Cocktail for Yara’s father / help with drug side effects / 30% PD-l1 expression

Hello my dear friends and partners!

I had many doubts and I still have them despite of reading much.
And I decided to ask for your help at least.

My father had surgery 4 month ago. Chemoradiation finished 1 month ago. Left side of brain was damaged. He has Glioblastoma.

He has problems with speech and memory now.
That is why it is too hard to establish the cause of some uncomfortable and bad feelings after taking medicines and CAMs… He can not describe it correctly and can not remember when it was started for example…

---------He has no mgmt/idh1/braf/msi
---------He has 30% PD-l1 expression.
---------MRI shows continued growth (mono TMZ was not effective).

This month we started:
avastin+TMZ (5+23, 400 mg)

It is risky because TMZ did not worked well before. But I found it can do other work: reduce PD-l1 expression. And decided to use PSP(PSK) Oriveda together (6 pills =5 days with TMZ, 2 pills other days).

!) MAIN QUESTION: is this mechanism can work or not?
https://www.ncbi.nlm.nih.gov/pubmed/30709339

!) SECOND QUESTION IS: he is getting shakes. What can it be?  (inside based like fever). But temperature is ok. Blood pressure is pretty normal. Pulse is ok.
Problem is – he can not remember when it was started (may be after avastin). It was more than 1 time. He is hiding his condition may be…
And he sleeps much.

These supplements was added (after radiation/before or together with new chemo):
avastin (1 in 2 weeks) +TMZ (5/23)
++++++ melatonin 20mg only 5 days (or need to use all time?)

---------1) alpha lipoic acid (2x300=600)
---------2) curcubrain (1x400=400)
---------3) PSP(PSK) Oriveda (2x350 = 700  or 6 at TMZ days)
---------4) Carvedilol for pulse (1/2)
---------5) started to change carbamazepine (200mg) to keppra (250mg) – TOGETHER 1 week. Then more keppra less carb.

PS – keppra for unmethylated MGMT (still risk if TMZ not working)

Help me to connect his fever/shake with suppliments.
I can guess 1) it is avastin 2) keppra together carbamazepine 3) may be PSK/PSP… But may be you know bwtter?

Also he is taking (from the beginning)

---------metformin (1500)
---------Boswellia (2000)
---------D3 (4000)
---------Omega3 (1500)
---------allopurinol
---------Losartan
---------Nifedipine
---------Aspirine low dose

He has diabetes 2 type/hypertonia/


-----------What can I add or remove? (may be malatonin all days not only 5)? may be lower dose TMZ/ methronomic or replace TMZ with Irinotecan? (to not risk with combinations).
------------Is my combinations effective (TMZ+melatonin+PSP+keppra) with our mutations? (add/remove?)
------------What can be the reason of weakness and shake/fever?
------------Do you have link for Japan protocols (psk/psp)?
Thank you!

PSK and curcumin source in Europe

Dear All,

probably the subject has been discussed many times, but could you please recommend a source of  PSK and curcumin (also other coctail supplements) available in Europe? I live in Poland.

For PSK, besides Oriveda, I found  https://www.mycomedica.cz/ They explain that the products are sold as "veterinary" due to absurd EU regulations, but they are apparently available across the country, so I suppose that the quality is decent.

As for Curcumin Longvida, I found only

https://www.amazon.de/Longvida-Hochdosiert-Curcuma-Bioverf%C3%BCgbarkeit-Monatspackung/dp/B01NCTQFL8/ref=sr_1_1?ie=UTF8&qid=1526164318&sr=8-1&keywords=curcumin+longvida

https://www.amazon.de/Curcumin-LongvidaTM-500mg-Kapseln-Nutrivene/dp/B003D0A8Q0/ref=sr_1_4?ie=UTF8&qid=1526164362&sr=8-4&keywords=curcumin+longvida&dpID=41nYzvUsCZL&preST=_SY300_QL70_&dpSrc=srch

both of which are rather expensive,  and also

https://pl.iherb.com/pr/Now-Foods-CurcuBrain-Cognitive-Support-400-mg-50-Veg-Capsules/57292

However, my primary concern is quality and safety of these products. Would you please recommend other sellers or product in this group?

