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

[sgtbigman]

Just wanted to thank all of those involved in this thread; I am taking notes since this kind of information is good to have on hand for addressing any metabolic/energetic disorder.

@egoy You are doing some incredible work for your family member!

 

[llian]

Egoy, see this study on lidocaine for your mother's type of cancer:

Function of carbonic anhydrase IX in glioblastoma multiforme - PubMed

Carbonic anhydrase (CA) IX is over-expressed in glioblastoma; however, its functions in this context are unknown. Metabolically, glioblastomas are highly glycolytic, leading to a significant lactic acid load. Paradoxically, the intracellular pH is alkaline. We hypothesized that CAIX contributes...

pubmed.ncbi.nlm.nih.gov

Looks promising in test tubes. But it can have serious interactions with phenytoin:

Lidocaine: Side Effects, Uses, Dosage, Interactions, Warnings

Lidocaine is used to relieve nerve pain after shingles (infection with the herpes zoster virus). Learn about side effects, drug interactions, dosages, warnings, and more.

www.rxlist.com

Not sure if that applies at your dose but it makes me nervous. I wouldn't use them together without an okay from the doctor.

I need to seriously decide if i should drop her doctor prescribed meds or not. I already replace indapamide with acetazolamide. If mrchibbs is right then progesterone should replace both phenytoine and phenobarbital as well, also i give her ketotifen too right now which has same sleep effects as phenobarbital
Should i consult with a doctor to see if i should really drop them?

 

[llian]

Just wanted to thank all of those involved in this thread; I am taking notes since this kind of information is good to have on hand for addressing any metabolic/energetic disorder.

@egoy You are doing some incredible work for your family member!

Thank you! I couldn't handle this myself by any means tho. I am so lucky to be on this forum with such great people i can't even think what i would do if i was alone in this whole situation.
Thank you all !

 

[Nemo]

I need to seriously decide if i should drop her doctor prescribed meds or not. I already replace indapamide with acetazolamide. If mrchibbs is right then progesterone should replace both phenytoine and phenobarbital as well, also i give her ketotifen too right now which has same sleep effects as phenobarbital
Should i consult with a doctor to see if i should really drop them?

Egoy, here's more info on phenytoin:

Phenytoin: MedlinePlus Drug Information

Phenytoin: learn about side effects, dosage, special precautions, and more on MedlinePlus

medlineplus.gov

They give anti-seizure drugs after brain tumor removal because some patients develop postoperative epileptic seizures. In this study, 4.9% of patients developed seizures:

Postoperative epileptic seizures after brain tumor surgery

We sought to examine the incidence of postoperative epileptic seizures, particularly nonconvulsive status epilepticus (NCSE), in brain tumor patients …

www.sciencedirect.com

Almost half of patients who continued a post-brain-surgery anti-seizure drug got seizures anyway:

Outcomes after discontinuation of antiepileptic drugs after surgery in patients with low grade brain tumors and meningiomas - PubMed

Some places recommend discontinuing these drugs slowly:

Dilantin Withdrawal

It is not recommended that you stop taking Dilantin suddenly, as withdrawal symptoms may potentially occur. This eMedTV page covers the possible dangers of Dilantin withdrawal and explains how your doctor may help prevent withdrawals from the medicine.

epilepsy.emedtv.com

Here's Ray on all the things that prevent seizures, like aspirin and progesterone and all that CO2 she is going to be getting from that thiamine and acetazolamide you're giving her:

Epilepsy and Progesterone

Ray Peat

raypeat.com

 

[mrchibbs]

Consulting a doctor (or a pharmacist) is often helpful, unless the individual is confrontational instead of caring and compassionate.

They have no right to force you to use certain medications instead of others, and could reasonably help you understand interactions, that is if they are a good person.

It's always good to bring evidence and studies and have a justification when going to speak with a doctor.

But at the end, you have a good chance of being more helpful to your mom than any doctor would. I've seen this happen time and time again in my personal life.

That being said, I see no problem with substituting progesterone for the aforementioned drugs, and going with Ray's suggestions as well.

 

[Summer]

Egoy, I hope all is going well. I’ve been keeping up on this thread especially since I’ve found myself in a similar situation with my mom.

Do you all think these recommendations would apply to ovarian cancer too? Maybe I missed it but how much progesterone is recommended? Is ~20mg okay to start with? And aspirin/k2 ratio?

 

[llian]

Egoy, I hope all is going well. I’ve been keeping up on this thread especially since I’ve found myself in a similar situation with my mom.

Do you all think these recommendations would apply to ovarian cancer too? Maybe I missed it but how much progesterone is recommended? Is ~20mg okay to start with? And aspirin/k2 ratio?

