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Vulvar Melanoma and Aldara

Forums General Melanoma Community Vulvar Melanoma and Aldara

  • Post
    [email protected]
    Participant

    New subscriber looking for anyone who can relate to vulvar melanoma or who has had experience using aldara cream??

    New subscriber looking for anyone who can relate to vulvar melanoma or who has had experience using aldara cream??

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  • Replies
      Mary-E
      Participant

      Hi Cindy:  I have had a vulvar melanoma but haven't used Aldara.  I have read a little bit about it and understand it can be a challenging treatment.  How are you coping?

      Mary-E

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        [email protected]
        Participant

        Hi Mary- thank you for your reply.  The aldara has been challenging, I am approximately 8 weeks into the treatment and possibly have 8 more weeks to go.  My treatment options were fairly limited.  I have had two major surgeries to remove as much of the mass as possible but my situation is extremely unique in that it is very multifocal.  My doctor wanted to try another route before doing the only thing left which would be a vaginectomy.  The majority of my biopsies have come back as melanoma insitu but there were two spots that showed microinvasive melanoma, one spot being on my urethra.  Recently there have been studies showing success in treating some melanomas with aldara.  It appears from a recent check-up that it is working for me.  The side effects have been extremely unpleasant, when I first started the cream I had flu like symptoms each time I applied it.  That has lessened and now the irratation to my skin is very uncomfortable and I am extremely tired all the time.  I am keeping my fingers crossed until my next appointment and hoping for more good news.  

        Thanks again!  Cindy

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        [email protected]
        Participant

        Hi Mary- thank you for your reply.  The aldara has been challenging, I am approximately 8 weeks into the treatment and possibly have 8 more weeks to go.  My treatment options were fairly limited.  I have had two major surgeries to remove as much of the mass as possible but my situation is extremely unique in that it is very multifocal.  My doctor wanted to try another route before doing the only thing left which would be a vaginectomy.  The majority of my biopsies have come back as melanoma insitu but there were two spots that showed microinvasive melanoma, one spot being on my urethra.  Recently there have been studies showing success in treating some melanomas with aldara.  It appears from a recent check-up that it is working for me.  The side effects have been extremely unpleasant, when I first started the cream I had flu like symptoms each time I applied it.  That has lessened and now the irratation to my skin is very uncomfortable and I am extremely tired all the time.  I am keeping my fingers crossed until my next appointment and hoping for more good news.  

        Thanks again!  Cindy

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        Mary-E
        Participant

        Cindy:  From your profile I see you were diagnosed about the same time as me yet you are still dealing with this.  Wow.

        Just to be sure I understand, these are not recurrences but multifocal insitu lesions and the surgeries never gave you clear margins? 

           Yes indeed, fingers crossed for good news at your next appointment.

        Warm regards, Mary-E

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        Mary-E
        Participant

        Cindy:  From your profile I see you were diagnosed about the same time as me yet you are still dealing with this.  Wow.

        Just to be sure I understand, these are not recurrences but multifocal insitu lesions and the surgeries never gave you clear margins? 

           Yes indeed, fingers crossed for good news at your next appointment.

        Warm regards, Mary-E

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        [email protected]
        Participant

