Monday 7 October 2019

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.  
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:
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

3 comments:

  1. Hi Oscar,
    I'm sorry for the situation you find yourself in regarding your son. I sometimes have the confidence to disagree with the oncologist's proposed plan of action in a type of disease I have researched extensively, but unfortunately I know very little about AT/RT, and so I can't agree or disagree with the doctor's suggestion. I'm glad you posted, as there may be readers out there with more knowledge of this type of disease. This probably isn't a satisfactory answer, but in any given situation I would probably follow the doctor's recommendation UNLESS I had a good reason to believe based on research and data that there was a better alternative. In general the aggressiveness of the proposed treatment is in line with the aggressiveness of the disease. I think if they are recommending full brain and spine radiation, they would only do that because of the aggressiveness of the disease.

    There may be some immunotherapy options to look into.
    https://www.ncbi.nlm.nih.gov/pubmed/27421737
    Immunotherapy in atypical teratoid-rhabdoid tumors: Data from a survey of the HGG-Immuno Group.
    The author of this paper, Stefaan van Gool, now works at the IOZK clinic in Germany.
    https://www.iozk.de/en/

    I will send this now, as your decision is time sensitive, and address the cocktail in a separate comment.


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    1. Here is a link to the full paper:
      https://www.researchgate.net/profile/Lars_Adamson/publication/305363624_Immunotherapy_in_atypical_teratoid-rhabdoid_tumors_Data_from_a_survey_of_the_HGG-Immuno_Group/links/5b31f9520f7e9b0df5cba57a/Immunotherapy-in-atypical-teratoid-rhabdoid-tumors-Data-from-a-survey-of-the-HGG-Immuno-Group.pdf

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  2. Oscar I am really sorry to hear about your son. I don't think many of us on this board have experience with your son's disease, but can maybe provide some general help.

    On the coctail I'd say be targetted and not just try everything. Not only is it hard to do, you could also reduce efficacy of something that was working.

    For instance Disulfiram is a tricky one because the potential side effects are serious and even minor mistakes like using mouthwash with alcohol in it can be pretty terrible and even dangerous. Its more in the category of taking chemo, vs adding supplements.

    Also 1:1 CBD:THC may be more tolerable and effective at higher ratios. THC daily mg is often hard to increase due to psychoactive effects, but cbd can often be ramped up to much higher doses.

    On the radiation topic, I hope you are working with a specialist and not just a general oncologist. A neuro-oncologist and a radiation oncologist will have the most info on best approaches. Don't be afraid to get second opinnions. Sounds like you can go to a proton radiation center, in which case they can be very selective of the regions that receive dose and so avoid dose to hopefully at least the forward part of the hippocampus, and amygdala,thalmus,pituitary gland and prefrontal cortex. Also in general they should be able to discuss dose/response curves for different levels of radiation. Also repeat radiation is much more problematic than initial radiation (and often not possible within the high dose initially treated field) and so making the best choice in the beginning is important.

    Lastly, and most often skipped on this blog is to put in time for you/your son/your family to work on 'wellness'. Counseling, meditation, visualization, yoga, etc all can have a major affect not just on quality of life, but also proven effects on survival.

    Take care,
    Bryan

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