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The perfect maintenance protocol for soft tissue Sarcoma


JulienAch
(@julienach)
Joined: 2 years ago
Posts: 17
Topic starter  

Dear All, 

I've been following this blog and the forum for some time ; It's great value ; thanks to all ; I've already exchange with Daniel who has been really helpful ; This is My wife's case : 

 

After 3 month of explained cervical/back head pain , we finally got an MRI in July this year which showed a 4cm mass in the right posterior fossa after 3 month of intra-cranial. She got a near-total resection in July 8th ; Surgeon left a small part of the tumoral tissue next to the sinus as the region was very vascularized; Told us at that time it a probably a secondary tumor.

Lab returned with a diagnosis of  Who grade III hemangiopericytoma/solitary fibrous tumor with : 

-Celulary dense tumoral tissues

-Firm atypias

-Mitotic activity of 15 mitosis/10 fields x400

-One small necrosis area

-Absence of dediferenciation

-Expression of stat 6 and CD34

-Mib1 of 15% in the more active areas

Post op scan/MRI was clean ; Full body pet-scan showed no suspicion of spreading.

She had in october 6weeks of radiation (58.4gy)

Its the kind of disease that come back virtualy everytime, and often metastasis ; It has a pattern close to soft tissue sarcoma which belong to the same familly ; She has a grade 3 highly mitotic(its grade 3 from 3 mitosis/10 field) and posterior fossa is not a good pronostic ; Official strategy is not doing anything.

I just can't wait and do nothing so I start digging after surgery ;We've been together for 12 years and have a 4 years old daughter. I'm not a scientist and new nothing about cancer 5 month ago.

My inch is that preventing tumor from  reoccuring is a totally unexploited strategy  by mainstream medecine; after 1st treatment and NED status, tumor are 99%KO and it should be possible to keep it that way rather than let the tumor recover and grow back ; While taking toxic chemo/radiation as maintenance is totaly not an option, I guess that many non toxic approach that have been discussed here can possibly keep a cancer in a dormant state.

I really like your discussion about metronomic chemo that make me think that targeting cancer week points continuously is probably better than, being very agressive/dont do nothing/being agressive again and deal with the damage/and probably the mutation induced by the agressive treatments. Pharmaceutical companies are looking for quick/objective/measurable results that are needed to market a product ; My limited knowledge about cancer make me think we could not be the good strategy.

My Wife's tumor is a vascular tumor and very likely rely on angiogenesis to grow (Votrient is the only approved med for HPC); There is whole new concept called angioprevention that I guess could be used for my wife maintenance plan ; What compound could be used ?

Also, I think that HPC are gluco dependant tumor(glucose level inside the tumor is a diferenciation criterium from meningiomas and tumor growth strongly increase lactate level ) ; My wife has been doing keto diet since after surgery ; Original plan was to do it just during radiation but she feels so well on it that she want to keep that way. Is blocking glycolisis would  a good strategy ?

 

I've also followed very closely the Joe tippens facebook group and started to make a simple data base on the success story and particularly on sarcomas ; I spent hours on this group and while some stories are trully intriguing, there is just no way to know if people benefits from standard treatment and got  lucky or if FBZ works in some ways ; Even Joe Tippens has statistically 2% chance to get NED with keytruda alone(not sure about the duration of the response which is now pretty long ; I talked with him a week ago and he feels perfect).

There is also some initiative that tend to organise results people are having in standardized way from repurposed med/suplements based strategy ; In my opinion there is an urgent need to do that ; Otherwise will have to wait for proper clinical trials that could take years or even never happens due to lack of financial incentives.

Thanks a lot for reading and sorry for my erratic english

 

Julien(from France)


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Shanti
(@shanti)
Joined: 4 years ago
Posts: 56
 

Hi Julien,

I am sorry to hear about your wife. I will share some of my thoughts and I am sure others will add to them.  You mention that the tumor is highly angiogenic and that she is in NED (with a high probability of recurrence). This makes me think of Tetrathiomolybdate (TM) which you can read about here: https://www.cancertreatmentsresearch.com/tetrathiomolybdate-tm/ .  It has been studied in metastatic breast cancer patients who are currently in NED with very good results: https://cancerres.aacrjournals.org/content/78/4_Supplement/P1-10-02 . The basic idea is that the TM depletes copper which is needed for VEGF and blood vessel formation.   The tricky part would be getting it in your country, here in the US we can get it from a compounding pharmacy.  Curcumin and Green tea are also VEGF inhibitors.  TM can be used with other supplements and off label meds, so in addition, you could put together a plan that puts metabolic pressure on the cancer from other directions.  I am actually heading out the door, but will contribute more tomorrow or saturday.

