I have had stem cell treatment for LS, IT WORKS

Posted , 19 users are following.

For all you ladies with LS, I had stem cell treatment in Italy in September 2013, the LS has just started to come back. I had 3 months where the stem cells were kicking in, 12 months relief, and 3 months of i9t wearing off, so now I need more treatment.

The person who first applied stem cell treatment for LS is Dr Frencesco Casabona, who has his practice in Genoa. The actual procedure took 15 or so minutes, I opted for no sedation, so it was a bit painful, but I preferred it that way, and even without the sedative it was totally bearable.

The treatment cost 3,000 euros, plus flights and hotel, so it is not cheap. When you get to Genoa you see Dr Casabona, then next day you go to various places, to have blood taken, to pay for the treatment, its a lengthy process, but not too bad considering the result. Once the blood is processed and ready, you have to undress and gown up, and have the injections. They are not small needles, let me make that clear, but as I said, there are sedatives. Most women have the sedatives. Next morning its back to see Dr Casabona, then in our case we came home.

The treatment works, no doubt about it. No need for the steroid creams, or Protopic, nothing!  Clob, or steroid cream, just thins the skin, and long term use is not good. Protopic is better, it doesnt thin the skin, and is made from an element in a certain soil. The cream is usually used on skin grafts, and in liquid form (I believe) for organ transplants, as it has the ability to repel, or drive back from the surface of the skin, the antibodies that attack it, which cause LS. Protopic is very expensive, my first tube was private, before NICE had approved of it, and 12 years ago it cost me £84 for 30 grammes. It was made by Fujiwasa, who invented it, but now it is made by other companies.

Protopic, is, in my opinion, as a sufferer for over 20 years, far superior to Dermovate, but as I said, less prescribed, it is expensive.

I get itching in the LS area after I have drunk or eaten certain things, chocolate, cola, citrus fruit, tap water (yes, tap water, which is cram packed with cleaning chemicals and aluminium, apart from hormones from the pill) and before I went through the change with a certain famous brand of sanitary towel, which ALWAYS caused me to itch. I think there are too many chemicals in sanitary towels, (similar to  cat litter) and would advise any woman to try to buy pure cotton. I am not saying any of these things cause LS, but they certainly aggravate it. So, next question is could I have sex after stem cell treatment, well I think I coulod have, but I also have more recent severe back problems which have caused my pelvis to slip, so I wouldnt have been able to anyway. I lost a man, my mind and hope with LS, also my sex life, my pride and my femininity, or thats how it felt for a long long time. I wouldnt hesitate to say to a daughter, if I had one, go have the stem call treatment. The cost is the bummer, we need to lobby Parliament, is anyone out there in agreement?

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  • Posted

    loupielou, speaking bluntly, you only joined the group TWO DAYS ago with claims of treatment that WORKS for Lichen Schlerosus, the name of the doctor, where to have it done, and the cost (3,000 euros) and so I cant help but question the validity of your post, as it sounds like your an advocate for Dr Casabonas services.

      

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    • Posted

      Yes, you cant help digging me out can you, I have no other interest but to help those women I can. If you read on you will also find I have given the name of Nathan Newman in the USA TOO, AM I WORKING FOR HIM AS WELL?

      I am the only person on this forum, 2 days or not, who has actually had stem cell treatment. I know it works, but for cynics like you, its not worth the effort. Because you cant afford treatment you begrudge and ridicule those who can. I assume you are in the USA, in the UK we have the National Health Service, and were this treatment adopted by them it would be FREE. I dont need to advocate Dr Casabona, he doesnt need it. You say you are happy with clobetasol, we call it Dermovate, and you wouldnt pay for stem cell, well sorry Guppy, I am not so easily pleased, I got up off my backside and found better help, what you do is entirely up to you. As for your doubting I am genuine, that is nasty beyond words. I really wish I wasnt genuine, but I have had this illness for over 20 years, and you, my dear, are a cynic beyond belief!

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    • Posted

      Oh, and by the way Guppy, have you ever cleaned toilets for a living, I have. I worked hard, and I am just letting women with LS know help is on the horizon. If you dont like it, complain, your good at that!
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    • Posted

      Easy, Guppy. We've had discussions of Dr. Casabona's treatments here before. He doesn't need any advocates. It's out of my financial reach, too and I'm separating from my partner with whom I had to stop making love. But if Loupielou inspires anyone or pops anyone's unrealistic balloon, that's what we're here for. We've had the odd self-promoter on here before, making empty promises of a cure. This is clearly a temporary fix that a few people can afford. And as Lou says, in time it may become part of regular medicine. The actual process is not costly, so the volume of patients is a Catch-22 for now.
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    • Posted

      I have just having finished listening to Dr. Goldsteins lecture, where he talked briefly about the work of Dr. Casabona, mentioning that his initial trial was too limited to form any realistic or robustly researched opinion,  and also highlighted the fact that his study  was not even placebo controlled, which is globally recognized 'best practice', and is used in research and development of any new drug or treatment by all the major pharmaceutical companies, and reputable accredited medical research institutions. 

