Hough Ear Institute's Hair Cell Regeneration Project

#1,413
DimLeb said:
Injection? What?! Are they sure about that?
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I asked Oblato if they can clarify. I will share their reply when I get it. Dr. Santosh Kesari might also shed a light on this as apparently he is involved in the EAP; some of us are planning to talk to him, if I remember correctly, so hopefully we will gather more info soon.
 
#1,414
Gee82 said:
I asked Oblato if they can clarify. I will share their reply when I get it. Dr. Santosh Kesari might also shed a light on this as apparently he is involved in the EAP; some of us are planning to talk to him, if I remember correctly, so hopefully we will gather more info soon.
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Thank you honestly, we are very grateful for the information and looking forward to seeing what comes out of this!
 
#1,415
823-AAFD1-70-E6-4129-854-C-A5593-A20705-F.png


There are two different drugs here it appears. A pill and an injection. This was discussed very early in the thread. I haven't kept up with this and was away from the board for quite some time so I have no further info, but there may be more following the post I screenshotted above.
 
#1,416
I have not followed this thread lately. What a cliffhanger...

I keep my fingers crossed that you can work something out around this "compassionate use".

Might be the way forward for a lot of the other candidates in development.
 
#1,419
David S said:
I have not followed this thread lately. What a cliffhanger...

I keep my fingers crossed that you can work something out around this "compassionate use".

Might be the way forward for a lot of the other candidates in development.
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My consultation with Dr. Kesari is next Friday. Wish me luck, folks. Going to bawl my eyes out which is a daily occurrence and see how far that gets me. My case is severe at least in my perception so it won't take much for me to have a breakdown during the appointment.
 
#1,421
First they ask for donations, then they say pill, then they say a journalist got things wrong, then Oblato's website mentions nothing about hearing loss in their pipeline, then they say it's a cancer pill that works for the ears, then they say their pill can cure everything from hearing loss, Meniere's disease and tinnitus! It's a promo all in one :)

Amazing!

Oh! And it's an injection you have 3 times a week! What happened to the Frequency Therapeutics' cake theory and the watering too much seeds thing!?
 
#1,422
The Tinnitus Talk Podcast episode went over a number of similar topics. One was the two different drugs that were being developed by Hough Ear Institute. The pill is primarily intended as an aid to those who've experienced sudden auditory trauma like that of an explosion. Hence the "bomb blast pill" term. This was focused towards repairing the damaged nerve endings and their relationship with tinnitus. In the case of the injection, basing from memory of the podcast, is intended to be used in the restoration of hair cells. That was what the doctor involved on the episode said. Not the funding coordinator De Moss.

The cancer focus has to do with the effects of chemotherapy on nerve endings in the ear which is a common site of both injection and damage during the treatment of the disease.
 
#1,423
Oblato's reply:

"The dosage form for NHPN-1010 is oral form, but we just only support the EAP process with the intravenous injection at this moment due to internal situation."
 
#1,424
IntotheBlue03 said:
My consultation with Dr. Kesari is next Friday. Wish me luck, folks. Going to bawl my eyes out which is a daily occurrence and see how far that gets me. My case is severe at least in my perception so it won't take much for me to have a breakdown during the appointment.
Click to expand...
Hey, please do me a favor, stay calm during your consultation. Trust me, panicking to doctors will not get you anywhere, especially for tinnitus. We definitely don't want anybody to rub off wrong on him, and then he decides that the drug was not worth the hassle and is not something he wants to deal with because he usually only works with cancer patients.

I did tell everybody to do it and try to get it. I'm not sure how new you are to tinnitus, your profile is recently created, maybe you had it longer and created the profile recently. Tinnitus is a horrible, scary disease no matter what, but remember this drug is for compassionate use. This drug is for somebody who has had the disease for years and has tried every alternative, and is horribly suffering or dying. I'm not sure if he would apply a recent tinnitus case for compassionate use, unless I am wrong and you have had tinnitus for a while. I have studied this specific drug for half a decade and know its properties, and how it directly affects the inner ear.

Truly, besides my pretty bad tinnitus, I have catastrophic nerve pain in my ears that I believe can be treated with this drug. And my life depends on this drug or another regenerative medicine. I have not worked in 9 months. I have been homebound for 7 months. I have been throwing up from the pain. I can barely shower. I can't exercise, I can't get groceries, I can barely talk, I am completely incapacitated, not just by tinnitus, but pain hyperacusis as well. Not only do I have to listen to my tinnitus all day in silence, I also have to endure nonstop pain and depression from how much this has taken from me.

