Regular Member Square1 Posted July 7 Regular Member Share Posted July 7 3 hours ago, uuuzi said: The current results are not optimistic does not prevent me from wanting to observe and try it. I'm actually preparing my own private experiment. Rationally, going from 0 to 1 is always difficult and fails most of the time. It still has potential, but it's nothing like the hype. There are no results so far that it works, and people here are too emotional. If you watch Dr Bloxham's videos carefully, he talks more about the change from scars to normal skin than hair follicles. When it comes to the topic of hair follicle regeneration, his words are always conservative. His experiment was also not designed to look at hair follicle changes, otherwise there would have been a before-and-after comparison. These are all hints that the results are not clear, yet people often go crazy just because of a picture that may have visual errors. This is not disrespectful. Staying sane is the best respect. I think we agree on the basic premise that more research is needed to confirm whether it works and if so, to what degree. Link to comment Share on other sites More sharing options...
Regular Member sansi Posted July 7 Regular Member Share Posted July 7 Possibly everyone is waiting for Dr. Barghouthis results. I do. The previous trial showed early promising results at month 4 and it's been 3.5 months since the last trial. A lot of things will get clear, so we are almost there. 1 Link to comment Share on other sites More sharing options...
Regular Member TV_on_LazerDisk Posted July 7 Regular Member Share Posted July 7 1 hour ago, Square1 said: In the cases of both dr. Bisanga and dr. Mohebi, Melvin spoke to them many times before about verteporfin and they declined to do trials in the past. This means that they have no problem saying "no" and that they knew that if they would speak to Melvin again, the topic of verteporfin would be likely to come up. So it is not that they were ambushed, didn't know how to respond and agreed because they couldn't do anything else. It is, however, possible that they took legal advise afterwards and then decided it wasn't worth the risk. However, can't patients agree to do it on their own risk so they can't sue afterwards? Might still be shaky ground though. This is my thought if we could encourage patients, make a list of doctors willing to try vert and have the doctors use trichloscopes Link to comment Share on other sites More sharing options...
Regular Member Fox243 Posted July 7 Regular Member Share Posted July 7 Is there a way we can vote for Dr. Barghouthi and Dr. Bloxham for the Platinum Follicle Award by the ISHRS? 3 Link to comment Share on other sites More sharing options...
Regular Member Dragonsphere Posted July 7 Regular Member Share Posted July 7 4 hours ago, Square1 said: In the cases of both dr. Bisanga and dr. Mohebi, Melvin spoke to them many times before about verteporfin and they declined to do trials in the past. This means that they have no problem saying "no" and that they knew that if they would speak to Melvin again, the topic of verteporfin would be likely to come up. So it is not that they were ambushed, didn't know how to respond and agreed because they couldn't do anything else I think if they were concerned with the legal complications that is understandable. But I agree, it would have been more ethical to be open rather than gas light the situation. If Dr Barghouthi initial results again show promise, I am prepared to donate $1.5k towards another trial. If we get to around $4k I am sure we could find a further doctor willing to run a trial. There are other Doctors who are actually using Verteporfin if the patient can provide it as shown earlier in the thread. Four documented cases of success will be enough to gain a beach head for this to eventually become mainstream. 2 Link to comment Share on other sites More sharing options...
Regular Member Square1 Posted July 7 Regular Member Share Posted July 7 1 hour ago, Dragonsphere said: I think if they were concerned with the legal complications that is understandable. But I agree, it would have been more ethical to be open rather than gas light the situation. If Dr Barghouthi initial results again show promise, I am prepared to donate $1.5k towards another trial. If we get to around $4k I am sure we could find a further doctor willing to run a trial. There are other Doctors who are actually using Verteporfin if the patient can provide it as shown earlier in the thread. Four documented cases of success will be enough to gain a beach head for this to eventually become mainstream. I think it is crucial to understand why surgeons right now are hesitating to use vp. If it is inderdaad lost revenue, we can ask them how much compensation they require to do a vp-trial. We should be specific about methods used, update intervals etc. If a doctor of a certain reputation gives a reasonable fee, only then does it make sense to raise money. We should not put the cart before the horse, e.g. raise money from people without a specific plan. 1 Link to comment Share on other sites More sharing options...
Regular Member Square1 Posted July 7 Regular Member Share Posted July 7 49 minutes ago, Square1 said: I think it is crucial to understand why surgeons right now are hesitating to use vp. If it is indeed lost revenue, we can ask them how much compensation they require to do a vp-trial. We should be specific about methods used, update intervals etc. If a doctor of a certain reputation gives a reasonable fee, only then does it make sense to raise money. We should not put the cart before the horse, e.g. raise money from people without a specific plan. Link to comment Share on other sites More sharing options...
