Hi Mkk,

I am so sorry you have to deal with this. Your English is very good. My English is not perfect too we can communicate and that it's great.

Some weeks ago I wrote this response that gives a bit of a view on how I see sarcoma https://www.cancertreatmentsresearch.com/fenbendazole/#comment-10826

Please check this and as soon as I have more time I will try to respond more. Please remind me next week. In general, my view is that sarcomas have an amplified glycolisis and we can turn that against cancer with pH theraphy (that you started) and at the same time I would laso focus on glyco inhibitors.

If possible, while on metronomic 2DG I would also consider using Propranolol (I wrote a post o this) which should help avoid temporarily hyperglicemia that may take place after finishing metronomic 2DG.

Kind regards,
Daniel

"Emerging Targeted and Immune-Based Therapies in Sarcoma" a bit old (2017)

https://ascopubs.org/doi/full/10.1200/JCO.2017.75.1610

You may research IRE Nanoknife for suitability in your case. 

All the best

for cic-dux4 mouse tests with dinaciclib show growth suppression:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6668665/

but drug isn't approved yet. may be you could check for ongoing trials if there are any. 

Hello! I had a few days off after a long time and decided to take advantage of them for a little vacation :), it is good to disconnect from this topic for a few days ..

Daniel, I was checking your answers, DCA is the next drug that Harguindey wants to add to the treatment, but he prefers to wait to the next CT scan that I will do in a few days

Regarding Propranolol I do not know if I should add it, I do not suffer from temporary hyperglycemia, in fact my blood glucose does not drop below 80 during 2DG, this has me worried, it would be interesting to add it anyway due to its anti-cancer properties ?

I'm going to add HCA and go back to the strict keto diet to help 2dg, as I abandoned it for a couple of weeks for weight loss. I have to say that this diet reduces my quality of life. For me going out to have a beer (without alcohol) with friends and eating makes me enjoy quite a lot. I don't know to what extent a strict keto diet can influence current treatment. I eat a low carbohydrate and nutritious diet but keto is hard for me (eating is one of the greatest pleasures I have right now :P) I have gone from weighing 82kg to 65kg (my height is 1.82) in three months and I noticed with very little energy

I've been looking at Thalidomide, it looks like a good drug to try, although I can't find sarcoma’s evidences, but it seems difficult to get from Spain, right?

I will add fenbendazole and colloidal silver to the treatment.

Is the treatment well focused? Should I add something else?

At what point should I consider adding salinomycin?

Thanks @asafsh, interesting dinaciclib, I will be pending clinical studies, regarding immunotherapy my oncologist says that in my case it is not interesting, I show little PD-L1, I'm going to do research on Nanoknife

Thanks for everything

Emilio

https://pubmed.ncbi.nlm.nih.gov/28899971/

https://pubmed.ncbi.nlm.nih.gov/30606719/

This only refers to osteosarcoma, but because of the type of tumor microenvironment and the ability to limit angiogenesis, it can be applied to virtually all sarcomas.

Respuesta del osteosarcoma refractario a la talidomida y celecoxib ( Ref .)

https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(05)70468-X/fulltext

https://scihub.unblockit.me/10.1016/S1470-2045(05)70468-X

@mkk for colloidal silver therapy you might be interested in nanoparticles that specifically designed to be absorbed by tumor cells. E.g. https://pubs.rsc.org/en/content/articlelanding/2019/nr/c8nr07667g#!divAbstract

this area is still in the research phase. may be you can find someone who can provide that for preclinical try.

The silver is known photosensitizer for radiotherapy and readily reacts with ionizing radiation. You may check the radiotherapy impact from anecdotal evidence of radiotherapy done in presence of slight argyria:

Severe Acute Radiation Dermatitis in a Patient with Argyria

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3970361/

Electrochemotherapy is know for numerous case reports showing its effectiveness against soft tissue sarcomas. Both animal and human cases are available:

Adjuvant electrochemotherapy with bleomycin and cisplatin combination for canine soft tissue sarcomas: A study of 30 cases

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6500853/

Electroporation Therapy in Soft Tissue Sarcoma: A Potentially Effective Novel Treatment

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1557797/

IRE is already widely used against pancreatic cancer (requires surgical operation to access tumor).

Nanoknife is the name of the device produced by one company. There are other devices on market as well.

Posted by: @mkk

Hello, first of all thank Daniel and the community for the enormous help you provide in this crazy world of cancer.

