That's a very significant shrinkage!
I am certainly interested in learning more about phenylbutyrate.
Was the hydrocephalus a result of the phenylbutyrate?
regards,
Johan
With regards to side effects, which one is the most "dangerous", syromet or phenylbutyrate?
I will try see if I can source phenylbutyrate from a pharma company.
The Curcumin we use is Solgar Full Spectrum Curcumin, 2 caps a day.
Regards,
Johan
Syro is much more of an uncharted theritory in terms of side effects compared to PhenylButyrate.
Like Adi said, the drawback with phenylButyrate is the taste and smell that is very bad.
The curcumin you are now using has very little Curcumin inside. For an adult, the dose that was reported as being relevant in oncology was in the range of 7-8g/day of Curcuminoids. This shoudl help you calculate what you need.
Kind regards,
Daniel
Since the tumor was pretty large, the CSF flow from the cerebral ventricles to the spine was reduced to an almost stop, so pressure built up in the brain (hydrocephalus). Since this happened while we were in the hospital (august 2019), we got an immediate shunt operation. This was before the second round of radiotherapy which took place august 2019-sept 2019 which improved his condition but not very much (nowhere near as spectacular as radiotherapy round 1). On the bright side though it stabilized the tumor so it stopped growing.
We started ONC201 in oct 2019 which gave a small improvement by January 2020 (think 6.1 cm diameter to 6 cm on all axis). Syromet and phenyl started out later (march 2020). According to the surgeon that installed the shunt, in gliomas it is frequent that proteins build up in CSF, which give it a yellow color and increases viscosity of CSF so in time the shunt just clogs. This does not happen in deformities or just obstructive tumors (benign tumors for instance). For such cases it is not unusual for the shunt to last a whole life (a coil of the tube is made inside the abdomen so that it "grows" with the child). For gliomas in general, the story is different, apparently shunts don't last so long. Yellow CSF can be caused by proteins or infections (this can give it also a cloudy appearance which was not our case-CSF analysis showed it was sterile).
The hydrocephalus I was speaking about in my previous post came around end of May 2020. I have no idea if upon tumor cell death, the protein production increases, could be... The shunt is not placed in the tumor, it is placed in one of the cerebral ventricles so there is no direct impact of tumor growth/shrinkage to the shunt. The shunt is a very narrow tube, not very flexible(when you turn your neck for instance it shouldn't bend so it stops flow) with reduced flow (think tens of ml/day) which also has a complicated valve stuck on it, which of course can clog easier than the tube itself. Once pressure builds up, it gets much worse, blood vessels rupture which lead to blood clots which leads to more blockage.
I would say there is no problem in this regard if there is no shunt there in the first place. The natural way of clearing CSF is much better than a tube.
Thanks Daniel, I have already been in contact with our local pharmacy to see if they can get hold of both the PhenylButyrate and the high grade Curcumin!
I have got more answers on this forum in just a few days than from some doctors over the entire last year!
Regards,
John
thanks for your elaborate answer!
It's very difficult to get good advice in this battle against this terrible disease and every decision is so difficult!
Our daughter also responded good on the second round of radiotherapy, but also not as good as she did in the first round. We are hoping that there's no progression but are preparing for the worst.
Again thanks a lot.
Regards,
John
@adifer, my deepest condolences on the loss of your son. I hope that the suggestions made on this forum were benefited your son.
@Johntt, perhaps you should consider Dayspring. They posted a DIPG patient recently and their metabolic logic is highly aligned to the approach of this website
Hi J,
Nice to hear from you!
Interesting case, but I would not go to DaySpring specifically for that kind of therapy. I do believe that Curcumin IV can help in such case, but this is available at many clinics around the world - so people can better find a clinic close to their home to do this. They can buy Curcumin ready for IV from compounding pharmacies.
Kind regards,
Daniel
Hi Adifer,
We are going to start with phenylbutyrate very soon now.
Is there any advice you can give?
We are also going to give it via tube, split in evenly doses with meals.
Do we need to give alot of water with it?
How fast did you saw signs of improvement?
Did you give other medication or supplements with it?
Regards,
John
This is an old thread... has anyone been successful with the metformin and syrosingopine combo??
@catsrule There were some references to people who benefited, but you need to go through the content. In any case, in my view this combo is powerful but should not be used alone - instead, should be integrated into a more comprehensive treatment protocol as mentioned in the first part of this discussion.
