
1.Histology.
this is a very cellular glial neoplasm consisting of pleomorphic, atypical gemistocytic astrocytes which diffusely infiltrate the cerebral cortex and subcortical white matter, forming secondary structures of Scherer. Mitotic figures, including atypical forms, are readily recognized, as well as prevascular lymphocytic infiltrates and foci of microvascular proliferation. In addition, there are large areas of confluent necrosis with early organisation and some trombotic blood vessels.
2.Immunohistochemistry:
ki-67 ( sp6)- positive tumor expression to 15 %
Bcl-2a Ab-1 (Clone 100/D5)- tumor expression weakly positive,
p53 ( clone Sp5) positive expression to 5 %/
And another part of brain (left temple)/
ki-67- positive expression to 5 %
CD 45/T200/LCA Ab-2 ( clone PD7/26/16 +2B11)- positive expression in abscess,
GFAP glial fibrillary Acidic Protein Ab-6(GFAP) positive expression.

Conclusion :
Pleomorfhic glioblastoma ( ki-67- to 15 %) with a plot of abscecc.
Our protocol:
radiation and TMZ 180 mg 1х per day.
1. Metformin 2,5 mg per day (1+0,5+1)
2.Chlorochine 250 mg х 1 per day,
3. Levetiracetam 1g х 2 per day ( he has no seasures),
4. Dexametaxone 2 mg ( we are going to replace it for boswellia)
Supplements:
1 Boswellia serrata 6 caps. per day ( 1500 mg) http://ua.iherb.com/Himalaya-Herbal-Healthcare-Boswellia-60-Veggie-Caps/3689
2. Boswellia serrata 6 caps. per day ( 600 mg) http://ua.iherb.com/Life-Extension-5-Lox-Inhibitor-with-ApresFlex-100-mg-60-Veggie-Caps/40487
3. Curcumin 2400 mg per day http://www.ourkidsasd.com/products/2510%7CEnhansa%20(enhanced%20absorption%20curcumin)-Lee%20Silsby
4. Milk Thistle 150 mg х 3 times per day http://ua.iherb.com/Jarrow-Formulas-Milk-Thistle-150-mg-200-Capsules/127
5.Maitake 3 pills х 2 times per day ( Maitake body powder 3600 mg, Maitake Fruiting Body Extract PD- Fraction 1440 mg ) http://ua.iherb.com/Grifron-Maitake-Mushroom-Wisdom-Maitake-D-Fraction-Pro-4X-120-Veggie-Tabs/17000
6. EGCg 3 capsules x 2 time per day ( 2400 mg) http://ua.iherb.com/Now-Foods-EGCg-Green-Tea-Extract-400-mg-180-Veggie-Caps/11598
7. Iron 1 capsule 25 mg per day http://ua.iherb.com/Solgar-Gentle-Iron-25-mg-180-Veggie-Caps/10625
8. DHA 500 mg per day ( we are going to increase).

My most important question is, what can i add to protocol during radiotherapy?
Are the supplements, my husband takes, permissible with radiotherapy?


I would be wery gratefull for any your comments!
I wish you all good health! Thank you and especially to Stephen!
PS. Excuse me, please, for my english....it is wooden.
Tania.

Ibuprofen and Care Oncology

Hi all,

My Mum was sadly diagnosed with Glioblastoma in July. I have been meaning to post her cocktail here and get involved in this blog, so bare with me, I plan to write a full post this weekend. This blog has been so helpful and Stephens website too so I am keen to start contributing.

I have an update from the COC (Care Oncology Clinic) in London. I went to speak with them yesterday. My Mum is seeing them and they have prescribed the four drugs for her on top of the standard treatment which is great. As I live in San Francisco I was unable to go with my Mum for her first appointment, but as I am over here in the UK for a few weeks I booked an appointment to go and speak with the Doctor there and ask my long list of questions.

One thing that I really wanted to share was that apparently there is a new form of Ibuprofen that is going to become available in the next few months that does not cause stomach irritation. The Doctor said that the COC will be looking at adding this to their list of prescribed medications. They have held off recommending it at the moment as it can cause stomach problems so with this new version they are hoping it will be a great addition to people fighting GBM.

