Semyon's mom's profile.

My mother had an operation (in Germany, Frankfurt am Main) - removal of the tumor by 99%, and then - the rapid growth of the tumor to its former size (for 3 weeks)! The doctors were in shock.
(Glioblastoma, MGMT methylated)
10 days after chemoradiotherapy, MRI still showed tumor growth. The doctors decided that TMZ did not work in our case and suggested urgently switching to Avastin and Irinotecan.

Thinking, we decided to use a low dose of Avastin + CCNU.
I also decided to add 5 days of low TMZ after every day of CCNU.

The OncoDeep report showed the likely effect of Sirolimus, Olaparib and Trametinib.
I flew to Delhi (India) and bought at low price LYNPARZA Olaparib (1 bottle of 112 capsules of 50 mg) and MEKINIST Trametinib (1 bottle of 30 2 mg tablets).

Unfortunately, it is very difficult to interpret MRI. 3 doctors who watch my mom's MRI say sometimes the opposite conclusion!

Comments:

1. Suppression of T4 is very slow. We spent 3.5 months to reduce T4 from 12.4 to 3.3pmol / l. Also, T3 has fallen dramatically, although we take synthetic T3. Because of this, drowsiness and lack of appetite.

When suppressing T4, you can not take selenium, since it increases the production of the hormone T4! We started taking selenium and the hormone T4 took off from 3.3 to 5.14! Now with great difficulty again we need to knock it down((

2. For all treatment, my mother lost a lot of weight. From 65 kg (in January) to 52 kg (now). However, I do not see anything that we could refuse.

3. We bought a special meter and ketone strips to check that the mother is ketosis.

4. I ordered Mebendazole chewable tablets from Thailand for 500 mg / tablet. Maybe we will try to take large doses: 2-3 grams per day.

5. We use a higher dose of perillyl alcohol than Dr. Dr. Clóvis Orlando: 30 drops instead of 21. No unpleasant sensations! We plan to increase the dose to 40 drops. Dr. Clóvis Orlando wrote that they use perillic alcohol of 96% from Sigma Aldrich and that the other perillyl alcohol will not have an effect on GBM.

MRI-1: https://drive.google.com/open?id=1tPKrQgjIZzBgefhkknxNlQKbaC04XMI_

MRI-2: https://drive.google.com/open?id=1t3SgxGgJFi19i9qIwc47JucsV6ZCbLFa

MRI-3: https://drive.google.com/open?id=1JbRYk3DCUK87ndeRQK-Q7V7130oObiMV

MRI-4: https://drive.google.com/open?id=1Q6WFd9qtFAd18czkd5ouKYloIVBKuFS1

MRI-5: https://drive.google.com/open?id=1L-O1BgoVMohI7eXxH35qN__rNBDy3hrM

MRI-6: https://drive.google.com/open?id=1xWYd5_UsrAYb-c4wv49DSWTeJEN8Dl_F

MRI-7: https://drive.google.com/open?id=1MCpzZxPnl7eI1iigzJVWrOo2o4s8hKWz

MRI-8: https://drive.google.com/open?id=1De95kb-iZ30X7scIbZkeXxFq4KV5fgdT

11C-methionine PET 17.05.2018:
https://drive.google.com/open?id=18AaVybu5nvBH_cAe5QIfzO-efiwsUfkc

OncoDEEP report: https://drive.google.com/open?id=1A3dophOME6gY1GNdOHWE48wVYJUu_nHc
http://btcocktails.blogspot.ru/2018/02/our-report-oncodeep-what-do-you.html

 

Our cocktail and report "OncoDeep". What do you recommend to pay attention to?

Since the tumor after surgery (removed 99%) increased again in the same size (3.5 x 5 x 5 cm) in 3 weeks and the tumor did not decrease after radiotherapy + TMZ, we probably have a very unusual cocktail for the first line:
- cycle 42 days: Avastin (3mg/kg/week) + CCNU (1 day 75mg/m2) + TMZ (5 days 90mg/m2),
- disulfiram 500mg (+Copper 5mg + DHA) and verapamil 200mg only on the days of TMZ + CCNU administration, and 2 days before and after.  I'm not sure, maybe it's advisable to take Disulfiram every day? Otherwise, disulfiram may not start to influence so quickly?
- every day: cloroquine phosphate 250mg, telmisartan 80mg, alfacalcidol 2mcg, oxaloacetate 100mg,  melatonin 20mg, curcumin longvida 2000mg,  Berberine 1000mg, DHA/EPA 1000mg, PSK / PSP 1800mg, Methimazole + T3, R-lipoic acid + hydroxycitrate + ketogenic diet, omeprazole 20mg + DCA 20mg/kg (10mg/kg/BID) + caffeine (2 cups of coffee and 5 cups of black tea) + vitamin B1 200mg

My mother has been responding well to taking DCA + caffeine for a week in the form of black tea and coffee. However, my mom's pulse increased to 90-95 after sleep or rest. To reduce it, we now take 10 mg of propranolol per day. An increase in the pulse may also be caused by the intake of the hormone T3.