        Mary- yes we were diagnosed around the same time and yes I am still dealing with this.  I have yet to get clear margins. My doctor has been trying to be conservative in his treatment primarily because of my age (41).  So much of my vaginal area was covered with the discoloration that the only way to get rid of it all at once would be to do a vaginectomy.  He is trying to avoid disfigurment by doing the surgeries a little at a time.  As I mentioned, we have done two already and if this cream doesn't work I will have to have a much more invasive procedure.  I should add that, I first noticed a small area of discoloration of my vaginal area in 2002 and brought it to the attention of my OB/GYN.  In 2004 I had my first biopsy which I was told was benign.  Over the years, I could see the progression of the discoloration but didn't want to seem like I was making a mountain out of a mole hill, since I had already been told it was benign.  I also had no idea of what it could be if it wasn't benign, so I trusted my doctor every year when I went for my annual exams.  Finally in 2009 I guess it was so obvious that the discoloration was ALL OVER that the doctor sent me to a gynecologic oncologist.  He did 3 more punch hole biopsies and told me it was lentigo simplex.  He said "You might want to follow up with a dermatologist"  Thankfully I did that and when she examined me and saw the biopsy reports she KNEW something was not right.  She immediately referred me to Memorial Sloan Kettering Cancer Center in NYC.  Their pathologists were able to obtain both of my previous biopsy slides and they did their own review.  They found that I had precancerous lesions in 2004 and melanoma insitu 2009……and then the fun began.  I have been told that my condition, all things considered, is extremely rare.  My doctor has never seen a case like mine in 25 years of practice and he is one of the top OB/GYN cancer doctors in the country.  This forum has finally given me some outlet for finding people that have experienced some of what I am going through.

        How are you doing?

        All the best, Cindy

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        [email protected]
        Participant

        Mary- yes we were diagnosed around the same time and yes I am still dealing with this.  I have yet to get clear margins. My doctor has been trying to be conservative in his treatment primarily because of my age (41).  So much of my vaginal area was covered with the discoloration that the only way to get rid of it all at once would be to do a vaginectomy.  He is trying to avoid disfigurment by doing the surgeries a little at a time.  As I mentioned, we have done two already and if this cream doesn't work I will have to have a much more invasive procedure.  I should add that, I first noticed a small area of discoloration of my vaginal area in 2002 and brought it to the attention of my OB/GYN.  In 2004 I had my first biopsy which I was told was benign.  Over the years, I could see the progression of the discoloration but didn't want to seem like I was making a mountain out of a mole hill, since I had already been told it was benign.  I also had no idea of what it could be if it wasn't benign, so I trusted my doctor every year when I went for my annual exams.  Finally in 2009 I guess it was so obvious that the discoloration was ALL OVER that the doctor sent me to a gynecologic oncologist.  He did 3 more punch hole biopsies and told me it was lentigo simplex.  He said "You might want to follow up with a dermatologist"  Thankfully I did that and when she examined me and saw the biopsy reports she KNEW something was not right.  She immediately referred me to Memorial Sloan Kettering Cancer Center in NYC.  Their pathologists were able to obtain both of my previous biopsy slides and they did their own review.  They found that I had precancerous lesions in 2004 and melanoma insitu 2009……and then the fun began.  I have been told that my condition, all things considered, is extremely rare.  My doctor has never seen a case like mine in 25 years of practice and he is one of the top OB/GYN cancer doctors in the country.  This forum has finally given me some outlet for finding people that have experienced some of what I am going through.

        How are you doing?

        All the best, Cindy

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        Mary-E
        Participant

        I truly feel for you Cindy…I can relate to some of your experience, but I've had the luxury of almost a year  to heal both physically and emotionally from surgery.  I did go through a bit of a "cancer-head" period where I was overwhelmed with anxiety but feel more or less back to "normal" now.    I was considered  youngish for vulvar mel at 46.  It was also apparently surprising to the Gyno-Oncs that the mel had metastasized to my lymph given that the lesion was relatively shallow.  Since it is so rare,  it is very difficult to find information and others who share the same diagnosis.  If you search the archived bulletin board on this site you will find quite a few threads referring to vulvar or vaginal melanoma.  It does help a lot to be able to discuss this with someone in a similar situation and pool information.  Feel free to contact me by email if you wish. 

        Mary-E

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        Mary-E
        Participant

        I truly feel for you Cindy…I can relate to some of your experience, but I've had the luxury of almost a year  to heal both physically and emotionally from surgery.  I did go through a bit of a "cancer-head" period where I was overwhelmed with anxiety but feel more or less back to "normal" now.    I was considered  youngish for vulvar mel at 46.  It was also apparently surprising to the Gyno-Oncs that the mel had metastasized to my lymph given that the lesion was relatively shallow.  Since it is so rare,  it is very difficult to find information and others who share the same diagnosis.  If you search the archived bulletin board on this site you will find quite a few threads referring to vulvar or vaginal melanoma.  It does help a lot to be able to discuss this with someone in a similar situation and pool information.  Feel free to contact me by email if you wish. 

