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Extramammary Paget's Disease
srbmom; posted:
A family member was just diagnosed with EMPD and it's turned into skin cancer then traveled to the lymph nodes. We have been told that this is very rare and we are trying to find out any information we can on this. If anyone has anything please let me know. Thank you!
27 Replies |Watch This Discussion | Report This| Share this:Extramammary Paget's DiseaseA family member was just diagnosed with EMPD and it's turned into skin cancer then traveled to the lymph nodes. We have been told that this is very rare and we are trying to find out any information we can on this. If anyone has anything please let me know. Thank you!
Chris_WebMD_Staff responded:
Hi and welcome,
I did a quick search for you here on WebMD and found this, Skin Cancer Treatment;General Info.
Make sure you talk to the doctor too. Share your concerns and questions. I wish I had more info for you, but talk to the doc.
Good luck and good health to you all!
Chrissy
WebMD Community Staff
I did a quick search for you here on WebMD and found this, Skin Cancer Treatment;General Info.
Make sure you talk to the doctor too. Share your concerns and questions. I wish I had more info for you, but talk to the doc.
Good luck and good health to you all!
Chrissy
WebMD Community Staff
Report This| Share this:Extramammary Paget's DiseaseHi and welcome,<br /><br />I did a quick search for you here on WebMD and found this, <a href="http://www.webmd.com/cancer/tc/skin-cancer-non-melanoma-treatment-health-professional-information-nci-pdq-general-information">Skin Cancer Treatment;General Info.</a> <br /><br />Make sure you talk to the doctor too. Share your concerns and questions. I wish I had more info for you, but talk to the doc.<br />Good luck and good health to you all!<br />Chrissy<br />WebMD Community Staff
An_205943 responded:
Hi
my husband has been diagnosed with EMPD and has travelled to his lymph nodes. wondered how you are getting on with treatment and help. i have lots of papers i hve researched but mot much on treatment. we are waiting for chemo - but the oncologist not sure which one at mo. has had one lot last year and that didnt work. best Wishes to you all, ps. have you had much response as empd so rare its hard to find anyone else with it.
my husband has been diagnosed with EMPD and has travelled to his lymph nodes. wondered how you are getting on with treatment and help. i have lots of papers i hve researched but mot much on treatment. we are waiting for chemo - but the oncologist not sure which one at mo. has had one lot last year and that didnt work. best Wishes to you all, ps. have you had much response as empd so rare its hard to find anyone else with it.
Report This| Share this:Extramammary Paget's DiseaseHi <br />my husband has been diagnosed with EMPD and has travelled to his lymph nodes. wondered how you are getting on with treatment and help. i have lots of papers i hve researched but mot much on treatment. we are waiting for chemo - but the oncologist not sure which one at mo. has had one lot last year and that didnt work. best Wishes to you all, ps. have you had much response as empd so rare its hard to find anyone else with it.
hunteca responded:
I don't know if anyone is still checking this thread--I've had EMPD for five years--and probably longer because it was misdiagnosed some years before that. I've been looking for another human being with this disease--it sure seems to be rare!
Report This| Share this:Extramammary Paget's DiseaseI don't know if anyone is still checking this thread--I've had EMPD for five years--and probably longer because it was misdiagnosed some years before that. I've been looking for another human being with this disease--it sure seems to be rare!
