my email is "kkn930 at live.hk"
I did my part and I contacted the company that make efudex. Too bad, it's been over a week and they haven't replied yet.
I did discuss this treatment with my local dermatologist, but he brushed me off -- saying the idea of 5-FU injection is crazy. I think he's just being arrogant and self-righteous. Anyway, I really do hope that this treatment works. For those who are able to find a doctor who's willing to try something different, please keep us update.
I did discuss this treatment with my local dermatologist, but he brushed me off -- saying the idea of 5-FU injection is crazy. I think he's just being arrogant and self-righteous. Anyway, I really do hope that this treatment works. For those who are able to find a doctor who's willing to try something different, please keep us update.
Nice to hear you're keeping up the work bios...Don't worry about the efudex, i'm pretty sure we can manage to find an alternative brand...
And about your doctor take my advice and go look for another.
Nerfer, where you able to find out something else about the treatment? My chinese friend says he's been calling for the last couple of days, but the guy who's in charge of the treatment was 1 day at a class, and the other 2 or 3 called in sick...So we'll have to wait some more.
One question for you all...What are you currently doing to improve your condition?
I have a few things to share, that are helping me a lot, and could help some of you. You can contact me if you please.
well, that's it for now, take care guys.
And about your doctor take my advice and go look for another.
Nerfer, where you able to find out something else about the treatment? My chinese friend says he's been calling for the last couple of days, but the guy who's in charge of the treatment was 1 day at a class, and the other 2 or 3 called in sick...So we'll have to wait some more.
One question for you all...What are you currently doing to improve your condition?
I have a few things to share, that are helping me a lot, and could help some of you. You can contact me if you please.
well, that's it for now, take care guys.
Hi Perroloco,
I was just wondering how did you get your steatocystoma diagnosed? When I first visited a plastic surgeon they said it was Neurofibroma, while a Derm said it was steatocystoma. I went to another plastic surgeon who thought it might be Neurofibroma as well, we decided to do an excisional biopsy to finally confirm what it was.
I was just wondering how did you get your steatocystoma diagnosed? When I first visited a plastic surgeon they said it was Neurofibroma, while a Derm said it was steatocystoma. I went to another plastic surgeon who thought it might be Neurofibroma as well, we decided to do an excisional biopsy to finally confirm what it was.
Hello guys,
its great to look everyone are so energetic. I'm in the same shoes as you guys. I did my part also with the scarring problem and currently I'm using Contratubex for the anti-scarring gel and it is just almost a week which I guess wont produce any visible result yet. I wonder if any of you had used hydroquinone cream? because I'm finding it hard to find in the local pharmacy because when I asked them, they dont even know what is that. It's either it is banned over here or maybe the pharmacist sux. lol.
Hope to hear more from you guys.
p/s : the idea to go to China together to get the treatment sounds really2 interesting to me. :-D
its great to look everyone are so energetic. I'm in the same shoes as you guys. I did my part also with the scarring problem and currently I'm using Contratubex for the anti-scarring gel and it is just almost a week which I guess wont produce any visible result yet. I wonder if any of you had used hydroquinone cream? because I'm finding it hard to find in the local pharmacy because when I asked them, they dont even know what is that. It's either it is banned over here or maybe the pharmacist sux. lol.
Hope to hear more from you guys.
p/s : the idea to go to China together to get the treatment sounds really2 interesting to me. :-D
I need to ask someone here whether any of you had tried accutane? does it work?
Hi guys!!!! how are you all????
Ivax, i got diagnosed the same way you where, with a biopsy....That´s the only way you can be 100% sure about the diagnose...
I´ve been trying like hell to contact the harbin medical hospital in china, but no succes at all....i will try the treatment with my local doctors who are willing to investigate (on me jejeje) the amounts that should be used, so i´ll keep you posted on that. I´m pretty sure we won´t need to travel to China.
If you ask me, for the scarring and hiperpygmentation, you should go with some fraxel laser (always depending on your skin type) or some minor but very usefull techniques such as microdermoabrassion (the most important thing with microdermoabrassion is to have it done quite often, i used to have them once a week or every two weeks, for a whole year) and the improvement you can see is quite good.
