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oya99

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Today the CEO emphasized that NurOwn is not a cure. The results are mixed at best, some patients see improvements, some see slow down, some others might not respond to this treatment based on Phase 2 results according to the Chief Medical Officer of Brainstorm.
The CEO cautioned that people should not put all their money into any treatment that is out there thinking it may be a cure.
This agrees with Ted’s cautions on adjusting expectations about any treatment, there is no cure yet, and NurOwn certainly does not claim to be one at this point. Yet, it is the possibly the most promising treatment in slowing down ALS.
 

jethro

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@oyo&ted
thanks for advices and reviewing all the things from your point of view.
@oyo i tried to reach someone in israel, but all waves lead to mary kay turner which is brainstorm's membrane, or we didn't understand eachother. i tried to apply
for treatment 1. in israel in october, and they told me to contact them in 3 months. nobody answers. they treat me like table tennis ball. after that, i tried to apply for
2. treatment in usa, but i'm not eligible, 'cause i'm not canada&usa citizen. all waves lead to brainstorm: i'm not eligible, or there's no trial in israel.
ok, there's no trial in israel, i'm not eligible, but if there's treatment on saturn, i'll pay for it!!!! i don't expect mercy&compassionate treatment, i wanna pay, i want to give you money for service,
i have dollars, euros, shekels, whatever. i have money... i want to eliminate damned 50% of lost time with money - possibility to be in placebo group!
ok, i can't say it in hebrew, but i think that my english is clear enough.
please, give me advise: is there any kind of treatment in israel with nurown (which hospital, who's in charge?), not "just stem cells". disclaimer&others included.
@oyo, you said "it is in treatment phase in israel". where? petach tikvach? MKT said thet there's (just) possibility for hospital exemption to take compassionate patients for fee, but they don't know
when. no time table, no info... i dont want to be compassionate patient, i don't want to wait and lose time to spare some money. my ALS is riding and it takes my power every day.
dont want to save money/sell my life&health. if i dont spend my money on myself, my successor will spend it on a waiter's tips, cars, wardrobe... thinking that (my) money and rain felt from a same cloud.
i have no family. just daughter and my ex wife. i don't count on her lovers and his children. i live alone. still walk, work, no help tools, still have (enough) power to make something for myself, but as ALS
progresses, poisoning by lead (bullet) is all remains in a (hope) year or so.
@ted you have same sence for humor as i have. same way of thinking...
i had enough time since i am diagnosed to read part of ncbi refer to als, patientslikeme, alsuntangled, forums worldwide etc., so i think i learned something about ALS.
i talked to many neurologists. they learned everything they wad to and that is not questionable, they were A students, but they are not entusiasts, they don't have als. it is true that they saw many
people with als, but every patient is clinicaly specific. biochemists, pharmacologists, neurologists... all they try to invent cure/drug/pill against ALS. typically. "every disease should be cured
by pill/drug, so let's donate for investigation!"
that's not way out.
there's no cure for als and never ever will be. it is reaction. it is state of organism. there's malfunction in BBB (blod-brain barriere), semipermeable lipoprotein cell membrane is damaged and neurons die from the inside cause they are poisoned.
hence, motor neurons are affected by toxins caused by oxidative stress who enter through membrane. neuron dies - muscle atrophy.
it is not possible to patch leakage BBB easy, by drugs.
antioxidans do the job, but not completely. edaravone is a superantioxidans, just like big watermelon full of antioxidans. glutamate is (just) one of the poisons. riluzole block it's releasing, but is just one grain.
this is not plumber's work. nothing is effective as nature is. i am not religious, i saw bible just on internet, i look like hillbilly, you would bet that i have problems in reading and writing
since elementary school, but i think that my opinion is established.
stem cells are most powerfull weapon against als by now. it doesnt heal (wont use word "cure") cause of als, but it "repairs" consequence. i think that healing is possible if organism didnt deteriorate too much. nelda buss is someone i can not explain.
if it is such a dammaged, nothing can help. best thing what can happen is plateau. plateau may occur at any level.
many "clinics", "specialists", "wannabe experts" are playing game with unprocessed stem cells. result is death, tissue dammage etc...
stem cells are mighty weapon, but you should know how to use it. if nurown will not heal als, it can slow it down significally at least. rest of problem i am leaving to myself, supercompensation...
brainstorm is inc on nasdaq. they are experts, but also traders. they have in pipeline preclinical progresive MS and autism... :))) do you believe that? i don't. it is direction of their stock price. nurown is
a different thing. promisse less, do more.
i have just one report from III trial. i'd like to see someone who was on treatment in israel.
have no family, i have money which i dont need, i'm modest, stil mighty enough. by last year i could move a mountain, so i can not imagine myself in electric wheelchair. that is me. can't help myself. if i kill my hope, i made a suicide.
 

jethro

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@oya, nurown is not available anywhere outside trial phase III. (1:18:18)
1:17:10 about cost. CEO jumped over that question saying: high! cant tell you that right now. i guess 35000-55000 usd/3 shoots. excluding all expences, travel, accomodation etc.
 

jethro

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admin, where is my morning post? still reviewing? sweat could fill mug while i wrote it.
 
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Hi Just,

I too was curious about Al's protocol and kept a copy. From a post dated Jan. 29, 2017

Good Day all, Kim and Brad asked about my protocol, this is the vitamin program given to me by ALS Canada, ALS Clinic.
Vitamin E ( natural source ) 2000UI per day.
Vitamin C. 1000 mg ( time release ) 500 mg twice a day
American Ginseng approx. 500mg. can not be bought exactly 500 mg. daily dose.
Resveratrol ( red grape seed ) one to three capsules per day
Acetyl -L-Carnitine. start at 500 mg then up to 3 gr. per day
Co-Enzyme. Q10 Approx.100-180mg/day. 60 mg Capsule twice a day
Creatine. 1Tsp. add to apple sauce or yogurt, juice eat.
Vitamin D 2000 iu per day. "". ". ". "
PQQ ( Ptrroloquinoline Quinone ). 10-20 mg
Calm. magnesium

Below is a list of drugs prescribed by the ALS clinic
Rilutek.
Baclofen
Tizanidine 4 mg
Pramipexole Dihydro.