Regular Member uuuzi Posted July 7 Regular Member Share Posted July 7 1 hour ago, Square1 said: I think it is crucial to understand why surgeons right now are hesitating to use vp. If it is inderdaad lost revenue, we can ask them how much compensation they require to do a vp-trial. We should be specific about methods used, update intervals etc. If a doctor of a certain reputation gives a reasonable fee, only then does it make sense to raise money. We should not put the cart before the horse, e.g. raise money from people without a specific plan. Most doctors are active on social media to attract attention, not to risk human experimentation. According to this principle, the best approach is to advertise and do nothing. If it succeeds, they will use the drug immediately. If it fails, they lose nothing. No consideration of price or law. The price of verteporfin is not high for surgeons, and the law is just a scrap of paper in the face of huge benefits. This also shows the drug does not show enough promise at present. Link to comment Share on other sites More sharing options...
Regular Member Nikoni Posted July 7 Regular Member Share Posted July 7 @DrTBarghouthi don't mean to rush you, has there been a follow up yet ? Link to comment Share on other sites More sharing options...
Regular Member TV_on_LazerDisk Posted July 8 Regular Member Share Posted July 8 (edited) I think after Bargouthis results come in it will be easier. I've known people with solid ideas in other fields that look promising and getting people on board is the hardest part. Tbh we should try reaching out to younger doctors who are starting out as well. Edited July 8 by TV_on_LazerDisk Link to comment Share on other sites More sharing options...
GeorgeClooning Posted July 8 Share Posted July 8 I think the pessimists are the ones that the ship has sailed for them to be a beneficiary of verteporfin, especially those that have had hair transplants already or weak donors. Basically ones that place an exceptional expectation on VP in order for it to have meaningful impact on them. Obviously it cannot be a miracle and offer 100% follicular regeneration and 0% scar formation however they may make a difference for the first prospective FUE transplant patients who could receive a relatively scarless procedure opening up many new options that weren't previously available. 1 Link to comment Share on other sites More sharing options...
Senior Member mr_peanutbutter Posted July 8 Senior Member Share Posted July 8 46 minutes ago, GeorgeClooning said: I think the pessimists are the ones that the ship has sailed for them to be a beneficiary of verteporfin, especially those that have had hair transplants already or weak donors. Basically ones that place an exceptional expectation on VP in order for it to have meaningful impact on them. Obviously it cannot be a miracle and offer 100% follicular regeneration and 0% scar formation however they may make a difference for the first prospective FUE transplant patients who could receive a relatively scarless procedure opening up many new options that weren't previously available. well put Link to comment Share on other sites More sharing options...
Regular Member Dragonsphere Posted July 8 Regular Member Share Posted July 8 (edited) 5 hours ago, GeorgeClooning said: I think the pessimists are the ones that the ship has sailed for them to be a beneficiary of verteporfin, especially those that have had hair transplants already or weak donors. Basically ones that place an exceptional expectation on VP in order for it to have meaningful impact on them. Obviously it cannot be a miracle and offer 100% follicular regeneration and 0% scar formation however they may make a difference for the first prospective FUE transplant patients who could receive a relatively scarless procedure opening up many new options that weren't previously available. Apart from the likelihood of Verteporfin reaching 100% regeneration, I respectfully disagree with most of your post. Dr Bloxham's case was on a revised FUT scar. If hair can be regenerated via that scenario, we can pretty much guarantee that wounding into FUE scars will work. Also, I think it is highly likely that wounding into areas that didn't regenerate would have the same or at least a similar regeneration potential, creating a theoretical unlimited donor supply. Edited July 8 by Dragonsphere 1 Link to comment Share on other sites More sharing options...
wmozart Posted July 9 Share Posted July 9 Hi all, my surgeon has expressed openness to using verteporfin in my upcoming HT, if I source the verteporfin myself. What is the protocol for using it? Assuming I want to use a concentration of 0.8-1mg/cm^2, and I can get powdered Visudyne for injection: When should it be injected? (I mean how soon after the operation) And what is the schedule for subsequent injections? (This Reddit thread says "4x daily administration for the first 5 days".) What concentration to dilute the powdered verteporfin to? (Visudyne insert says to dilute to 2mg/mL using sterile water, but that seems quite a low concentration?) Any other details a doctor would need to know to do this procedure. Thank you! Sorry if this has already been described somewhere else but I couldn't find it with a search on this site, Google, etc. 2 Link to comment Share on other sites More sharing options...
Senior Member mr_peanutbutter Posted July 9 Senior Member Share Posted July 9 3 minutes ago, wmozart said: Hi all, my surgeon has expressed openness to using verteporfin in my upcoming HT, if I source the verteporfin myself. What is the protocol for using it? Assuming I want to use a concentration of 0.8-1mg/cm^2, and I can get powdered Visudyne for injection: When should it be injected? (I mean how soon after the operation) And what is the schedule for subsequent injections? (This Reddit thread says "4x daily administration for the first 5 days".) What concentration to dilute the powdered verteporfin to? (Visudyne insert says to dilute to 2mg/mL using sterile water, but that seems quite a low concentration?) Any other details a doctor would need to know to do this procedure. Thank you! Sorry if this has already been described somewhere else but I couldn't find it with a search on this site, Google, etc. @Fox243 Link to comment Share on other sites More sharing options...
Regular Member TV_on_LazerDisk Posted July 9 Regular Member Share Posted July 9 This is kind of proof of what I'm saying if we can also get patients to ask doctors and find a way to supply a trichloscope, we could have more evidence of vert to further our case Link to comment Share on other sites More sharing options...
