Yes, I think that was the doctor with the syro formulation. I just wasn't able to work through the url to find the link. JohnnyP, glad that the treatments have been helping.
A good formulation would also clearly help reduce the side-effects from the syro
care to expand on this ? 😀
The anti-cancer potential for a good 3-BP formulation is actually quite scary; with 3-BP they might need to just step back and say all that horse power is simply not required
3BP is a drug I read many good things about. Apparently paired with salinomycin it can do wonders. However since it results in necrosis, therefore inflammation, it is probably not the best thing to use in the brainstem, or atleast not while the tumor burden is so high. Apoptosis is better in this regard. I can tell you from experience that slight variations in inflammation can lead to huge impacts. Just a bit of extra mannitol was the difference between him being able to open his eyes or not. Since the eyes are the way through which we communicate with him and the only thing he is able to somewhat control (there are problems there too, can't move them left-right) you can imagine how scary that was...
Current plan is to stick to the syromet, maybe add a couple of horse power down the line when it's efficiency decreases (thinking of mebendazol and berberine here) and then maybe give the coup de grace with 3bp. but of course everything can change since I am still reading on it... Big site, lots of work by Daniel and you guys and a ton of References to follow to understand a bit better mechanisms, sinergies and antagonists.
And of course in the mean time ballancing lactate levels, blood pressure, pulse, hydration, etc
(thinking of mebendazol and berberine here)
Berberine protects against metformin-associated lactic acidosis in induced diabetes mellitus
I am very sorry for your child's illness
Never use 3BP so far thinking about possible cerebral edema.
It is possible that your child may benefit from sodium phenylbutyrate.
It is a drug that dissolves well in water over 5 g, is well tolerated in much larger doses. I have acquired it from a trusted Chinese distributor for a long time ([email protected])
Best whises
I have stopped taking showers. I like long showers; it helps me think. Yet, it could also be causing my asthma. I haven't had a shower in a few days and I think it is helping.
Sorry about this, J. I hope you'll find a solution real soon. I know not breathing well is awful and puts anyone out of commission in an instant. I am giving you here my ideas on the subject.
Depending on where you live, tap water may be disinfected with chlorine (plain bleach) or chloramine (they mix bleach and ammonia at the water treatment plant). Both of them get sprayed in the shower air and breathed in by the bather. Both are irritating to live tissues. I imagine the chlorine (which is the most commonly used of the two substances all over the world) is more likely to cause respiratory problems because it becomes gas and thus more easily inhaled once the water leaves the pipe pressure. Your respiratory track epithelium may have gotten tired of this irritant and is asking you for help with your asthma.
If avoiding showers is helping you, then it seems a good sign that you are on the right track. You might want to try using a chlorine-filtering breathing mask (3M makes them for chemical factory workers) and don it during the shower; but find a way to keep it dry, even if this means that during the testing period you shower only from the neck down. You can then wash from your neck up without shower, in chlorine-free water, which can be either bottled drinking water or, if it is chlorine, water that has been sitting in an open container about one hour or so and has let all the chlorine gas out. This trick would not work with chloramine because it does not gas out. It evaporates with the water, meaning that there will be chloramine in the water until the last drop of water has evaporated.
You can ask the company that supplies your faucet water what disinfectant there is in your water and act accordingly.
Asthma is often believed to be a psychosomatic illness, so if you can't get rid of it by avoiding chemical irritants, you might want to give some thought to whether your mind is having trouble from any major difficulty you are dealing with.
I wake up tired as I have probably had some apnea during the night.
Please, get yourself tested for apnea and don't ignore it. Untreated sleep apnea causes hypoxia which slowly but steadily leads to a whole lot of serious problems, including substantial rise in many types of cancer (remember that cancer loves hypoxia); cardiovascular issues (the heart pumps much faster trying to deliver enough oxygen to the brain but the brain does not receive enough oxygen anyway, which leads to permanent loss of hearing and memory) among many other losses. And it also lowers your current quality of life because you feel tired during the day, especially in the morning I assume.
