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Nilotinib Group Buy

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#241 Logic

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Posted 24 April 2016 - 10:47 PM

I have been following Nilotinib group buyers effort for quite some time. I believe soon some of you will start taking it with the hope it gives us some relief / extra margin , so that we all can improve and better deal with  our every day  challenges.

Currently I am going to be 63 years old and first signs of parkinson's were noticed in Aug / sept 2009.

 

It looks I have reached a saturation point. Currently I need 2 tablets of 100mg/25mg Levodopa /Carbidopa every 3 hours , starting from 6 Am in the morning , till 9 pm . Their after I go to sleep with 200 mg / 50mg of controlled release Levodopa / Carbidopa at around 11 PM.

 

I realised that a Indian herbal drug was a good substitute for LD/CD hence I replaced my 9 AM and 6 PM dosage with Indian Herbal drug known as Zandopa. This was started since 2011 and is continued ever since. It give better control over tremors.

 

In year 2012 end I discovered that muscle relaxant APO Cyclobenaprine  HCL 10 mg with LD/CD ( controlled release) in the night gives me excellent relief from tremors, better sleep and better bladder control.  Ever since I am taking it on regular basis, with the consent of my neurologist.  But it looks I am slowly loosing the benefit and need to  have something more or some change. Hence I have tried Tasigna 150 mg / day for last 50 days.

 

I will share my experience so far in my next post.

 

Good night 

 

I too look forward to your experience with Nilotinib/Tasigna PARK2009.

I recall that the doctors overseeing people in the trial cut down on the Levodopa / Carbidopa dosage in patients as they started to produce their own dopamine again.
I expect you had to do the same?

 

 



#242 roydeman

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Posted 25 April 2016 - 12:27 AM

I never was able to find any data regarding the Georgetown University Nilotinib study. I just came across the abstract which has some data in it. I will copy and paste it for those who haven't seen it. Any opinions? Numbers don't seem that impressive to me (as far as A-Syn reductikn, ect.) I wonder when the full info will be published....

Parkinson’s disease is characterized by loss of dopamine neurons and accumulation of α-Synuclein in LBs. Nilotinib is a potent inhibitor of Abl tyrosine kinase and it is FDA-approved for adult CML. Nilotinib penetrates the brain and inhibits Abl, leading to autophagic clearance of amyloid proteins. It also increased brain dopamine and modulated immune markers, and reversed motor and cognitive decline. We conducted a clinical trial with the primary objective to determine the safety and efficacy of Nilotinib in advanced PD, PDD and LBD patients. Our studies include measurement of CSF and plasma biomarkers at baseline, 2 and 6 months with 150mg and 300mg Nilotinib daily. These doses are significantly lower of Nilotinib for CML treatment (800-1200mg/ day). We excluded patients with prolonged QTc and other medical contradictions. 8 patients have passed the 2 months period. More than half the patients screened were excluded due to cardiac complications. Nilotinib has a good safety profile in enrolled subjects with no QTc prolongation or myelosuppression. Nilotinib CSF penetration is 0.5-1.5%. A significant reduction (>60%) in plasma α-Synuclein was detected, correlating more frequent bowel movements. There is also a significant decrease in CSF p-Tau181, while total Tau is unchanged. CSF Abeta40 is reduced (18%) with no change in the plasma, while CSF and plasma Abeta42 remain stable. The level of CSF α-Synuclein is unchanged, suggesting stabilization of α-Synuclein levels. CSF homovanillic acid (HVA) is reduced (26%) at 2 months despite a decrease in dopamine replacement therapy, suggesting inhibition of dopamine breakdown. This effect on dopamine also correlates with clinical outcomes, including stabilization with less or no Azilect and L-Dopa. Nilotinib also increases CSF concentration (30-55%) of neuro-restorative markers (PDGF-AB/BB, G-CSF, IL-7, GRO, CCL2 and CCL5), while it reduces markers of neurodegeneration (NSE and S100B). Overall these data indicate safety, tolerability and biomarkers efficacy, and provide a collectively compelling rationale to examine Nilotinib in larger placebo-controlled, double blind studies in earlier stages of diseases.
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#243 Logic

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Posted 25 April 2016 - 12:55 AM

Progress report on
Group buy round 1:

A member has contacted me to say that he has received his Nilotinib on Sunday.

 
That means that everyone will start receiving their Nilotinib and begin their research..!
So it's high time for another and propper disclaimer and discussion of the warnings, contra indications etc as found on the package insert of Nilotinib/Tasigna!   :)

Disclaimer:
I am not a doctor, nor do I claim to have any formal medical background.
I am not liable, either expressly or in an implied manner, nor claim any responsibility for any physical or emotional problems that may occur directly or indirectly from the use of any supplement or medication, or advice on this forum.

Products currently covered by valid patents are offered for R&D use in accordance with (i) 35 USC 271(e)+A13(1) in the U.S.; (ii) Section 69.1 of Japanese Patent Law in Japan; (iii) Section 11, No. 2 of the German Patent Act of 1981 in Germany; (iv) Section 60, Paragraph 5b of the U.K. Patents Act of 1977 in the U.K.; (v) Section 68B of the Patents Act of 1953 in New Zealand; (vi) such related legislation and/or case law as may be or become applicable in the aforementioned countries; and (vii) such similar laws and rules as may apply in various other countries. In the European Union, equivalent exemptions are allowed under the terms of EC Directives 2001/82/EC (as amended by Directive 2004/28/EC) and 2001/83/EC (as amended by Directives 2002/98/EC, 2003/63/EC, 2004/24/EC and 2004/27/EC). Any patent infringement issue and resulting liability is solely at buyer's risk.

 
Please read the warnings and contraindications etc carefully before beginning any research with Nilotinib or any other cocomitant medication or suppliment:
https://www.pharma.u...pdf/tasigna.pdf
http://www.fda.gov/S...n/ucm218929.htm

 
 

Some previous discussion on Safety Information is here:
http://www.longecity...ndpost&p=757543

We need to expand on Safety Information and side effects etc!

Some thoughts:

 

Nilotinib is cleared from the system by the Cytochrome P450 3A4 enzyme.

Some supps contain CYP3A4 inhibitors.

The Piperine in Curcumin formulations comes to mind.

https://en.wikipedia.org/wiki/Piperine

https://examine.com/...s/black-pepper/

This means that that a hot, peppery indian meal or a concomitant Curcumin supp could cause unwanted, or even dangerously high, systemic levels of Nilotinib.
Other supps and meds also affect CYP3A4 etc..!

 

Fats/fatty meals also raise levels and the insert recommends avoiding food for an hour before and after dosing.

By the same token, supps and meds that increase CYP3A4 levels should clear Nilotinib from the systems of test subjects faster.

These may be used to lower levels if so desired, or result in undesirably low levels.
BHT comes to mind and may also help clear related low level infections:
http://www.longecity...ndpost&p=689170

http://www.vrp.com/b...350-mg-100-caps

There are others.