Also I consider the addition of a low dose of naltrexone before bed.
We also ordered perillyl alcohol at www.sigmaaldrich.com and expect it soon.

Today we received a report from OncoDNA. The last 3 months I read and search for any information about glioblastoma, but unfortunately I find it difficult to understand this report. Doctors in Russia do not order such reports at all! Our doctor in Germany said that unfortunately, such reports will not help us in any way.

Maybe you can tell me what to look for in this report? Any comments?

For example, I can not understand, is there overexpression (amplification) of EGFR?
"Damaging TP53" = mutation of TP53? Not understanding this, I can not draw conclusions from this review (http://astrocytomaoptions.com/exploring-strategies-for-tp53-mutated-gliomas/) and other studies.
"Damaging PTEN" = loss or mutation PTEN? An interesting article in this case: http://btcocktails.blogspot.ru/2018/01/parp-inhibitors-for-pten-mutant-cancer.html
Which of the drugs on the list of potential clinical benefits to pay attention to ?

Here is a link to the report itself and some pictures of him:
https://drive.google.com/open?id=1A3dophOME6gY1GNdOHWE48wVYJUu_nHc

 

 

T4 Suppression

Because T4 suppression therapy looks promising for GBM’s and other cancers based on a small observational study, I thought I would post my sons response to this treatment over time.  The study can be found in Stevens Brain Tumor Library, Therapies - human Studies. 

For those not familiar with my sons story, here it is.  Originally diagnosed with a large Oligo 2 in 2007.  It was located in the left parietal region.  Received radiation and TMZ.  There was no evidence of tumor until October 2014 when a GBM was diagnosed after personality changes.  This was treated with TMZ, radiation and Optune.  In Feb 2016 he experienced his first recurrence, three areas in the occipital lobe.  Treated with SRS and TMZ and was started on Nivo.  All 3 areas resolved within two months.  Then in June an area of enhancement showed up in the pons and one month later a recurrence in the occipital lobe and in the area of the 2007 resection cavity.  TMZ and Optune were discontinued.  The small enhancing area in the resection cavity was treated with SRS in an attempt to enhance the possibility of an immune response in conjunction with Nivo.  CCNU and Avastin were recommended.  Concerns over Avastin are the increased migration and invasive nature of GBM’s once exposed to it.  CCNU is myelosuppressive and we are trying to obtain an immune response from Nivo so we are not too excited about that. 

Which brings us to the T4 suppression therapy.  This was started yesterday.  We will see if a response occurs and if not, or if neurologic symptoms become worse, we will continue T4 suppression and add CCNU and Avastin.  The BELOB trial showed a relatively small benefit with CCNU and Avastin, with the exception of IDH-1 mutated tumors where the response was significant.  My son’s tumor is IDH-1 mutated.  At least the original GBM was, and I am told recurrent tumors maintain that mutation.  So maybe CCNU and Avastin will prove significantly beneficial.  For now, we are holding on the CCNU and Avastin.  That could change quickly.

Jeremy has been on a repurposed drug and supplement cocktail throughout his GBM treatment.  Both NO’s he sees have been supportive of the cocktail approach because they believe he is responding better than the typical IDH-1 mutated GBM patient.

I will keep you up to date.  If the T4 suppression approach is effective, it might be worth looking into as an additional treatment for those in our group.  I have contacted Dr. Hercbergs, the primary investigator in the Observational study on T4 suppression.  He provided me with additional information and target FT4 levels if anyone needs this information.

Induced Hypothyrexinemia

I am going to give this concept a run and I was wondering if anyone else out there has tried it.  Right now I am trying to get the drugs and dosages together to get started.  I am reading in Aleck Hercbergs study that he started his patients on 40-50 mg of methemazole and 5 to 6 micrograms of T3.  Dr hercbergs sent me an email saying that I could also use cytomel starting at 12 micrograms/day.  Just curious to know what other people are doing.