So please I beg of you, do not talk to him crying or panicking saying you were told by somebody on a forum that this drug could work. My appointment will probably be after yours. I do not want him getting the wrong idea. I have read some of your posts and you seem like a smart person, I hope you have done your research about this drug and can impress him. I will not undermine your suffering. I want you to get the drug. I want you to get better. I want everybody cured from this disease. If you truly think you will not be able to hold on much longer and your entire life has crumbled into pieces, by all means get this drug. Please be calm and composed and do not risk the chance of me or others getting it from him. I know any doctor can apply for it but most don't care or even know about this drug so most won't do it. This doctor does. I hope you get relief soon.
 
#1,425
IntotheBlue03 said:
Is it a surprise that everything is always "5-10 years away". Really hope that if we do get relief this decade that it will be available to the masses and not derailed by any existential threats, lack of funding, etc.
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Even if it is 5-10 years away, it would mean so much for the whole community. If we just could have reports of 1-2 treatments that gives meaningful results, it would give us all so much hope and absolutely boost the ones that are struggling the most.
 
#1,426
Brian Newman said:
Hey, please do me a favor, stay calm during your consultation. Trust me, panicking to doctors will not get you anywhere, especially for tinnitus. We definitely don't want anybody to rub off wrong on him, and then he decides that the drug was not worth the hassle and is not something he wants to deal with because he usually only works with cancer patients.

I did tell everybody to do it and try to get it. I'm not sure how new you are to tinnitus, your profile is recently created, maybe you had it longer and created the profile recently. Tinnitus is a horrible, scary disease no matter what, but remember this drug is for compassionate use. This drug is for somebody who has had the disease for years and has tried every alternative, and is horribly suffering or dying. I'm not sure if he would apply a recent tinnitus case for compassionate use, unless I am wrong and you have had tinnitus for a while. I have studied this specific drug for half a decade and know its properties, and how it directly affects the inner ear.

Truly, besides my pretty bad tinnitus, I have catastrophic nerve pain in my ears that I believe can be treated with this drug. And my life depends on this drug or another regenerative medicine. I have not worked in 9 months. I have been homebound for 7 months. I have been throwing up from the pain. I can barely shower. I can't exercise, I can't get groceries, I can barely talk, I am completely incapacitated, not just by tinnitus, but pain hyperacusis as well. Not only do I have to listen to my tinnitus all day in silence, I also have to endure nonstop pain and depression from how much this has taken from me.

So please I beg of you, do not talk to him crying or panicking saying you were told by somebody on a forum that this drug could work. My appointment will probably be after yours. I do not want him getting the wrong idea. I have read some of your posts and you seem like a smart person, I hope you have done your research about this drug and can impress him. I will not undermine your suffering. I want you to get the drug. I want you to get better. I want everybody cured from this disease. If you truly think you will not be able to hold on much longer and your entire life has crumbled into pieces, by all means get this drug. Please be calm and composed and do not risk the chance of me or others getting it from him. I know any doctor can apply for it but most don't care or even know about this drug so most won't do it. This doctor does. I hope you get relief soon.
Click to expand...
I do plan on remaining professional as I always have with the dozens of doctors I have seen. I am in a state of crisis but I do my best to remain calm. I have had, what to me and from analysis I've done across the board, severe tinnitus for over 2 months at this point, and, while I do not like to compare suffering and feel for everyone on this board, in my personal experience, it has completely destroyed my life and continues to do so. My tinnitus is constant, centralized, high frequency (14-15 kHz) and oscillating with a painful zinging quality as well as hyper reactive along with sound sensitivity. What this has meant is I was in fight or flight mode for the first 6 weeks and nearly hospitalized, and still struggling with the severe anxiety constantly despite medication. I lost the ability to leave my home due to the severe panic last week and am working to try and reverse that. It's also completely isolated me as I have spent nearly 2 months in near silence pacing like a prisoner in my home because of the reactivity, so most of my life no longer exists. I've lost a number of relationships as people no longer know how to deal with me. And I've just lost my supplemental income which was a bartending job as well as threatening my full time job because I can barely function. Not to mention the bankruptcy which is on the way from the thousands and thousands of dollars I have spent between bad healthcare and alternative treatments that did not touch this at all.

