Brain Cancer stage 4 glioblastoma giant cells. What options are available?

[youngsinatra]

Maybe this is inappropriate to compare, but I had a week of really low hunger, pretty hard fatigue, dizziness, slight nausea and just not wanting to eat anything. Basically no desire to eat. I ate a less than half of what I normally eat for a week or more. I normally crush 3-4K calories a day and in the last days I didn‘t even reached nearly 2K calories. No wonder I felt lethargic and low energy with such low calorie intake.

Today morning I took 500mg of B1 and 300mg of magnesium and since then felt a tremendous boost in energy and had a pretty big hunger and desire to eat.

 

[llian]

Maybe this is inappropriate to compare, but I had a week of really low hunger, pretty hard fatigue, dizziness, slight nausea and just not wanting to eat anything. Basically no desire to eat. I ate a less than half of what I normally eat for a week or more. I normally crush 3-4K calories a day and in the last days I didn‘t even reached nearly 2K calories. No wonder I felt lethargic and low energy with such low calorie intake.

Today morning I took 500mg of B1 and 300mg of magnesium and since then felt a tremendous boost in energy and had a pretty big hunger and desire to eat.

Thanks for advice !
I also see great testimonials from B1 supplementation like yours, i remember when she was healthiest she took B1 injections and like 4-5g aspirin with baking soda. Things took a turn to bad really quickly, i don't know why honestly.. she can't tolerate aspirin at all now, everything irritates her intestine and gives her vomit reflux

I have huge hopes regarding insulin, dr. Peat seems to have a positive opinion on it, saying its antiinflammatory. I dont know the dosage tho

 

[Mrscorpion360]

Thanks for advice !
I also see great testimonials from B1 supplementation like yours, i remember when she was healthiest she took B1 injections and like 4-5g aspirin with baking soda. Things took a turn to bad really quickly, i don't know why honestly.. she can't tolerate aspirin at all now, everything irritates her intestine and gives her vomit reflux

I have huge hopes regarding insulin, dr. Peat seems to have a positive opinion on it, saying its antiinflammatory. I dont know the dosage tho

Have you tried asking Nemo about this?

 

[mrchibbs]

Thanks for advice !
I also see great testimonials from B1 supplementation like yours, i remember when she was healthiest she took B1 injections and like 4-5g aspirin with baking soda. Things took a turn to bad really quickly, i don't know why honestly.. she can't tolerate aspirin at all now, everything irritates her intestine and gives her vomit reflux

I have huge hopes regarding insulin, dr. Peat seems to have a positive opinion on it, saying its antiinflammatory. I dont know the dosage tho

We're all so sad @egoy

Clearly the supplements are too much for her right now, and since she seems to be in a very critical state it's tricky to know what to do. I'd try to give her GI tract a break of all supplements.

One thing which worries me is that since she's eating so little calories, her body is probably in full blown catabolic mode, and that's a very bad sign. Has she lost weight over the past few days? I assume so?

I remember reading that a sports drink type solution with electrolytes (potassium, sodium, magnesiu, calcium etc.) was enough to prevent 90% of tissue wasting during low calorie situations. Progesterone has also been shown to maintain thermogenesis (body heat) even with severe calorie restriction, so I still think it's essential to use topically as before.

Hopefully she pulls through and you can figure out how to use insulin.

 

[Missenger]

Aspirin can irritate the gut if you take it for too long at too high of a dosage for some people (?), I just never see people get a good reaction from it after a while no matter what Ray says about it, I have to wonder if it's because of cell phones or something.

 

[mrchibbs]

Aspirin can irritate the gut if you take it for too long at too high of a dosage for some people (?), I just never see people get a good reaction from it after a while no matter what Ray says about it, I have to wonder if it's because of cell phones or something.

I think most people don't take it properly. It needs to be dissolved in boiling water and baking soda, and gelatin added to it.

And then taking it with food is important.

Just taking tablets or the powder is too harsh IMO

 

[llian]

@mrchibbs @Missenger @youngsinatra
Hey guys do you think Cardenosine is a safe supplement to lower lactic acid for her?
Im worried because when i asked dr. Peat about ATP he said this:

I don’t know of any safe way to deliver ATP—it has many inflammatory effects.

I cut aspirin for now, Pyrucet is mixed with 100% ethanol and applied topically, i gave her digestive enzymes but her appetite still didn't came back, but her vomit reflux/nausea symptom improved a little.

I hope Insulin will bring her appetite back, still i don't know the dosage for this, what i found is like 0.1 units per kg but I'm not sure

 

[youngsinatra]

@mrchibbs @Missenger @youngsinatra
Hey guys do you think Cardenosine is a safe supplement to lower lactic acid for her?
Im worried because when i asked dr. Peat about ATP he said this:


I cut aspirin for now, Pyrucet is mixed with 100% ethanol and applied topically, i gave her digestive enzymes but her appetite still didn't came back, but her vomit reflux/nausea symptom improved a little.