I am Emilio, I am 30 years old, diagnosed in October 2019 with CIC-DUX4 round cell sarcoma (more aggressive and worse prognosis than Ewing) in the abductor muscle with a size of 16x16x8cm, with micronodules in the 2 lungs. At the moment, my health is good, I have lost a lot of weight due to a poorly made keto diet, and some muscle mass.

Start Vdc / IE scheme every 2 weeks, for 3 cycles, there was tumor progression. At this time my doctor makes a change in chemotherapy to the Ifosfamide-epiburicin protocol (3 + 2) every 3 weeks. At the moment I start oncothermia in primary tumor and lungs, Keto diet, and I visited Harguindey. CT scan after 3 cycles shows radiological tumor stability with slight progression.
A few days ago I finished the 6 maximum cycles of this chemo scheme, I am awaiting a new CT, my oncologist thinks of trabectedin + low-dose radiotherapy for my next treatment. He says I have no possible cure, and the treatments are to gain months of quality of life.
My genomic analysis shows positive for FANCA and PIK3CB.
My current drug treatment is taken by Harguindey and has been changing over time. Consists in:

Liposomal amiloride 4ml x2
Amiloride capsules 10mg x5
Lansoprazole 30mg 5x
Acetazolamide 250mg 3x
Liposomal Quercetin 250mg 3x
Quercetin capsules 0.5gr 6x
Liposomal Reverastrol 400 mg 2x
Bicarbonate + DMSO 10ml 2x
Metformin 850mg 1x (waiting to rise due to possible interaction with amiloride)
Celecoxib 200mg 1x
Melatonia 200mg 1x

I have also been in 2DG metronomic treatment for 5 weeks

Supplements that I have added and where I have most doubts.

Modified citrus pectin 5g - 1x.
Vitamin D3 5000IU -1x
Vitamin k2 100mcg -3x
Milk thistle 500mg -3x
Berberine 400mg -3x
Astragalus 500mg -2x
Corioulus Versicolor 500mg -6x
Omega 3 EPA 500mg and DHA 200mg -4x
Two-per-day Life extension -2x
In a few days I plan to add cannabis oil (Rick Simpson type), more than 1gr / day

I have many other supplements that you recommend, but I'm not sure how to use them to make the treatment effective. I put a list of them:
- Gree Tea Extract 850mg
- Alpha-Lipoic Acid 300mg
- Super Selenium Complex 200 mcg & Vitamin E
- Ashawagandha 1000mg
- High Potency Bromelain 3000GDU 500 mg
- Optizinc 30 mg
- Garcinia Cambogia 500mg
- 100% glycine powder
- 100% Methyl Sulfonyl Methane Powder
- Boswellia Serrata 2000mg
- Magnesium bisglycinate 500mg
- Liquid Curcumin NovaSol with vitamin D, 500 mg
- Black Garlic 2000mg
- Pure C8 MCT oil

I have been entering the web and reading you for a while, but the more I read the more doubts arise and I see myself quite lost.

There isn't much information about sarcomas (or I can't find it) on the internet.

I am writing all this with the intention of explaining my case and, given your experience, seeing if you can help me make my treatment more effective or find evidence of sarcomas that I can use.

I'm quite desperate for my forecast.
Forgive me for my English, it's bad enough.

Greetings to all and thanks

Hi mkk,

The Novasol product only has 60mg of Curcuminoids per 1000mg of the curcumin blend. That's way to little. I suggest you check out products with 95% Curcuminoids and with Bioperine to improve absorption. 8 grams a day seem to be well tolerated, but you should always build up gradually to such high doses, for example starting at 1gram a day for a week, and if no side effects, up the dose to 2 grams and so on.

EGCg is on your list and there are studies that have shown increased anti-cancer effect when taken in combination. For example: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3709771/

Taking green tea extracts with some citrus/lemon juice could increase levels of catechins up to 5X
https://www.cbc.ca/news/technology/green-tea-up-to-5-times-as-healthy-when-citrus-juice-added-1.650899

I like the use of Ashwagandha, especially in combination with above supplements, but 1000mg is a bit low, can be up to 6000mg, again start at a low dose and build up if no side effects occur. Taken in afternoon and at night.