If your apnea is just positional, i.e. when you sleep on your back, which seems to be most common, you can train to sleep on your sides only and avoid staying supine. This is sufficient for many people to avoid using CPAP without suffering the consequences of apnea.
Best luck!
Berberine protects against metformin-associated lactic acidosis in induced diabetes mellitus
Thanks for the info...looks good. not sure how it translates from rats to humans but as long as we start very low it should be ok.
It is possible that your child may benefit from sodium phenylbutyrate
I'll look into it. Thanks for the tip.
Noone seems to mention mebendazole, even if there is a trial ongoing on pediatric gliomas including DIPG in US. Should finish this year but they add other chemos to it. Anyone here has experience with mebendazole? Seems pretty safe and quite useful and fairly easy to get and use.
It is possible that your child may benefit from sodium phenylbutyrate
I'll look into it. Thanks for the tip.
adifer, through all the years that I have been posting here and on the compass forum, it has become increasingly clear that one winning cancer strategy would involve: dual metabolic targeting with good formulations, possibly also with polypharmacy and metronomic dosing. It is not so much that we do not know what needs to be done, instead it is more a question of putting the pieces together to move the idea to reality. Slowly we have been making progress towards achieving this goal.
Here again with straight syro we see the side-effects that can result. A better formulation (perhaps with liposomes etc.) could greatly reduce side effects, while increasing efficacy. We have seen this with a range of formulations. One of my all time favorites to date has been mini-cells. They dramatically reduced dosing for example in mice, all the way down to nanogram scale. The dose reduction is almost beyond belief. Nano-Methylglyoxal was another impressive one. Small scale dosing with a tumor targeted chitosan preparation. To date we have been able to have one good formulation in a treatment regimen. I am greatly awaiting the time when we can move it up to dual metabolic treatment. Selectively targeting the main energy factories of cancer simultaneously should realistically have profound anti-cancer effects.
Of course, this is the beauty of syromet. It is a dual treatment. However, it is only using straight product. The next step forward for it would be to move to formulate them. Something like nanosyrosingopine and mito-metformin might have very extreme anti-cancer effects. What is especially promising about this line of thought is that there are quite possibly thousands of metabolic treatments with very good formulations. We can be very selective. We can look on pubmed search for those with in vivo evidence and a good safety profile. A 100 or greater dose reduction often becomes possible.
3-BP now has quite a few published formulations. In carefully pre-selected patients with a good formulation and proper combination, the treatment power of 3-BP would be very extreme: probably more horse power under the hood than would be required. We saw even with straight 3-BP and paracetamol in the melanoma patient there was very large treatment effects.
This is a very difficult situation trying to cope with level of disability. I hope that we can help. We have seen that the brain is an especially challenging region with respect to treatment and inflammation. It is not so much that we do not know how to treat the brain cancer, instead the brain's response of inflammation that can block more aggressive treatment. It seems that the best strategy is to find an effective treatment and persistently apply moderate treatment, while making ongoing progress. Trying to be overly aggressive can simply lead to slower and reduced progressed.
Best Wishes, Jcancom
manuone, thank for your comment. Yes, it is tough not being on the forum doing my best to help. I think it is fair to say that D, me and probably many others on the forum are hooked on searching for ways to help people with cancer. I find this a highly rewarding use of my time.
Typically when people are first diagnosed with cancer they have absolutely no idea where to start. After a while they might start to realize that traditional medicine is probably only going to be able to offer them so much. I would be so happy if mainstream medicine would step ahead and offer some of the ideas that we talk about here, though the entire system has become locked into a model that does not make a great deal of sense. At the very least this blog hopefully can help guide people seeking answers to a logically consistent way of viewing cancer through a metabolic point of view.
manuone, I am very excited that perhaps we might be able to move to dual metabolic formulation. Perhaps a formulation for tocotrienol?