Arizonasmiles replied to hunteca's response:
HI Hunteca, I have it too and I believe I had it for years. You are the first person I have found to talk to. What treatment are you getting? Where are you? I was all set to have a vulvectomy and something inside of me shouted "NO!". so I am using imoquiod and chlobetasol creams. I really would like to hear from you! Cheryl
Report This| Share this:Extramammary Paget's DiseaseHI Hunteca, I have it too and I believe I had it for years. You are the first person I have found to talk to. What treatment are you getting? Where are you? I was all set to have a vulvectomy and something inside of me shouted "NO!". so I am using imoquiod and chlobetasol creams. I really would like to hear from you! Cheryl
hunteca replied to Arizonasmiles's response:
Cheryl,
Hurray! Thanks for posting!! Glad you listened to your instinct--I am recovering from a vulvectomy and while I'm doing fine--it takes 4 or 5 months for all the pain to go away and it is a pain (as you can imagine!) to keep clean (squegee bottles and hair dryers!!) I miss being able to sit comfortably, ride a bike and all that good stuff. I did a 3 month run of imoquiod--ran a 103 fever with the first application, so lowered the dose. It made the EMPD disappear for a couple months, but it returned; hence the vulvectomy. Hope yours clears up with the cream! How's it going?
Carol
PS I like "Arizonasmiles." Is Arizona home? I'm in Indiana where it is currently blustery and stormy.
Hurray! Thanks for posting!! Glad you listened to your instinct--I am recovering from a vulvectomy and while I'm doing fine--it takes 4 or 5 months for all the pain to go away and it is a pain (as you can imagine!) to keep clean (squegee bottles and hair dryers!!) I miss being able to sit comfortably, ride a bike and all that good stuff. I did a 3 month run of imoquiod--ran a 103 fever with the first application, so lowered the dose. It made the EMPD disappear for a couple months, but it returned; hence the vulvectomy. Hope yours clears up with the cream! How's it going?
Carol
PS I like "Arizonasmiles." Is Arizona home? I'm in Indiana where it is currently blustery and stormy.
Report This| Share this:Extramammary Paget's DiseaseCheryl,<br /><br />Hurray! Thanks for posting!! Glad you listened to your instinct--I am recovering from a vulvectomy and while I'm doing fine--it takes 4 or 5 months for all the pain to go away and it is a pain (as you can imagine!) to keep clean (squegee bottles and hair dryers!!) I miss being able to sit comfortably, ride a bike and all that good stuff. I did a 3 month run of imoquiod--ran a 103 fever with the first application, so lowered the dose. It made the EMPD disappear for a couple months, but it returned; hence the vulvectomy. Hope yours clears up with the cream! How's it going?<br />Carol <br />PS I like "Arizonasmiles." Is Arizona home? I'm in Indiana where it is currently blustery and stormy.
Arizonasmiles replied to hunteca's response:
Yes I am in AZ - about in the middle of the state near Sedona. Our weather is lovely now - upper 70's and lots of sunshine. I am being treated at the University of Arizona in Tucson. My doctor just left for a conference in China to discuss this. I told him to find a magic herb!
My progress has be halted by multiple mega yeast infections caused by both antibiotics (dental issue) and the lack of protective skin layers. So last week he took me off the Imiquiod and put me on the chlobetasol 24/7 for one month to build up the protective layer. It seems better this week. The yeast causes blistering, even on the inner thigh. Getting in and out of a vehicle is the worst. I am so tired of feeling my flesh tear-thereby ripping off all of the protective layers and starting back at square one.
If your vulvectomy doesn;t do the trick for you, I have been investigating some therapies including superheating of a local area of the body. If you are interested in reading about this I can send you a link.
I am 63 and a former teacher. I was born in Detroit, so Indiana is part of my experience. Is there a way to get each other's email addresses without posting them?
Tell me more about you. I don't think anyone has every done a study to see what we rare birds might have in common. Let it begin with us!
I shall think of you spritzing as I apply my steroids! Cheryl
My progress has be halted by multiple mega yeast infections caused by both antibiotics (dental issue) and the lack of protective skin layers. So last week he took me off the Imiquiod and put me on the chlobetasol 24/7 for one month to build up the protective layer. It seems better this week. The yeast causes blistering, even on the inner thigh. Getting in and out of a vehicle is the worst. I am so tired of feeling my flesh tear-thereby ripping off all of the protective layers and starting back at square one.
If your vulvectomy doesn;t do the trick for you, I have been investigating some therapies including superheating of a local area of the body. If you are interested in reading about this I can send you a link.
