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adrienne17's Message Board Messages

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On Jul 12, 2017 5:21 PM rudyhusam wrote:

On Feb 28, 2016 8:57 PM honeybunch5 wrote:

Hi Denise, I'm sorry to hear that you had a relapse.  I'm in remission since 2013 and wonder how much time before it comes back, while praying it doesn't. How much time between your remission and next onset.  I had 5 surgeries before I finally had rAdiation and reversal of colostomy bag. This past 3 months I had hyperbaric oxygen therapy to breakdown scar tissue and radiation damage to colon. The last surgeon closed almost all of anus so I can't stoop down to pick up anything as I could before and have problems with bowels but feel blessed to be alive.

please my sister hav extramammary pagets diseas. i need your help wich doctor or clinick you recomended .thanks

Hi please accept my friend request and I will message u and help. I sent an email to your email address that you left on Macmillan cancer website

On Apr 07, 2017 9:39 PM ads3838 wrote:

Hi All - My Mom was first diagnosed with EMPD a few years ago and just learned it was back during her 6 month checkup. She was at first very hesitant to try the Aldara suggested by her Onco (she previously had an excision), as she has friends who have used it for various skin cancers and hated it.  After doing a lot more research, I think I've convinced her to try it. My Mom's fairly computer savvy but has never used discussion groups, though she is on FB.  I asked her if she'd want to join your FB and she said of course. Is there anyone I can contact to add her? I know she wouldn't know to check the "other" folder in Messenger so directly adding her would be the best bet. Let me know and thanks so much - researching something so rare is just a bear, and I know how much of a difference having a support group can make!

Hi Ads3838 so sorry that your mom is ging through EMPD. I have sent a friend request and a private message re the FB group

This is a call out to all ladies that have been diagosed and living with EMPD, please message me so that we can share info and support. We are few but toghether we are so much stronger. WE can support each other as fellow patients "get it " like nobody else does, we are few clicks of the mouse away. . lots of love Adrienne xx

Hi Folks

This is a shout out to any ladies that have been diagnosed with EMPD. Please get in contact with me, message me,I run a support group of other lovely ladies, we are a rare but great group of ladies and would love to have you join us

have sent you a message

On Feb 27, 2016 3:13 AM denisevw wrote:

Hi

Im Denise i started this forum up a few years ago when i was told i have invasive EMPD as well.  Its a very scary time I know. Ask me anything questions you like and i will try my best to answer them for you. If you go back to the first page on this forum and have a read of my first post you can understand what ive been through.  Since then it has returned twice and i have only 2 weeks ago come out of hospital.  There are afew of us out there and you dont have to go through it alone.  Im from New Zealand and only a hand full of people here have it. 

Denise so delighted yuo came back I have spent hours looking for you, I have set up a group on facebook there are approx 23 of us please message me as Iso want you in our group. DO you have a Facebook account

have private messaged you, please check I am an EMPD lady 

This is a call out to all ladies that have been diagosed and living with EMPD, please message me so that we can share info and support. We are few but toghether we are so much stronger. WE can support each other as fellow patients "get it " like noboday else. lots of love Adrienne xx

Hi great to meet you another one of the rare EMPD ladies, we chat here a d we have a secret Facebook group. The only reason it is secret is for privacy means we can chat freely without amy risk of any one seeing it. If you have a face book account please message me your email addr as and I can add you to the group if you would like to join us. Where do you live as we have ladies from all over but we are exclusive EMPD.

On Mar 04, 2014 2:16 PM hollybeary wrote:

EMPD

byhollybeary- 13 minutes ago

I can't believe that I finally found other people who are also contending with Extra Mammary Paget's Disease. Some of the anxiety I have been experiencing is the feeling that I am alone in this. It is not exactly the kind of information you feel like sharing with others due to its location and its rarity which then involves explanation. I was diagnosed after a punch biopsy May 2013 after my gynocologist had tried numerous topicals thinking that it was a yeast or fungal infection. She referred me to an oncologist who's said the only "treatment"was excision of a 4"x4" area in the perineum. After much internet research I knew there was research with positive results using Aldara. I found a dermatologist at Cleveland Clinic who also agreed with trying this as treatment so see if nothing else, that it would shrink the involved area so if MOHs surgery was necessary down the road. In December he performed three biopsies in the area which came back clean. Recommended I continue the Aldara in one area he is still concerned about and I will have another biopsy in April. The discomfort from the Aldara has GOT to be less than having surgery. If it ends up necessary down the road, I am so glad that I will have this forum to turn to. Thank you.

Barb

Hi I to am an EMPD lady, so glad to have found you x

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