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

[llian]

It seems that my mom's symptoms got worse than ever unfortunately.... this shows in her new blood test too. She developed dementia like symptoms now, barely eats 500kcal a day, has CFS/ME, excessive day time sleeping. Help guys what should i do now?
@mrchibbs @Nemo @Hans @haidut @youngsinatra @Amazoniac @yerrag

Regardless of giving her 10kiu of vitamin D for 1 month it barely increased with 1.2

Also i gave her 15mg dhea with 200mg progesterone since androgens were low, now they got better, but her LDH got higher than ever and ESR too. Maybe this is why she has low energy/sleeps all day long now.

Also ferritin/Iron serum went up but she took aspirin and kept low iron diet.
Maybe she can't use copper right and this is why blood iron got up? This might he involved in her dementia like symptoms ?

And WBC got up too, maybe endotoxins? I should give her one course of rifaximin/ampicillin or 50g activated charcoal with flowers of sulphur to clear that up?

It is weird to me that regardless of low PTH, her vit D is on very lowish side.

Also why aldosterone skyrocketed like that? Should i give her pregnenolone to block it with progesterone?

Should i keep up with 10kiu of vit D?

How i can normalize LDH,ESR and WBC?


Here are the new blood tests:

	..............................
CBC
WBC	6.9	4-10
Neutrophil%	53.8%	40.1-69.8%
Eosinophils%	2.3%	0.9-7.6%
Bazophile%	0.7%	0.2-1.4%
Lymphocytes%	37.6%	21.6-48.7%
Monocytes%	5.6%	3.9-10.2%
RBC	4.75	4.15-5.8
Hemoglobin(HGB)	14.3	11.5-16
Hematocrit(HCT)	41.7%	37-47%
MCV	88	80-100
MCH	30.1	27-32
MCHC	34.3	32-36
RDW	14.1%	11-15%
Platelets(PLT)	291	150-500
Average Platelet(PLT)	8.7	6-11
Thrombocrit(PCT)	0.254%	0.15-0.5%
PDW	14.8%	11-18%
Neutrophils	3.71	2-7.5
Eosinophils	0.16	0-0.5
Lymphocytes	2.60	1-4
Basophil	0.05	0-0.2
Monocytes	0.38	0.2-1
-	-	-
Specific Proteins
CRP	1.80	<5.0
-	-	-
Hematology
ESR	26	Womens:<20 Men: <13
-	-	-
Biochemistry
Ferritin	89.52	Adults: 10-120
LDH	381.29	150-300
Sideremia	77.23	40-155
Copper Serum	132	74-122
Phosphorus serum	1.48	0.78-1.65
CK	33.97	33-211
Metabolic markers
Aldosteron serum	394.54	13.3-157.5
TSH	0.527	0.4-4
FT4	0.886	0.8-1.9
PTH	27.2	11-67
Androstenedione	1.47	0.3-3.3
Dhea	4.57	0.6-5.8
25-OH Vitamin D	24.6	Acceptable: 20-30 Optimal: 30-100 Toxic: >100

Calcium serum	10.14mg/dL​	8.7 - 10.4 / mg/dL​
Calcium ion serum	4.18mg/dL​	3.48 - 5.17 / mg/dL​

SHBG (Sex Hormone Binding Globuline)

85.6 nmol/l​

18 - 144 / nmol/l​

 

[youngsinatra]

It seems that my mom's symptoms got worse than ever unfortunately.... this shows in her new blood test too. She developed dementia like symptoms now, barely eats 500kcal a day, has CFS/ME, excessive day time sleeping. Help guys what should i do now?
@mrchibbs @Nemo @Hans @haidut @youngsinatra @Amazoniac @yerrag

Regardless of giving her 10kiu of vitamin D for 1 month it barely increased with 1.2

Also i gave her 15mg dhea with 200mg progesterone since androgens were low, now they got better, but her LDH got higher than ever and ESR too. Maybe this is why she has low energy/sleeps all day long now.

Also ferritin/Iron serum went up but she took aspirin and kept low iron diet.
Maybe she can't use copper right and this is why blood iron got up? This might he involved in her dementia like symptoms ?