Sincerely, Jcancom
GgE, I greatly appreciate your comment. I was worried that those on the blog might not have an understanding attitude about asthma. It is often not depicted with sympathy in movies etc.. Admittedly, until the last few months I had very little understanding myself about asthma: even with the public service announcements showing people with COPD on ventilators after long-term smoking I did not have much of a grasp of how respiratory problems could happen. It was difficult for me to place myself in that situation: How can breathing be difficult? I have developed considerable knowledge on this question recently.
Thank yo for commenting on the chlorine in the shower water. There are not that many asthma triggers that I can think of in my house; it is good to consider all the possibilties.
I have bought a spirometer which can help me measure my breathing flow. I consistently blow out at ~430 l/min (PEV) when 600+ is considered normal. I am very glad that I have this meter because I can point to it and say that there is a real and measurable problem. I suspect even doctors in the past might not have fully appreciated the nature of respiratory illness. As I mentioned it is a strange sort of illness. During the day there are no obvious symptoms. Whenever I want I can take a few quick inhales and reach 99% blood oxygen saturation. I think a good explanation of this is that the breathing problem with asthma is more of an exhalation than a ventilation problem. However, during the day when I push out an exhale my windpipe appears to completely shut down about 3/4 the way through.
I have also bought a breath resistance trainer device. The device makes breathing more difficult and thereby helps to build up one's breathing muscles. There are also breathing exercises that appear to be somewhat helpful. The idea with these exercises is to restrict breathing and this apparently can help open up the airway. Research that I have read spoke about a connection between asthma and eczema. I had eczema a few years ago and I was told at that time that it was uncurable. I did not like what I saw with people who received the steroid treatment, so I tried some different natural treatments. I think it was the vitamin D that effectively treated the eczema. It never returned. Another round of vitamin D would make a great deal of sense.
I look forward to getting back to full stregnth.
Thank you again GgE for your understanding and comments.
Jcancom
according to chinese medicine 24 circadian clock 3 to 5 AM the lungs detox.
I use air purifiers in all rooms, once you see how dirty the filters get you don't want to live without 🙂
Your environment may look very clean but there can be mold hiding in walls, mites are everywhere especially in a bedroom you just don´t see those horrible little creatures, etc.
J, you say it came out of nowhere but that's how it always happens, but before there was already a problem it was just not noticeable.
@johan
the PB solution seems to have been very succesful. definitely made the short list even if that was just a single case report and the pacient was much older and therefore might have different mutations. But based on the safety of the drug and the results it really is worth a try.
On a related note I saw it increased slightly the transaminases and the cholesterol. I seem to remember there were also some cholesterol related drugs that helped against cancer. If we find ourselves in such a situation I like to be prepared beforehand. Any ideas?
I consistently blow out at ~430 l/min (PEV) when 600+ is considered normal.
Like in so many health problems, it pays to do your own sleuthing.
When you exhale you are using your diaphragm. If you are taking some anti-allergy medication such as loratadine (Claritin) or any other drug (including syrosingopine) it may be weakening this muscle and reducing your breathing capacity. You may want to study its insert and literature and keep an eye on it.
I would also try moving temporarily to another location for a few days and see if this improved things. Then you'd know it is something in your home. I'd not take anything with me: No clothes, shoes, not even the toothbrush for this test. If you can't move completely, I would at least sleep a few nights out and observe if it made a difference.
Johnny, is Shirley still having pains from her breast cancer bone metastases? If so, how do you deal with them? Is it effective? Any serious side effects? If not anymore, what did you find effective when she had them?
Thanks!
@johan
the PB solution seems to have been very succesful. definitely made the short list even if that was just a single case report and the pacient was much older and therefore might have different mutations. But based on the safety of the drug and the results it really is worth a try.
On a related note I saw it increased slightly the transaminases and the cholesterol. I seem to remember there were also some cholesterol related drugs that helped against cancer. If we find ourselves in such a situation I like to be prepared beforehand. Any ideas?