My best to you and your wife,

Shanti


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JulienAch
(@julienach)
Joined: 2 years ago
Posts: 17
Topic starter  

Hi Shanti, 

Thank you for your answer ; I've reserching a lot and have a milion of question. I looked at TM which sound interesting indeed ; Its a pity there is no more clinical datas about it ; Its so disapointing that  despite of the good results, the research on a lot of promising approach is so slow...As you mentionned it, I could find this drug available here in France.

I've been following the whole fenbendazole story for 3/4month and probably read every post of the FB group since then. There is a lot of pretty unusual stories but most of people also take SOC treatment so its quite difficult to know what its working ; Nevertheless, I would be amazed if this drugs had no effect, there is too numerous cases where, even with SOC, chance to get a full response was about 1-10%. 

However, there has been recently some publications mainly brought by Jane MacLelland basicly explaining that the autophagy induced by FBZ could explain why it doesnt' work for some, even fuel the tumor.She advise to take autophagy inhibitor like Chloroquine to block this pathway. There is still a debate about weather autophagy promotes or prevent tumor growth, but I understand that its probably phase dependant(good to prevent initiation an bad when the tumor is well established).I also understand that Autophagy could be a tumor mechanism to escape energy stress(exactly what we are trying to do with keto).

Its a bit confusing, what do guys think about it ? I would like to be sure about it and the last thing I want to do is helping the tumor to recover ; 

Considering that the risk profile was low we decided a month ago to put my wife on flubendazole(same microtubule/glucose inhbitor/P53 induction action than FBZ but with better BBB penetration).

She is also on curcumin, melatonin, berberin, sylibin, green tea extract and eat a lot of everything that has shown to inhibit angiogenesis.

We just decided to stop keto and go very low carbs cycled with intermitent fasting(probably every 3/4 month) and go back on keto in 6 month.

We are totally in the dark since there is no marker for this cancer ; I recently saw your discussions about lactate ; Do you think it could be usefull to track tumor progression ? 

Best

 

Julien


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johan
(@j)
Joined: 3 years ago
Posts: 638
 

Hi Julien,

Lifestyle at this juncture is probably paramount. The best quality food and water, avoiding toxins as much as possible, moderate exercise, a zen approach to life. In the diet, I'd include foods that kill stem cells, which in fact you're already doing:  6-Gingerol(Ginger), Epigallocatechin-3-gallate(Green Tea), Curcumin(Turmeric), Lycopene(Tomato), β-Carotene(Carrot), Delphinidin(Berries), Baicalein(Chinese Skullcap), Isothiocyanates(Cruciferous vegetables), Linalool (Basil, Grapes), Parthenolide(Feverfew), Perylill alcohol( Mint, Cherry, Lavender), Ursolic acid(Thyme, basil, oregano), Withaferin A (ashwagandha), Resveratrol(Grapes, plums, berries), Silibinin(Milk Thistle), Quercetin(Capers, onion), Vitamin D3(Fish, egg yolk, cod liver oil), Piperine(Black pepper), Guggulsterone (Myrrh Gum).

Foodstuffs that have anti-angiogenic properties: Caffeine, Theobromine( https://www.ncbi.nlm.nih.gov/pubmed/9468592, https://nutritiondata.self.com/foods-000132000000000000000-1.html ) Ashwagandha.

Halting the spread of cancer is vital. In this area, I like the work of Dr. Rath(Strengthening of collagen and connective tissue):

https://www.drrathresearch.org/dr-rath/115-metastasis

Dr. Thomas Cowan MD, in his new book "Cancer and the New Biology of Water" also addresses this, albeit in a different way.

