Well, half of the time I try to convince myself that even though I have 5 positive biopsis a few months ago, in the vulvar area, I won't get it again. I have no itch at the moment. I had the red itchy spot, right in the middle of the entire perianal area for about two years before I went to a doctor. I am not good about going to doctors because I have never had anything wrong in that area and I had a complete hysterectomy in 1987. I guess I thougt that I got rid of all possible cancer sites at that time. MISTAKE. I haven't started the Aldera cream yet even though my Doctor thinks I have been putting it on for a month. He is a surgeon, but seemed a little reluctant to operation again after the 5 positive biopsy report. I guess surgeons like to operate and cure and this disease will almost always have more positive margins. Since the disease is like an octupus, I don't see how Mohs can be effective. NIH has so little research going on in this disease. I worked at NIH at the cancer institue for over 30 years and called there RARE Disease office when I was diagnosed but they were not interested. Said I already had a diagnosis. I think the only research that will help us is just related researche from other areas. One clinical trial at Univ of Calif, Irivine, finished a study on optical biopsy which I don't know if it will someday help EMPD diagnosis but it might. There is an ongoing clinical pilot sudy at Sloan Kettering on recurrent Pagets of the vulvar area and Aldera cream, but it won't be finished until next year. I might try the Aldera when another itchy active on the surface spot shows up. I really am glad this site exists. By the way, maybe a risk factor is in the name. I am named Marilyn and am also 68 years old just like EMPD!!

Well Marilyn, this is Marilyn B. (EMPD). Wow same name. I will call you this week end if you send your phone #. Be prepared to share and get bawald out! boy we all had better get our stories told, share and get a EMPD adviser. Marilyn 541 536 1239 Central Oregon. Spent my first 16 years in Ohio. then calif until 1998. I have already talk to davis. I think we are 2 men and 3 ladies.

We have all checked in lately. Got it wrong. 3 men and 2 women. Does anyone know how to set up a web page for EMPD? I do not. But if we could find someone to make it eaiser to find us, them we could maybe reach more of us. Assuming there are more than 5 in the us looking. We still need an expert on this disease. Have any of you asked their doc? I asked mine on his e-mail. No answer yet. I did get on the gov. web site finally. Yes there is over 1200 journal articles written on EMPD. We can read the abstracts and decide which ones we would want to read the whole article. I did see one on the first page about MOHS. I did see one about a clinical trial for Aldera, but I think it said aldera as the only treatment for removal of Pagets. Not as a adjunct to surgery. folks, I am going to use Aldera after surgery to try to prevent any return of Pagets. Not to remove lesions already on me. Marilyn (EMPD)

I am soooo sorry you have had such a time with this disease. It has to be awful for your. Hopkins, you would think, is a great medical facility. The problem is there have not been very many studies on this disease and treatments have not been written up. Not many cases to do any trails as to the best treatment. This is where we as a group may be able to help. If we could find more of us and put our info together, compare treatments, return rates etc. Maybe something can then be published and any doc can find the info and compare and give his pt. the best options that are out there. I have read about a Dr. Wilde, and he has the reputation of seeing and treating more of us than most. I will try to locate him and see if he can be our expert on this site. Then maybe he can publish. You may call me and we can share. Or I can call you and share. Marilyn 541 536 1239 But, I am leaving for vacation on Sunday and returning March 14th. M.ruiz many have more to share with you, as she has been thru more surgeries than I. take care and hang in their. empd

Aldera can any of you who have used Aldera chemo cream, please let me know how it went. I have returned from my vacation and expect to start my chemo next week. My local dermatologist has recommended I use it 3 times a week for 16 weeks. If the reaction is to severe, then I am to back down some. But I do know I can feel like I have the flu. I am hoping it will not be as bad as the surgery. that took me 4 months to heal. new member I have talked to a new pagets pt. She will have Mohs surgery next week. I am going to be her mentor and help her in any way I can. I found that my home health care and my local dermatology doc really made my recovery tolerable. I will pass alone the useful facts to her. If we can put our heads together and share our good experiences I think it will help her. :^) My graft did not take and fell off right away. So the wound care was the most important part to work on for us at home. I had a large area of raw skin for 4 months. Each week it got better and we got better at treating it also. I have been told by Dr. Tri Nguyen, MOHS Dermatology, M.D. Anderson that he will has said he would be our EMPD advisor. So hopefully we will have a MD answering our questions SOON.

I an newly diagnosed with EMPD. The oncologist has told me to have surgery. He has not said anything else about Chemo or aldara. Please help. Loki

Hi, Loki, this is EMPD (Marilyn). We are all sorry you have this disease with us. What part of your body do you have it at now? Have you read all the info on this site written by us? As you can see, we have not all had the same treatment. What kind of surgery is he talking about? Wide local excision or MOHS. Have you had many test to make sure this condition is not coming from nearby body parts? I.e. Bladder, rectum, volva etc. This work up is very important, as your EMPD may be a secondary site and removing it from one area does not treat or remove it from other places. I will be waiting for your answers or you may call me at 619 750 3735 PST. Good luck

I had problems in the vulvar area for about 2 years. My primary dr and gyno treated it as a recurring yeast infection. Finally went to a dematologist after a few visits she did a biopsy- Came back as EMPD. I have seen 2 gyno oncologists about it. It covers most of my vulva and I am getting reading for a vulvectomy. I have to see a plastic surgery for a skin graft and then the two drs will set up a date. Both drs thought the area is too big for Mohs- After surgery the dr said he will determine if cancer is anywhere- Have up to date mamo and pap- I guess at this time I am still processing this info- told this is skin disorder not cancer- but then seeing an onocoligist and have very major surgery. Also it is hard trying to explain what I have to other people.

I have had surgery by a gyno oncologyst in 2006, the doc did not remove all the area, and did not discuss it with me... to my suprise after a partial vulvaectomy I found I would have to go for more surgery and possible skin graft. Decided to get a second opion, went to a second doc, we discussed surgery and he referred me to a Dermatologist who specializes in Mohs surgery, we tried Aldera and it did not work at all, he then did laser treatment which also did not work. Went back to the gyno oncologist, he did a radical vulvaectomy and removed a very large area of my buttock, did not use grafts and also before surgery, injected me with a dye, brought me into a dark room with a balck light, the dye lights up the cancer cells, he drew around the cancer cells and did surgery beyond the marked area. The margins came back clean. I have not had a reoccurance in 2 years. Let me know how you have made out.

Hi Dave, its Marilyn. Nice to hear from you. We should talk on the phone. I'm at home until Monday am. 541 536 1239 Still in Oregon, but will be traveling down to Calif to scatter my moms ashes near Santa Barbara. I have been very busy this year and just had two more negative biopsies. Have not started the aldara yet. I just can not face an open sore down there at this time. Seems like I just got healed up and am hoping for a short while without any medical issues and pretend life is normal again.

Hello! I thought I'd check in since a few others have lately. Just to give you an update on my husband, Mark. He went through six weeks of daily radiation therapy after his last positive biopsies (fall of 2008). The radiation finished in January of 2009 and he just had another recheck at the oncologist in March 2010 and is still clear of EMPD (this is the longest stretch of "clear" that he's had since being diagnosed). The side effects from the radiation weren't pleasant but he's still happy that he took that route instead of more surgeries or using the all-but-worthless creams (in his particular case) that he tried repeatedly. I don't think there have been many cases treated with radiation but you do need to know that it's an option. Take care!