Many thanks.

Stefan

Looking for help with our cocktail

Hi everyone,
I'm new to this blog and would love to get some advice. My dad was diagnosed in December 2015 with a glioblastoma. Unfortunately it's inoperable because of it's location (corpus callosum). I've just read Ben William's book and I think it's very sensible to try the cocktail approach. He finished radiation plus Temodal and is now in his 5th cycle of Temodal. After the 6th cycle he'll be switched to metronomic Temodal. He also takes:
- dexamethadone 4mg/day
- D-L-methadone 1,75ml/2x day
- Heparine injections because of a thrombosis
- Keppra 500mg/2x day
He is also using Optune TTF. But there's more that we want to do. I'm very interested in DCA but worried if it might interact with the methadone. From what I've read online, he should start on a low dose and without caffeine as brain tumor patients can't seem to tolerate a higher dose. Do you think that we should give it a try? I think it's pretty hard to get...
Additionally we're considering the following:
- PSK
- Melatonin plus Aloe Vera (again I'm worried because of the methadone as it makes him really tired)
- Fish oil (Omega 3)
-CoQ10
It would be so helpful for us if you could give u your advice!
Thank you so much
Steffi

Medicinal Mushrooms

Hello everyone!

I currently have my husband taking three different kinds of medicinal mushrooms: Turkey Tail PSK, Maitake D fraction, and Reishi.  Originally I started him out on pills, but between all the other supplements and medications, the mere sight of his pills makes him want to gag.  He seemed to really detest the mushrooms out of them all, so I switched to extracts in a smoothie.  I have been able to get away with that for a few weeks until recently.  He swears he can taste them.  His taste for food has definitely changed these past few weeks of treatment (he is in week 5 of 6 of radiation/TMZ).  Normally never a picky eater, now he has developed extreme distaste for foods he normally loved.  So my question to you all is: If I had to give up one or two of the mushrooms, which would you remove?  Or perhaps you have another suggestion for disguising them that works particularly well for the pills you can't stand?  I hate to give them up.  I'm doing everything I can think of so far to keep his immune system healthy.  His blood work has been good each week despite the fact that I refused to give him the antibiotic his oncology team prescribed and I can't help but think that the mushrooms play a role in that.

RSO and Turkey Tail

Has anyone tried RSO or Turkey Tail?

Advice on MGMT unmethylated tumor

Hi,

My father (67 years) was recently diagnosed with GBM in the cerebellum after a sub-total resection. The neurosurgeon said they were able to remove almost all of the tumor mass except for some minor residue.

There were two tumors, one in the middle of the cerebellum (vermis area) and one in the left hemisphere.

The result from the histopathology says:
* High staining of Ki67 marker.
* EGFR positive staining (but doesn't say how much nor whether EGFRvIII mutated or not)
* GFAP positive staining
* Vimentin positive staining
* Mainly cytoplasmic staining of MAP II.
* No staining of IDH1 R132H mutation.
* Only few cells show staining of p53 and NSE.
* No loss of 1p36 or 19q13.
* MGMT unmethylated (9% methylation as measured with pyro sequencing)

Father has just finished 6 weeks of radio+TMZ therapy and we're scheduled to meet the oncologist on Thursday to plan the next step. I recon she will order the standard 5/23 schedule TMZ chemotherapy per the Stupp protocol.

I have tried to read up on GBM and the treatment options available. However if I understand correctly, my father's unmethylated MGMT means the 5/23 TMZ schedule is likely not effective, but maybe a metronomic TMZ schedule would be.

I have put together a cocktail of supplements:
* Curcumin (Longvida) 1000 mg/day
* Zinc 30 mg/day
* Vitamin D3 5000 IU/day
* Silibinin 800 mg/day
* Berberine 1000 mg/day
* Garlic (AGE extract) 600 mg/day
* Lycopene 20 mg/day
* Selenium (as L-selenomethionine) 200 mcg/day

I'm also looking at adding PSK/PSP as well as Pterostilbene, but haven't yet found a good supplier that delivers to Sweden.

