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Title : URGENT: my son of 6. Help needed with decision and protocol
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URGENT: my son of 6. Help needed with decision and protocol

Dear friends,

I have a very delicate  and urgent decision to make tomorrow and i would love to hear what you think. I think nobody can understand us better than you.

My son of 6, Dario, is diagnosed with an aggressive brain tumor called AT/RT in the 4th posterior fossa. At the time od diagnosis he had a M1 metastasis consiting of cells found in the spine. After this diagnosis all the spine test were negative (done every month). He had surgery in may 2018 and we followed the sickkids protcol for a year and a few months (6 cycles of chemotherapy and maintenance protocol consisting of tamoxifen)

After 1.3 years he relapsed this last 29 august and he had again surgery with total resection. The tumor came back in the same.

After the relapsed i started to devour all the literature and find these non conventional approaches and researches like Daniel from cancertreatmentresearch.com who are helping us.

We started a off label drugs cocktail that i have pasted bellow.  We are following this religiously. And we are triying to improve it. A pediatric doctor and some other researches are helping us to find dosages etc

The MRI two weeks ago is clean and the CT scan from thursday is clean but since we have not done any chemo or radio after surgery, we are nervous.

Our oncologist at the hospital only recommend at this point doing full brain and spine proton irradiation (54gy in the tumor bed) and 34gy in the spine and rest of the brain.

For a kid of 6 year this is not the best treatment but it is also an aggresive cancer. So most of the standard oncologist and radiologist will recommend this standard treatment. We never did radiation before.

So, my line of thinking is untill now:Let's do focal radiation  only and give him the opportunity to avoid serious side effects of the full brain and spine irradjatiob and if the tumor comes back, we are using the off-label drugs and a second irradiation only to where the tumor if it comes. 

I am still in doubt, my wife too. I do not know i we are risking his life or not. If we do not irradiate the whole brain, there is the risk of dissemination because he already had M1 at diagnosis and after one month he has not received any chemo or radiation. 

I don't want to make you responsible of giving your opinion because we are the ones responsible but i am not sure if the tumor come backs we can fight it with the "off-label drugs". Since it is aggressive and comes very fast, i do not have experience what you could have had in brain tumors or your collegues in this world of non-conventional treatments. There is also metronomic treatments or alisertib for re-ocurrences. 

Please, help me. I will never make you responsible of any suggestion but you have seen many cases already of this type, can you comment what is your view? what will you if it was your son?
I am trying to give him an opportunity to avoid the big side effects of total radiotherapy but at the same time i am not sure if we are risking his life.
We have time and resources to dedicate for him.

This is what we are following now:

===
PROTOCOL

Main drugs used now:

1.  METFORMIN 500mg 1/2 pill after breakfast daily for 2 weeks if tolerated increase to 1 pill after breakfast daily     
2. MEBENDAZOLE 200mg 1 pill after lunch daily

3.  ATORVASTATIN  or sinvastim 10mg 1 pill at bedtime

4.  DOXYCYCLINE 100mg 1 pill after dinner for 30 Days EVERY 3 MONTHS, to start after 3 MONTHS. 

5.  TAGAMET (CIMETIDINE) 200mg 1 pill once daily {PLEASE DO NOT TAKE WITH ANY OTHER MEDICATIONS, VITAMINS, OR SUPPLEMENTS} 

6.  CLARITIN (LORATADINE) 10mg 1 pill once daily

7.  NICLOSAMIDE 500mg 1 pill once daily THREE TIMES WEEK ONLY (we have not started this drug) 

8.  IBUPROFEN 200mg 2x/day after food (PULSE THERAPY which means doing this periodically for 2-3 months at a time with breaks of 1-2 months. We have not started this one)
9, Oral etoposide (we started this one 2 days back)

Drugs that will being considered depending on outcomes and safety of use:

1. Ribavirine. 200 mg. 
2. Disulfiram modulates stemness and metabolism of brain tumor initiating cells in atypical teratoid/rhabdoid tumors https://academic.oup.com/neuro-oncology/article/17/6/810/1113353
3.  6-diazo-5-oxo-L-norleucine. Unbiased metabolic profiling predicts sensitivity of high MYC-expressing atypical teratoid/rhabdoid tumors to glutamine inhibition with 6-diazo-5-oxo-L-norleucine https://clincancerres.aacrjournals.org/content/early/2019/07/12/1078-0432.CCR-19-0189
4. Dasatinib and nilotinib
   differential methylation of a PDGFRB-associated enhancer confers specific sensitivity of group 2 ATRT cells to dasatinib and nilotinib, and suggest that these are promising therapies for this highly lethal ATRT subtype. https://www.cell.com/cancer-cell/pdf/S1535-6108(16)30509-8.pdf https://www.ncbi.nlm.nih.gov/pubmed/27960086
5. Sustained Complete Response to Metronomic Chemotherapy in a Child with Refractory Atypical Teratoid Rhabdoid Tumor: A Case Report https://www.frontiersin.org/articles/10.3389/fphar.2017.00792/full
   Continuous oral celecoxib with alternating metronomic etoposide and cyclophosphamide, in combination with biweekly bevacizumab and monthly intrathecal liposomal cytarabine
6. Inositol tripuorosphosphate. Method of reducing multi-drug resistance

7, Phenylbutyrate to Treat Children With Progressive or Recurrent Brain Tumors https://clinicaltrials.gov/ct2/show/NCT00006450.  

8.https://clincancerres.aacrjournals.org/content/7/10/3047 

9, valganciclovir  A Swedish study used a loading dose, followed by a maintenance dose. The loading dose was 900 mg orally twice a day for three weeks, followed by 900 mg a day. Valcyte tablets come in 450 mg tablets so that would be 2 tablets in the morning and in the evening for 3 weeks and then 2 tablets in the morning thereafter every day
10.chloroquine/mefloquin

11. clemastine

SUPPLEMENTS used now

8.  CURCUMIN 400mg 1 pill 2x/day 

9.  BOSWELLIA 400mg must be a minimum of 3000mg per day (8 pills per day)

10.  VITAMIN D 3000 IU once daily

11.  PROBIOTIC once daily

12.  ASHWAGHANDA 500mg 1 pill 2x/day

13.  MUSHROOM EXTRACT 2x/day 

14.  MILK THISTLE 175mg 1pill once daily

15.  ASTRAGALUS 500mg 1 pill 2x/day [During Radiation Increase to 2 pills 3x/day]

16.  URSOLIC ACID 50mg once daily hay 150

17. CBD-THC. 1:1 ratio. 

Supplements that are being considered:

a) Magnesium gluconate supplement https://www.cancertreatmentsresearch.com/an-anti-cancer-compound-hiding-in-front-of-us-gluconate/

b) Silver solution https://www.cancertreatmentsresearch.com/a-silver-bullet-to-kill-cancer/

c) Canagliflozin https://www.cancertreatmentsresearch.com/glucose-absorption-inhibitors-to-inhibit-tumor-growth/ The purpose of using this one is to lower the amount of glucose absorbed by the tumor

D) Honokiol. Eliminates Glioma/Glioblastoma Stem Cell-Like Cells Via JAK-STAT3 Signaling and Inhibits Tumor Progression by Targeting Epidermal Growth Fac..https://www.ncbi.nlm.nih.gov/pubmed/30587839/

d) Fish oil. 1000 mg (w/ any meal, unless PLT < 125)

E) Artemisia annua 

f) Melatonine, 5b (built gradually)

g) Digestive enzymes (with each meal)

H) Essiac (night)

i) Selenium, 50-75mcg 

Thanks in advance

Óscar

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