I hope Insulin will bring her appetite back, still i don't know the dosage for this, what i found is like 0.1 units per kg but I'm not sure

Cutting aspirin seems smart, especially if digestion is off. No matter how I prepare it, it always leads to digestive irritation and diarrhea for me.

I‘d use thiamine first for bringing down lactic acid, it‘s used intravenously in clinical settings for lactic acidosis. Sufficient magnesium is also needed for PDH activity synergistically with B1.

I don‘t know a thing about insulin usage!

 

[mrchibbs]

Since she seems in a critical state, and her GI tract is irritated, it's maybe a time for some IV thiamine like you did before.

But you really need to find an electrolyte beverage that she'll drink even if she has no appetite. There are some good options in stores.

It's a good idea to mix the pyrucet with some alcohol, which should increase absorption even more.

Maybe you can use an insulin pen that diabetics use for injection of insulin, starting with a low dose.

 

[youngsinatra]

Yes intravenous B1 seems like a good option.

 

[llian]

Since she seems in a critical state, and her GI tract is irritated, it's maybe a time for some IV thiamine like you did before.

But you really need to find an electrolyte beverage that she'll drink even if she has no appetite. There are some good options in stores.

It's a good idea to mix the pyrucet with some alcohol, which should increase absorption even more.

Maybe you can use an insulin pen that diabetics use for injection of insulin, starting with a low dose.

Yes intravenous B1 seems like a good option.

Thanks guys, i will try B1 injections again until her intestine gets better and then continue with regular b1 pills. It worked before, also with insulin too my hopes got a little higher. My friend is a doctor and she said she can get me pharma insulin.

How long to wait before reintroducing aspirin again to her(this time with dissolved gelatin with baking soda)?

 

[mrchibbs]

Thanks guys, i will try B1 injections again until her intestine gets better and then continue with regular b1 pills. It worked before, also with insulin too my hopes got a little higher. My friend is a doctor and she said she can get me pharma insulin.

How long to wait before reintroducing aspirin again to her(this time with dissolved gelatin with baking soda)?

No until she gets her appetite back. All the supplements she took over the past 2-3 months have probably been irritating her gut to a great degree.

You dissolve say 500mg of aspirin in 0.5inch of boiling water at the bottom of a glass, add around 1/3tsp of baking soda, and wait for all the aspirin powder to be dissolved. Then you add gelatin, it will dissolve too with a little stirring. This is taken with a meal.

And I'm sorry to keep saying the same stuff but you need to find sometype of drink/broth/juice that she will drink which has electrolytes to compensate for her barely eating otherwise she'll lose more tissues.

And do keep us updated on the insulin, if Ray recommends it at this stage, it has to be important.

 

[llian]

No until she gets her appetite back. All the supplements she took over the past 2-3 months have probably been irritating her gut to a great degree.

You dissolve say 500mg of aspirin in 0.5inch of boiling water at the bottom of a glass, add around 1/3tsp of baking soda, and wait for all the aspirin powder to be dissolved. Then you add gelatin, it will dissolve too with a little stirring. This is taken with a meal.

And I'm sorry to keep saying the same stuff but you need to find sometype of drink/broth/juice that she will drink which has electrolytes to compensate for her barely eating otherwise she'll lose more tissues.

And do keep us updated on the insulin, if Ray recommends it at this stage, it has to be important.

Can she do a single dose of IV thiamine per day or does she need to do them multiple times? What dosage?

500mg OJ is enough for electrolytes?

I will try IV thiamine first, if she doesn't improve then i'll give insulin a try. I will give updates for sure

I found this interesting study on insulin:

Insulin treatment in cancer cachexia: effects on survival, metabolism, and physical functioning - PubMed

Insulin is a significant metabolic treatment in multimodal palliation of weight-losing cancer patients.

pubmed.ncbi.nlm.nih.gov

They only gave patients 0.05units/kg per day and it worked pretty well from what i see, but i still want to keep it as a last option.

Also what i found today is that she suffers from dyspagia which keeps her from eating much, i don't have any idea on how to treat it, maybe goes with metabolism alltogether?.

 

[mrchibbs]

Can she do a single dose of IV thiamine per day or does she need to do them multiple times? What dosage?

500mg OJ is enough for electrolytes?

I will try IV thiamine first, if she doesn't improve then i'll give insulin a try. I will give updates for sure

I found this interesting study on insulin:

Insulin treatment in cancer cachexia: effects on survival, metabolism, and physical functioning - PubMed

Insulin is a significant metabolic treatment in multimodal palliation of weight-losing cancer patients.

pubmed.ncbi.nlm.nih.gov

They only gave patients 0.05units/kg per day and it worked pretty well from what i see, but i still want to keep it as a last option.

Also what i found today is that she suffers from dyspagia which keeps her from eating much, i don't have any idea on how to treat it, maybe goes with metabolism alltogether?.