 

Thrombocytopenia, Neutropenia, liver, gastrointestinal etc issues are ...'undesirable' and may become an issue with long term use, even at lower doses..?

http://www.webmd.com...uses-treatments

http://www.webmd.com...ptoms-treatment
Supps and means to lower the risk are worth a look, keeping any potential CYP effects in mind.

IIRC Pterostilbene is protective of blood..?

Vitamin C ameliorates the negative effects of Aspirin on the gut and may be worth a look..?
(..? generally means: more research reqd)


Anyone with any hint of irregular heart rhythms (arrhythmias)/QT interval issues etc needs to be very-very wary of Nilotinib!
The testing of QT Interval and Potassium and Magnesium levels is obligatory in Nilotinib package inserts IIRC. I highly recomend doing so.
Too high levels of Potassium and/or Magnesium is as bad as too low..?
http://www.mayoclini...es/con-20025388

https://en.wikipedia...iki/QT_interval

 

Be safe and do your research everyone!

 


Edited by Logic, 25 April 2016 - 01:36 AM.


#244 Park2009

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Posted 25 April 2016 - 12:56 AM

Dear all,

Today (Sunday) was a busy day for me , here are few observations . I promise I will write more details on Monday.

 

1) I am taking Novartis Tasigna, I could get 6 boxes. Each containing 28 capsules of 150 mg each.

 

2) As on today I have consumed 50 capsules. I am still having 118 capsules, i.e 4 months supply.

 

3) My first dilemma was >> When to take it ?? Since product is not yet approved , doctors over here would take no interest in monitoring it or making any suggestions.

 

4) First 4 days I took it in the night with the thought >> Housekeeping / rouge protein  scavenging in brain is claimed to be initiated while we are sleeping. But soon realised that I was getting uncomfortable and waking up with feeling of breathlessness.

 

5) After that I started taking it at 2 PM ( Afternoon) each day. Again I felt breathlessness and it took me a while to figure out , I need lots of water with Magnesium and Potassium. So I have started taking lots of Coconut water  and 2X 500 mg magnesium.

 

6) My tremors were reduced and I could take higher work load .But it is not a significant improvement , wherein I could claim reversal in Parkinson and possible dopamine regeneration.

 

7) I do feel thirsty after taking Tasigna, which lowers BP from my normal at 120/75 to 110/ 65 or 110/60.

After taking Gatorade or  coconut water or EmergenC in at least 500 ml water BP is back to 120/75     and feeling of breathlessness is avoided.

 

As yet I do not have High BP issues. 

 

8) Toronto is a cold place but soon I will start outdoor walking . Temperature has started moving up, that should help me judge if I can further improve .

 

9) Currently I try to have a walk on treadmill 30 minutes after taking Levodopa / Carbidopa or Tasigna . It is just 15 minutes walk at 2.5 miles/ hour setting. It puts medicine into circulation and after first 5 minutes of walking my tremors starts reducing, I leave  treadmill in a fairly stable condition. But 3 hours later I do need Dopamine.

 

If I do not walk on treadmill , than it takes much longer to reboot.

 

I will write more about my observations in my Monday post.

 

 

 

 

 .

 

 

  

 



#245 Logic

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Posted 25 April 2016 - 01:36 AM

Group buy round 2:

 

The following people have committed to a 2nd group buy of Nilotinib and sent me their details:

 

NAME:                     AMOUNT (grams):
centralFloridaMan   150

Logjam                    15 (revised)

mlsirkis                    50

 

The following people have committed to a 2nd group buy of Nilotinib, but not yet PMd me their details:

NAME:                    AMOUNT (grams):
David Watford         300
Ark                          10
Edgar Tuttle            150
deetown                  20
prophets                  20
izan82                     10
Linda Gray              ??

gedanken                10

Total:                      745 + grams

I will begin replying, via Email to everyone tomorrow. to begin collecting funds.
 

 

 


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#246 LongLife

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Posted 25 April 2016 - 04:59 AM

Dear all,

Today (Sunday) was a busy day for me , here are few observations . I promise I will write more details on Monday.

 

1) I am taking Novartis Tasigna, I could get 6 boxes. Each containing 28 capsules of 150 mg each.

 

2) As on today I have consumed 50 capsules. I am still having 118 capsules, i.e 4 months supply.

 

3) My first dilemma was >> When to take it ?? Since product is not yet approved , doctors over here would take no interest in monitoring it or making any suggestions.

 

4) First 4 days I took it in the night with the thought >> Housekeeping / rouge protein  scavenging in brain is claimed to be initiated while we are sleeping. But soon realised that I was getting uncomfortable and waking up with feeling of breathlessness.

 

5) After that I started taking it at 2 PM ( Afternoon) each day. Again I felt breathlessness and it took me a while to figure out , I need lots of water with Magnesium and Potassium. So I have started taking lots of Coconut water  and 2X 500 mg magnesium.

 

6) My tremors were reduced and I could take higher work load .But it is not a significant improvement , wherein I could claim reversal in Parkinson and possible dopamine regeneration.

 

7) I do feel thirsty after taking Tasigna, which lowers BP from my normal at 120/75 to 110/ 65 or 110/60.

After taking Gatorade or  coconut water or EmergenC in at least 500 ml water BP is back to 120/75     and feeling of breathlessness is avoided.

 

As yet I do not have High BP issues. 

 

8) Toronto is a cold place but soon I will start outdoor walking . Temperature has started moving up, that should help me judge if I can further improve .

 

9) Currently I try to have a walk on treadmill 30 minutes after taking Levodopa / Carbidopa or Tasigna . It is just 15 minutes walk at 2.5 miles/ hour setting. It puts medicine into circulation and after first 5 minutes of walking my tremors starts reducing, I leave  treadmill in a fairly stable condition. But 3 hours later I do need Dopamine.

 

If I do not walk on treadmill , than it takes much longer to reboot.

 

I will write more about my observations in my Monday post.

 

 

 

 

 .

PARK2009: Thank you for your data points. if you would not mind answering a few questions regarding your numbered comments:

 

1. How much did the Nilotinib cost you per dose/pill/capsule OR box?

 

5. a. Are you taking Magnesium Oxide or what type of magnesium supplements?

    b. Is the magnesium supplement a hard pill or soft capsule?

    c. "2 x 500mg" ; are you taking this with meals? Morning and afternoon? Afternoon and evening?

    d. Are you taking any other mineral supplement (ie Calcium, Potassium, Phosphorus, Copper, Iron, etc.), if so, what minerals and how much. <Besides the Gatorade>

    e. Do you consume salt (Sodium Cloride) in your diet? None, a little, a lot?

 

7. Is the coconut water fresh or from a can?

 

Do you or have you had any chest pain or chest pressure since using Nilotinib?

 

Has the Nilotinib affected your mood or increased anxiety or cause less sleep/rest?

 

Thank you very much PARK2009 for sharing with us your experiences and information. I think you will receive some helpful suggestions concerning Parkinson :-)



#247 roydeman

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Posted 25 April 2016 - 05:27 AM

Can anyone explain how this would be encapsulated? A good scale? Does a person need to add filler?