And WBC got up too, maybe endotoxins? I should give her one course of rifaximin/ampicillin or 50g activated charcoal with flowers of sulphur to clear that up?

It is weird to me that regardless of low PTH, her vit D is on very lowish side.

Also why aldosterone skyrocketed like that? Should i give her pregnenolone to block it with progesterone?

Should i keep up with 10kiu of vit D?

How i can normalize LDH,ESR and WBC?


Here are the new blood tests:

	..............................
CBC
WBC	6.9	4-10
Neutrophil%	53.8%	40.1-69.8%
Eosinophils%	2.3%	0.9-7.6%
Bazophile%	0.7%	0.2-1.4%
Lymphocytes%	37.6%	21.6-48.7%
Monocytes%	5.6%	3.9-10.2%
RBC	4.75	4.15-5.8
Hemoglobin(HGB)	14.3	11.5-16
Hematocrit(HCT)	41.7%	37-47%
MCV	88	80-100
MCH	30.1	27-32
MCHC	34.3	32-36
RDW	14.1%	11-15%
Platelets(PLT)	291	150-500
Average Platelet(PLT)	8.7	6-11
Thrombocrit(PCT)	0.254%	0.15-0.5%
PDW	14.8%	11-18%
Neutrophils	3.71	2-7.5
Eosinophils	0.16	0-0.5
Lymphocytes	2.60	1-4
Basophil	0.05	0-0.2
Monocytes	0.38	0.2-1
-	-	-
Specific Proteins
CRP	1.80	<5.0
-	-	-
Hematology
ESR	26	Womens:<20 Men: <13
-	-	-
Biochemistry
Ferritin	89.52	Adults: 10-120
LDH	381.29	150-300
Sideremia	77.23	40-155
Copper Serum	132	74-122
Phosphorus serum	1.48	0.78-1.65
CK	33.97	33-211
Metabolic markers
Aldosteron serum	394.54	13.3-157.5
TSH	0.527	0.4-4
FT4	0.886	0.8-1.9
PTH	27.2	11-67
Androstenedione	1.47	0.3-3.3
Dhea	4.57	0.6-5.8
25-OH Vitamin D	24.6	Acceptable: 20-30 Optimal: 30-100 Toxic: >100

Calcium serum	10.14mg/dL​	8.7 - 10.4 / mg/dL​
Calcium ion serum	4.18mg/dL​	3.48 - 5.17 / mg/dL​

SHBG (Sex Hormone Binding Globuline)

85.6 nmol/l​

18 - 144 / nmol/l​

Well lack of hunger is a true problem in that situation, I assume? We need to get your mother to eat food.

Did you add in zinc supplementation or zinc-rich foods? I think it can restore appetite if it was low before. I remember that the zinc was low in the last blood test, or am I wrong?

I‘ve heard that cyproheptadine helps with stimulating hunger, but I‘d love to hear other peoples advice on that matter because I don‘t have any experience with cypro. It could also help with endotoxin / digestion issues I think.

Wishing you the best! We‘re here for you brother.

 

[rei]

Should i keep up with 10kiu of vit D?

Yes. 10k is average adult maintenance dose when not getting any from sun. Old and ill people absorb it worse and since you seem to do frequent labs, i would increase it to 15-20k couple days per week. Better to get it in pieces with every meal instead of one big dose.

 

[llian]

Well lack of hunger is a true problem in that situation, I assume? We need to get your mother to eat food.

Did you add in zinc supplementation or zinc-rich foods? I think it can restore appetite if it was low before. I remember that the zinc was low in the last blood test, or am I wrong?

I‘ve heard that cyproheptadine helps with stimulating hunger, but I‘d love to hear other peoples advice on that matter because I don‘t have any experience with cypro. It could also help with endotoxin / digestion issues I think.

Wishing you the best! We‘re here for you brother.

It's been 1 month since adding 25mg zinc gluconate supplementation for her in hope i'd fix high copper issue(last time she had high copper, i didn't tested her zinc) but unfortunately it wasn't the case, i think @Amazoniac got it right(thank you so much for the help) she needed vitamin C to put copper in proper use. I will add it in hope to fix her high copper.
It seems like cyproheptadine isn't doing much for her appetite, even higher doses of 4mg, right now i lowered it at 2mg and added ketotifen 1mg in morning to see if her appetite will increase. Today she ate better than other days but still not enough calories.
Thank you for your support man ! I am so happy i found such wonderful persons here, without you guys i would be completely lost. Thanks again !