Cell cycle inhibition and apoptosis induced by curcumin in Ewing sarcoma cell line SK-NEP-1

https://link.springer.com/article/10.1007/s12032-009-9341-6

Inhibition of the Insulin-Like Growth Factor I Receptor by Epigallocatechin Gallate Blocks Proliferation and Induces the Death of Ewing Tumor Cells

https://mct.aacrjournals.org/content/9/5/1396.long

Synergistic antitumor effect of melatonin with several chemotherapeutic drugs on human Ewing sarcoma cancer cells: potentiation of the extrinsic apoptotic pathway

https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1600-079X.2009.00727.x

Posted by: @johan

Hi mkk,

The Novasol product only has 60mg of Curcuminoids per 1000mg of the curcumin blend. That's way to little. I suggest you check out products with 95% Curcuminoids and with Bioperine to improve absorption. 8 grams a day seem to be well tolerated, but you should always build up gradually to such high doses, for example starting at 1gram a day for a week, and if no side effects, up the dose to 2 grams and so on.

EGCg is on your list and there are studies that have shown increased anti-cancer effect when taken in combination. For example: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3709771/  

Hi Johan

Thank you for reminding that. I completely forgot the point that EGCG and other catechins degrade in alkaline environment.

The relation between brewing solution Ph and catechins content was researched also in "Effects of aqueous brewing solution pH on the extraction of the major green tea constituents" and other articles. 

Another paper "Investigating the Stability of EGCg in Aqueous Media" says:

It was found that EGCg was very stable in saline or the Ringers’ solutions at low temperature, unless there were certain metal ion contaminants present. Therefore, there are clear advantages to stabilizing EGCg solutions by using a metal scavenger (EDTA), an antioxidant (e.g., ascorbic acid), keeping the pH somewhat below neutral and keeping the temperature low during sampling and storage of EGCg.

From Curcumin co-administration perspective "Physical and Chemical Stability of Curcumin in Aqueous Solutions and Emulsions: Impact of pH, Temperature, and Molecular Environment" says that:

 After incubation at 37 °C for 1 month, >85% of curcumin was retained by emulsions stored under acidic conditions (pH <7), whereas 62, 60, and 53% was retained by emulsions stored at pH 7.0, 7.4, and 8.0, respectively. 

So, both like low Ph. So, based on above is it possible to try IV co-administration of VitC, curcumin and EGCG if there is no strong reaction between latter two and former, or post IV administration of EGCG + Curcumin after IV VitC. Another point - of adding doxycycline to that due to known synergy of VitC with doxy. Or could sustained vitc release form could help EGCG absorption?

in another article "Curcumin as a permeability enhancer enhanced the antihyperlipidemic activity of dietary green tea extract" the synergy of Curcumin is attributed to p-glycoprotein inhibition:

Curcumin and EGCG both are effluxed by P-gp; hence curcumin can play a pivotal role of inhibiting P-gp, thereby enhancing permeation of EGCG by inhibiting its efflux

I can't validate the last paper, but if it is true, then could more potent MDR inhibitors co-administration increase the EGCG and other supplements impact? there should be plenty of specifically designed MDR inhibitors which were not passed approval due to high toxicity when co-administered with chemo drugs, but they might be quite ok for the lower impact supplements to enhance their efficacy.

Yet, above also means that if PPI is going to be added to the treatment then the EGCG and Curcumin might need to be separated in time or avoided, otherwise efficacy of these supplements could be reduced.

Another vote for EGCG and Milk thistle:

"Anti-proliferative activity of epigallocatechin‑3‑gallate and silibinin on soft tissue sarcoma cells"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5355719/

Note: i am not doctor or researcher, so all of above must be verified!!!

From PPI perspective - PPI must be avoided when taking anti-angiogenic Pazopanib as co-administration may decrease the PFS with Pazopanib alone (iirc this is from trial data). 

Review on the sarcoma lactic acid and metabolism (it contains information, which is split into different articles in this web page, but also concentrate on sarcoma, so might be interesting) :

"Lactate in Sarcoma Microenvironment: Much More than just a Waste Product"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7072766/

Thank you for your insighful response asafsh, much appreciated! 

 

I can't validate the last paper, but if it is true, then could more potent MDR inhibitors co-administration increase the EGCG and other supplements impact?

I agree, i.e capsaicin.

Histone deacetylase inhibitors vorinostat and panobinostat induce G1 cell cycle arrest and apoptosis in multidrug resistant sarcoma cell lines
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5652778/

In this study, vorinostat (SAHA), panobinostat (LBH-589), and belinostat (PXD101) decreased cell viability of synovial sarcoma (SW-982) and chondrosarcoma (SW-1353) cells in a time- and dose dependent manner and arrested SW-982 cells in the G1/S phase. 