#248 resveratrol_guy

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Posted 25 April 2016 - 06:30 AM


6) My tremors were reduced and I could take higher work load .But it is not a significant improvement , wherein I could claim reversal in Parkinson and possible dopamine regeneration.

 

Thanks for sharing. Have you considered simply increasing the dosage?



#249 resveratrol_guy

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Posted 25 April 2016 - 06:46 AM

I never was able to find any data regarding the Georgetown University Nilotinib study. I just came across the abstract which has some data in it. I will copy and paste it for those who haven't seen it. Any opinions? Numbers don't seem that impressive to me (as far as A-Syn reductikn, ect.) I wonder when the full info will be published....

Parkinson’s disease is characterized by loss of dopamine neurons and accumulation of α-Synuclein in LBs. Nilotinib is a potent inhibitor of Abl tyrosine kinase and it is FDA-approved for adult CML. Nilotinib penetrates the brain and inhibits Abl, leading to autophagic clearance of amyloid proteins. It also increased brain dopamine and modulated immune markers, and reversed motor and cognitive decline. We conducted a clinical trial with the primary objective to determine the safety and efficacy of Nilotinib in advanced PD, PDD and LBD patients. Our studies include measurement of CSF and plasma biomarkers at baseline, 2 and 6 months with 150mg and 300mg Nilotinib daily. These doses are significantly lower of Nilotinib for CML treatment (800-1200mg/ day). We excluded patients with prolonged QTc and other medical contradictions. 8 patients have passed the 2 months period. More than half the patients screened were excluded due to cardiac complications. Nilotinib has a good safety profile in enrolled subjects with no QTc prolongation or myelosuppression. Nilotinib CSF penetration is 0.5-1.5%. A significant reduction (>60%) in plasma α-Synuclein was detected, correlating more frequent bowel movements. There is also a significant decrease in CSF p-Tau181, while total Tau is unchanged. CSF Abeta40 is reduced (18%) with no change in the plasma, while CSF and plasma Abeta42 remain stable. The level of CSF α-Synuclein is unchanged, suggesting stabilization of α-Synuclein levels. CSF homovanillic acid (HVA) is reduced (26%) at 2 months despite a decrease in dopamine replacement therapy, suggesting inhibition of dopamine breakdown. This effect on dopamine also correlates with clinical outcomes, including stabilization with less or no Azilect and L-Dopa. Nilotinib also increases CSF concentration (30-55%) of neuro-restorative markers (PDGF-AB/BB, G-CSF, IL-7, GRO, CCL2 and CCL5), while it reduces markers of neurodegeneration (NSE and S100B). Overall these data indicate safety, tolerability and biomarkers efficacy, and provide a collectively compelling rationale to examine Nilotinib in larger placebo-controlled, double blind studies in earlier stages of diseases.

 

As to QTc prolongation, that reminds us that it might be a good idea to get an EKG first, which is routine and fairly cheap at most doctor's offices.

 

I'm not sure what to make of the drop in plasma alpha synuclein in light of unchanged levels in the brain. It sounds as though nilotinib is reducing its production in peripheral organs.

 

An 18% reduction in abeta40 is clinically insignificant; even 100% might not be useful.

 

Which brings me to phosphotau-181. This is one of the heavier aggregates. I wonder if -- just maybe -- nilotinib's beneficial effects are actually due to this one specific intervention. In principle, reducing it would revert the patient further back in the stages of neurodegeneration, as it would make it harder to form neurofibrillary tanlges (NFTs), the most hazardous waste products involved in dementia.

 

The 30-55% increase in neurorestorative markers is nothing to scoff at. It's downright incredible. (How many oral interventions create that sort of shift in any brain marker, in the right direction?) To me, this is evidence that repair is actually occurring, regardless of why.


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#250 resveratrol_guy

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Posted 25 April 2016 - 06:57 AM

 

I'll avoid acronyms in the future.  For anyone who is reading, MB = methylene blue, and Rember is a basically methylene blue.

 

I didn't mean to say methylene blue clears amyloid, but it apparently does divert some of the misfolding to be less toxic in the case of amylin aggregates in pancreatic amyloids as well as in Abeta.  There are very interesting parallels.

 

http://www.ncbi.nlm....pubmed/17595112

 

The data show that Abeta oligomer formation is inhibited by promoting fibril formation, which suggests that the relative pathological significance of oligomers and fibrils may be tested in vivo using methylene blue. If Abeta oligomers represent the primary pathogenic species, then inhibition of this highly toxic species via promotion of formation of less toxic aggregates may be therapeutically useful.

 

http://www.jbc.org/c...6/41/36086.full

 

The specific oligomer inhibitor methylene blue (51) blocked amylin oligomerization and amylin-induced cell death, suggesting a causal link between amylin oligomerization and toxicity in cells (Fig. 2B and C). T

 

http://digitalcommon...t=dissertations

 

In several transgenic mouse and rat models expression of human amylin has been found to correlate with β-cell apoptosis and diabetes-like symptoms [12], although considerable controversy remains on whether the fibrils themselves or smaller aggregates of amylin constitute the toxic [aggregate (inserted by Logjam)] species [13- 16]. 

 

So my theory is that esp. in the case that there is a relatively static body of cells (as is the case with brain tissue and beta cells – both of which are pretty resistant to therapies to induce proliferation) that these toxic amyloids are particularly bad because there's no mechanism to compensate while the amyloid is functionally useless and a waste of space at best, and possibly destructive on top of that.  The studies that indicate there is a more toxic or less toxic form in at least 2 amyloid disorders add credibility to the toxic hypothesis, but I'd assert both examples are low turnover and rarely expand.

 

Some conjecture, but it makes sense to me.
 

 

Based on my read of the voluminous MB discussions in the forum here, it sounds to me like it's (1) marginally effective and (2) quite sensitive to dose. (Turnbuckle in particular seems to have had problems with it, and lostfalco, our in-house "nootnaut" hero, does not seem to have been impressed by its effects.)

 

In short, it seems really hard to get it to the place in the electron transport chain that we want it, to say nothing of doing so in the brain. The hopes that it would enhance low level light therapy (transcranial near infrared) appear to have been dashed.

 

But in light your articles, the other problem I have with all this is that clearing amyloid is potentially a sideshow in dementia prevention. There is some speculation that doing it very early (say, at age 30 or 40) would pay off. However, in that case, I'd rather (and I have, actually) use megadose Curcubrain.

 

You're a smart guy, though. This stuff should be discussed in the Latest Alzheimer's thread. Go introduce yourself there.

 

"[aggregate (inserted by Logjam)]" -- This is redundant. The square brackets already imply that it was you who modified the quote. I'm just being grammatically pompous...


Edited by resveratrol_guy, 25 April 2016 - 07:00 AM.