I am 63 and a former teacher. I was born in Detroit, so Indiana is part of my experience. Is there a way to get each other's email addresses without posting them?
Tell me more about you. I don't think anyone has every done a study to see what we rare birds might have in common. Let it begin with us!
I shall think of you spritzing as I apply my steroids! Cheryl
Report This| Share this:Extramammary Paget's DiseaseYes I am in AZ - about in the middle of the state near Sedona. Our weather is lovely now - upper 70's and lots of sunshine. I am being treated at the University of Arizona in Tucson. My doctor just left for a conference in China to discuss this. I told him to find a magic herb!<br /> <br />My progress has be halted by multiple mega yeast infections caused by both antibiotics (dental issue) and the lack of protective skin layers. So last week he took me off the Imiquiod and put me on the chlobetasol 24/7 for one month to build up the protective layer. It seems better this week. The yeast causes blistering, even on the inner thigh. Getting in and out of a vehicle is the worst. I am so tired of feeling my flesh tear-thereby ripping off all of the protective layers and starting back at square one. <br /> <br />If your vulvectomy doesn;t do the trick for you, I have been investigating some therapies including superheating of a local area of the body. If you are interested in reading about this I can send you a link.<br /> <br />I am 63 and a former teacher. I was born in Detroit, so Indiana is part of my experience. Is there a way to get each other's email addresses without posting them?<br /> <br />Tell me more about you. I don't think anyone has every done a study to see what we rare birds might have in common. Let it begin with us!<br /> <br />I shall think of you spritzing as I apply my steroids! Cheryl
Elizabeth_WebMD_Staff replied to Arizonasmiles's response:
Hello Members -
So glad you have been able to connect with one another!
I wanted to pop in to caution you about posting emails here on the world wide web. You may want to set up a separate email account for these sort of online communications.
And please keep posting here, you never know who you will be able to reach, help and support with your experience.
Hope this is helpful,
Elizabeth
So glad you have been able to connect with one another!
I wanted to pop in to caution you about posting emails here on the world wide web. You may want to set up a separate email account for these sort of online communications.
And please keep posting here, you never know who you will be able to reach, help and support with your experience.
Hope this is helpful,
Elizabeth
Report This| Share this:Extramammary Paget's DiseaseHello Members - <br /><br />So glad you have been able to connect with one another!<br /><br />I wanted to pop in to caution you about posting emails here on the world wide web. You may want to set up a separate email account for these sort of online communications.<br /><br />And please keep posting here, you never know who you will be able to reach, help and support with your experience.<br /><br />Hope this is helpful,<br />Elizabeth
hunteca replied to Arizonasmiles's response:
Hi Cheryl,
Well we already have a few things in common. I'm in my 60s and a teacher, although I'm still working. And we're both interested in nontraditional therapies as well as the standard options...I'm seeing an herbalist and acupuncturist with an MD in oncology. Sorry that you have to deal with yeast infections on top of the EMPD!
With some help from my computer savy family and friends, I have a temporary e-mail for us to use--as I see Elizabeth WebMD staff suggested. So e-mail me at temp@danielhunter.org and we can talk some more.
Looking forward to hearing from you!
Well we already have a few things in common. I'm in my 60s and a teacher, although I'm still working. And we're both interested in nontraditional therapies as well as the standard options...I'm seeing an herbalist and acupuncturist with an MD in oncology. Sorry that you have to deal with yeast infections on top of the EMPD!
With some help from my computer savy family and friends, I have a temporary e-mail for us to use--as I see Elizabeth WebMD staff suggested. So e-mail me at temp@danielhunter.org and we can talk some more.
Looking forward to hearing from you!