I NEED HELP

i just received the news about my fathers latest mri.
3 weeks ago they said it was operable, and we wanted to do dendritic cell therapy but in that hospital they didn´t want to give the tissue.
so we scheduled a new appointment with another hospital my dad got a new mri and now they say its inoperable and it spreaded.
 I AM SO DEVASTATED !! WHAT CAN I DO, IS THERE STILL SOMETHING I CAN DO?
I think i read a while ago about some kind of morphine that causes regression please help me

Thyroid hormones

The thyroid hormone strategy is something that should be more well known.  How many people here have tried this approach?  How long did it take for blood levels of T4 to drop into the therapeutic range as per Hercbergs?

I'll be uploading the most relevant studies to the Brain Tumor Library (in the "Therapies - human studies" folder).  The most recent study is this one:

Medically induced euthyroid hypothyroxinemia may extend survival in compassionate need cancer patients: an observational study

My wifes Cocktail (brain stem, low grade astrocytoma)

Dear All,

Finally I got the time to summarize my wife’s cocktail. I'm a follower of Stephens Astrocytoma option Site from day one.

Before I list the medication that we use right now here is a timeline for her case:

Sep. 2012 -> double vision when she looks to the very far right

Dec. 2012 -> MRI scan -> non-enhancing mass in the brain stem

Feb. 2013 -> light left side weakness, start with strict Ketogenic diet (less than 15g carbs per day)

March 2013 -> open/ extended biopsy -> low grade astrocytoma, IDH1 positive, 3% K67, stronger left side weakness as a consequence of the surgery 

May - July 2013 -> radiotherapy with 54 Gy 

October 2013 -> relaxing or the Ketogenic diet (less than 30-40g carbs per day)

Feb 2014 -> symptoms on with left side weakness for 14 days, MRI shows an enhancement within the old tumor mass -> doctors not sure if progression or necrosis, symptoms gone after 14 days without any treatment. We started a week before the symptoms appeared Longvita Curcumin, and stopped it then.

March 2014 -> Start of Temodar at 5 days on 2 days off non-standard dose dense (Tegwondo Regime, 100mg/m²).

March 2014- September 2014 -> stable scans, no significant changes, enhancing part slightly less intense 

September 2014 -> start of cannabis, vitamin D 

February 2015 -> MRI scan, small but significant reduction of enhancing and non-enhancing part of the tumor. First time that the non-enhancing part is changing in size after radiotherapy

March 2015 -> end of Temodar treatment

March 2015 -> change from Ketogenic to more Logi oriented diet (still less than 40g carbs per day) 

July 2015 -> another great MRI scan, enhancing part is gone, non-enhancing part again a bit smaller

August 2015 -> change from T4 to T3 as my wife has hypothyroidism. No problems with the change, blood counts are already in the therapeutical range as per Hercbergs articles.

November 2015 -> New MRI Scan. No changes in the size, stable scan. No enhancing part anymore. Not sure if the enhancing part was completly gone already in July or with the latest scan. I was not able to see it also in July.

March 2016 -> MRI Scan stable. No contrast enhancing. We are very happy with the result.

October 2016 -> Another stable scan. Forgot to enter the update from July. Still on the same cocktail. T4 supression now over a year without any side effect.

Here is the list of our supplements and medications:

Supplement	Product	Dosis per Day	Start of treatment
Maitake	Nutrisan Maitake D-Fraktion Forte	6	mid. 2014
Probiotic	Nutrisan Probiotische Caps Forte	2	mid. 2014
Pterostilbene	LifeExtension pTeroPure	2	end. 2014
Brokolli	Nutrisan NutriSGS	2	mid. 2014
Metformin	Metformin	2	mid. 2015
Berberine	GlycoX 500	2	end. 2014
Sensoril	Nutrisan Sensoril	2	end. 2014
Vitamine D3	Dekristol 25000	1	end. 2014
Boswellia serrata	H15 Gufic	6	start 2013
ECGC Green Tee	LifeExtension Mega Green Tea Extrakt	2	mid. 2014
Melatonin	MELATONIN 10mg	1	start 2014
Zink	Zink	2	mid. 2014
Canabis Oil	CBD:8%;THC:0,27%	40 µl CBD; 1,35 µl THC	end. 2014
T3	Trijodthyronin	0,025 mg	August 2015

We are considering to start also LDN. Perillyl alcohol looks also promissing, but we don't know where to get it in Europe. Suggestions what we should consider in addition are welcome.

She recovered from all symtoms of the suregery and the tumor very well and can live a normal live. We hope that the positiv trend of the last MRIs will continue and that something from our cocktail list is effective.