Kind regards,
Daniel
Hi Daniel, sadly my daughter passed away last year.
Since I know how difficult it is to get pharma grade medication I was wondering if I could help others with phenylbutyrate? I still have 4 containers Ammonaps 500mg (250 pills per container) of which 3 are still sealed, experiation date March 2023 from manufacturer Immedica pharma. Obviously I have no use for them anymore, but knowing how expensive they are and how many people need it it feels not okay to throw them away.
Perhaps you know how to put them to good use?
Regards,
John
@johntt Dear John,
I am so sorry to hear about your daughter's passing ...
Thank you so much for thinking to help someone else with the Phenylbutyrate you still have. I will think about if I know someone who needs it. Otherwise, soon or latter, someone will see your msg here and will ask your help with that.
Kind regards,
Daniel
Daniel: I didn't know where to post this, so I'll just do it here. I just read about a clinical trial of an anti cancer virus at City of Hope:
Hi Daniel, sadly my daughter passed away last year.
Since I know how difficult it is to get pharma grade medication I was wondering if I could help others with phenylbutyrate? I still have 4 containers Ammonaps 500mg (250 pills per container) of which 3 are still sealed, experiation date March 2023 from manufacturer Immedica pharma. Obviously I have no use for them anymore, but knowing how expensive they are and how many people need it it feels not okay to throw them away.
Perhaps you know how to put them to good use?
Regards,
John
Hi John, do you still have some phenylbutyrate? Someone on the forum could need it.
Thanks
Hi John. I have just started recently reading Daniels Blog. I am sorry for you daughters passing. My wife is suffering from Stage IV TNBC. I am just trying to keep her alive. So much information to sort through to try and help. I saw you had some vials of phenylbutyrate. Do you by chance still have any left? If Not can you let me know where to purchase at a reasonable cost. Our intregrative doctor has never prescribed them so he doesnt know where to even get some. Thank you so much. Jens Weerakoon.447936057985
@jens Hi, I know Johntt hasn't any left, a few months ago he sent his last bottles to a member of this forum. Canchema.com sells generic PB.
@jens Hi Jens, sorry to hear of your wife's condition. We gave all our bottles away a couple of months ago. Our doctor/hospital prescribed Ammonaps from the Company Immedica. Ammonaps comes in the form of pills or granulat. Granulat is the preferred form otherwise you need to crush the pills first. Ammonaps is a 100% grade pharmaceutical product but very expensive, I think we paid 1500EUR for 266g. but prices did vary a lot depending were the hospital bought it. I think you can only order it via a hospital like we did. The canchema product doesn't require a prescription, you can buy it yourself online directly, however is not 100% grade, we paid 665EUR for 250g. in 2021. Reg. John.
Hi Johan. Thanks alot. I have been reading your posts and links. Just wanted to say thanks for all your work. Maybe you can advise on a few things. 1. I am also having trouble sourcing tetrathiomolybdate. 2. I also need a infusion pump to start 2DG. Our Integrative doctor does not do 2DG and does not have the infusion pumps. Any thoughts on how I can purchase one at a reasonable cost? 3.My wife stopped responding to the parp inhibitor OLARPARIB. She was not taking any of the things i was suggesting due to pill anxiety due to previous chemo. Finally, she is being receptive now. I am trying to focus on the Mitochondria. Please let me know your thoughts. I know you like natural supplements as well.
1. Loratadine 10mg 4. Lansoprazole 40mg X 2 7.Atorvastatin 40mg X 2 10. Diclofenac
2. Aspirin 81 Mg 5. Cimetidine 400 X 2 8. Fenbendazole 1000mg 3 days on 2 days off
3. Metformin 850mg x2 6. Doxycycline 100mg 9. LDN 3.0
Natural:
1.Curcumin 6 G 6. Dan Shen- Tincture I can't find the correct dose- Guessing
2.Berberine 500mg 7. Baicalin- Tincture same as above
3.Thiamine 1000mg tested low 8. B12- Sublingual
4.DHEA-200mg tested low
5.Vitamin D 20,000 iu tested low+ Mag+k
Right now I started her on IV DCA up to 4 Grams two times a week
and IVC 60 two times a week. i just cant afford any more times unfortunately. I need to try and learn how to do at home. Trying to ad Metromonic 2DG
Some observations:
LORATADINE:
Enhanced cancer growth in mice administered daily human-equivalent doses of
some H1-antihistamines: predictive in vitro correlates
https://pubmed.ncbi.nlm.nih.gov/7909571/
Fatty acid oxidation inhibition seems useful in TNBC.