 

[sweetpeat]

Should i keep up with 10kiu of vit D?

There was an interview with haidut a while back where he said it can take up to 6 months for vitamin D levels to rise after you start supplementing because the liver will hold onto it at first if it's deficient.

 

[llian]

Yes. 10k is average adult maintenance dose when not getting any from sun. Old and ill people absorb it worse and since you seem to do frequent labs, i would increase it to 15-20k couple days per week. Better to get it in pieces with every meal instead of one big dose.

I think her poor absorbtion might be due cofactors deficiency like calcium. In the last month she barely passed 1g of calcium per day. I hope her appetite will improve in the following days i increased her aspirin dosage and added ketotifen. I will try to detox her with 50g of charcoal with MCT oil and a lymphatic antibiotic with vit E for a week in hope it will cleanse her of endotoxins.

 

[youngsinatra]

I have access to an vitamin D calculator for resolving vitamin D deficiency by an german scientist called Dr. Rheimund van Helden who specialized in vitamin D therapy.

I think in such a condition it is smart to resolve the deficiency ASAP and it is true that it sometimes takes months with normal physiological amounts of vitamin D3.

How much kg does she weigh at the moment?

 

[llian]

I have access to an vitamin D calculator for resolving vitamin D deficiency by an german scientist called Dr. Rheimund van Helden who specialized in vitamin D therapy.

I think in such a condition it is smart to resolve the deficiency ASAP and it is true that it sometimes takes months with normal physiological amounts of vitamin D3.

How much kg does she weigh at the moment?

She weights 52kg and her height is 1.60cm
Surprisingly she mantain this weight since we started this treatment, regardless of low calorie intake, i guess cyproheptadine is really an wonder drug xD
It would be nice to know how much vitamin D she needs to correct this deficiency. Btw should i add vitamin A too in a ratio of 5:1 ? I have palmitate at hand, im worried to feed her liver since her copper is high, i bet her ceruloplasmin is on lowish side too, maybe vitamin C can put it to good use.

 

[youngsinatra]

She weights 52kg and her height is 1.60cm
Surprisingly she mantain this weight since we started this treatment, regardless of low calorie intake, i guess cyproheptadine is really an wonder drug xD
It would be nice to know how much vitamin D she needs to correct this deficiency. Btw should i add vitamin A too in a ratio of 5:1 ? I have palmitate at hand, im worried to feed her liver since her copper is high, i bet her ceruloplasmin is on lowish side too, maybe vitamin C can put it to good use.

My calculator says that she would require 18‘000 IU per day for an initial phase of 10 days to reach 60ng/ml.

I think sublingually or orally would work best. This opens up a next question? Did you use it topically or orally?


The maintenance dosage afterwards would be 4000 IU daily.

In my opinion and experience high amounts of retinol can cause vitamin D levels to not really improve even in higher amounts.

Do you gave her retinol while upping the vitamin D to 10K IU? If so, maybe this contributes to still low levels.

I personally would keep vitamin A intake around 5000 IU.

 

[llian]

My calculator says that she would require 18‘000 IU per day for an initial phase of 10 days to reach 60ng/ml.

I think sublingually or orally would work best. This opens up a next question? Did you use it topically or orally?


The maintenance dosage afterwards would be 4000 IU daily.

In my opinion and experience high amounts of retinol can cause vitamin D levels to not really improve even in higher amounts.

Do you gave her retinol while upping the vitamin D to 10K IU? If so, maybe this contributes to still low levels.

I personally would keep vitamin A intake around 5000 IU.

This makes so much sense now, i still have a lot to learn since I make silly mistakes like this, i thought she needed vit. A as a cofactor for vit. D to increase, all this long i gave her 30kiu of vit. A, thank you for clearing this up for me, it seems like little mistakes like this can ruin everything up..
I applied vit. D topically in dosages of 10kiu and Estroban orally which has like 2kiu. I will up the dosage and try to give her calcirol orally from now on and see if her levels improve.