Report This| Share this:Extramammary Paget's DiseaseHi Cheryl,<br /><br />Well we already have a few things in common. I'm in my 60s and a teacher, although I'm still working. And we're both interested in nontraditional therapies as well as the standard options...I'm seeing an herbalist and acupuncturist with an MD in oncology. Sorry that you have to deal with yeast infections on top of the EMPD! <br /><br />With some help from my computer savy family and friends, I have a temporary e-mail for us to use--as I see Elizabeth WebMD staff suggested. So e-mail me at temp@danielhunter.org and we can talk some more.<br /><br />Looking forward to hearing from you!
hunteca replied to Arizonasmiles's response:
We already have several things in common: I'm in my 60s and a teacher--although I'm still teaching. We both are trying nontraditional as well as traditional therapies. I see an herbalist and acupunturist. Sorry you have to deal with yeast infections on top of EMPD!
I have a temporary e-mail for us to make contact as Elizabeth WebMD staff suggested. Looking forward to hearing from you soon!
temp@danielhunter.org
Carol
I have a temporary e-mail for us to make contact as Elizabeth WebMD staff suggested. Looking forward to hearing from you soon!
temp@danielhunter.org
Carol
Report This| Share this:Extramammary Paget's DiseaseWe already have several things in common: I'm in my 60s and a teacher--although I'm still teaching. We both are trying nontraditional as well as traditional therapies. I see an herbalist and acupunturist. Sorry you have to deal with yeast infections on top of EMPD!<br /><br />I have a temporary e-mail for us to make contact as Elizabeth WebMD staff suggested. Looking forward to hearing from you soon!<br /><br />temp@danielhunter.org<br /><br />Carol
Arizonasmiles replied to Elizabeth_WebMD_Staff's response:
Thank you web md. You have no idea how lonely it is to have a rare disease. Finally I have found one other person to talk to. I will continue to seek others to form a group.
Report This| Share this:Extramammary Paget's DiseaseThank you web md. You have no idea how lonely it is to have a rare disease. Finally I have found one other person to talk to. I will continue to seek others to form a group.
hunteca replied to Arizonasmiles's response:
Mayo Clinic put me on to a group called Imerman Angels that pairs people with similar diagnoses so a survivor supports someone going through a similar disease (http://www.imermanangels.org/). I'm paired with someone with vulvar cancer, which has been a great help to both of us, but even they couldn't find someone in their data bank with EMPD! I asked my surgeon to give my contact information to anyone she sees with EMPD and that hasn't worked. So, yes, the loneliness has been pretty hard; I cried tears of joy and relief when you first posted!
Report This| Share this:Extramammary Paget's DiseaseMayo Clinic put me on to a group called Imerman Angels that pairs people with similar diagnoses so a survivor supports someone going through a similar disease (http://www.imermanangels.org/). I'm paired with someone with vulvar cancer, which has been a great help to both of us, but even they couldn't find someone in their data bank with EMPD! I asked my surgeon to give my contact information to anyone she sees with EMPD and that hasn't worked. So, yes, the loneliness has been pretty hard; I cried tears of joy and relief when you first posted!
hunteca replied to Arizonasmiles's response:
Have you tried to e-mail? I keep checking! Hope everything is ok!
Report This| Share this:Extramammary Paget's DiseaseHave you tried to e-mail? I keep checking! Hope everything is ok!
Arizonasmiles replied to hunteca's response:
I just now tried it and so far it hasn't been rejected. I will also continue to look here.
Report This| Share this:Extramammary Paget's DiseaseI just now tried it and so far it hasn't been rejected. I will also continue to look here.
Arizonasmiles replied to Elizabeth_WebMD_Staff's response:
Elizabeth, do you have the capability to email the authors of the first two posts that were written two years ago? We would be interested in sharing with them and learning from them. Just let them know there has been new activty on the site.
Thanks,
Cheryl
Thanks,
Cheryl
Report This| Share this:Extramammary Paget's DiseaseElizabeth, do you have the capability to email the authors of the first two posts that were written two years ago? We would be interested in sharing with them and learning from them. Just let them know there has been new activty on the site.<br />Thanks,<br />Cheryl
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