1. < Gynecologic Cancers

Rare Cancer: Gynecologic Extramammary Paget's Disease

Posted by moffitt @moffitt, Sep 15, 2022

Extra Mammary Paget’s Disease - invasive cancer.
No know treatment or clinical trials.
Very rare and rarely studied.
Anyone else have it?

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bijou68 | @bijou68 | Oct 1, 2024

Joyce: Hi: originally Imiquimod was used for something else but has been proven good for treating the manifestations of Paget on the vulva. So far, I am proof of it. I think it costs $0 if you have Medicare supplement, like i have with Kaiser. Side effects of using the cream can be minimized.. I will be glad to go into the details if you need me to. Healing thoughts to all!

REPLY
1 reply
joyceinil | @joyceinil | Oct 6, 2024
In reply to @bijou68 "Joyce: Hi: originally Imiquimod was used for something else but has been proven good for treating..." + (show)
@bijou68

Joyce: Hi: originally Imiquimod was used for something else but has been proven good for treating the manifestations of Paget on the vulva. So far, I am proof of it. I think it costs $0 if you have Medicare supplement, like i have with Kaiser. Side effects of using the cream can be minimized.. I will be glad to go into the details if you need me to. Healing thoughts to all!

Jump to this post

I would very much like to talk to you about minimizing the side effects. However, my treatment for EMPD has been put on hold for probably five weeks. On Aug 23 I suddenly lost the sight in my right eye. It was feared I had Giant Cell Arteritis in the back of my eye which could wipe out the other eye as well. To prevent this I was put in a very large wonderful hospital in St Louis, Mo and given massive doses of steroids. In 3 days they decided it was PROBABLY not that but they continued the treatment. Luckily, I still have the sight in my left eye. After I returned home, it seems like I brought covid home with me and just got out of the hospital after another 10 day stay. I can't seem to get a break. Now I have to get weaned off the steroids before I can start the imiquimod. I am 84 and this has taken a toll on my old body. I will contact you when I am finally ready for that treatment, Thank you so much

REPLY
1 reply
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Oct 6, 2024
In reply to @joyceinil "I would very much like to talk to you about minimizing the side effects. However, my..." + (show)
@joyceinil

I would very much like to talk to you about minimizing the side effects. However, my treatment for EMPD has been put on hold for probably five weeks. On Aug 23 I suddenly lost the sight in my right eye. It was feared I had Giant Cell Arteritis in the back of my eye which could wipe out the other eye as well. To prevent this I was put in a very large wonderful hospital in St Louis, Mo and given massive doses of steroids. In 3 days they decided it was PROBABLY not that but they continued the treatment. Luckily, I still have the sight in my left eye. After I returned home, it seems like I brought covid home with me and just got out of the hospital after another 10 day stay. I can't seem to get a break. Now I have to get weaned off the steroids before I can start the imiquimod. I am 84 and this has taken a toll on my old body. I will contact you when I am finally ready for that treatment, Thank you so much

Jump to this post

@joyceinil Oh, dear, you have certainly been through it in hte last few months. How frightening to suddenly lose vision in one eye. It's good to know that your doctor was right there and you went to the wonderful hospital in St. Louis. While no one wants to be in the hospital it sounds like you had good care there although you were exposed to COVID? I do hope you are feeling better today, can wean off the steroids and start the treatment again for EMPD.

REPLY
1 reply
joyceinil | @joyceinil | Oct 6, 2024
In reply to @naturegirl5 "@joyceinil Oh, dear, you have certainly been through it in hte last few months. How frightening..." + (show)
@naturegirl5

@joyceinil Oh, dear, you have certainly been through it in hte last few months. How frightening to suddenly lose vision in one eye. It's good to know that your doctor was right there and you went to the wonderful hospital in St. Louis. While no one wants to be in the hospital it sounds like you had good care there although you were exposed to COVID? I do hope you are feeling better today, can wean off the steroids and start the treatment again for EMPD.

Jump to this post

THANK YOU, HELEN. I am new to this site and I already love it and everyone.

REPLY
1 reply
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Oct 6, 2024
In reply to @joyceinil "THANK YOU, HELEN. I am new to this site and I already love it and everyone." + (show)
@joyceinil

THANK YOU, HELEN. I am new to this site and I already love it and everyone.

Jump to this post

@joyceinil I'm happy to know that you feel welcome and love this website. We do our best to be welcoming and supportive of one another. 😌

REPLY
victoria15 | @victoria15 | Oct 24, 2024

Hi! Are you sure your diagnosis is EMPD? I was not offered chemo or radiation! All I had was MOH’s surgery in January, 2024. At every check, so far, I remain EMPD free.

Victoria

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