,Regards!

 

[youngsinatra]

This makes so much sense now, i still have a lot to learn since I make silly mistakes like this, i thought she needed vit. A as a cofactor for vit. D to increase, all this long i gave her 30kiu of vit. A, thank you for clearing this up for me, it seems like little mistakes like this can ruin everything up..
I applied vit. D topically in dosages of 10kiu and Estroban orally which has like 2kiu. I will up the dosage and try to give her calcirol orally from now on and see if her levels improve.

,Regards!

I think you need about 5-10 times as much vitamin D if you use it topically to account for the approximately 10-20% absorption rate, but that would be if you use a normal MCT-based product.

I don‘t know if this is different if you use idealabs products (!)

I have best results with sublingual vitamin D.

 

[llian]

I think you need about 5-10 times as much vitamin D if you use it topically to account for the approximately 10-20% absorption rate, but that would be if you use a normal MCT-based product.

I don‘t know if this is different if you use idealabs products (!)

I have best results with sublingual vitamin D.

I see Calcirol has ethanol as solvent, maybe if i apply to navel route the absorbtion rate would be much higher?

 

[youngsinatra]

I see Calcirol has ethanol as solvent, maybe if i apply to navel route the absorbtion rate would be much higher?

Ah I see. I don‘t know much about it and maybe @haidut could give you a better advice since it is his product :)

 

[mrchibbs]

Hey @egoy

So sorry to hear it has taken a turn for the worse.

When did this happen? Because a few weeks ago you posted an update and things were going well? Has there been less sunshine where you live lately? Because early summer can make symptoms much better and they start to come back towards fall/winter after summer solstice.

What supplements is she taking now? I would advise to use vitamin D on the skin only, and try to get her up to the 30-40 range, where she would feel better and more energetic. As @youngsinatra mentioned, this may involve something like 50000-75000UI on the skin to get the right amount absorbed.

The appetite benefits from cyproheptadine tend to wear off after a while, so it's not suprising, but I wouldn't stop it or reduce the dose because in of itself it can cause a rebound of serotonin with can powerfully drive aldosterone and prolactin (ESR). LDH indicates tissue breakdown and I think suggests the catabolic activity of cortisol. Cypro may be preventing wasting to a certain degree right now.

Cyproheptadine Lowers Cortisol, Endorphins, HGH, Aldosterone

Ray's last newsletter focused on endorphins and NO in various pathologies, including cancer. I don't need to mention that cortisol is also something you want to keep low. More importantly, it seems that serotonin is the cause behind Cushing disease and/or elevated cortisol levels (Cushingoid...

raypeatforum.com

Does Anyone Get ESR And Prolactin Regularly Tested?

I just noted on some different blood tests results that the Prolactin results and ESR (erythrocyte sedimentation rate) results seem to correlate together i.e. if prolcatin halves, then so does ESR. Unfortunately i have to pay for my labs, but ESR is about 80% cheaper than prolactin tests. So i...

raypeatforum.com

I would look at maybe upping the cypro dose to 8mg (the sedative effects are not anyworse at higher doses), along with 50000UI topically of vitamin D and more progesterone topically (which opposes aldosterone at a fundamental level).

Also give your mom a little salt (put some on the back of her hand and ask her to lick it), if she enjoys it that may indicate a greater need for dietary salt:

Aldosterone, Sodium Deficiency, and Insulin Resistance – Functional Performance Systems (FPS)

www.functionalps.com

If she doesn't feel like eating, maybe making her a gelatinous, salted chicken broth is the best thing right now to stop the stress process and lower aldosterone.

Here is a quote from Ray in an ORN Interview from August 2019:

Optimal Vitamin D levels lowers parathyroid hormone. All kinds of stress increases parathyroid hormone. Including calcium, salt deficiency. Under stress, the adrenals produce aldosterone, which blocks mitochondrial energy production, and increases parathyroid hormone activity which itself functions by blocking your mitochondrial oxidation and making up for it with glycolytic energy production, which shifts you over into the reductive stress (i.e. failure of oxidation)

Clearly your mom is experiencing some stress as a relapse from her cancer metabolism, and thus she needs more environmental support. Try to get her more light, maybe using a 250W incandescent lamp or maybe multiple lamps in the living room when she's up. Maybe set up a place where she can sit outside when she's not in bed.