#251 Park2009

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Posted 25 April 2016 - 01:02 PM

Longlife : Here are replies to your questions :

1) Nilonitib cost to me : It has been gifted to me by one of my friend , for whom I worked as a consultant in oil industry. I know it is very expensive. He has promised me another supply if it improves my struggle with everyday challenges. In Canada I asked my neurologist if he can prescribe it to me. That was in Dec. 2015. He was not aware of George Town development but after googling and reading he told me , he won't prescribe till he has specific details regarding its benefits /recommendation. I understand his predicaments and did not push any further. Moreover he has been very cooperative prescribing   Cyclobenzaprine HCL on a regular basis. Whereas  my Family physician was not confident prescribing it for a period more than 1 month.    

 

5) Regarding Mg supplement It is hard pill of Magnesium oxide from Nature Bounty. I have taken Magnesium Citrate as effervescent powder , it seems it works better but it was expensive on a continued basis. I do take 1200 mg Calcium having 1000 IU D3. Calcium supplement is taken in the daytime , magnesium is taken in the night.  

My Salt intake is not regulated. I do take it through my salad or stew . It is Sea salt non iodised. Claimed to be collected from waters of the mediterranean shores of Sicily.  

 

Normally I take more salt than others in the family. 

 

7) Coconut water available to me is packaged ( Tetra Pak) . I am making sure I make my morning smoothie with coconut water. Between 6 am to 9 am I take 500 ml of fruit smoothie having  1 Banana and around 200 gm frozen Berries ( strawberry + BlueBerris + Black berries) and Cherries. I  add a handful of prewashed organic baby spinach to it and also  Ginger. It helps me reboot me for the day. 

 

My tremors are extremely low after taking morning LD/CD at 6 AM followed with Smoothie at 7 AM.

 

No chest pain of pressure felt in the chest with Tasigna ( By now 50 days of taking it , 150 mg per day)  

 

Mood is upbeat , no anxiety.

 

 

Resveratol_guy : As yet no plans to increase Nilotinib to 2 x 150 mg.

 

I want to fix by bowels clearing first. It is bit out of control because after 15 days of taking Tasigna I went ga - ga and took liberty to eat all that junk which I used to take in the past. Since constipation is major issue with me or perhaps all Parkinson's patients. I will write separate note on that.

 

Write now it is 9 AM , Time for another Dopamine dose and than I will go to treadmill. 

 

 

Have a nice day

 

 



#252 Park2009

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Posted 25 April 2016 - 04:39 PM

I believe Constipation is all Parkinson's patients nightmare.  In my case I try to avoid it by avoiding following :

1) Do not take chicken. By now I am avoiding all types of meat products. I only prefer baked Salmon once or twice a week.

   

2)Milk also causes me constipation , hence I am restricted to taking yoghurt only. That too plain yoghurt or kefir.

 

3) Wheat also causes me constipation. Hence I take maximum 2 slices of bread/ day, made from sprouted multigrains  having sprouted wheat as the main component . Bread is claimed to be preservative free and all grains are non GMO.

 

Rice is my main source of carb and I DO TAKE LENTILS.

 

With above mentioned scenario I was ok with 2x500 mg Magnesium oxide.

 

Once I started taking Tasigna. Just within 4 or 5 days, Constipation seemed to be non issue. So I had to stop taking  magnesium to avoid running into diarrhea.

I became euphoric , so I started enjoying  chicken , even though it was organic and limited to around 4 leg pieces a day. I have run back to magnesium at old level and stop taking chicken.  Since Constipation reappeared. 

 

Ever since I am trying to reestablish to a steady pattern but it looks  it will take some time. 

 

I have sufficient Tasigna for now , I am sure I will soon stabilize . And continue my little experiment with Tasigna.

 

 

 

 

 

 

 

 

 

 

  

 

  



#253 Logic

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Posted 25 April 2016 - 11:12 PM

...Magnesium oxide...

 

IIRC Magnesium Oxide is hardly bioavailable?

[Magnesium] L-Threonate for neurogenesis, alzheimer's, hair loss, osteoarthritis

http://www.longecity...osteoarthritis/



#254 Logjam

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Posted 27 April 2016 - 04:17 AM

Possibly interesting interaction & synergy of Parkin with Metformin in mouse studies:

  1. "Cytosolic p53 inhibits Parkin-mediated mitophagy and promotes mitochondrial dysfunction in the mouse heart." http://www.ncbi.nlm....pubmed/23917356
  2. "Metformin Restores Parkin-Mediated Mitophagy, Suppressed by Cytosolic p53" http://www.mdpi.com/...67/17/1/122/pdf

Cytosolic p53 inhibited mitophagy by disturbing the mitochondrial translocation of Parkin, as demonstrated by immunoprecipitation. However, metformin decreased ER stress and p53 expression, resulting in induction of Parkin-mediated mitophagy. Furthermore, pifithrin-α, a specific inhibitor of p53, increased mitochondrial incorporation into autophagosomes.

 

pifithrin-α was invented somewhere in Russia in the 90s, but I've never seen it used in anything but studies.  See https://www.research...a72d7000000.pdf

 

And the almost expected relation between various "diabetes of the brain" disorders and diabetes: http://www.ncbi.nlm....pubmed/24516131 with the regular parallels.  Interestingly, there are also related-looking amylin amyloids in the islets that may cause harm and do not get cleared effectively.

 

There is some sort of interaction of Parkin and the p53 tumor suppressor — http://www.ncbi.nlm....pubmed/21930938 — though I'm not sure I fully appreciate it.  p53 is a tumor suppressor, but it is also a mechanism that depresses metabolism by decreasing insulin reception when a cell is under stress or in crisis.  p53 also interferes with mitophagy, which may make complete sense.  Why perform mitophagy?  Why express an insulin receptor, either?  This is where Parkinsons, Alzheimers, and Diabetes really all start to look like the same thing.

 

There's the Warburg effect, and the inverse Warburg effect (https://en.wikipedia..._Warburg_Effect), which is implicated in Alzheimers and Parkinsons.  p53 and Parkin are regulators in this axis.

 

Epidemilogical studies have shown that cancer is inversely comorbid with both Alzheimer’s disease (AD) and Parkinson’s disease (PD) (13,14). The molecular and bioenergetic basis for this inverse relation can be explained by invoking the Warburg effect as the fundamental cause of cancer and the Inverse Warburg effect as the fundamental cause of AD and PD (15). 

 

So p53 (and Parkin) are involved in regulating a pathway to cancer, and it's a reasonable hypothesis that it's inversely comorbid because the process is totally effective.  It just has real (non-inverse) and very unfortunate comorbidities as well.

 

I suspect, but cannot prove, that p53 accumulation will be one of the foundational pathways that increases insulin resistance, which is part of the same constellation of problems.  This really does make sense.  Why should an ostensibly sick cell express insulin receptors on the way to resolution of the dysfunction when the resolution may be apoptosis of a cancerous cell?  If it may be cancer, expressing a normal amount of insulin receptors is a really bad strategy.  Depressing metabolism is a good strategy, at least temporarily.  See http://cancerres.aac...2/2781.full.pdf.  p53 is also ultimately what mediates apoptosis in a cell with telomere dysfunction or other related genetic/DNA damage. 