Best Regards,

Johan

 

 


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JulienAch
(@julienach)
Joined: 2 years ago
Posts: 17
Topic starter  

Thanks Johan for your answer ; 

We are working hard on the life style approach ; Interestingly , the compound that target cancer steam cells also have shown some anti angiogenesis effects ; Reservatrol and curcumin are probably the most interesting with a lot of in vitro research ; The big problem is bioavailability(less than 1% on plasma after ingestion in mice) ; Potentially the best form is micronised trans restervatrol ; We'll try that ; I also like the approach of Dr Wiliam Lee who basicly says that its possible to have therapeutic effect just by absorbing certain food in reasonable quantity and that there is potentially a lot of synergic effect.

https://www.youtube.com/watch?v=OjkzfeJz66o&t=866s

Just have a quick look on your link about Dr Rath and it seems that his approach is similar ; Is trying to get synergia from differents natural compound ; As its impossible to know which stuff will work on a specific cancer from mice or in vitro test, my strategy is to eat a maximum of high quality food with contain proven anti tumoral molecules. Seems easy but its not, certain variety of plants holds much more potential than an other variety of the same plant so I need to dig a lot to find the best ones.

I'm convinced this approach is essential but unfortunaly it will probably not be enough ; My wife's tumor is a potential beast and she doenst have good pronostic factor(high mitotic activity : grade 3 is from 5 mitosis/field, she is 15/ necrosis/ sub total resection/ subtentorial location) ; It's very scary to go into the statistic for that. I think we need to be agressive just as if it was an active cancer.

What should we target to try to keep it dormant ? There is very few datas on this pathology but my intuition is its a gluco-avid cancer ; Is metformin a worthy try ? 2DG ? any combination ?

What should we do regarding antioxydant strategy ? A lot of supplement are helping in that matter but I understand that too much can also help the beast. I just bought tocotrienols/tocopherols for its angiogenesis potential but Im still hesitant.

I'm also concerned about the use of Flubendazole regarding its autophagy induction potential ; What are your opinion regarding that matters ? At my wife's stage, is autophagy  a good or a bad thing ? In case of bad thing, we could probably add chloroquine.

From my limited knowledge and my reading(some below), I just can't make up my mind on this.

https://www.genengnews.com/news/cancer-autophagy-relationship-turned-upside-down/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6274804/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6527373/

Thank you so much for your answers.

 

Julien

 


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johan
(@j)
Joined: 3 years ago
Posts: 638
 

@julienach

You raise a lot of good questions. We know metformin has anti-cancer properties but I'm worried for its effect on cancer stem cells https://www.cancertreatmentsresearch.com/community/metabolic-inhibitors/combo-metformin-and-syrosingopine-looks-awesome/paged/13/#post-1817

You might want to look into Vascustatin by Allergy Research, for inhibiting angiogenesis.

Deuterium depleted water has also compelling research, it makes sense as part of an anticancer strategy.

 
To improve the potential therapeutic effects of curcumin I'd use some of the best formulas: BioCurc®, CurcuWin®, Longvida®, CAVACURMIN®, TetraCumin-QR. This last formula is an interesting option to use in addition to the other formulas as you can hit other anticancer targets with it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6272158/
 
Here are a few studies on possible synergies of curcumin with other natural compounds:

I wouldn't combine too many supplements at the same time, rather rotate through specific combinations(for example combos with possible synergy), especially if you're dealing with potent antioxidants.

I haven't researched Febendazole other than a quick look at Joe Tippens's testimonial, from which I've concluded it's impossible to tell his recovery is due to this drug, as he was on a clinical trial at the time. Here on the forum, Carol's husband who has Prostate Cancer, said she observed a tempory stabilization of PSA levels, yet within 2-3 months PSA started to rise rapidly. I know of 3 other people who've tried it without success. 

I've raised my concerns on the use of Vitamin E many times here on forum, I'd only use it if there's a good study on your wife's specific type of cancer/tumor to support its use, as in some studies vitamin E has been shown to accelerate cancer progress.

Best

Johan

 

 

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JulienAch
(@julienach)
Joined: 2 years ago
Posts: 17
Topic starter  

@johan

I'll digest all that information ; thanks a lot for that ; Just  some quick coments : 

My wife's cancer is one of the rarest ; There is not much literrature about it ; So I guess best is to function by analogy ; One of the closest is probably angiosarcoma ; There has been some experiment with propanolol on this type of cancer but I understand only if the tumor as beta adrenergic receptor. Potential arm of E vit is not clear but you are right, 1st and intangible principle should be in all case : Do not make things worse

About FBZ, it sounds promising to me as there is now many human cases ; Clearly not a normalized clinical trial but still, people are taking it and having some interesting results for many cancer types which bring some level of evidence ; Apparently there is also a big group in china(100Kpeople) of people experimenting  + some in South Korea that literally emptied out the stock for dogs ; There is a need to organise all this datas which is apparently on going ; Joe tippens told me recently that there is an observational research going on led by the Oklaoma Medical research fondation with 1M$ funding ; Results are expected for next spring.