So to recap, use much more vitamin D topically. I would add vitamin D drops and progesterone to a ointment and massage her body, legs, back, neck with it. Everyday, multiple times as needed. Cyproheptadine is still useful so I would still use it consistently.

Get her more salt, and don't force her to eat what she doesn't want. Milk, chicken etc. broth whatever she can have without feeling bad.

 

[llian]

Hey @egoy

So sorry to hear it has taken a turn for the worse.

When did this happen? Because a few weeks ago you posted an update and things were going well? Has there been less sunshine where you live lately? Because early summer can make symptoms much better and they start to come back towards fall/winter after summer solstice.

What supplements is she taking now? I would advise to use vitamin D on the skin only, and try to get her up to the 30-40 range, where she would feel better and more energetic. As @youngsinatra mentioned, this may involve something like 50000-75000UI on the skin to get the right amount absorbed.

The appetite benefits from cyproheptadine tend to wear off after a while, so it's not suprising, but I wouldn't stop it or reduce the dose because in of itself it can cause a rebound of serotonin with can powerfully drive aldosterone and prolactin (ESR). LDH indicates tissue breakdown and I think suggests the catabolic activity of cortisol. Cypro may be preventing wasting to a certain degree right now.

Cyproheptadine Lowers Cortisol, Endorphins, HGH, Aldosterone

Ray's last newsletter focused on endorphins and NO in various pathologies, including cancer. I don't need to mention that cortisol is also something you want to keep low. More importantly, it seems that serotonin is the cause behind Cushing disease and/or elevated cortisol levels (Cushingoid...

raypeatforum.com

Does Anyone Get ESR And Prolactin Regularly Tested?

I just noted on some different blood tests results that the Prolactin results and ESR (erythrocyte sedimentation rate) results seem to correlate together i.e. if prolcatin halves, then so does ESR. Unfortunately i have to pay for my labs, but ESR is about 80% cheaper than prolactin tests. So i...

raypeatforum.com

I would look at maybe upping the cypro dose to 8mg (the sedative effects are not anyworse at higher doses), along with 50000UI topically of vitamin D and more progesterone topically (which opposes aldosterone at a fundamental level).

Also give your mom a little salt (put some on the back of her hand and ask her to lick it), if she enjoys it that may indicate a greater need for dietary salt:

Aldosterone, Sodium Deficiency, and Insulin Resistance – Functional Performance Systems (FPS)

www.functionalps.com

If she doesn't feel like eating, maybe making her a gelatinous, salted chicken broth is the best thing right now to stop the stress process and lower aldosterone.

Here is a quote from Ray in an ORN Interview from August 2019:



Clearly your mom is experiencing some stress as a relapse from her cancer metabolism, and thus she needs more environmental support. Try to get her more light, maybe using a 250W incandescent lamp or maybe multiple lamps in the living room when she's up. Maybe set up a place where she can sit outside when she's not in bed.

So to recap, use much more vitamin D topically. I would add vitamin D drops and progesterone to a ointment and massage her body, legs, back, neck with it. Everyday, multiple times as needed. Cyproheptadine is still useful so I would still use it consistently.

Get her more salt, and don't force her to eat what she doesn't want. Milk, chicken etc. broth whatever she can have without feeling bad.

What caused all of these to happen all of a sudden is a mystery to me... everything was going in the right direction until like a week ago she first started to loss her appetite, then she started to develop these dementia like symptoms(slighlty cognitive impairment, confusion, loss of memory, speech impairment) and chronic fatigue, sleeping all day long etc..
When they took blood from her at the clinic she almost fainted..

Now she barely gets 1000kcal a day, she got fed up from all of the food i am giving to her(milk,OJ,cheese) she doesn't crave them anymore...