 

The problem is that the strategy needs to end.  Eventually we need the cell to express insulin receptors and fix bad mitochondria.  Metformin does appear to help with some of this.  It's interesting that it doesn't cause cancer and even reduces cancer incidence.  That's tricky.

 

Apparently, you'd want to reduce p53 if you want Parkin-mediated mitophagy to work better. 

 

This may explain why Metformin is generally helpful to the various brain disorders, why mitochondria sometimes get sick, etcetera.  It's yet another resaon why Metformin yields a positive effect on various related metabolic disorders.  It's interesting that Metformin decreases p53, but generally also decreases cancer.  It's toxic to totally p53 deficient cells at least in some cancers (http://cancerres.aac...67/14/6745.full).  So it seems at least one of the ways that Metformin functions is by reducing p53, but making a "too" p53-deficient cell commit suicide.  A clever bio-hack.

 

 


Edited by Logjam, 27 April 2016 - 05:12 AM.

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#255 Park2009

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Posted 27 April 2016 - 01:39 PM

 

...Magnesium oxide...

 

IIRC Magnesium Oxide is hardly bioavailable?

[Magnesium] L-Threonate for neurogenesis, alzheimer's, hair loss, osteoarthritis

http://www.longecity...osteoarthritis/

 

 

It seems Magnesium as oxide or citrate are effective against constipation. Magnesium citrate is  considered better than oxide. I have used both and in my case Citrate seemed to be marginally better than oxide. MgO being cheaper I settled down for it.

 

Regarding Magnesium L Threonate >> It is strange , I never stumbled across this. Where as it is widely discussed. Thanks for pointing in this direction. Last two days  I went through all the links you have indicated in your post. 

 

I will try it and see how it works with me , it looks it has lot to do with brain and L threonate.

 

For constipation I do have other tricks in my kitty. One is Water + Banana + lots of Spinach leaves + Ginger as smoothie in the Morning ! ( around 500 mll)

If that does not work than I go ahead with another herbal Blend  commonly referred as  " TRIPHALA" 

Effort is to try Herbal first, if it does not work than go ahead with MgO 2x500 mg.



#256 LongLife

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Posted 27 April 2016 - 04:30 PM

 

 

...Magnesium oxide...

 

IIRC Magnesium Oxide is hardly bioavailable?

[Magnesium] L-Threonate for neurogenesis, alzheimer's, hair loss, osteoarthritis

http://www.longecity...osteoarthritis/

 

 

It seems Magnesium as oxide or citrate are effective against constipation. Magnesium citrate is  considered better than oxide. I have used both and in my case Citrate seemed to be marginally better than oxide. MgO being cheaper I settled down for it.

 

Regarding Magnesium L Threonate >> It is strange , I never stumbled across this. Where as it is widely discussed. Thanks for pointing in this direction. Last two days  I went through all the links you have indicated in your post. 

 

I will try it and see how it works with me , it looks it has lot to do with brain and L threonate.

 

For constipation I do have other tricks in my kitty. One is Water + Banana + lots of Spinach leaves + Ginger as smoothie in the Morning ! ( around 500 mll)

If that does not work than I go ahead with another herbal Blend  commonly referred as  " TRIPHALA" 

Effort is to try Herbal first, if it does not work than go ahead with MgO 2x500 mg.

 

PARK2009:

AT any time we may get the boot from a Monitor because we are straying away from the subject matter (the forum rules), which is Nilotinib.

Notwithstanding the aforementioned, since taking "N", have you noticed any +- effects on your bowels?

Can you let me know your blood type please (O, B, A, or AB) and the Rh (+ or -).?

 

I could post way too much about magnesium. A suggestion; stop what you are taking now concerning the magnesium. Even if you threw it away it might be better for you. Why? It clogs up your cell receptors for both Calcium and Magnesium, causes a cascade effect of negative results over time, one is depletion and anemia.

 

If you have time and are inclined to do so, look for cheap Magnesium Sulfate (Epsom Salt) crystals, sold by the pound, 5lbs, 25lbs, etc. Wash your feet and soak them in this every evening, maybe try one hour before sleep time. Soak for minimum 20 minutes hot/warm water; best method of magnesium intake there is. PubMed search will reveal all.

 

The L-Threonate, not for magnesium short fall; if you are deficient. This is for maintenance only, so a person would ideally get their magnesium shortage resolved (soaking in the sulfate form), then do the "L-" form as to improved cognitive results, if needed. It is expensive and there is usually a limited $ supply, so the $ might need to be allocated for more functional items concerning resolving the cause of the Parkinson. Case in point for coconut water, which is amazing for urinary track Infection (URI) but not so great for everyday use as far as cost/benefit ($ again), so I do coconut oil, one tablespoon in the morning with my slurp (coffee, cocoa, coconut oil, cinnamon, stevia, and three mushroom powders, 500mg each of Reishi, Lion's Mane and Cordyseps). The mushrooms are for Nerve Growth Factor (NGF) synthesis which may well assist your causality situation. The one tablespoon in the afternoon and one in the evening and never together, ie 2 or 3 at once; nausea, diarrhea (although you might contemplate doing a bit of this to stop constipation, I might try 1 1/2 tablespoons and then a tid-bit more until the constipation stops.

 

Bowels cleaned; get from a plant nursery some AloeVera. Keep around your place, cut 3" from the top and discard the spines, wash covering, cut into small chunks and blend with 1/4-1/2 cup clean cool water and drink now-stop at the side of your bed, go to sleep and repeat seven nights. The first through third morning, at some point, it will come and when it does the whole building will stink, so be prepared. Observe the results each time, when the output is not dark them everything negative is dead, do this for no less than seven nights; no more than ten. PubMed; too many results. natural, kills everything negative, cleans out the gut system. Each morning you will take your smoothie with no less than two tablespoons of finely ground flax seed, I don't know your weight so this is for a normal average person less than 180 lbs, act accordingly. These will slowly scrub the garbage out, release some fresh Omega3, although plants source it will get polymerized into what you need, albeit a tiny amount. not bad for night time too when under constipation. Do this until you can not afford it any more (forever maybe?). We are on a public forum and I can not prescribe you anything specific unless I see the color of your eyes, understand? Humm? A am not a doctor, so I do not kill anyone, a Physician at best.

 

Park2009, get your blood type and send it to me or post it, whatever. Meanwhile, go to a Parkinson thread and post there for more assistance with your situation because I tend to go one forever and I do not want to get another warning for posting off subject, this thread is about "N" :-). Then let me know, Personal Message (PM) me, let me know what thread you posted on. Okay?


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#257 glowso

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Posted 27 April 2016 - 06:58 PM

So I got an email from LongLife telling me that a SECOND Group Buy is closing soon and to contact LOGIC, etc. I'm concerned about the first group buy since we've not heard about this and I know a couple people who would like to buy into this immediately if this is a legitimate offering... I find it disheartening that we've not heard about the first round of experiences here from buyers, etc. and so I'm cautious about just jumping in.