I will let you know if I hear more and if they prescribe it to my Mum in a few months time.

The drugs they prescribe for GBM are Atorvastatin, Metformin, Mebendazole and Doxycycline and they all sound really worthwhile taking. They have been chosen by the COC as they seem to have the least side effects of all the potential complimentary drugs. I really recommend seeing these guys if you are in the UK or contacting them wherever you are in the world.

I will post Mums cocktail soon. She is keen to keep it as streamlined as possible and that is what we are trying right now.

All the best to everyone.

Alison

Minocycline and autophagy

Steven

I was looking over the article you posted regarding minocycline and autophagy.  Are the levels of minocycline discussed in this article clinically achievable?  If they are, then we have another variable in the equation regarding when to use chloroquine.  The other variable being zinc.  If minocycline levels discussed in this article are clinically achievable, then how chloroquine is utilized might need reexamination to optimize the possible benefits of chloroquine, zinc and minocycline.

Update on Minjung's status

Hi everyone,
Hope all of you and your beloved ones are doing well.

Here's an update of my fiance's situation.
Minjung's been very ill for the last few weeks. She had finished radiation about a month ago, but she started to have minor but constant seizures and some problems with body coordination. She's been and still is being treated with steroids but things are just getting worse... and now she is unable to open her eyes (she still can see if we force open her eyelids).
3 days ago, she had another surgery because the doctor thought her shunt wasn't working properly. When she woke up, she could open her eyes and we all thought things were going in the right direction.. until the next day when she went back to how she was before the surgery.
Also, the current anti-seizure med (Keppra) is clearly not working at all.
So we asked the staff to tell the doctor to prescribe valproic acid as her anti-seizure med today. We'll see how the doctor responds to our request...

We want her to start Temodal and cocktail therapy as soon as possible, but every time we bring that up, the doctor keeps saying she's not ready at all for chemotherapy. We're even considering switching to other hospital. My worst fear is that Minjung may not even have a fair chance of battling this disease, which to me was the cocktail approach.



Best,
Hyunsun

Bernadette - Cocktail Profile

Hello All,

When I first joined the Cancer Compass forum, it was very early on (around page 45 or so).  At that time, I wasn't sure how squirrely I would have to be in order to get prescription meds, so I used the pseudonym "Alan" in order to discuss all levels of things.

My name is Kendall, and my now fiance Bernadette was diagnosed with GBM on November 12, 2014 at the age of 26.  She had surgery to remove about 96% of it on November 13, 2014.

Tumor Information:
About the size of a lime
Located in right frontal lobe
IDH mutation (usually mutually exclusive from EGFRvIII mutation, so rather rare)
MGMT methylated
EGFRvIII positive (usually mutually exclusive from IDH mutation, so rather rare)
Giant Cell GBM (maybe around 5% of GBM's are giant cell?)
p53 mutation

Had standard 6 weeks of chemoradiation, and it currently only 5/23 cycles of TMZ.  She weighs about 100 pounds, so take that into consideration when looking at dosages.

We've gone through iterations of her cocktail, and this is what she is currently doing.  I've listed dosages and brands as best as I could.  I've also broken down as to exactly when she takes pills.  Before a meal means it's on an empty stomach.  Before bed also means it's on an empty stomach.  I try to merge this cocktail as seamlessly with her normal life as I can, so to make it easier on her, I take a weekly pill holder (Monday - Sunday), and fill it with a day's worth of pills.  Monday is before breakfast, Tuesday is after breakfast, etc.  She currently does not take anything after lunch (Thursday), so I leave a Zofran in there in case she's feeling nauseous.  I make each batch the night before.  Just my way of keeping things organized so that she doesn't have to bother with things too much.  She knows she needs to take a certain batch of pills at a certain time, and that's all she really has to bother with.

I consider this to be a very fluid cocktail.  We will likely be adding DCA as our next agent, and will be closely following Seth's experience with Macitentan as well.

If you have any questions, please ask!

Kendall