Noteworthy, all HDACi tested had synergistic effects with the topoisomerase II inhibitor doxorubicin in SW-1353 chondrosarcoma cells making the cells more sensitive to the chemotherapeutic drug.

valproate, probably less potent, is cheaper alternative to HDACi drugs in above article. 

Posted by: @asafsh

valproate, probably less potent, is cheaper alternative to HDACi drugs in above article. 

indeed, and a few other HDACi:phenylbutyrate,chlorogenic acid,caffeic acid, sulforaphane, curcumin

@mkk you may ask your doctor whether foxm1 directed therapy is eligible for this type of sarcoma:

FOXM1 in sarcoma: role in cell cycle, pluripotency genes and stem cell pathways
https://europepmc.org/backend/ptpmcrender.fcgi?accid=PMC5173172&blobtype=pdf

drugs mentioned in above article:

thiazole antibiotics, siomycin A, thiostrepton, bortezomib, cisplatin, genistein (supplement), docetaxel

another proteasome inhibitor ritonavir may work in synergy with bortezomib (approved drug) from above article:

Ritonavir induces endoplasmic reticulum stress and sensitizes sarcoma cells toward bortezomib-induced apoptosis
https://mct.aacrjournals.org/content/7/7/1940

another article claims that honokiol is foxm1 antagonist (applies to the foxm1 therapy above?)

Honokiol is a FOXM1 antagonist
https://www.nature.com/articles/s41419-017-0156-7.pdf

but concentrations used in in-vitro tests are quite high to achieve in vivo. may be by IV as it is shown in article below for 2 cases (non-sarcoma), first case improved QoL, second resulted in permanent remission:

Intravenous Honokiol in Drug-Resistant Cancer: Two Case Reports
https://journals.sagepub.com/doi/pdf/10.1177/1534735420922615

as always, validate this with your oncologist.

@johan

Hello @johan, regarding curcumin I have seen that Daniel recommends this https://www.amazon.es/Doctors-Best-Curcumin-Complex-BioPerine/dp/B001J9K5PG/ref=sr_1_3?__mk_es_ES=%C3%85M%C3 % 85% C5% BD% C3% 95% C3% 91 & dchild = 1 & keywords = doctor + curcumin & qid = 1591385112 & sr = 8-3
I have also seen this: https://www.amazon.es/Curcumin-Phytosome-Featuring-Vegetarian-Capsules/dp/B008YDH4HM/ref=sr_1_6?__mk_es_ES=%C3%85M%C3%85%C5%BD%C3% 95% C3% 91 & dchild = 1 & keywords = doctor + curcumin & qid = 1591385721 & sr = 8-6 with meriva
which better?

Or are there better liposomal preparations?

Would it be okay to have a green tea with lemon juice + 1-2g of EGCg + Omega 3 + 2-3g curcumin + 400mg berberine all together 3 times a day?

Would it be good to take the other liposomal supplements first?

Thanks!

Posted by: @asafsh

Posted by: @johan

Hi mkk,

The Novasol product only has 60mg of Curcuminoids per 1000mg of the curcumin blend. That's way to little. I suggest you check out products with 95% Curcuminoids and with Bioperine to improve absorption. 8 grams a day seem to be well tolerated, but you should always build up gradually to such high doses, for example starting at 1gram a day for a week, and if no side effects, up the dose to 2 grams and so on.

EGCg is on your list and there are studies that have shown increased anti-cancer effect when taken in combination. For example: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3709771/  

Hi Johan

Thank you for reminding that. I completely forgot the point that EGCG and other catechins degrade in alkaline environment.

The relation between brewing solution Ph and catechins content was researched also in "Effects of aqueous brewing solution pH on the extraction of the major green tea constituents" and other articles. 

Another paper "Investigating the Stability of EGCg in Aqueous Media" says:

It was found that EGCg was very stable in saline or the Ringers’ solutions at low temperature, unless there were certain metal ion contaminants present. Therefore, there are clear advantages to stabilizing EGCg solutions by using a metal scavenger (EDTA), an antioxidant (e.g., ascorbic acid), keeping the pH somewhat below neutral and keeping the temperature low during sampling and storage of EGCg.

From Curcumin co-administration perspective "Physical and Chemical Stability of Curcumin in Aqueous Solutions and Emulsions: Impact of pH, Temperature, and Molecular Environment" says that:

 After incubation at 37 °C for 1 month, >85% of curcumin was retained by emulsions stored under acidic conditions (pH <7), whereas 62, 60, and 53% was retained by emulsions stored at pH 7.0, 7.4, and 8.0, respectively. 