Regarding Accutane, i had a very similar one that is Roacutan, and i wouldn´t advice it at all. I had tremendous breakouts that never went away (i had it 2 times, for around 8 months each)
if you ask me, the best treatment you can get nowadays is with SMOOTHBEAM laser....It´s expensieve but works great (ALWAYS depending on your skin type and how you scar).
If you don´t heal well, you can always go for the manual extraction using a needle (once again, this must be made once a week if possible) to see some results.
That´s it for today.
Tke care guys.
Ivax, i got diagnosed the same way you where, with a biopsy....That´s the only way you can be 100% sure about the diagnose...
I´ve been trying like hell to contact the harbin medical hospital in china, but no succes at all....i will try the treatment with my local doctors who are willing to investigate (on me jejeje) the amounts that should be used, so i´ll keep you posted on that. I´m pretty sure we won´t need to travel to China.
If you ask me, for the scarring and hiperpygmentation, you should go with some fraxel laser (always depending on your skin type) or some minor but very usefull techniques such as microdermoabrassion (the most important thing with microdermoabrassion is to have it done quite often, i used to have them once a week or every two weeks, for a whole year) and the improvement you can see is quite good.
Regarding Accutane, i had a very similar one that is Roacutan, and i wouldn´t advice it at all. I had tremendous breakouts that never went away (i had it 2 times, for around 8 months each)
if you ask me, the best treatment you can get nowadays is with SMOOTHBEAM laser....It´s expensieve but works great (ALWAYS depending on your skin type and how you scar).
If you don´t heal well, you can always go for the manual extraction using a needle (once again, this must be made once a week if possible) to see some results.
That´s it for today.
Tke care guys.
Hi Perroloco,
You seems to have been through a lot of procedures. I hope the new method will be successful :-) keep us update with more good news.
by the way, for the Contratubex gel which I had been using for a week, thankfully it work for me. The scars started to fade away at least a lil bit in just a week. I hope if I continue to use in a month or 2 month, all the scar will be gone. The only bad thing happened to me which just happened yesterday was my chest felt really itchy that I can barely sleep through out the night. :-( I'm still wondering why it happened because during the 1st few days I used the gel, nothing bad came up. I just started to feel itchy yesterday. But as soon as you wash it away, everything will be okay.
You seems to have been through a lot of procedures. I hope the new method will be successful :-) keep us update with more good news.
by the way, for the Contratubex gel which I had been using for a week, thankfully it work for me. The scars started to fade away at least a lil bit in just a week. I hope if I continue to use in a month or 2 month, all the scar will be gone. The only bad thing happened to me which just happened yesterday was my chest felt really itchy that I can barely sleep through out the night. :-( I'm still wondering why it happened because during the 1st few days I used the gel, nothing bad came up. I just started to feel itchy yesterday. But as soon as you wash it away, everything will be okay.
Hi Perroloco,
I saw that you are currently seeing Dr. Anderson for treatment of your cysts. I was wondering how did you get in contact with him? I am interested in scheduling an appointment and wanted to know how long it took to get on his calendar.
Thanks so much!
I saw that you are currently seeing Dr. Anderson for treatment of your cysts. I was wondering how did you get in contact with him? I am interested in scheduling an appointment and wanted to know how long it took to get on his calendar.
Thanks so much!
Hi guys, I tried to recontact the hospital several times, but no one answers the phone. im so frustrating , if anyone who have successfully contacted them , please let me know, thx. and i will try to look for other sources that provide similar treament.
I talked to my Derm about the 5-Fu injection in the cyst. Although she said it is possible, she thinks it would be too uncomfortable and advised against it.
Great guys, this is what i´m talking about. If you all work together and spend time trying to share, i bet my ass we´ll all find usefull experiences and many many things to improve our condition.
