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Stage IV Sarcoma - Protocol adjustments!  

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Siems1111
(@siems1111)
Joined: 10 months ago
Posts: 4
20/09/2020 5:00 pm  

Hi -

I have been dealing with sarcoma for the past year.  I had a localized case in July 2019 and it quickly recurred and spread to the chest wall a mere 3 months post diagnosis.  In each case, I had traditional treatment - surgery for both the initial diagnosis and chest wall recurrence, proton radiation for the initial diagnosis, and chemotherapy (Ifosfamide and Epirubicin) after the chest wall recurrence.  Now, 14 months post diagnosis and 5 months post the end of chemo, I have a singular lung met.  Everyone is convinced it is a met, but at 7mm, it may be too small to biopsy. I'm having a meeting with a thoracic surgeon regarding VATS, but my decisions are ultimately - be alternatively aggressive and remeasure in 6 weeks or remove via VATS.  Either way, I'm looking to fine tune my protocol and would love to hear any thoughts on improvements.  To date, I've been following a more standard protocol (COC + others) and moving foward, I would like to dig deeper into the tumor metabolism and understand how to try and block the relevant pathways.

My original tumor and recurrent chest wall tumor showed the following mutations

  • PIK3R1 (part of PIK3/akt/mTOR) (original tumor)
  • CDKN2A (original tumor)
  • TERT (original tumor)
  • CDKN1A/2B (original tumor)
  • MTAP

Recurrence showed a molecular profile of:

  • CDKN2B underexpression
  • NRG1 overexpression
  • HRAS overexpression

Recurrence also showed PIK3R1, SETD2, CDKN2A / 2B, MTAP, TERT as potentially actionable and biologically relevant.

Here is my current protocol (this includes ALL drugs I'm on, cancer + other meds for non-cancer issues) 
  • Cytomel - 25mg 2x/day for hashimotos, taken on empty stomach
  • Nature Thyroid: 75mg 2x/day for hashimotos taken on empty stomach 
  • Hydroxychloroquine - 300mg total (I tested positive for RA after chemo)
  • Metformin - 500mg 2x/day (1,000mg total); taken with food
  • Doxycycline / Mebendazole: COC protocol alternating 30 days (morning with food)
  • Atorvastatin: 80mg at bedtime
  • Mito SAP (per Dr. McKinney who I consulted with) 2 pills 3x day with food
  • Shi Chan Da Bu Wan (per Dr. McKinney); 2 pills 3x per day with food
  • Shark Liver oil (on temporarily b/c of suppressed WBC, RBC) 3 pills 2x/day (I know this contradicts McKinney, but this is per Dr. Rosenberg)
  • TM (tetrathiomolybdate) - 40mg 1x per day (can't seem to get my WBC high enough for increased dosage)
  • LDN: 4.5mg/day (bedtime)
  • Melatonin: 20mg/day (bedtime)
  • Vitamin D: I give myself vitamin D shots and I do D3+K 10,000iui
  • Turkey Tail: 1,000mg 4x/day
  • Intermittent fasting (16:8), but have been inconsistent with this over the last 4 weeks.
  • I was taking curcumin and quercetin, but dropped due to shark liver oil - clearly a mistake. adding back in.

based on the little research I did, I'm looking at adding:

  • Niclosamide
  • Pyrvinium Pamoate
  • Fenbenzadole
  • Berberine w/ metformin
  • Chemosensitivity test
  • Vit C
  • Ozone Therapy - either via blood or machine ozone (thoughts on approach?)
  • I also saw the post by JG on the blog and will go back to review

Anything else to jumpstart my thinking? I really want to be aggressive over the next 6 weeks!

This topic was modified 1 month ago by Siems1111

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Siems1111
(@siems1111)
Joined: 10 months ago
Posts: 4
01/10/2020 3:20 pm  

Bump! Can anyone help me!


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J
 J
(@j)
Joined: 2 years ago
Posts: 530
01/10/2020 11:42 pm  

Hi Siems1111

You might want to check my blog for ideas on combinations, although not specific for sarcoma.

Best,

 


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J
 J
(@j)
Joined: 2 years ago
Posts: 530
01/10/2020 11:44 pm  

@siems1111

(added for email notification)


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Daniel
(@daniel)
Admin
Joined: 5 years ago
Posts: 917
03/10/2020 12:08 am  

Dear @siems1111

I am sorry for taking longer time to respond. Looking at what you are using, it is clear that you are doing a lot already. However, I mentioned several times in our discussions on this blog that I think Fermentation is key to address in sarcomas.

Your cocktail contains multiple mitochondria inhibitors and very few drugs/supplements with important potential towards affecting fermentation. Therefore, I would consider adding some additional fermentation inhibitors and maybe even removing some mito inhibitors. There is an entire list of Fermentation inhibitors that I listed here https://www.cancertreatmentsresearch.com/drugs-and-supplements-that-block-fermentation-and-help-fight-cancer/  

If you have specific questions please let me know.