I'm thankful to any input or advice you can give me on how to proceed.

A few questions/thoughts:

1. Would you add or remove anything from the supplement cocktail, or change the dosage?
I read that some supplements could have both negative or positive effect depending on the dosage, i.e. Quercetin. Is there a list somewhere on known/suspected supplements to avoid?

2. My father is reluctant to do anything outside of the doctor's recommendation, so I have to try to keep the supplement cocktail as simple as possible. If I understand correctly curcumin and vitamin D are considered to be two of the most promising supplements. If I have to prioritize, which of the supplements should I keep (or exchange for something else)?

3. I've noticed that many of the supplement cocktails contain three different mushrooms - Reishi, Maitake, Corioulus versicolor. Are the mushrooms basically the same (i.e. source of PSK/PSP) or do they contain completely different agents?

4. When meeting the oncologist on Thursday, should I press for some alternative to the 5/23 TMZ schedule? I.e. addition of Keppra or some other MGMT "sensitizing" drugs or should I try to press for a metronomic TMZ schedule (or both)?

5. Should I try to press for additional meds (i.e Celebrex or others) when meeting the onc? Which ones would be most important?

6. Does the pathology report give any additional useful information to help treat this or meds that I should press for/supplements to add? I'm not able to make much out of it except for the MGMT status.

7. Should I ask for any additional (selective) gene testing done on the tumor sample? If I understand the pathological report correctly, the sample is a paraffin fixed type (not frozen) so that makes it inelligible for immunovaccine samples.

8. Anything else I should think of or that you would do/recommend? As we live in Sweden, the possibility of entering trials may be limited, but I'll nevertheless ask the onc about Optune etc.

Thanks,
Peter

Quick question: PSK and PSP pure extract sources

Hi all,
Need your recommendation for best quality PSK and PSP mushroom extract vendors and what/how should I procure it. thx

Clomipramine ?

All -

I hope this finds you well.  Dad is hanging in there.  Not doing great, but not significantly declined so we're happy.

I came across a Facebook post with MRIS showing a sizable tumor shrink.  She says they follow the ketogenic diet and a number of supplements, as well as clomipramine.  I searched here and don't see anything except one post mentioning not to take clomipramine while on boswelia, but that's it.

Does anyone here take it or have thoughts on its use for GBM?  I'm very unfamiliar with it.

Thanks as always.
Annie

Coriolus Super Strength vs Coriolus PSP

Can anyone tell me if it makes any difference to use coriolus PSP instead of coriolus super strength? The price difference is double on the mushroom website and the strength difference is only 200mg per capsule.

where to source PSK

Does anybody know where I can purchase PSK? I purchase PSP from Mushroom Science but can't find PSK anywhere

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

Cocktail Profile for Jeremy (Mikes son)

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

Tumor specifics:  IDH1 mutant.  P53 mutant.

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

	Morning		Evening
Artemisinin  100 mg  Caps   5 days on 5 off	2
Artesunate 50 mg caps   5 days on 5 off	3
Artemether   40  mg caps  5 days on 5 off			2
Fish oil with High EPA/DHA	2		2
DCA  ~17 mg/kg/day  wt is 82 kg	700 mg		700 mg
Longvida Curcumin	6		6
Lycopene 10 mg	1
Melatonin 20 mg			1
Super Coriolus	3		3
Maitake D Fraction	3		3
Berberine  500 mg / capsule	2		2
Vitamin D 10,000 IU capsules	2
Ultra Soy Extract	1
Selenium  200 mcg	1
Milk Thistle   300 mg/capsule	2		2
Thiamin  250 mg			1
Pterostilbene	3		2
Benfotiamine	1
EGCG    (take on days with temodar)			4
Zinc	50 mg
PRESCRIPTION MEDS
Temodar
Vimpat
Tagamet  (200 mg tablets)	2		2
Metformin  (1000 mg tablets)	1		1
Celebrex      200 mg tablets	2		1
Sertraline (Zoloft)   50 mg	1
Minocycline  (100 mg tablets)	1		1
Chloroquine Phosphate    250 mg tablets)	1
Disurfiram (takes days you are on Temodar)