I'm the resident expert on dysphagia, no joke. I have a PhD in choking at this point.

It's really about magnesium, her cells can't retain magnesium (because she's in a hypothyroid, cancer metabolic state). With thyroid function supoptimal, the cells can't retain magnesium, which is necessary to produce ATP and relax. The esophageal sphincter gets rigid and cannot relax/contract properly and food gets stuck.

Topical magnesium, and a magnesium-rich drink are essential. So I would apply magnoil or any topical magnesium spray/balm + progesterone on the skin, back, chest etc.

Most OJ is not sufficient. Go to the store or amazon and try to find a sports drink gatorade type powder with a flavour that she likes (lime, fruit punch, whatever), something that has magnesium and other electrolytes. Here's an example: (like this)

A steady supply of these electrolytes will also prevent cachexia, which is critical in her state.

Daher, Ronald et al. “Consequences of dysthyroidism on the digestive tract and viscera.” World journal of gastroenterology vol. 15,23 (2009): 2834-8. doi:10.3748/wjg.15.2834

Dysphagia is not uncommon in hypothyroidism and may be related to esophageal motility abnormalities, including decreases in the amplitude and velocity of peristalsis and a decrease in lower esophageal sphincter pressure. These abnormalities correct with thyroid replacement.

The Gastrointestinal Tract and Liver in Hypothyroidism – Functional Performance Systems (FPS)

Eastwood GL, Braverman LG, White EM, et al. Reversal of lower esophageal sphincter hypotension and esophageal aperistalsis after treatment for hypothyroidism. J Clin Gastroenterol 1982;4:307.

Managing magnesium imbalance : Nursing2020 Critical Care


Dysphagia following uncomplicated thyroidectomy: a systematic review - PubMed/


Hypomagnesemia and smooth muscle contractility: diffuse esophageal spasm in an old female patient - PubMed/

 

[youngsinatra]

I think a daily injection of thiamine for a week should be a good start. I don‘t know which product you are using for the thiamine injection. Can you share it with us?
The ones I know have 100mg/mL and a single injection dose typically contains 2mL.

I don‘t know if a intra-muscular injection is really comparable to a 24h intra-venous (IV) treatment.

 

[akgrrrl]

Egoy, thankyou for being such a warrior human. I wish a good outcome for everyone inspired by your desire to heal your "patient", and specially to her.
You are in good company here, and
Reading this thread again showed me how much I miss Nemo, another of our great warriors, taken down unnecessarily.

Can she do a single dose of IV thiamine per day or does she need to do them multiple times? What dosage?

500mg OJ is enough for electrolytes?

I will try IV thiamine first, if she doesn't improve then i'll give insulin a try. I will give updates for sure

I found this interesting study on insulin:

Insulin treatment in cancer cachexia: effects on survival, metabolism, and physical functioning - PubMed

Insulin is a significant metabolic treatment in multimodal palliation of weight-losing cancer patients.

pubmed.ncbi.nlm.nih.gov

They only gave patients 0.05units/kg per day and it worked pretty well from what i see, but i still want to keep it as a last option.

Also what i found today is that she suffers from dyspagia which keeps her from eating much, i don't have any idea on how to treat it, maybe goes with metabolism alltogether?.

 

[Jon2547]

I am not giving medical advice. Only thing I can say is what I would do in that position. I would try dry fasting. August Dunning is the expert. He does a 7 day dry fast from time to time and it has radical effects.

 

[llian]

Egoy, thankyou for being such a warrior human. I wish a good outcome for everyone inspired by your desire to heal your "patient", and specially to her.
You are in good company here, and
Reading this thread again showed me how much I miss Nemo, another of our great warriors, taken down unnecessarily.

Thank you so much, akgrrrl !
It was really incredible how much support @Nemo gave me and the knowledge she shared here with everyone, she is truly a warrior considering she battled this same cruel disease and won. I wish her a great peaceful life, her story is really inspiring and It made me go through this tough situation at the very beggining of the road. Much appreciation to her !!

 

[llian]

I recieved this email from dr. Peat in regards to insulin:

Q: Dr. Peat, 0.1 units per kg of Insulin is a good dose for her? Should be given 1 single dose per day or throughout the day?

, Regards !

A:It depends on how well she reacts to that; she might need more.

So it seems that 0.05/kg/day as my first thought could be more than that.

I still don't have any idea whenever dr. Peat referred as "more" as a single per day dose or multiple times a day.
@mrchibbs

 

[mrchibbs]

I recieved this email from dr. Peat in regards to insulin:


So it seems that 0.05/kg/day as my first thought could be more than that.

I still don't have any idea whenever dr. Peat referred as "more" as a single per day dose or multiple times a day.
@mrchibbs

Yes he means multiple small doses, and/or slowly increasing the individual doses with time.

Start with the lowest dose possible and look for improvement in symptoms, that's the only way to experiment with this.