There is clearly not enough proof but there is also not much to loose trying this ; The clinical Trial JT was on was Keytruda for stage 4 SCLC and the probability to get a total response was 2%(see below), not 0% as he like to pretend ; He also did a prolonged  fasting which could have helped ; 

That being said, there is many other stories(I spent days reading through) and while its totaly possible to have the story of the guy that defy the odds, when the stories gets numerous, there is probably something ;

https://www.drugs.com/newdrugs/fda-approves-keytruda-pembrolizumab-metastatic-small-cell-lung-cancer-sclc-4995.html

as a side note, Vitamin E is part of the protocol and there is  reason to think that it synergise with FBZ.

https://www.ncbi.nlm.nih.gov/pubmed/19049251

Julien


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JulienAch
(@julienach)
Joined: 2 years ago
Posts: 17

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johan
(@j)
Joined: 3 years ago
Posts: 638
 

@julienach

I know 2% is not much, but nevertheless 2 out of 100, total response. But from that study, the partial responses stood out for me, and the duration. 17%, and durations of 35+ months, that's significant. Many people get chemo as standard treatment based on much worse statistics. And indeed he did an extended fast. That's why I'm surprised he is so confident it's the FEB that has cured him. As for the synergy with E, the supplemented vitamins in the study included B, D, K, E, and A. 

If 100K+ people with cancer are using this, there should be many well-documented case studies by now? It's been a few years now since Joe Tippens's story went viral. His recovery was fast, why is it taking so long to get more cases like him? It would be great to study those cases. 

Best

Johan

 

 

 

 

 


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johan
(@j)
Joined: 3 years ago
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johan
(@j)
Joined: 3 years ago
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Posted by: @julienach

My wife's cancer is one of the rarest ; There is not much literrature about it ; So I guess best is to function by analogy ; One of the closest is probably angiosarcoma ;

Mutations of p53 tumor-suppressor gene in angiosarcoma: https://www.ncbi.nlm.nih.gov/pubmed/9185695

 


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JulienAch
(@julienach)
Joined: 2 years ago
Posts: 17
Topic starter  
Posted by: @johan
Posted by: @julienach

My wife's cancer is one of the rarest ; There is not much literrature about it ; So I guess best is to function by analogy ; One of the closest is probably angiosarcoma ;

Mutations of p53 tumor-suppressor gene in angiosarcoma: https://www.ncbi.nlm.nih.gov/pubmed/9185695

 

I understand that P53 is involved in at least 50% of cancer ; Flubendazole activate P53

https://www.nature.com/articles/srep08202


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JulienAch
(@julienach)
Joined: 2 years ago
Posts: 17
Topic starter  

Do you have any opinion about autophagy being a good or a bad idea  ? It's my main concern right now as she is curently taking Flubendazole which is a potent autophagy inducer.

https://jeccr.biomedcentral.com/articles/10.1186/s13046-019-1303-z

note : She is taking 3mg/kg (in the animal model : 10-30mg/kg)


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johan
(@j)
Joined: 3 years ago
Posts: 638
 
Posted by: @johan
Posted by: @julienach

My wife's cancer is one of the rarest ; There is not much literrature about it ; So I guess best is to function by analogy ; One of the closest is probably angiosarcoma ;

Mutations of p53 tumor-suppressor gene in angiosarcoma: https://www.ncbi.nlm.nih.gov/pubmed/9185695

 

Soft Tissue Tumors edited by Fethi Derbel ( https://books.google.com)


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johan
(@j)
Joined: 3 years ago
Posts: 638
 
Posted by: @julienach

Do you have any opinion about autophagy being a good or a bad idea  ? It's my main concern right now as she is curently taking Flubendazole which is a potent autophagy inducer.

https://jeccr.biomedcentral.com/articles/10.1186/s13046-019-1303-z

note : She is taking 3mg/kg (in the animal model : 10-30mg/kg)

No opinion, just that reading the scientific literature it can promote and suppress cancer, very tricky.


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JulienAch
(@julienach)
Joined: 2 years ago
Posts: 17
Topic starter  

Yes its totally tricky, literature is inconsistent on that subject ; From what I understand, autophagy can block tumor initation and also help greedy, nasty tumor to grow even faster ; I struggle to find out if the behavior of a debulked/radiated tumor can be considered the same way than an initiating tumor.