Regular Member TV_on_LazerDisk Posted July 9 Regular Member Share Posted July 9 Approaching younger doctors, who are hungry to make a name for themselves and patients might be an extra route. Link to comment Share on other sites More sharing options...
Regular Member Lets_help_others Posted July 9 Regular Member Share Posted July 9 8 hours ago, TV_on_LazerDisk said: Approaching younger doctors, who are hungry to make a name for themselves and patients might be an extra route. That feels a bit like hair mill teir. I think patiences is key, because if it could regrow follicles any major mistakes could derail it for another 10 years. Which would be quite detrimental for long term development as solution to hairlose. Our goal should be to find a compleet solution to hairlose before 2050, to ensure that this curse is truelly lifted from humanity. We sound delay the process by recklessly trying things out. Link to comment Share on other sites More sharing options...
Regular Member Lets_help_others Posted July 9 Regular Member Share Posted July 9 8 hours ago, TV_on_LazerDisk said: This is kind of proof of what I'm saying if we can also get patients to ask doctors and find a way to supply a trichloscope, we could have more evidence of vert to further our case From what I see online a,Trioscope is atleast 300k and could pass 1 miljon, so yea that is most likely quite expensive and the same was already the case for verteporfin. Link to comment Share on other sites More sharing options...
Regular Member Lets_help_others Posted July 9 Regular Member Share Posted July 9 8 hours ago, wmozart said: Hi all, my surgeon has expressed openness to using verteporfin in my upcoming HT, if I source the verteporfin myself. What is the protocol for using it? Assuming I want to use a concentration of 0.8-1mg/cm^2, and I can get powdered Visudyne for injection: When should it be injected? (I mean how soon after the operation) And what is the schedule for subsequent injections? (This Reddit thread says "4x daily administration for the first 5 days".) What concentration to dilute the powdered verteporfin to? (Visudyne insert says to dilute to 2mg/mL using sterile water, but that seems quite a low concentration?) Any other details a doctor would need to know to do this procedure. Thank you! Sorry if this has already been described somewhere else but I couldn't find it with a search on this site, Google, etc. Ask your doctor to reach out to Dr. Barghouthi 1 Link to comment Share on other sites More sharing options...
Regular Member Fox243 Posted July 10 Regular Member Share Posted July 10 On 6/13/2024 at 5:12 PM, CureSeeker said: No I've just been monitoring it manually. I'm not opposed to using something like Trichoscan, but I'm assuming it's not free or open source. By the way, just as a point of reference, here is a similar image of the donor region, so you can get an idea of what the hairs would look like in an ideal scenario. Curious if you’ve seen anything yet Link to comment Share on other sites More sharing options...
Regular Member TV_on_LazerDisk Posted July 10 Regular Member Share Posted July 10 On 7/9/2024 at 5:54 PM, Lets_help_others said: That feels a bit like hair mill teir. I think patiences is key, because if it could regrow follicles any major mistakes could derail it for another 10 years. Which would be quite detrimental for long term development as solution to hairlose. Our goal should be to find a compleet solution to hairlose before 2050, to ensure that this curse is truelly lifted from humanity. We sound delay the process by recklessly trying things out. There are young doctors who graduate from good medical schools etc... there are older doctors who work for hairmills Also 2050 I think we don't want to wait a few decades for this. I think we're doing this for ourselves not humanity otherwise we'd be focusing on other medical procedures not hairloss related. Link to comment Share on other sites More sharing options...
Regular Member TV_on_LazerDisk Posted July 10 Regular Member Share Posted July 10 On 7/9/2024 at 5:58 PM, Lets_help_others said: From what I see online a,Trioscope is atleast 300k and could pass 1 miljon, so yea that is most likely quite expensive and the same was already the case for verteporfin. If there are facilities that do a trioscan they could go there before and after the procedure etc... Link to comment Share on other sites More sharing options...
MikeGreo Posted July 10 Share Posted July 10 On 7/9/2024 at 4:54 PM, Lets_help_others said: That feels a bit like hair mill teir. I think patiences is key, because if it could regrow follicles any major mistakes could derail it for another 10 years. Which would be quite detrimental for long term development as solution to hairlose. Our goal should be to find a compleet solution to hairlose before 2050, to ensure that this curse is truelly lifted from humanity. We sound delay the process by recklessly trying things out. WTF? 2050? You know I'm starting to think one of the reasons hair loss cures takes annoyingly long long long time to be released to the public, apart from the obvious clinical trial stages and funding, is because, somehow the doctors/ companies etc receiving funding is somehow benefitting from remaining on a funding stage and prolong it as much as possible. Meanwhile they get paid their salaries for decades, biding their time while we suffer. I sure hope this is not the reason for such statements. 1 Link to comment Share on other sites More sharing options...
Regular Member TV_on_LazerDisk Posted July 10 Regular Member Share Posted July 10 If we can think it wouldn't be a bad idea to make a list of cities where there facilities with a trioscope 1 Link to comment Share on other sites More sharing options...
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