My chinese friend finally managed to contact the hospital (actually,he contacted the doctor in charge of the treatment). It´s quite a simple thing as nerfer told, just a shot in each cyst, every 2 weeks. My friend asked if they could send the treatment protocol to other doctors (as it´s quite a common drug that can be found in any country, no special tech needed...) but they said they couldn´t. The only way would be to travel there. The doctors name is Dr. Yao (it´s a woman). He managed to get a little info out of the doctor, she said it´s 5cc shot for each cyst. I already passed that info to my doctors, so i´ll be trying the procedure on my own, probably in the mid july.
Regarding doctor Anderson (this is for cptaceveda) he´s quite a busy guy, you probably have to schedule maybe 2 or 3 months in advance. He only sees people on wensday, from 8am till 1pm or so....So you can figure out yourself how busy he is....There are many things you have to consider before traveling..The treatment can be very usefull, but i really depends on how many cyst you have and how many times you can travel....(he can take out around 20 each time and costs around 450usd).
I´m researching for some new stuff i´ve been discussing with my doctors, such as the use of FINASTERIDE (it´s a medicine for alopecia, hair loss, and some other uses, wich basically works on the androgens, some say they have a major role in the formation of cyst, while some others says it won´t help at all, but we don´t lose anything trying. It´d be great if anyone else tries to research more on this.
Well, that´s it once again.
Take care.
My chinese friend finally managed to contact the hospital (actually,he contacted the doctor in charge of the treatment). It´s quite a simple thing as nerfer told, just a shot in each cyst, every 2 weeks. My friend asked if they could send the treatment protocol to other doctors (as it´s quite a common drug that can be found in any country, no special tech needed...) but they said they couldn´t. The only way would be to travel there. The doctors name is Dr. Yao (it´s a woman). He managed to get a little info out of the doctor, she said it´s 5cc shot for each cyst. I already passed that info to my doctors, so i´ll be trying the procedure on my own, probably in the mid july.
Regarding doctor Anderson (this is for cptaceveda) he´s quite a busy guy, you probably have to schedule maybe 2 or 3 months in advance. He only sees people on wensday, from 8am till 1pm or so....So you can figure out yourself how busy he is....There are many things you have to consider before traveling..The treatment can be very usefull, but i really depends on how many cyst you have and how many times you can travel....(he can take out around 20 each time and costs around 450usd).
I´m researching for some new stuff i´ve been discussing with my doctors, such as the use of FINASTERIDE (it´s a medicine for alopecia, hair loss, and some other uses, wich basically works on the androgens, some say they have a major role in the formation of cyst, while some others says it won´t help at all, but we don´t lose anything trying. It´d be great if anyone else tries to research more on this.
Well, that´s it once again.
Take care.
Hi all, this is excellent news and I am very excited about this treatment even if there is a 30% chance that it works. People who are contacting the hospital/doctor in China, please keep me and everyone else posted. I too am fluent in spoken Chinese and live in the US. I would be willing to travel to China for a month if that is what it takes. If we go in the winter, Harbin has an awesome ice festival that could keep us busy while we get treated. Let me know and maybe we could get a group together to go on a treatment trip.
Hi guys.
So any good news? Hows the treatment going? you are making me nervous. ;-)
So any good news? Hows the treatment going? you are making me nervous. ;-)
what's up folks???
here are the news:
i've managed to get the cell from the chinese doctor in charge of the treatment...i read some of you are fluent in chinesse, so please contact me (you can find my mail in earlier posts) so you can give her a call and finally find out how this really is.
on the other hand, i just bought a smoothbeam device (the one used by the harvard derm) i'll be getting it in a couple of days, maybe a few weeks top. Most of my hopes are on that device (for the long term managment of the condition). My doctors will be happy to treat any of you if you're willing to travel to south america.
Well, that's it, keep in touch.
here are the news:
i've managed to get the cell from the chinese doctor in charge of the treatment...i read some of you are fluent in chinesse, so please contact me (you can find my mail in earlier posts) so you can give her a call and finally find out how this really is.
on the other hand, i just bought a smoothbeam device (the one used by the harvard derm) i'll be getting it in a couple of days, maybe a few weeks top. Most of my hopes are on that device (for the long term managment of the condition). My doctors will be happy to treat any of you if you're willing to travel to south america.
Well, that's it, keep in touch.