Lately i've been using 400mg progesterone bough from pharma, 3g aspirin with 3g niacinamide also i still waiting for my k2 to arrive but if i had it on hand i think 15mg k2 should be enough. Also i use acetazolamide, cyproheotadine and a peaty diet. I forgot the recommended ratio for aspirin/k2 tho but if you go with higher doses like 6g then use 20mg k2
These are haidut's quotes on cancer:
"I think cancer, every type included, it is just a metabolic problem where cells that has a deranged metabolism group up and form tumors, the oxidation status inside those cells is improved, which is what raising CO2 levels by chemicals like acetazolamide and methylene blue does, they can revert back to normal and the tumor simply becomes normal tissue again. So, reverting back from "cancer" (stressed) to normal is very much possible and has been demonstrates multiple times, and in rare cases"

So i think cancer it is just a more sensitive form of diabetes which requires a good diet, one that can raise metabolism and lower stress hormones and a combination of drugs that can keep lactate at bay and improving CO2 levels.

I can tell my mother gets better as time pass, today she even got out her bed, besides her "irreversible" nerve damage due tumor removing surgery :)

Anyway, i wish you good luck and always stay positive in this !

 

[Nemo]

I can tell my mother gets better as time pass, today she even got out her bed, besides her "irreversible" nerve damage due tumor removing surgery :)

Anyway, i wish you good luck and always stay positive in this !

Very glad to hear.

That nerve damage is reversible too. All the stuff you're doing is already helping it.

 

[Summer]

Lately i've been using 400mg progesterone bough from pharma, 3g aspirin with 3g niacinamide also i still waiting for my k2 to arrive but if i had it on hand i think 15mg k2 should be enough. Also i use acetazolamide, cyproheotadine and a peaty diet. I forgot the recommended ratio for aspirin/k2 tho but if you go with higher doses like 6g then use 20mg k2
These are haidut's quotes on cancer:
"I think cancer, every type included, it is just a metabolic problem where cells that has a deranged metabolism group up and form tumors, the oxidation status inside those cells is improved, which is what raising CO2 levels by chemicals like acetazolamide and methylene blue does, they can revert back to normal and the tumor simply becomes normal tissue again. So, reverting back from "cancer" (stressed) to normal is very much possible and has been demonstrates multiple times, and in rare cases"

So i think cancer it is just a more sensitive form of diabetes which requires a good diet, one that can raise metabolism and lower stress hormones and a combination of drugs that can keep lactate at bay and improving CO2 levels.

I can tell my mother gets better as time pass, today she even got out her bed, besides her "irreversible" nerve damage due tumor removing surgery :)

Anyway, i wish you good luck and always stay positive in this !

Thank you so much for the response and update! Raising metabolism and lowering stress are indeed important. My mom questions a lot of what I try to explain to her regarding this. I’m very happy to hear your mother’s condition is improving. Much love to both of you.

 

[J.R.K]

Stay the course and give it time, I wish you and your Mom all the best and send nothing but positive vibes to you and yours. Stay well and be strong!!

 

[DiabloQueso]

One topic I haven't seen discussed much is blood flow and its unique impact on brain tumor growth.


How tumors affect bloodflow in the brain (the last paragraph sounds like a terrible potential "solution", but the research on how the growth occurs is still useful)

Study shows how brain tumor cells move and damage tissue, points to possible therapy

A federally funded study shows how invading glioma cells disrupt brain connections and break down the blood brain barrier.

www.uab.edu

Glioma cells traveling along blood vessels literally cut the connection of astrocytic endfeet with the vessels and push them out of the way,” said Sontheimer. “By disrupting this important neural connection, adverse cognitive effects could be expected. Additionally, our study showed that gliomas then take control of the blood vessels for their own ends. And those ends are primarily to obtain nutrients from blood so that they can continue to grow and spread.”

Sontheimer’s team says the glioma cells tend to congregate at blood vessel junctions, almost as if camping alongside a stream where it joins a river. The ready supply of nutrients would allow the cell to grow into a larger tumor mass.

By traveling on the outside of a blood vessel, glioma cells are able to access nutrients from the blood stream. As a side effect to that process, they damage the blood brain barrier. The barrier, a layer of endothelial cells, protects the brain by restricting passage of harmful substances from the blood stream into brain tissue.

The barrier becomes weakened, and begins to leak. A leak across the barrier can cause severe damage to brain tissue.

Please keep us updated in the coming months. Best wishes.

 

[jondoeuk]

View: https://www.youtube.com/watch?v=eS4wAq4MAbY

 

[llian]

One topic I haven't seen discussed much is blood flow and its unique impact on brain tumor growth.