      Dr. Goldstein very clearly states that he believes it is far too early to go ahead with this kind of procedure, as not enough research had been done (see my key points in the first paragraph above) and he therefore thought it reckless, and irresponsible to openly recommend his course of treatment at such an early stage.

      I do  think it is good news that research is moving forward to help woman with Lichen Schlerosus, however where I have a problem with Dr. Casabona  is that he is charging women such high sums of money for what is an untested and unaccredited treatment, whilst at the same time for basically using woman as Guineas pigs, how can this be right? Frankly one has to consider the very real possibility that he is charging such high amounts, because he himself may be aware that his treatment might not be as effective as he states it is, and so is potentially 'cashing in' as it were, by charging so much money, because he knows that this treatment may be found to be flawed in the medium to long term.

      Furthermore whilst the treatment may prove to be a breakthrough eventually, there is no guarantee that this is an effective long term treatment for the condition. It is not FDA approved in the US and hasn't even been formally approved in his own country of Italy or the rest of Europe, which has to set alarm bells ringing in most people's minds. Nobody really knows whether or not this is in actual fact either an effective, or appropriate course of action, and subsequently therefore, could feasibly and logically in fact very easily be a course of treatment that causes more long term damage and harm than good. 

      Incidentally Dr. Goldstein stated that he was in the process of undertaking his own detailed study, and is not charging anybody anything at this point......so who would you trust more at the moment?.....I think the answer is clear. 

      I personally am of the view, that if women want to volunteer for treatment, then that is their decision and choice, I just think its wrong that he is charging such a significant amount of money for something that is in its infancy, and still evolving, and is also risky and questionable as it only lasts for approximately a year, so how does this provide a sustainable and long term treatment for the condition? I would also mention at this point, that we need to bear in mind that large reputable pharmaceutical companies, actually pay volunteers to help them with the research, testing, and development of new treatments, and clearly explain both the potential benefits and downsides of the treatment they are volunteering to undergo, whereas Dr. Casabona is actually charging very high fees, which is the complete opposite to the process that is undertaken by large globally respected pharmaceutical and medical research organisations......this must surely raise concerns?

      As for your comments Morrell, the key issue here is not whether or not myself or any other sufferer can afford the treatment, it is the fact that this treatment has not been properly researched, tested, analysed or approved by any medical regulatory bodies globally, so rather than as you say Dr. Casabone does not need any advocates, I would challenge that statement, and actually say the reverse, and that he does need advocates, as his treatment is currently unproven, poorly researched, inappropriately tested, and not accredited by any reputable regulatory body, in any country in the world. 

      Furthermore, I distinctly and clearly remember you quite openly and publicly advising sufferers against stem cell treatment, citing the fact that Dr. Goldstein is strongly opposed to it, and so I am not quite sure why you have now suddenly changed your mind regarding such an important matter, and especially bearing in mind, that you often suggest new members listen to Dr. Goldstein who is completely and  absolutely against Dr. Casbone's current treatment, so I would be very interested to understand why you have had a complete change of mind.

      I appreciate and respect everyone's views on this important matter, and look forward to future constructive and helpful discussions relating to the very serious condition of Lichen Schlerosus.  

      .  

       

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    • Posted

      Thats it in a nutshell, if no one has the treatment in its initial stages, then the treatment does not get to the masses but is abandoned. Saying that, there was a packed waiting room in Genoa, all waiting to have the same procedure, when I had mine done. It made me laugh when I was accused of being an advocate of Dr Casabona. This man has more work than enough. Casabona is a plastic surgeon. He works mostly with people who need surgery for medical reasons. He is the man who pioneered this procedure.

      If you look up the vampire facelift, read about that, because its the same technique, more or less, but of course applied elsewhere. It explains exactly how the cells are implanted and regenerate. And no, I am not suggesting facelifts lol.

      .

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    • Posted

      Well said, well researched. Cosmetic surgeons have for some years now, both in the USA and UK, been carrying out stem cell treatments, called the vampire facelift, amongst other names. With cosmetic surgery, rules that govern medical procedures do not apply. For me the stem cell treatment worked. Any side effects or after effects, I wouldnt rule out. I cant, I am not a Doctor. The points you made regarding cost are right, 3000 euros is a lot of money, and many people cant afford it. I wouldnt be prepared to pay it every year. In the Uk, the governing authority for drugs and procedures is called NICE. I used tacrolimus, or Protopic, before it was passed by NICE, because I went to a private dermatologist in Harley Street, London. Now it is used everywhere. The National Health Service are in touch with Dr Casabona, and are now doing stem cell treatment at the Royal Free Hospital in Hamstead, London, so for me, that is hopefully the answer to my prayers if I am accepted, as it may well just be trial cases.

      NICE would have to sanction that procedure, so may well have in the UK. Stem cell treatment is your own cells being injected back into your own body. I dont mind being a paying guinea pig, and I fully appreciate your concerns, which are valid.