I take all meds and vitamins by feed tube. I eat full meals now by mouth though very slowly, but it works.

Al
 

mbg1977

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@oya, nurown is not available anywhere outside trial phase III. (1:18:18)
1:17:10 about cost. CEO jumped over that question saying: high! cant tell you that right now. i guess 35000-55000 usd/3 shoots. excluding all expences, travel, accomodation etc.
my guess is 300k+ usd. rumors pointing out this way

how would they ask such a big money for a non cure treatment ?
 

KarenNWendyn

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how would they ask such a big money for a non cure treatment ?[/QUOTE]

That’s why it’s called”Big Pharma”.
 

oya99

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I cannot imagine NurOwn treatment being cheap, Radicava's yearly price tag is $146K in the US (just the drug not including the infusion treatment part); and the discussion boards show how little data there are on its effectiveness.
My guess (and that is only a guess) Brainstorm's treatment program in Israel is only for their citizens at this point; but I want to emphasize that I do not have any first hand information on this.
If and when NurOwn becomes available based on the CEOs interview it is going to be expensive and at their discretion only.
Jethro, my husband and many here in this forum are in your position and we are very aware that our options are very limited. I hear and understand your frustrations (to the best of my ability as a CALS). But I also see that that there is a possibility of a treatment (not a cure) in the near future...
 

jethro

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@mbg1977 thanks for links! 300k? no, it can not be. it is true that there might be problem with prepairing rooms for injecting (desinfection, team etc), but that is not surgical operation! people in phase III don't go to surgicals , they just receive injections. as far as i know. i dont think that there will be sucha a summ. clinics in EU charge 12-15000 usd/injection. of course, this is charlatan job, but it is paid as a serious scientific/alternative job. lets suppose it is 300k. there are app 500k pals in the world. maybe 1000 pals are able to pay such a sum. it is 300 millions. lets assume that there's constant ammount of pals with same economical distribution. it means 300mill usd/year! some die, same number of pals emerge. i want to play a game with brainstorm inc. their stocks were 2 usd, now they are 4,6 usd/share on nasdaq. target is 12-15 usd/share. it is huge ammount and no chance for BCLI to grow like that. i'm in a phase to sell everything i can and buy BCLI stocks. i have to be very carefull, cause in my place dont even know what i am suffering from. shares? what a hell is share?um... to share data on internet?? i have to copy/clone myself to help myself, but ALS should be excluded. for 300k i can clone myself, rise and educate.
@oya (sorry for "oyo", it is vocative in my language), i know that this pot is big enough so many of us can fit in. i have money, but not 300k+. what can happen? i believe in nurown and i believe that i will survive it's appliance. also, i think that i wouldnt survive shock if price is like that, so there's no difference - dying of als or shock. radicava is app 140k, but you can buy radicava in japan for 4800 eur/year, 60 mg. find a russian nurse like ted, and there will be no problems. as CEO said, 11 months after last trial patient, nurown will be available. he said early 2020. it is big project, it grows almost 10 years. nurown is not just ALS healer, it is rejuvenate and mighty weapon. it affects whole tissue. nobody talks about that. it is not orphane drug. it is not drug at all. it is something completely different. question is: how many times it should be applied. i bet it rises life expectancy at least 10%. RTT option is a foggy... you have right to try but take care of all the things needed to try that. get a "drug", administering... and financially manage all that. Finally, i think that nurown is more sophisticated tool than is needed to leash ALS.
 
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jethro

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... one more thing: i have info from trial patients who received non-placebo in trial III phase. am i allowed to share info? admin?
 

Nikki J

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In an ongoing placebo trial people don’t know they are getting the real thing. Neither do the doctors. That is the way a blinded trial works. The people you are in contact with are guessing/ hoping. Further every trial I have heard of tells their participants not to discuss their experiences while the trial is in progress so I have been surprised by public reports that have been made.

If someone told you something and said it was fine to share then you can say you heard from a person who THINKS they got the real thing and xyz happened

Please use short paragraphs and spaces. Your long posts are very hard for us to read. Thank you
 

jethro

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ok nikki.
obviously, it is evident that person A got a "real thing". even it should be double blind, progress you can not hide. maybe it is placebo strength. anyway, it is better to keep info which is not 100% accurate.
 

KarenNWendyn

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Perhaps I can offer a little insight into the exorbitant cost based on my discussion with the research coordinator in San Francisco for the phase 3 trial.

Much of the cost is due to the expense of the bone marrow extraction procedure (it is extensively more complicated and time-consuming than a basic bone marrow biopsy), and then the cost of storing the marrow at extremely cold temperatures in a special facility for whatever length of time the person will be receiving the stem cell transplants.

The marrow samples are treated to grow neuroprotective factors. These factors are harvested and then injected into the spinal cord (transplantation) by a physician skilled at the procedure. Transplantations are repeated as a series (3 times in the study).

What is unclear to me from the estimated cost of ~$300,000+ is whether or not that includes doctor and hospital fees (I suspect not), and just how many transplantation procedures are included. It may just be the cost for treating the marrow and extracting and growing the stem cells. If the procedure must be repeated every several months for life, the costs would be expected to mount considerably.
 
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