#258 cjlmom

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Posted 27 April 2016 - 07:30 PM

Agreed glowso! Please anyone from the first buy can you let us know how it goes?

#259 glowso

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Posted 27 April 2016 - 07:33 PM

Right @cjlmom, more than anything we want to know that the buys went well and there were no problems with receipt more than actual results (since it takes ~30 days to see results we realize that we have to simply hang on for that part of the input).


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#260 Park2009

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Posted 27 April 2016 - 08:49 PM

Longlife : I appreciate your caution , to stick around Nilotinib .

Bottomline or lesson from my experience with N is >>

 

1) When do you choose to take your 150 or 200 mg dosage (Early in morning , A/N or late in  night, before going to sleep) >> I take it at 2PM each day.

2) After 4 or 5 days of taking it constipation was not an issue,  I went euphoric and  tried to push the limit. My suggestion will be >>. Do not do what I did. Do not make drastic changes in your food intake. 3) I felt breathlessness , I believe it was due to electrolyte imbalance. right now it is taken care or I should say it is non issue.

4) My tremors are definitely less  than before , especially before noon and I am getting up in the morning with more energy than before. 


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#261 LongLife

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Posted 28 April 2016 - 12:39 AM

PARK2009:

1. I have not tried N. I would start a little low and work up to your daily dose (150mg) over three days, so my body is adjusted. I would eventually increase my dose, after maintaining the 150mg for at least 45 days. The studies available elude to a month before any results are noticeable (I am assuming your situation was different, you received benefits much sooner, correct?), so I would be expecting some noticeable change around the third week perhaps. 

 

Once the effects of N are set into play, I would remain at 150mg until I started noticing a decline. Then I would consider increasing the dosage. Novartis produces: red capsule of 150mg, yellow capsule of 200mg, unknown to me colored capsules of 400mg. Increase by 50mg increments as required; meaning you will know when it is time to increase dosage. Since the material is known to remove Beta-Amyloid plaque besides other things, then I would think that once taken for 90 days (depending on what Stage of Parkinson) one could cycle this. Take every other day and observe during a week or four dosage at every other day, if there is a decline in effectiveness. The theory is once "cleaned-up", a maintenance dose would be taken...one 150mg dose every other day. This may keep the Beta-Amyloid cleaned out and those that are trying to start to be formed from forming their "Beta" structure, which is a bit complex.

 

Morning or Night? let's see what Novartis says, to wit: https://gisttrials.f...ail.php?drug=32

""Dosage: XXX mg orally twice daily, approximately 12 hours apart and should not be taken with food. The capsules should be swallowed whole with water. No food should be consumed for at least 2 hours before the dose is taken and no food should be consumed for at least one hour after. Dose adjustment may be required for hematologic and non-hematologic toxicities, and drug interactions.""

 

NOTE: This is for a 400mg dose, I removed the dosage above. If in fact a 150mg dose is "starter" dosage, it may need to be once a day after the three day work-in period: see aforementioned example. When the body is at rest (sleep) and preforming it's maintenance cycles, it may then be a good idea to take N at bedtime. The maintenance/repair cycling is between 1am and 5am assuming one goes to bed at 10pm. This is the DEEP SLEEP period, very important and should NOT be disturbed by waking due to baby crying, urination needs, etc. By using 1mg-3mg (depends on some factors) of Melatonin (hormone/ neurotransmitter) AND about 3 grams of Glycine (amino acid) at bed time will help induce DEEP SLEEP; not going to sleep, does not put you to sleep. The Melatonin and Glycine are available Online or at many stores. So there goes the $ again.

 

2. Previously, a few days ago, I asked about your diet; no answer. There are 11 types of dementia and Parkinson is one of those and in all cases the diet must be observed and modified to specifically address the cause of the effect; effect being dementia. Correct, one may not go off the handle and eat bad nutrition, regardless of how they feel. One cause of dementia is head injury and in that case diet is not a cause, obviously, although diet is still a major, not a minor, roll. I lost a sister to this type of dementia and this induced me to become a student of the subject matter.

 

3. Breathlessness. One of the consequences that may be observed taking N. Electrolyte imbalance will result in heart palpitation, light headed, maybe perspiration, lethargic, etc, but not likely shortness of breath. 

 

In cardiology, the QT interval is a measure of the time between the start of the Q wave and the end of the T wave in the heart's electrical cycle. The QT interval represents electrical depolarization and re-polarization of the ventricles.

 

Let's see what Novartis has to say, and the [N] insert is mine for Nilotinib to wit:

 

""...fatigue and abdominal pain were more common with Tasigna [N] monotherapy cohort...""

 

""Patients with low blood potassium or magnesium should not use Tasigna [N]. These conditions must be corrected prior to Tasigna [N] administration and should be periodically monitored.""

 

""WARNING: QT PROLONGATION AND SUDDEN DEATHS

Tasigna prolongs the QT interval. Sudden deaths have been reported in patients receiving nilotinib. Tasigna should not be used in patients with hypokalemia, hypomagnesemia, or long QT syndrome. Hypokalemia or hypomagnesemia must be corrected prior to Tasigna administration and should be periodically monitored. Drugs known to prolong the QT interval and strong CYP3A4 inhibitors should be avoided. Patients should avoid food 2 hours before and 1 hour after taking dose. Use with caution in patients with hepatic impairment. ECGs should be obtained to monitor the QTc at baseline, seven days after initiation, and periodically thereafter, as well as following any dose adjustments.

Drugs known to prolong the QT interval should be avoided. These include:amiodarone, arsenic trioxide, chloroquine, chlorpromazine, clarithromycin, disopyramide, dofetilide, droperidol, erythromycin, haloperidol, ibutilide, methadone, moxifloxacin, pentamidene, pimozide, procainamide, quinidine and sotalol. For lists of other "possible" or "conditional" risk drugs, please see the Arizona CERT at www.azcert.org. 

CAUTION: Patients that have had a major gastrectomy may have decreased absorption of nilotinib. See the link below. https://gisttrials.f...ail.php?drug=32 ]
See the prescribing information (link below) for complete details.""

https://gisttrials.f...ail.php?drug=32  ]

 

4. It sounds as though the N is working for you. Now if you can resolve the cause of your Parkinson and modify your diet accordingly you may eventually get out from under N and all other medications. As I mentioned in previous post, there are a few questions remaining to be answered before addressing the rest of how to resolve your situation.

 

 


Edited by LongLife, 28 April 2016 - 12:44 AM.

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#262 LongLife

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Posted 28 April 2016 - 01:31 AM

GLOWSO:

You failed to mention that I immediately answered your question/concern regarding these matters and this appears to me to be borderline deceptive.

 

To be rather specific this time I shall elaborate more, to wit:

Mine arrived on Saturday, April 23, 2016 at about 2:30pm via USPS and I had previously been given a tracking number from LOGIC. I have not used any N, since it is not for me, although I am contemplating it for the Beta-Amyloid clearing mechanism, also for other possible benefits. I had been very concerned how my $1,000 order was going to get to me (Peru) and coordinating this with LOGIC. The unforeseen delays in the process of organizing the Group Buy in it's entirety has caused my N order to be sitting in a friends freezer since it arrived. 