So, both like low Ph. So, based on above is it possible to try IV co-administration of VitC, curcumin and EGCG if there is no strong reaction between latter two and former, or post IV administration of EGCG + Curcumin after IV VitC. Another point - of adding doxycycline to that due to known synergy of VitC with doxy. Or could sustained vitc release form could help EGCG absorption?

in another article "Curcumin as a permeability enhancer enhanced the antihyperlipidemic activity of dietary green tea extract" the synergy of Curcumin is attributed to p-glycoprotein inhibition:

Curcumin and EGCG both are effluxed by P-gp; hence curcumin can play a pivotal role of inhibiting P-gp, thereby enhancing permeation of EGCG by inhibiting its efflux

I can't validate the last paper, but if it is true, then could more potent MDR inhibitors co-administration increase the EGCG and other supplements impact? there should be plenty of specifically designed MDR inhibitors which were not passed approval due to high toxicity when co-administered with chemo drugs, but they might be quite ok for the lower impact supplements to enhance their efficacy.

Yet, above also means that if PPI is going to be added to the treatment then the EGCG and Curcumin might need to be separated in time or avoided, otherwise efficacy of these supplements could be reduced.

Another vote for EGCG and Milk thistle:

"Anti-proliferative activity of epigallocatechin‑3‑gallate and silibinin on soft tissue sarcoma cells"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5355719/

Note: i am not doctor or researcher, so all of above must be verified!!!

From PPI perspective - PPI must be avoided when taking anti-angiogenic Pazopanib as co-administration may decrease the PFS with Pazopanib alone (iirc this is from trial data). 

Review on the sarcoma lactic acid and metabolism (it contains information, which is split into different articles in this web page, but also concentrate on sarcoma, so might be interesting) :

"Lactate in Sarcoma Microenvironment: Much More than just a Waste Product"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7072766/

@johan @asafsh

to my previous answer add also the taking of 500 mg of milk thistle, this contains 80% Silymarin, is it enough? forgive my ignorance

@mkk

500mg - 1000mg/day is a good dose.

Posted by: @mkk

@johan

Hello @johan, regarding curcumin I have seen that Daniel recommends this https://www.amazon.es/Doctors-Best-Curcumin-Complex-BioPerine/dp/B001J9K5PG/ref=sr_1_3?__mk_es_ES=%C3%85M%C3 % 85% C5% BD% C3% 95% C3% 91 & dchild = 1 & keywords = doctor + curcumin & qid = 1591385112 & sr = 8-3
I have also seen this: https://www.amazon.es/Curcumin-Phytosome-Featuring-Vegetarian-Capsules/dp/B008YDH4HM/ref=sr_1_6?__mk_es_ES=%C3%85M%C3%85%C5%BD%C3% 95% C3% 91 & dchild = 1 & keywords = doctor + curcumin & qid = 1591385721 & sr = 8-6 with meriva
which better?

Or are there better liposomal preparations?

Would it be okay to have a green tea with lemon juice + 1-2g of EGCg + Omega 3 + 2-3g curcumin + 400mg berberine all together 3 times a day?

Would it be good to take the other liposomal supplements first?

Thanks!

@mkk

Hi, I don't see an issue with taking the green tea with lemon and the supplements you listed together, however remember to start curcumin at 1 or 2 grams a day for a week and switch to higher doses if no side effect occur. I'd take Berberine 4 days per week (4days ON/3 days OFF)during 6-8 week cycles.

It's very tough to know which CURC supplement is the better, the one Daniel recommends is a very good one, I've written about some other formulations here.

Posted by: @mkk

to my previous answer add also the taking of 500 mg of milk thistle, this contains 80% Silymarin, is it enough? forgive my ignorance

Johan mentioned good starting dose. If your MD will find this drug relevant (from anti-tumor perspective) you may be asked to do drug titration to find a right dose which could be close to the level adverse effects are started upon exceeding of (similar to the way Johan described for Curcumin)

For EGCG iirc, Daniel mentioned case where patient was administered with 4g of pure EGCG daily. 

At least both, egcg and caffeine values must be noted in green tea extract as latter (if extract wasn't properly decaffeinated) may result in adverse effect. 