These are all supplements i give to her now
Carrot salad, coffee, Acetazolamide 250mg, Dhea 10mg, progesterone 200mg, vit D 10k, aspirin 4g, sodium bicarbonate 5g, niacinamide 3g, methylene blue 2mg, retinol palmitate 30kiu(i will cut this), cyproheptadine 4mg, methylene palmitate 800mg, doxycycline 100mg, vit K2 12mg, lidocaine 40mg, Lapodin 15 drops, Energin 30 drops, Pyrucet 25 drops, Magoil 50 drops, thyromix 4 drops(usually i adjust based on her calorie intake which is very low now)

I suspect high aldosterone ruined her glucose metabolism and it made ldh went up too. Maybe endotoxins are involved too? She has diarrhea for 3 days now and i know this might be involve in endotoxemia. Maybe this made WBC go up?

Can i give her ketotifen on top of cyproheptadine? I gave her 1mg today and she strongly craved PUFAs after that(if her metabolism wouldn't be ruined by stress hormones she woule crave milk,OJ?)

If i go navel route with Calcirol the absorbtion wouldn't be better? Then maybe less dose would be needed?

I will try to apply more progesterone to her together with vit. D

,Thank you so much for everything !!

 

[rei]

You are doing way too much, stop most of it and re-introduce in stages at lighter doses and observe the effect individually. 4g aspirin, 3g niacinamide sounds very high and should not be used at that level unless you have documented that it is tolerated well. Aspirin above 1000mg daily needs gelatin (glycine) to fight possible harms in addition to K2 (which you are giving unnecessarily large dose). Sometimes less is more, especially when the patient is not able to introspect like we do on this forum.

 

[llian]

@mrchibbs hey man, is there any way hypercalcemia can be avoided if she gets this much vit D supplementation ? I find weird the most that her serum calcium is so high while PTH is on the lowish side, since high calcium serum is driven by high PTH. This is the reason for high K2, to prevent hypercalcification. If i drop vitamin A she will not be in greater risk of tissue calcification ?

 

[mrchibbs]

I'll reiterate what I said at the beginning all these months ago, like @rei right now. I think you're giving her way too much stuff. Orally this can cause a variety of digestive symptoms by itself, try to use as many on the skin as possible. Vitamin D, K, Magnesium, Progesterone should all be applied topically in large quantities.

You should be dropping the majority of these supplements taken orally because it's quite possibly overwhelming to her body right now. Especially aspirin and niacinamide feel like overblown with Pyrucet and Cypro already in use.

Navel route is theoretically good yes, but I feel like applying to a larger surface can have a more potent effect.

I would try to evaluate what is helping and what isn't. I don't think you can "crave" PUFAs, clearly she's craving something else that's in those foods. What does she feel like eating? Work with her to identify things she wants to eat and figure out how to cook them without the vegetable oils.

It's normal that she got fed up with all these different foods from what she's used to eating. Maybe ask her what she wouldn't mind eating at this point, and report back and we'll figure out some ideas.

Don't feel the need to force feed OJ and milk, cheese and salted chicken broth can provide much of the same benefits for example.

I don't know about the interactions between those two, if ketotifen does help, do use it but maybe then keep cypro at 4mg

Ketotifen (where To Buy Online?)

It appears that the ibs-d urgency, cramping, and loose stools benefit from ketotifen, and it is rather dose sensitive in that I likely need 2 mg twice a day, at least, which I think matches the studies published on the topic. Anyone have recommendations for an online dealer that they have...

raypeatforum.com

Bottomline, she needs more calories and getting her appetite back is crucial, and her body is under stress clearly and the aldosterone being elevated explains why she's not hungry.

 

[mrchibbs]

@mrchibbs hey man, is there any way hypercalcemia can be avoided if she gets this much vit D supplementation ? I find weird the most that her serum calcium is so high while PTH is on the lowish side, since high calcium serum is driven by high PTH. This is the reason for high K2, to prevent hypercalcification. If i drop vitamin A she will not be in greater risk of tissue calcification ?

I think her low-ish vitamin D levels are preventing calcium from being used fully, which is why I'm confident large quantities of vitamin D topically on the skin will help correct this issue quickly. Vitamin K2 absorbs on the skin too. So I would make a lotion and apply it topically as a massage with progesterone, even on the neck/face/shoulders

 

[rei]

If possible legally then cannabis oil should be considered, both for appetite, sleep, and it's anti-cancer effects. And it's also very effective in normalizing upset digestion.