I am very sorry to hear about your situation and can't imagine the pain you are going through but I will do my best in my consultation to express the severity of my situation and the necessity of compassionate use. I can't tell you how many times, as many others, have experienced that I have been belittled for this condition regardless of whether I was emotional or not. Based on what we know with Dr. Kesari having experience with compassionate use we can at least have hope that he is a more understanding doctor than the rest and I would hope he wouldn't allow any experience with one patient to influence another.
 
#1,428
Brian Newman said:
Hey, please do me a favor, stay calm during your consultation. Trust me, panicking to doctors will not get you anywhere, especially for tinnitus. We definitely don't want anybody to rub off wrong on him, and then he decides that the drug was not worth the hassle and is not something he wants to deal with because he usually only works with cancer patients.

I did tell everybody to do it and try to get it. I'm not sure how new you are to tinnitus, your profile is recently created, maybe you had it longer and created the profile recently. Tinnitus is a horrible, scary disease no matter what, but remember this drug is for compassionate use. This drug is for somebody who has had the disease for years and has tried every alternative, and is horribly suffering or dying. I'm not sure if he would apply a recent tinnitus case for compassionate use, unless I am wrong and you have had tinnitus for a while. I have studied this specific drug for half a decade and know its properties, and how it directly affects the inner ear.

Truly, besides my pretty bad tinnitus, I have catastrophic nerve pain in my ears that I believe can be treated with this drug. And my life depends on this drug or another regenerative medicine. I have not worked in 9 months. I have been homebound for 7 months. I have been throwing up from the pain. I can barely shower. I can't exercise, I can't get groceries, I can barely talk, I am completely incapacitated, not just by tinnitus, but pain hyperacusis as well. Not only do I have to listen to my tinnitus all day in silence, I also have to endure nonstop pain and depression from how much this has taken from me.

So please I beg of you, do not talk to him crying or panicking saying you were told by somebody on a forum that this drug could work. My appointment will probably be after yours. I do not want him getting the wrong idea. I have read some of your posts and you seem like a smart person, I hope you have done your research about this drug and can impress him. I will not undermine your suffering. I want you to get the drug. I want you to get better. I want everybody cured from this disease. If you truly think you will not be able to hold on much longer and your entire life has crumbled into pieces, by all means get this drug. Please be calm and composed and do not risk the chance of me or others getting it from him. I know any doctor can apply for it but most don't care or even know about this drug so most won't do it. This doctor does.I hope you get relief soon.
Click to expand...
My fullest sympathies and wish you the best of luck with this.
 
#1,429
IntotheBlue03 said:
I do plan on remaining professional as I always have with the dozens of doctors I have seen. I am in a state of crisis but I do my best to remain calm. I have had, what to me and from analysis I've done across the board, severe tinnitus for over 2 months at this point, and, while I do not like to compare suffering and feel for everyone on this board, in my personal experience, it has completely destroyed my life and continues to do so. My tinnitus is constant, centralized, high frequency (14-15 kHz) and oscillating with a painful zinging quality as well as hyper reactive along with sound sensitivity. What this has meant is I was in fight or flight mode for the first 6 weeks and nearly hospitalized, and still struggling with the severe anxiety constantly despite medication. I lost the ability to leave my home due to the severe panic last week and am working to try and reverse that. It's also completely isolated me as I have spent nearly 2 months in near silence pacing like a prisoner in my home because of the reactivity, so most of my life no longer exists. I've lost a number of relationships as people no longer know how to deal with me. And I've just lost my supplemental income which was a bartending job as well as threatening my full time job because I can barely function. Not to mention the bankruptcy which is on the way from the thousands and thousands of dollars I have spent between bad healthcare and alternative treatments that did not touch this at all.

I am very sorry to hear about your situation and can't imagine the pain you are going through but I will do my best in my consultation to express the severity of my situation and the necessity of compassionate use. I can't tell you how many times, as many others, have experienced that I have been belittled for this condition regardless of whether I was emotional or not. Based on what we know with Dr. Kesari having experience with compassionate use we can at least have hope that he is a more understanding doctor than the rest and I would hope he wouldn't allow any experience with one patient to influence another.
Click to expand...
Thanks. I appreciate it. Good luck!
 
#1,430
Brian Newman said:
I contacted Dr. Santosh Kesari of the Saint John's Cancer Institute to make an appointment.

Gonna do a virtual call with him and see if he can apply for the compassionate use on my behalf. This doctor seems top tier in his field.

I'll keep this thread updated.
Click to expand...
When do you have the appointment, Brian?
 