 

I mentioned to you that the research indicates the average person achieves results after thirty days. This is in the links that LOGIC has provided throughout the coarse of the Group Buy #1. Therefore it is very premature to have anyone respond giving testimony of their experiences with N.

 

There is one individual, PARK2009, who has recently posted on the NILOTINIB GROUP BUY thread starting at post #211, to wit:

 

 http://www.longecity...e-8#entry772118

 

I recommend that everyone read PARK2009 posts because they have been using N for over 50 days now and therefore we have real testimony from one individual who is sharing their experiences openly. Anyone can address their questions to PARK2009. 

 

I would suspect that all of the international orders (outside the USA) would have received their N by May 02, 2016 and if you make a request on the NILOTINIB GROUP BUY thread for people to report on the reception of their order, I believe most everyone will respond to your question(s).

 

I have been in communication with LOGIC frequently (every week, sometimes twice a day) during the months of February, March and April (up to today). It has been a long and complicated purchase due to many factors outside of anyone's control. LOGIC would have had to appeal to us (purchasers) for an increase in price if it were not for an anonymous donation of several hundred dollars. I get the impression that you have not followed the NILOTINIB GROUP BUY thread. You will realize all the different turns that occurred in the acquisition and testing since LOGIC posted opening all the various situations as they occurred. Personally, I still owe LOGIC money due to the stunning mischief of PayPal. I intend to make a purchase now and send what I owe plus a (small) donation myself to LOGIC for the outstanding work he has performed and having never asked for help; financially.

 

I hope that this has clarified any question(s) regarding the veracity of the purchase.

 

I hope you realize that LOGIC must communicate to everyone when the threshold has been reached; each person who expressed an interest needs to be individually notified. LOGIC is a conscientious young man who is very diligent and cautious; responsible. The purchase threshold has been reached now. I communicated that to all interested parties today, including yourself. LOGIC will be shutting down Round Two of the Group Buy, everyone needs to send their funds, first providing a delivery address so that LOGIC can send to each participant the exact amount of funds to be remitted. That is a lot of work in itself; there are people all over the globe participating:-)


Edited by LongLife, 28 April 2016 - 01:49 AM.


#263 glowso

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Posted 28 April 2016 - 02:14 AM

@LongLife: I certainly don't follow you. I actually was careful not to talk about your communications in detail as I felt that it was inappropriate. Further while you did explain some regarding shipments (please feel free to elaborate here if appropriate), there have been no recipient experiences yet shared and that is what we're looking for.


Edited by glowso, 28 April 2016 - 02:14 AM.


#264 LongLife

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Posted 28 April 2016 - 03:24 AM

GLOWSO:

Thank you for your reply. I appreciate you respecting privacy. The main GroupBuy page does explain, throughout the thread, the various difficulties that were encountered to make the purchase happen. We were all concerned. The suggestion of the purchase was initiated by Resverotrol_Guy, who suggests these things from time to time, but he could not go through with it. His friend, who lives literally on the other side of the globe, decided to go through with it; LOGIC. The grave problems are due to exchange rates and new banking laws which has made this very difficult and expensive. PayPal chewed a big piece of my funds and held my money for more than three weeks and I was the largest purchaser at the time. Even after multiple communications with PayPal, so we all learned not to make purchases of product or services but to send Person-to-Person via PayPal. I got hammered twice by PayPal. I had to go through a family member and set up another account to use them now.

 

You don't think all of us who purchased have been with fingers crossed the whole time? LOGIC performed well and he was mugged, his car got toasted and he had several problems with the authorities because of the volume of money being moved but he worked through it. He had to dump more of his own money into the deal to get things done and the running around with the financial authority. He never asked for a penny and if it were not for a donation coming in at just the correct time, he would have had to ask to increase the price. he had already asked one because of the PayPal fees. Live and learn. We still got the N for 100's of % less than wholesale at a pharmacy, where available.

 

The PARK2009 posts have been very informative and I recommend that everyone read them since it is our second person to comment on real live application and the first person who has and is using N (TASIGNA) for Parkinson. I am pleased that we have that person sharing information, it makes me feel more confident now in the N and what to expect...besides the studies. So there is now one person that is sharing personal use knowledge. One fellow shared some information concerning what it did (positive results) for his father with Parkinson. He could not afford to keep using it though. Maybe now he can.

 

If you are on the side line waiting for people to reply with their personal experiences of what was purchased, I doubt anyone could blame you. It will only require patience for 30 to 45 days.

 

LOGIC has committed to continue with the deal and upon my requesting, he is now looking for PlanB suppliers, which will be used to make a couple of small purchases to test their quality. If you are interested in N you may know someone with Parkinson (?) and if you do then you may understand why LOGIC and others are working to make this happen. No one is trying to sell a product, they are trying to help people in need of a resolve.

 

We had to let people know that the current purchase is being made now that there has been enough commitment. This is no different from the first purchase procedure. I have volunteered to assist LOGIC on any aspect he may need some relief and have been doing so for sometime now. That is why I send out the PM's. LOGIC is yet a full member of LongeCity.com and he is limited on the way PM's are done so it is tedious. It took me about 22 minutes today to send those PM's out and I thought I was fast. I also answered you during that time so it really was not the full 22 minutes now that I think about it :-)

 

Again, if you ask on the main thread I am confident that many who purchased in the first round will reply to you. I sent you the link, correct? Then you will be able to communicate further with each one. 

 

Meanwhile, I am attempting to organize a protocol and suggest all buyers to follow it and report back. That way we will have a set standard of practice and not be filling up the thread with many multiple questions being addressed to each N tester for the benefit of all those who are interested at the outcome of the use of N. We would be able to simply post once every two weeks the results. If you have any suggestions in this regard, please PM me or post it on the main thread and possible we will have further inputs.

 


Edited by LongLife, 28 April 2016 - 03:30 AM.


#265 Logic

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Posted 28 April 2016 - 07:50 AM

So I got an email from LongLife telling me that a SECOND Group Buy is closing soon and to contact LOGIC, etc. I'm concerned about the first group buy since we've not heard about this and I know a couple people who would like to buy into this immediately if this is a legitimate offering... I find it disheartening that we've not heard about the first round of experiences here from buyers, etc. and so I'm cautious about just jumping in.

 

Hi Glowso and Cjlmom.
Welcome to Longecity.

 

Group buy round 1 is complete, except for 2 recipients for which there were address queries.

Ceridwen was one of the address queries due to her address not having a street #, but a house name..!? :)  She took a bit of getting hold of, to clear this up.

 

ie:  Everyone has received their Nilotinib, except these 2 (And myself. My tracking # says its in Johannesburg)
NB:  That I am assuming this as people are wary of possible IP issues and I was asked to change a post where I named a member that contacted me to say he had received his N and thank me...
You can be sure that, like Ceridwen, anyone who has not received their package WILL make that known in the main thread! (Linked below)  :)

I think people will start to post their experiences soon, but as Longlife said;  it's early days and too soon to expect to see positive results just yet.