How tumors affect bloodflow in the brain (the last paragraph sounds like a terrible potential "solution", but the research on how the growth occurs is still useful)

Study shows how brain tumor cells move and damage tissue, points to possible therapy

A federally funded study shows how invading glioma cells disrupt brain connections and break down the blood brain barrier.

www.uab.edu

Please keep us updated in the coming months. Best wishes.

What can i do about this?

 

[llian]

@mrchibbs man i just found this study saying that protein intake for cancer patient should be like 1.2-1.5g/kg. Over 100g should be absolutely necessary for her? She weights 57kg rn. She have trouble with appetite and often struggles to eat all meals and usually cant reach 100g protein.. tyromax doesnt do anything for her appetite, or cypro or even pyrucet she still cant stand sugar. She struggle to eats rn she force herself to eat all meals, gelatin especially in anything, even stew.
Overall she is doing fine but the appetite is a big problem right now for her i dont know what to do anymore nothing increases it.

 

[Nemo]

@mrchibbs man i just found this study saying that protein intake for cancer patient should be like 1.2-1.5g/kg. Over 100g should be absolutely necessary for her? She weights 57kg rn. She have trouble with appetite and often struggles to eat all meals and usually cant reach 100g protein.. tyromax doesnt do anything for her appetite, or cypro or even pyrucet she still cant stand sugar. She struggle to eats rn she force herself to eat all meals, gelatin especially in anything, even stew.
Overall she is doing fine but the appetite is a big problem right now for her i dont know what to do anymore nothing increases it.

Egoy, she'll get her appetite back.

It took me over six weeks to eat more than 400-500 calories a day.

Just keep moving forward, keep making her tasty treats.

 

[Nemo]

What can i do about this?

Just keep doing what you're doing, egoy.

 

[Summer]

I wonder if smoothies with gelatin added would be a good option for her. It’s much easier to up caloric intake in liquid form.
But you did say she doesn’t want sugar right now. Hmm.

 

[llian]

Just keep doing what you're doing, egoy.

Thank you so much ! I will be keeping up with her treatment she is feeling overall better and her face got much younger since she uses progesterone and dhea and other stuff i got recommended here. She even gained some weight I am so happy for her also my family noticed her condition improving and it did increased our hope so much. This positive change in so short period of time is really astonishing. Ty again !

 

[mrchibbs]

@mrchibbs man i just found this study saying that protein intake for cancer patient should be like 1.2-1.5g/kg. Over 100g should be absolutely necessary for her? She weights 57kg rn. She have trouble with appetite and often struggles to eat all meals and usually cant reach 100g protein.. tyromax doesnt do anything for her appetite, or cypro or even pyrucet she still cant stand sugar. She struggle to eats rn she force herself to eat all meals, gelatin especially in anything, even stew.
Overall she is doing fine but the appetite is a big problem right now for her i dont know what to do anymore nothing increases it.

If she can't eat that much, certainly don't force her to eat it. Over 100g is not necessary, but trying to get closer to 100g rather than 50g is really crucial I think. Protein is essential for things liver function and to prevent her body from breaking down her own tissues.

Cypro is typically excellent for appetite. Just do as @Nemo said and keep doing what you're doing. Try to make the meals she really wants to eat. Find little tricks to get her to eat smaller portions more regularly.

Thank you so much ! I will be keeping up with her treatment she is feeling overall better and her face got much younger since she uses progesterone and dhea and other stuff i got recommended here. She even gained some weight I am so happy for her also my family noticed her condition improving and it did increased our hope so much. This positive change in so short period of time is really astonishing. Ty again !

That is very encouraging indeed, especially the weight gain. Now if she can get her appetite back that's the next step.

 

[llian]

If she can't eat that much, certainly don't force her to eat it. Over 100g is not necessary, but trying to get closer to 100g rather than 50g is really crucial I think. Protein is essential for things liver function and to prevent her body from breaking down her own tissues.

Cypro is typically excellent for appetite. Just do as @Nemo said and keep doing what you're doing. Try to make the meals she really wants to eat. Find little tricks to get her to eat smaller portions more regularly.



That is very encouraging indeed, especially the weight gain. Now if she can get her appetite back that's the next step.

I know she often forces herself to eat what i give her like juices, fish etc because she wanna see me happy and my father aswell she never ask for food, never. She always feeling "full" but still eats. I always said to her if she is not really hungry then she can skip some meal but she eats to make us happy i think.. i mean no way she likes gelatin but still eats it and says like "it was fine" .. i worry she is stressing herself doing this and making herself worse.

Btw.. i can put cyproheptadine on some piece of fruit like mango and give it to her? Or i can put in some juice or something? It is so gross that taste i tried 1 drop on my tongue and it is awful. Same with pyrucet, i can put it in OJ @Nemo ?