Kind regards,

Daniel


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Siems1111
(@siems1111)
Joined: 10 months ago
Posts: 4
03/10/2020 10:44 pm  

@daniel thank you. I’m researching those changes now. I don’t have a dr helping me so I appreciate your responses. To clarify, do I need to add multiple fermentation inhibitors for all the subtypes you’ve identified? GLUT1, HK, etc or do I focus on certain fermentation pathways? I know the mTor/pik pathway is an issue with my cancer. 

I also read on 2DG. You mention you can point people in the right direction there. I will email you for more direction on 2DG in the US. 


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Daniel
(@daniel)
Admin
Joined: 5 years ago
Posts: 917
03/10/2020 10:55 pm  

Hi @siems1111

Access to the 2DG metronomic in US is more challenging. I will anyway think if there is any option.

Regarding your question, in my view we have to address multiple points in fermentation with some drugs or supplements that are more likely to have an effect (or alternatively cycle several). I would for example pick 3 or 4 of them and use a dose that is high enough to possibly induce the desired effects but low enough so that is manageable and sustainable in terms of use over longer period of time.

Kind regards,
Daniel


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Siems1111
(@siems1111)
Joined: 10 months ago
Posts: 4
04/10/2020 5:39 am  

@daniel

After taking the evening to research, here's what I'm leaning towards.  Anything with an * indicates a new addition to protocol. 

  • Cytomel - 25mg 2x/day for hashimotos, taken on empty stomach
  • Induced hypothyroid (Methimazole)
  • Metformin - 500mg 3x/day (1,500mg total); taken with food
  • Doxycycline / Mebendazole: COC protocol alternating 30 days (morning with food)
  • Atorvastatin: 80mg at bedtime
  • *Fenbendazole - 222mg 2x/day
  • TM (tetrathiomolybdate) - once WBC are high enough
  • Hydroxychloroquine - 350mg/day
  • LDN: 4.5mg/day (bedtime)
  • Melatonin: 20mg/day (bedtime)
  • Vitamin D3+K: 10,000iui
  • Turkey Tail: 4g
  • Intermittent fasting (16:8)
  • Carrot/celery juicing
  • *Curcumin - 6g
  • *EGCG - 6g
  • *Quercetin - 5G
  • *Honokiol - 4g
  • *Milk Thistle - 1g
  • *High Dose Vitamin C w/plasma readings to ensure I get to theraputic levels
  • *Asprin - 81mg/day
  • *Resveratrol
  • *ALA
  • Omega 3 fish oils - 4g/day
  • *Sulforaphane
  • *Loratadine - 10mg/day
  • *Cimetidine - 400mg 2x/day

I have ordered my first batch of MCS supplements to help me get moving on this plan. 

Is liposomal curcumin a better way to get the high dosage of curcumin? I'd like to find via IV, but doubt I can find quercetin and curcumin via IV in my area.


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ZdenekSipek
(@zdeneksipek)
Joined: 2 years ago
Posts: 15
04/10/2020 7:40 am  

@siems1111

ALA should be combined with HCA (and Resveratrol - partial blocking of the Pentose Phosphate Pathway in one study). 

Other things to consider:

Adding and NSAID like Celecoxib.

Combining EGCG with Luteolin, also adding Apigenin (parsley, chamomile, supplement).

Adding bioavalability booster (like Bioperine) if not in other supplements.

Adding Ashwagandha, also breathing exercises, positive first person visualisation, meditation, walks in nature...


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Daniel
(@daniel)
Admin
Joined: 5 years ago
Posts: 917
04/10/2020 3:53 pm  

Dear @siems1111

I understand that you have also ordered at MCS Formulas. Thank you so much for your trust and support!

I think EGCG at 6g could be too much for the liver (assuming by 6g you meant EGCG and not Green tea extract that contains a certain amount of EGCG). Typically, the case reports indicating results with EGCG have used 2-4g/day. 

In principle, liposomal should be a better approach. But I think when looking at the cost and number of capsules, I thing 1000mg capsules of Curcumin C3 is still the most suitable way to get a specific amount in the blood. This is why I would always use about 70-90% of the target dose as Curcumin C3 and the rest, any formulation that promises much higher bio-availability. There is a clinic in Europa that very soon will tests various forms of Curcumin and see which one reaches the highest levels of Curcumin in the blood. As soon as I learn about the results I will share here.

Curcumin IV is often available in US. Quercetin IV is not available almost anywhere - there is one drug in Ukraine they use for heart related problems and that is actually Quercetin ready for intravenous administration. However, the drawback related to that is that it contains only 50mg/vial and the rest (about 450mg) are additives (polyvinylpirilidone) that makes it water soluble. My wife did used that but mainly as a ways to address micro circulation prior to other intravenous treatments. In order to achive the antitumor level as previously reported in one study I discussed on teh post I wrote on Quercetin, we woudl need to use more than 10 vials at once which in my vied adds to much excipient in the blood, although is seems to be still in the safe area according to official reports on safety of polyvinylpirilidone.

Kind regards,
Daniel

 

 

 


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