You may want to check on this thread, Chris's wife also has TNBC.
@daniel is the expert on 2DG, I hope he sees this post.
I'd check your lists of drugs and supplements for synergistic anticancer effects:
https://synergiesforcancertreatments.blogspot.com/
https://synergiesforcancertreatments.blogspot.com/p/synergies.html
Tetrathiomolybdate
https://www.cancertreatmentsresearch.com/tetrathiomolybdate-tm/#comment-12166
I think there's a considerable downside to that treatment.
I hope this helps a bit, and I wish you and your wife the best of luck and hope she can overcome this illness.
Here's a good example of synergy in an MDA MB 231 model (hormone-independent breast cancer cell line)
"The present study investigated the antiproliferative effect of Chlorogenic acid, Gallic acid and Ellagic acid on MDA MB 231 breast cancer cell line against a standard drug Cyclophosphamide using MTT assay. Chlorogenic acid, Gallic acid and Ellagic acid showed dose dependent inhibition and thus, the cytotoxic doses selected were Chlorogenic acid of 150 µM/100µL, Gallic acid of 5 µg/mL, Ellagic acid of 100 µM and Cyclophosphamide of 5 µg/100µL. All these concentrations were further used for studying the synergistic effects of the selected phytochemicals on MDA MB 231. On checking the synergistic cytotoxic effect of these phytochemicals on MDA MB 231 cell line, it was found that the combined phytochemicals are far more cytotoxic and thus, the most appropriate combinations chosen for further research work were T1, T2, T7, T11, and T5. These combinations were further used for checking the migration of cells against media control. Scratch well Assay concludes that in the chosen treatments, only T1 (CGA) shows slight migration while other treatments do not show any migration, while on the other hand, media control proliferates to cover the well completely in 72 h. Thus, the treatments, T2, T7, T11, and T5 must be anti-metastatic and thus, are very beneficial."
https://www.iosrjournals.org/iosr-jpbs/papers/Vol12-issue3/Version-6/I1203064852.pdf
Here's a good example of synergy in an MDA MB 231 model (hormone-independent breast cancer cell line)
"The present study investigated the antiproliferative effect of Chlorogenic acid, Gallic acid and Ellagic acid on MDA MB 231 breast cancer cell line against a standard drug Cyclophosphamide using MTT assay. Chlorogenic acid, Gallic acid and Ellagic acid showed dose dependent inhibition and thus, the cytotoxic doses selected were Chlorogenic acid of 150 µM/100µL, Gallic acid of 5 µg/mL, Ellagic acid of 100 µM and Cyclophosphamide of 5 µg/100µL. All these concentrations were further used for studying the synergistic effects of the selected phytochemicals on MDA MB 231. On checking the synergistic cytotoxic effect of these phytochemicals on MDA MB 231 cell line, it was found that the combined phytochemicals are far more cytotoxic and thus, the most appropriate combinations chosen for further research work were T1, T2, T7, T11, and T5. These combinations were further used for checking the migration of cells against media control. Scratch well Assay concludes that in the chosen treatments, only T1 (CGA) shows slight migration while other treatments do not show any migration, while on the other hand, media control proliferates to cover the well completely in 72 h. Thus, the treatments, T2, T7, T11, and T5 must be anti-metastatic and thus, are very beneficial."
https://www.iosrjournals.org/iosr-jpbs/papers/Vol12-issue3/Version-6/I1203064852.pdf
Ellagic acid: Blackberry, Chestnut, walnut
Gallic acid: Chestnut, Walnut, Cloves, Oregano (dried), Black tea
Chlorogenic acid: Green coffee extract
@j Hi Johan.
I am also trying to has have much food that have a negative impact on TNBC. This helps.
Thanks
@j Hi Johan.
I am also trying to has have much food that have a negative impact on TNBC. This helps.
Thanks
Great! Here are some compounds useful for Fatty acid oxidation inhibition:
Curcumin, EGCG, Berberine, Dandelion root, Orlistat, Ursolic acid, Silybin, Artemisinin, Caffeic acid, Fucoxanthin, Lycopene, Carnocic acid.
I've attached an image with some synergies and you'll notice some of the above-mentioned FAO inhibitors that might work well in combination, also quercetin is an FAOi.