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    • Posted

      Though I would like to add for Guppy and imoffoutofhere ...

      The 'cancer industry' is also working with unproven material.  They 'try'.  The results starting to look unethical.  

      Then my next question will be - what is the long term affect of repeated stem cell treatment?  Another unknown.  Time will tell and made available to all of us by those courageous people 'giving it a try' because there isn't much else.  

      LS is left so far out, this far.  There are no solid and proven answers yet.  Together we can hope and pray that some researcher does a miraculous discovery.  Good thinking of you two, thanks. 

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    • Posted

      Well stated, Guppy. I think Imoffoutahere (I hope she's not, actually, outa here) has pointed out the reason we can even argue about this – the treatment is a form of cosmetic correction. All Dr. C. has done is apply a facelift technique to the vulva. I agree with Dr. G's view on it, but I disagree that Dr. C's clients are taking undue risks. If I lived near Dr. C and had bottomless funds, and I were younger (very disappointing that it doesn't the reverse fusing we older sufferers have) I might be in that waiting room.

      One thing I do wonder, which I discovered while having regular acupuncture for my psoriasis – the needles initiate the Koebner effect, so even though the acupuncture points drained excess (traditional Chinese medicine's) 'heat' and relieved my symptoms (burning, itching and edema), a week later they were back with a vengeance.

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    • Posted

      Guppy, another thing: In dr. G's presentation he's soliciting qualified patients for his clinical trial. It was a really small number, I forget, like maybe twelve. As Hanny points out, cancer patients are often willing to risk sketchy treatments and what the heck, if some great discovery comes of one... Most of the critiques of this sort of thing are about false hope and exhorbitant charges.
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    • Posted

      I guess only time will tell if Dr C's treatment goes to the next level, I sincerely hope it does and that there are no long term ill effects.

      Interesting point regarding needles!

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    • Posted

      I have been at the point to try 'anything.'  How many with me?  And then you come back to your senses and start 'to learn to live with it' to the best of your ability and you hope it won't get that much worse.  

      However, we have to be careful not to 'shoot' those who try hard to find some kind of answer and perhaps a cure.  All through history people have come to find cures and solutions coming from various angles and thoughts.

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  • Posted

    hi i am in australia and i cant see it ever being free here some cancer treatments arent free so ls is not life threating so they say rolleyes
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    • Posted

      Sadly thats the way our countries work, but maybe one day your private health insurance will acknowledge the need for treatment and allow it, live in hope. The actual procedure is not an expensive excercise, taking blood samples, separating the blood into its various components, adding a small amount of body fat that they lipo from your side, mix the two and inject it into the affected areas. The procedure needs to be categorised, it is not cosmetic surgery but crucial treatment and should be affordable. Live in hope and god bless xxx
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    • Posted

      The really sad part of this is that the actual procedure took 10 minutes. We go to the dentist to have a check up and it takes longer. With uninterupted treatment, as I say once a year, we would literally be able to resume sex lives and get on with normal living, I cant afford to have it done every year long term, but I think in time , as the treatment is recognised, it will be included as normal medical treatment. The waiting room where I went for treatment was full, there was no shortage of patients, but even so I did feel as if I were allowing myself to become a guinea pig for a new treatment, and I was more than willing to take that risk. I am glad I did. When you say LS is not life threatenning, well, there is a 5% chance of vulval cancer, but that aside, it is life changing, life wrecking, marriage breaking, and I am sure there are women who suffer depression over it. These are the parts of the illness we must make medical authorities aware of, to try to get changes in the system. One day please god, one day xxxx
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    • Posted

      The actual labial skin, yes, still is but going back now in a few little places. The perinium, yes, but going back now. The damage doesnt reverse. If you have hooded clitoris, it stays hooded. What changes is the skin becomes like it was pre LS, so in that respect the LS goes. The sooner the treatment, the less damage. The progress of the damage is halted, and the skin and flesh become normal again, so sex etc., in most cases can be resumed. All the splits and tears stop. The injections take a while to get going, as you would expect. After a month or two you notice the skin doesnt tear on contact, after 3 or 4 months the skin is as it was before, and it gets better gradually, then begins to decline gradually. Though I had this done 18 months ago, I am still nowhere near as bad as I was before the injections. Had I had another shot a month or two ago, the progress would have continued gradually. Basically, if you have a hood, or the minora has gone, thats permanent, though saying that, if a woman did have this treatment annually, a clitoral hood reversal might well be successful. This is how my treatment went, for younger women with less damage they would probably reap more advantage, have better results, though I cant complain. I was pleased and am tninking of going back if I cant get treated on the NHS here.
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    • Posted

      Thank you, Loupdilou, changed your name, imoffoutofhere.  Helpful to know.  I've reached a recovery of the clitoris through a diligent process with coconut oil and baking soda.  Great to have that sensation back.  But again, for how long.  Spotted some skin that I want my gyno to have a serious look at.  It might be nothing, but better safe than sorry. 
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