@mkk

Hi Emilio, I'm happy to read you here,

I think you're on the right way. I would be prudent in the concomitant use of milk thistle in high doses with vitamin c iv since silibinin / silymarin can act as GLUT1 inhibitors and obstruct the work of vitamin c. On the other hand, curcumin in high doses is considered oxidizing, but as Daniel comments, it is possible that depending on the dose it may partially act as an antioxidant.
The combo that added Marcos de talidomida + celecoxib can be important. I would add an HDAC inhibitor like sodium phenylbutyrate

kind regards

@mkk

Do you have a chance to investigate 2 posts i made on hormones:

https://www.cancertreatmentsresearch.com/community/repurposed-drugs-and-new-substances/desmopressin/

https://www.cancertreatmentsresearch.com/induced-hypothiroidism-hypothyroxinemia/#comment-10922

There is a chance these 2 could be valid therapeutic points to consider in your case as well.

If you have a possibility to discuss above with your oncology MD and endocrinology specialist for validity and  possible side effect of hormone treatment alone and in co-administration with you current treatment that will be very good. I will do the same on my side and post conclusion here.

p.s. imho, it is better not to go with trabectedin before other choices are tried, and i think there are few to try for sure.

Hello @manuone

Yes, I should have been here before ... but the chemotherapy has stunned me for a few months, I don't know why but this has reversed, I have a lot more physical and mental energy finishing the scheme than at the beginning-middle of this one.

How is your mother? I hope it's ok

I am not using vitamin C IV, since they advised against it during the treatment, today I have a TAC, if they give me chemo break, I will consider taking it.

Very interesting the topic of
HDAC inhibitors, I read the study that @asafsh quoted me (thank you) I will probably add some sodium phenylbutyrate, I am waiting for Salvador to answer me about this.

If you do not mind I would like to talk with you in the next few days by facebook to talk about empty liposomes, I have already contacted EnocPharma and I am going to place an order but I have any questions.

Thank you very much

Posted by: @asafsh

@mkk

Do you have a chance to investigate 2 posts i made on hormones:

https://www.cancertreatmentsresearch.com/community/repurposed-drugs-and-new-substances/desmopressin/

https://www.cancertreatmentsresearch.com/induced-hypothiroidism-hypothyroxinemia/#comment-10922

There is a chance these 2 could be valid therapeutic points to consider in your case as well.

If you have a possibility to discuss above with your oncology MD and endocrinology specialist for validity and  possible side effect of hormone treatment alone and in co-administration with you current treatment that will be very good. I will do the same on my side and post conclusion here.

p.s. imho, it is better not to go with trabectedin before other choices are tried, and i think there are few to try for sure.

Hello @asafsh

Thanks for your involvement in my post

Interesting this, on top I think I have a hormonal imbalance, the year before the diagnosis I had trouble sleeping, low libido, I think that too little energy, I guess this may indicate a mismatch

The problem I have is that my oncologist is very good in Sarcoma, it seems to be the best in Spain, but he is not open to debate anything. Once in consultation he told me not to ask questions, that cancer consultations were for him to ask, not me. For these reasons he does not know anything about my treatment outside of chemotherapy, I think it is not convenient to change the oncologist because being such a rare disease, there are few centers that treat it, in Spain there are over 6, the protocols here are very standardized even without having effectiveness, and my oncologist conducts many clinical trials and has extensive experience in sarcomas (many publications, etc.)

I am thinking of going to an Endocrine, carrying out analysis and studying the case.

Regarding trabectedin + low-dose radiotherapy, It is a protocol that the GEIS sarcoma research group in Spain developed with good results or apparently with good results (I don't know the real interest in giving me this treatment) why would you try to avoid it? a lot of toxicity? I'm not sure what chemo alternatives I have, but since this tumor is so aggressive, shouldn't I take these risks?

Thank you

@mkk 

yes, i see. researched Spain before for treatment - iirc you have largest number of Sarcoma Centers in Europe.

i tried to contact endocrynologist with no meaningful result, unfortunately. she didn't want to think outside of the box. Still trying to find someone who will listen. 

meanwhile, note the https://www.mdedge.com/hematology-oncology/article/175089/sarcoma-gist/parp-inhibitor-plus-trabectedin-shows-promise

also, parp inhibitors may sensitize some tumors to the radiotherapy. just in case if your doctor will listen to you.

BTW, is Mr Harguindey your current MD for treatment?

Good Luck!

@asafsh  I'm going to read this, yes, Sr. Harguindey is my doctor

Hi @asafsh,

I now see the Honokiol application in intravenous form in humans with good results in prostate and breast cancer. This is very interesting as it is the first time I see it applied intravenously. It looks like it is relatively easy to formulate intravenously. Thanks a lot for sharing this! 

Kind regards,

Daniel