Beside, Flubendazole act in other pathways too that are theoricaly helping ; I like this drug because of its very good BBB penetration but need to be sure about this autophagy thing..


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johan
(@j)
Joined: 3 years ago
Posts: 638
 

Rare case of hemangiopericytoma responds to sunitinib:

https://www.ncbi.nlm.nih.gov/pubmed/18279811


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JulienAch
(@julienach)
Joined: 2 years ago
Posts: 17
Topic starter  

That is for worst case scenario ; The only aproved drug so far for hemangiopericytoma is pazopanib  ; But it confirms that angiogenesis may be a good target


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johan
(@j)
Joined: 3 years ago
Posts: 638
 
Posted by: @julienach

That is for worst case scenario ; The only aproved drug so far for hemangiopericytoma is pazopanib  ; But it confirms that angiogenesis may be a good target

Yes. It's good to have many treatment options lined up in advance.


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johan
(@j)
Joined: 3 years ago
Posts: 638
 
Posted by: @johan

Rare case of hemangiopericytoma responds to sunitinib:

https://www.ncbi.nlm.nih.gov/pubmed/18279811

@julienach

I knew I had seen another extraordinary response to sunitinib(Sutent), and found it:

https://youtu.be/1CX2XtfASJg?t=640

In this case, a Merkel cell carcinoma, but I believe this is also a type of soft tissue cancer, so definitely one to not lose track off.


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JulienAch
(@julienach)
Joined: 2 years ago
Posts: 17
Topic starter  

Dear All, 

I still have a lot to learn and in the same time no much time to loose ; Based on what I've learn this is our protocol which intent to prevent a disease which virtually reoccur with a probability close to 100% : It is still on going and I would very much appreciate your feedback : 

-Liposomal Curcumin 200mg

-Liposomal Querectin 250mg

-Liposomal alpha lipoic acid/vitC  100/650mg

-Liposomal pterostylbene 200mg

Its a lot of antioxydant but my understanding is with no active disease, it's only beneficial ; The idea is to alter tumor promoting environment.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3932057/

As said before, I believe that for a vascular tumor inhibit angiogenesis make sens ; So we add : 

-Berberine 300mg(couldn't find liposomal form)

-Milk thistle phytosome with 80mg Silybine and 160mg Phosphatidyl-choline

-Some of the antioxydant below have AA mecanism as well but I feel need I need to add compound to adress this

-We also designed a special diet based on the research of Dr william Lee about AA food ; We made a food list on which we pick up at least 3 items everyday. She follows a low carb diet.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3184418/

She is also taking CBD oil(interesting for potential anti metastatic properties) and melatonin 4Mg(very interesting molecule in my opinion with a lot of suporting science ) ; This video is interesting despite Dr Shallenberger is maybe not the most reliable physician on earth and I couldn't find any published results.

https://www.youtube.com/watch?v=Roh4lQXneQg

What do you guys thinks about megadosing ? I've some discussion with 5/10 persons following this approach (60-180mg) who didn't reportes any side effect.

She is also taking Reishi extract 500mg for immune support

 

As suggested by Daniel, I'd like to add some autophagy inhibitors ; I'd like to stay natural as much as possible but not sure we can afford it ; I don't know how much we have to adress this and if hydrochloroquine can be valuable...

We'll anyway add liposomal astragalosides 180mg to adress autophagy.

I've many other potential candidates but I'm trying to stay coherent in the approach/strategy. 

Do you think fenbendazole or flubendazole would have its place in this protocol ?

I'm looking forward to your comments/suggestions


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JulienAch
(@julienach)
Joined: 2 years ago
Posts: 17
Topic starter  

An other drug I was thinking about is propanolol which has demonstrated results in angiosarcoma ; I believe hemangiopericytoma can be considered as a similar tumor ; 

LDN seems also interesting for prevention.


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johan
(@j)
Joined: 3 years ago
Posts: 638
 

200mg of CU is not much. Here's a lady who has controlled her cancer with CU:

https://margaret.healthblogs.org/

You probably have this covered, supplementing Omega3 is important, a 1:1 Omega3/Omega 6 balance is optimal ( eliminating all processed oils from diet).

 


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asafsh
(@asafsh)
Joined: 2 years ago
Posts: 82
 

@julienach

Sorry for your wife. 

This article claims  link that hyperthermia also acts as anti-angiogenic. Another article claims synergy of hyperthermia with pazopanib link


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