        Mary-E

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      Mary-E
      Participant

      Hi Cindy:  I have had a vulvar melanoma but haven't used Aldara.  I have read a little bit about it and understand it can be a challenging treatment.  How are you coping?

      Mary-E

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      Kimmer
      Participant

      Hi Cindy,

      I used Aldera for about 6 weeks for an area of actinic keratosis ..on my cheek just below the left eye.  It works with your immune system and tends to make things worse before they get better.   The treatment was pretty bad as it caused the area to swell and turn very red with a lot of itching, flaking and (ick) scabbing.  Other spots also popped up.   I began to feel a little sick and was kinda frightened by the look of the new areas, so I went back to my derm for her to check it out.  She said to discontinue it for a week and let the areas heal a bit.  She also said that I was applying too much and just to dab it on with a cotton swab and use it every other day.

      I really didn't want to leave the house because it looked so bad! 

      The good news is that the treatment worked and the AK is gone.  It was about 4 years ago.  The other thing is that I have no scarring at all.

      He is a link that discusses the treatment.  Everything it says is true to my experience, although in a different area of the body. 

      http://www.aldara.com/ff/page_id_5_section_id_7.html 

      Best of luck!

      Take good care, K.

       

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      Kimmer
      Participant

      Hi Cindy,

      I used Aldera for about 6 weeks for an area of actinic keratosis ..on my cheek just below the left eye.  It works with your immune system and tends to make things worse before they get better.   The treatment was pretty bad as it caused the area to swell and turn very red with a lot of itching, flaking and (ick) scabbing.  Other spots also popped up.   I began to feel a little sick and was kinda frightened by the look of the new areas, so I went back to my derm for her to check it out.  She said to discontinue it for a week and let the areas heal a bit.  She also said that I was applying too much and just to dab it on with a cotton swab and use it every other day.

      I really didn't want to leave the house because it looked so bad! 

      The good news is that the treatment worked and the AK is gone.  It was about 4 years ago.  The other thing is that I have no scarring at all.

      He is a link that discusses the treatment.  Everything it says is true to my experience, although in a different area of the body. 

      http://www.aldara.com/ff/page_id_5_section_id_7.html 

      Best of luck!

      Take good care, K.

       

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      Janner
      Participant

      My oncologist is doing a study involving Aldara and Lentigo Maligna Melanoma.  This is typically found on the face and can be very difficult to get good margins.  The study isn't finished (as far as I know), but the preliminary results are very good.  Much lower local recurrence rate and smaller defects to remove.  In the last symposium I attended, they were not using it for anything other than Lentigo Maligna Melanoma on the face.  However, I can see where it might be of interest in someone with vulvar melanoma.  I have never heard anyone mention that scenario on this board, however.  Please post back if you decide to go this route.  There have been other vulvar melanoma warriors here and it would be of interest to all.

      Best wishes,

      Janner

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      Janner
      Participant

      My oncologist is doing a study involving Aldara and Lentigo Maligna Melanoma.  This is typically found on the face and can be very difficult to get good margins.  The study isn't finished (as far as I know), but the preliminary results are very good.  Much lower local recurrence rate and smaller defects to remove.  In the last symposium I attended, they were not using it for anything other than Lentigo Maligna Melanoma on the face.  However, I can see where it might be of interest in someone with vulvar melanoma.  I have never heard anyone mention that scenario on this board, however.  Please post back if you decide to go this route.  There have been other vulvar melanoma warriors here and it would be of interest to all.

      Best wishes,

      Janner

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      Everymoment
      Participant
      I just had surgery to remove my vulvar melanoma. I have not heard of this treatment but if it is working, stick with it!

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      Everymoment
      Participant
      I just had surgery to remove my vulvar melanoma. I have not heard of this treatment but if it is working, stick with it!

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