NB that this thread was supposed to just be an 'advert' and the 1st post has a link to the main thread where all the discussion and the trials and tribulations of getting this whole group buy done is documented is here:

http://www.longecity...roup-buy/page-1

I apologise for not making that clearer.

 

I hope that your reading of the above link clears up some of your concerns?
Please feel free to post any further queries and concerns there. (The above link)

 

I think a Nilotinib Experiences thread is called for to keep the main Group Buy thread focused.
I will create one and post a link to it here and in the other 'advert' threads presently.

 

Thx LongLife:

Thx for all your help with PMs, fielding queries here and general advice LongLife.  Much Appreciated!


Edited by Logic, 28 April 2016 - 07:54 AM.

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#266 Logic

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Posted 28 April 2016 - 10:22 PM

Can anyone explain how this would be encapsulated? A good scale? Does a person need to add filler?

 

Good questions as there are a good # of new members on this thread and guessing the dose is out!

 

You get trays which hold open capsules in made to fit holes, to make them easy to fill.
Using them would require a filler of some sort because the size of the capsule is constant and the volume it holds wont be equal to the dosage you want unless you are very lucky.

 

I think Pterostilbene or, better yet, a standardised blueberry powder extract may be a good filler due to it's:

  • Hemolytic (Blood)  protective effects
  • Oxidized low-density lipoprotein protective effects.
  • Hepatic (Liver) protective effects.
  • etc.

It is however also a mTOR inhibitor which is one way to upregulate autophagy.
This means that it may make the Nilotinib more or too effective..?

http://www.hindawi.c...cl/2013/575482/

 

Another choice may be a Potassium and Magnesium mix:

http://www.gnc.com/G...ductId=16655316

NB that too high levels of Potassium and Magnesium may be as bad as too low..?

 

 

Local scale threads:
http://www.longecity...ommend-a-scale/

http://www.longecity...s-001-and-500g/

http://www.longecity...c/12059-scales/

http://www.longecity...ood-scale-help/

http://www.longecity...le-suggestions/

I dont have a list of encapsulation threads on hand atm.
Use GoogleSiteSearch in the search dropdown menu (top, 3rd from right) here.  

There are sure to be some.


Edited by Logic, 28 April 2016 - 10:55 PM.


#267 Ali Ismail

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Posted 29 April 2016 - 12:30 AM

Hi  Guies,

 

A reminder it might take at least 6 to 8 weaks to see results or even more on Nilotinib.Please refer to the notes below.And is there any parkinsonism user trying Nilotinib.

 

Best Regards

Attached Files



#268 Logic

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Posted 29 April 2016 - 08:09 PM

Hi  Guies,

 

A reminder it might take at least 6 to 8 weaks to see results or even more on Nilotinib.Please refer to the notes below.And is there any parkinsonism user trying Nilotinib.

 

Best Regards

 

Thx for the notes Ali
(I have begun a reply to your PM and will send it soon)

I am posting the notes you provided, for convenience and to highlight some points:

 

Notes on February 4th, 2016, conversation with participant in
the Georgetown Study of Nilotinib (Tasigna) for use with PD Patients.

  • Dr. Pagan, co-author of the study, is patient’s neurologist.
  • Tasigna was found to reduce TAU in the blood and A-synuclein in the spinal fluid.
  • Patient began with 11 other participants in February of 2015.  Dose was 150 mg per day.
  • Results for all participants were amazing.  In this particular patient’s case, he could walk again, his vocal volume increased, his speech articulation improved, constipation disappeared … “improvement in every way.”
  • Study ended 5 August 2015.  Novartis originally said they would provide the medication to participants on a “compassionate basis” but they reneged for some reason. 
  • Patient’s symptoms began to deteriorate, so they decided to buy the expensive drug on their own and began taking it again on 22 November 2015.
  • After about 2 months experience of positive results commenced again.  “An amazing drug. Such good news and hope for PD patients.”
  • Only side effect is nausea, which goes away.
  • She is not in direct contact with any of the other participants but has heard that 5 of them are taking the drug on their own, buying it in Canada.
  • This patient takes it in addition to his other PD meds.  At about 4 months, when he shows signs of over-medication (as recognized by observation of his wife and the patient) they reduce other med levels.
  • This patient was at an advanced stage when he began the study.
  • They said “be sure to get an EKG prior to taking it to check “QTc interval” because some people can have a negative cardio reaction.

That Novartis reneged on their promise is borderline criminal IMHO!?  :mad: 
I wonder if there is any way to get in contact with them and point them here!?


Edited by Logic, 29 April 2016 - 08:12 PM.

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#269 centralFloridaMan

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Posted 29 April 2016 - 10:10 PM

Before taking nilotinib be sure to check on interactions with other medicines you are taking.  An app called  "epocrates" is free and will do this

checking for you.  I discovered interactions with flomax, avodart and zocor!


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#270 Logic

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  • Location:Kimberley, South Africa
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Posted 30 April 2016 - 11:26 AM

Group buy round 2:

 

I plan to have this round of Nilotinib tested and ready for final postage buy Tuesday 31 May.  (1 Month's time.)

The cutoff date for this group buy (round 2) is Wednesday 11 May to allow ample time for shipping and and testing etc.

 

 

The following people have committed to a 2nd group buy of Nilotinib and have paid:

NAME:                     AMOUNT (grams):

David Watford         300

centralFloridaMan   150

mlsirkis                    50

deetown                  20

Total                       520

 

 

The following people have committed to a 2nd group buy of Nilotinib, but have not yet paid:

NAME:                    AMOUNT (grams):
Logjam                    15
Ark                          10
prophets                  20
izan82                     10
gedanken                10

Total:                       65

 

The following people have have shown interest in the 2nd group buy of Nilotinib:

 

NAME:

Linda Gray

Ali Ismail ?
aaCharley
Sleepdealer
yogi
glowso
cjlmom
betaeyes

 

Contacting me and reqd info:

Anyone interested in the group buy is welcome to contact me via PM.

(I am now a full longecity member, so am able to PM everyone back without limitations.)

The info I require to complete my spreadsheet is:

  • Your real name and mailing address. (a contact # for the mailing may help too; if you are not at home at the time of delivery etc)
  • Your Email address. (This makes it easier for me to contact you as my PMs are still limited)

I will then Email you with the full amount required for the Nilotinib,including:
Postage via USPS (with tracking #) to your door.
The small paypal fee for personal payments.

The reason for using the personal payment options is that:

  • It's a lot cheaper.  1% + $ 0.30 instead of 3.5-4.5%
  • There is no chance of PayPal holding the funds for 21 days as happened with LongLife's payment.

Pricing: (to include bank transfer fees to the supplier) $ 10.15 per gram.

The variable cost of postage and Paypal fees will be added individually.
USPS domestic is $ 6.80
PayPal Personal Payment fee for US citizens to me is 1% + $ 0.30


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