#1,431
IntotheBlue03 said:
Hi @Brian Newman, yes I did. Here's the number for the telehealth line and the email for the coordinator:

310-582-7600
melissa.alvarezamaya@providence.org
Click to expand...
@IntotheBlue03, @Brian Newman, I called yesterday to request a telehealth appt.

The lady said that she would email me an application form that I should fill including all my exams (MRI, audiograms, etc.) for Dr. Kesari to review and then he would decide whether to set a telehealth call with me.

Were you also requested to submit your exams in order to be accepted for the call?
 
#1,434
Hi all,

Just had my consultation with Dr. Kesari.

The Good News:

The chronic tinnitus patient had a positive response but was not treated orally, they were treated via IV. That is what is currently available at Dr. Kesari's location and nowhere else in the US. Also the effects were short term but apparently reproducible. That's as much as I could pry away about this patient's experience.

Not So Good News:

The oral formulation is not available yet, he has a meeting in 2 weeks to see if this can be made available in the next 2 months for expanded use in the US.

I still inquired about if IV use could be made available locally ahead of the oral release and he advised he will look into this in my location. It's just a matter of finding a local HCP and center to administer this.

I will follow up in the next couple weeks. Not out of the woods yet. Hope this helps.

@Brian Newman, Dr. Kesari is very kind and compassionate and I am sure your consult will go even better.

Here's to hoping we can get some movement on this regardless of route of administration.
 
#1,437
IntotheBlue03 said:
Hi all,

Just had my consultation with Dr. Kesari.

The Good News:

The chronic tinnitus patient had a positive response but was not treated orally, they were treated via IV. That is what is currently available at Dr. Kesari's location and nowhere else in the US. Also the effects were short term but apparently reproducible. That's as much as I could pry away about this patient's experience.

Not So Good News:

The oral formulation is not available yet, he has a meeting in 2 weeks to see if this can be made available in the next 2 months for expanded use in the US.

I still inquired about if IV use could be made available locally ahead of the oral release and he advised he will look into this in my location. It's just a matter of finding a local HCP and center to administer this.

I will follow up in the next couple weeks. Not out of the woods yet. Hope this helps.

@Brian Newman, Dr. Kesari is very kind and compassionate and I am sure your consult will go even better.

Here's to hoping we can get some movement on this regardless of route of administration.
Click to expand...
Thanks, I'm glad you got some good information. My appointment is in a few weeks. I'll let you know what else I can find out. Let's get this drug moving. That's a bummer it's IV but the pill should be good too if we can get it. It's up to Oblato.

Did you discuss with him how to get you the pill since you're out of state? It's different from a doctor calling up your local pharmacy and saying you need some steroids.
 
#1,438
Brian Newman said:
Did you discuss with him how to get you the pill since you're out of state? It's different from a doctor calling up your local pharmacy and saying you need some steroids.
Click to expand...
I did not since the oral formulation isn't available yet. Please inquire him on my behalf if you don't mind. :) I'm sure he will hopefully have more information for you after meeting with Oblato, good timing for your consult.

At this point I'm honestly looking to get the IV rather than waiting for the pill since Dr. Kesari discussed it as an option. I'll see how far I get with that.
 
#1,439
IntotheBlue03 said:
Hi all,

Just had my consultation with Dr. Kesari.

The Good News:

The chronic tinnitus patient had a positive response but was not treated orally, they were treated via IV. That is what is currently available at Dr. Kesari's location and nowhere else in the US. Also the effects were short term but apparently reproducible. That's as much as I could pry away about this patient's experience.

Not So Good News:

The oral formulation is not available yet, he has a meeting in 2 weeks to see if this can be made available in the next 2 months for expanded use in the US.

I still inquired about if IV use could be made available locally ahead of the oral release and he advised he will look into this in my location. It's just a matter of finding a local HCP and center to administer this.

I will follow up in the next couple weeks. Not out of the woods yet. Hope this helps.

@Brian Newman, Dr. Kesari is very kind and compassionate and I am sure your consult will go even better.

Here's to hoping we can get some movement on this regardless of route of administration.
Click to expand...
Did Dr. Kesari mention the durability of the IV injection? If he said the effect is short term, did he point out how long does the benefit last?

Thanks.
 
#1,440
Eliot Martin said:
Did Dr. Kesari mention the durability of the IV injection? If he said the effect is short term, did he point out how long does the benefit last?
Click to expand...
No he didn't share any further information with me. I definitely did try to ask. I will ask again in my follow-up and advise anyone else having a consultation to do the same.
 

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