Hi adifer,
@daniel has published quite a few articles on this:
https://www.cancertreatmentsresearch.com/reduce-cholesterol-in-cancer-cells-to-fight-cancer/
https://www.cancertreatmentsresearch.com/cholesterol-cancer-acat-inhibition/
https://www.cancertreatmentsresearch.com/cholesterol-lowering-statin-drugs-to-fight-cancer/
Hope this helps
Oh yes, the pain is still there, but she is going a bit longer between her meds. She is taking one Percoset, 7.5/325, about every 7 hours, vs 6 hours as prescribed. Plus one Meloxicam daily.
Thank you for asking.
Hi J,
It's so nice to see you back and I am so sorry you had to deal with health challenges. I hope you will be better and better and when there will be a little more time, it will be my pleasure to start researching the field and see how we can better address asthma with new options.
Kind regards,
Daniel
Sorry to hear about your health condition.
You may also consider Tai Chi.
https://www.webmd.com/asthma/news/20081028/tai-chi-may-help-control-asthma
If exercised properly it may result in multiple improvements.
Hi J- I am so happy to see you posting! We all missed you and everything you bring to this site! I have been thinking about you and wondering. I'm sorry you have to go through these challenges with your lungs. Do you have any changes in your WBC profile or increase in eosinophils? Have you had and IgE testing? Have considered herbs such as khella, lobelia, hyssop or sida cordifolia? Hope you feel better soon!
Shanti
Thank you everyone for posting!
I have to admit that I am the type of person who could benefit from support groups, yet attending a support group really is not for me. Virtual support groups, yeah! That makes sense to me!
GgE's comment about permanent harm that can be caused (hearing impairment, etc.) from untreated apnea had me so worried that I ordered an apnea alarm watch first thing this morning and it should arrive tomorrow.
GgE thank you so much! You have made a big difference in my life! Because of you I will not slowly walk into hearing impairment etc. without fully understanding what is happening. The apnea watch will allow me to know the dangers and react accordingly. Taking risks without any idea of what the long term consequences might be is super dangerous. With the watch I will be able to manage this risk much more wisely. I feel so badly for all those people in the past (and probably today) are in the same circumstance as me, possible sleep apnea) who never had someone mention the risk that they were taking.
I am the only one in my household with this respiratory problem. It isn't something specific about the house. If I had to guess, I would say that my specific respiratory environment is quite a bit cleaner than that of the rest of those in the house. Due to my breathing problem I have made a point of clearing everything out of my bedroom to make it as clean as possible.
I did have a cold about the time that this started up which is quite unusual for me, I almost never catch colds. Yet, that was months ago. I don't have a cold now.
I bought some more vitamin D today, with the harranging of those on thread I will try and remember to take 1-2K IU per day.
Thank you again everyone. Asthma is at least a controllable illness, so I should be able to get this under control. The problem seems to be that once people start up conventional treatment they almost are never cured.
I ordered an apnea alarm watch
Thanks for your kind words. We're here to share what we know and you have done much more than your share of helping so I am glad I could help you this time.
If the watch you ordered is capable of measuring your blood oxygen saturation level rather than just a surrogate sign such as body position, it should work. If not, I think you could benefit more from this ring which gently (but progressively) alerts you when you O2 saturation goes below a level you choose until you move to a position where you breath better, all this without completely waking up.
The O2Ring is only about $180 and although I have not personally tested it is, if it performs as described, a great investment in your health.
The same company sells it for the same price on Amazon and directly (see links below), so I'd buy it through Amazon to get Amazon's warranties.
https://getwellue.com/products/o2ring-wearable-pulse-oximeter
Treating your sleep apnea may help you also with your asthma as apnea is deeply damaging not only to all the organs that need a continuous, high oxygen supply such as brain, auditory and visual organs and heart, but also to all the parts of the respiratory system that are forced to go through awful turmoils many times a night, every night of the year. And all this usually happens without the patient's awareness, unfortunately.
Happy to see you back!
Current plan is to stick to the syromet,
Hi Adi, have you observed any changes lately?
You might consider switching from aspirin (ASA) to diclofenac and/or ibuprofen instead; or reducing the ASA dose and adding small amounts of diclofenac and/or ibuprofen (if there are no incompatibilities-in addition to the syromet) per this 2015 paper that found that “ASA treatment had no significant effect on proliferation of HTZ-349, U87MG, or A172 glioma cells.”
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0140613 Ibuprofen and Diclofenac Restrict Migration and Proliferation of Human Glioma Cells by Distinct Molecular Mechanisms. Verena Leidgens et al
How do you administer the syro and metformin: do you dissolve them and add them to his nutritional i.v. solution? Syro is not water soluble. What liquid do you dissolve them with?
I saw it increased slightly the transaminases
This might be due to the aspirin as Tom said.
@gge To add to that, there is a report that diclofenac also inhibits the lactate transporters (MCT4, the tumor specific isoform for which there is no current "official" drug) so it could work alongside syrosingopine.
https://www.ncbi.nlm.nih.gov/pubmed/27236641
This would be a nice way of getting two unrelated clinical benefits from one compound.
Hi Tom,
Thank you. Indeed, that is a good one with anticancer potential. We addressed that and more MCT4 inhibitors and fermentation inhibitors https://www.cancertreatmentsresearch.com/drugs-and-supplements-that-block-fermentation-and-help-fight-cancer/
Kind regards,
Daniel
Both syro and metformin I administer through the peg. We split it in 4 doses since we already give other drugs during those times. I use water, lots of it until the syringe I use looks clean. I do this for all drugs. Some are soluble in water, some are not. Usually around 100 ml of water is enough for a 20 ml syringe to get it clean. I am sure a small amount remains on the syringe, but I suspect some remains in case of water soluble drugs too. Metformin is more complicated to administer since it turns into a sort of gel which once stopped the flow through the peg altogether.
Because of the coronavirus spread it appears it is much more difficult to get the MRI, so the objective way of determining the tumor outcome might have to wait a bit (it was supposed to be in 3 weeks). I'll keep you posted on the results anyway, but it might be later.
In the meantime the lactate level is now a bit below 40 so it appears that we had a strong increase in the first couple of days followed by constant decrease (almost linear to be fair).
Cholesterol is high and triglycerides are very high so we are talking to a nutritionist about what to do next about it - statins could be an option, so I am reading on cholesterol cancer strategies. He eats 400 ml of liquid food per day but since his muscles are mostly gone, no formula fits his condition except of "weigh and see". When the peg was installed(6-7 months ago) he ate around 800 ml of high energy formula but most of his muscles were still in place.
GgE, thank you again. I am grateful for your suggestion. The monitor arrived the other day and I tried it right away that night. What I found was quite surprising. My oxisat did not really go that low during the night while I was recording it. I had thought that perhaps it was going down to very dangerous levels. It really wasn't. It did not go much below 90. That isn't great though it doesn't seem all that abnormal. Very odd.
Thank you also to all that commented. Often it is very helpful to have a range of suggestions and then look for one that seems to fit the best. GgE's suggestion seemed particularly helpful to me because it was an idea that I could quickly implement by buying one of the monitors online and receive delivery within a few days.
I had thought that perhaps it was going down to very dangerous levels. It really wasn't. It did not go much below 90. That isn't great though it doesn't seem all that abnormal.
I'm glad you are so proactive.
I don't want to scare you but in my personal opinion, anytime your ox saturation goes below 95% it is causing you damage. You will not find much support for this idea in the literature but I have seen a lot of life quality gone down the drain because of O2 below 95% for the long run.
Best of luck
in case it helps...
I had lung problems for years that seemed to be worse at night. Drs couldn't figure it out. Eventually I figured it out: allergies to down comforter/pillows and acid reflux (acid from stomach gets into the lungs when you lie down). Worth considering and ruling out those two things.
