Aggressive Digital Eccrine Adenocarcinoma

cking
cking Member Posts: 2
edited March 2014 in Rare and Other Cancers #1
Does anyone have any information they would share on treatment and/or clinical trials of this type of cancer of the eccrine sweat gland?

Comments

  • russian sonia
    russian sonia Member Posts: 1
    #2
    aggressive digital eccrine adenocarcinoma
    My husband was just diagnosed with this. We are trying to gather info as well. The only comprehensive study I could find:

    Results: The American Journal of Surgical Pathology
    Aggressive Digital Papillary Adenocarcinoma: (Aggressive Digital Papillary
    Adenoma and Adenocarcinoma Revisited)
    ISSN: 0147-5185Accession: 00000478-200006000-00002Full Text (PDF) 3263 K
    Author(s):

    Duke, Wayne H. M.D.; Sherrod, Theresa T. M.D.; Lupton, George P. M.D.

    Issue:Volume 24(6), June 2000, pp 775-784

    Publication Type:[ORIGINAL ARTICLES]

    Publisher:(C) 2000 Lippincott Williams & Wilkins, Inc.
  • Deltat210
    Deltat210 Member Posts: 7
    #3
    russian sonia said:

    aggressive digital eccrine adenocarcinoma
    My husband was just diagnosed with this. We are trying to gather info as well. The only comprehensive study I could find:

    Results: The American Journal of Surgical Pathology
    Aggressive Digital Papillary Adenocarcinoma: (Aggressive Digital Papillary
    Adenoma and Adenocarcinoma Revisited)
    ISSN: 0147-5185Accession: 00000478-200006000-00002Full Text (PDF) 3263 K
    Author(s):

    Duke, Wayne H. M.D.; Sherrod, Theresa T. M.D.; Lupton, George P. M.D.

    Issue:Volume 24(6), June 2000, pp 775-784

    Publication Type:[ORIGINAL ARTICLES]

    Publisher:(C) 2000 Lippincott Williams & Wilkins, Inc.

    Been dealing with this for
    Been dealing with this for about 15 years, two tumors removed, now the entire left index finger, cat scans etc. Rare tumor I guess....
  • Margo12
    Margo12 Member Posts: 29
    #4
    Deltat210 said:

    Been dealing with this for
    Been dealing with this for about 15 years, two tumors removed, now the entire left index finger, cat scans etc. Rare tumor I guess....

    Aggressive Digital Papillary Adenocarcinoma
    Has anyone else had the experience (like me) of having this rare cancer metasasize? I'm doing okay at this point but it is a constant worry. Hope to hear from others and especially about any promising treatments. Thanks
  • toochie
    toochie Member Posts: 5
    #5
    Margo12 said:

    Aggressive Digital Papillary Adenocarcinoma
    Has anyone else had the experience (like me) of having this rare cancer metasasize? I'm doing okay at this point but it is a constant worry. Hope to hear from others and especially about any promising treatments. Thanks

    My husband was diagnosed
    My husband was diagnosed with this as well we are going to Sloan Kettering. APparently the only treatment is amputation, unless it matastisised to another part of the body. Has any been to Sloan Kettering for this cancer? We want to find a doc that dealt with this before
  • toochie
    toochie Member Posts: 5
    #6
    Margo12 said:

    Aggressive Digital Papillary Adenocarcinoma
    Has anyone else had the experience (like me) of having this rare cancer metasasize? I'm doing okay at this point but it is a constant worry. Hope to hear from others and especially about any promising treatments. Thanks

    My husband was diagnosed
    My husband was diagnosed with this as well we are going to Sloan Kettering. APparently the only treatment is amputation, unless it matastisised to another part of the body. Has any been to Sloan Kettering for this cancer? We want to find a doc that dealt with this before
  • toochie
    toochie Member Posts: 5
    #7
    Margo12 said:

    Aggressive Digital Papillary Adenocarcinoma
    Has anyone else had the experience (like me) of having this rare cancer metasasize? I'm doing okay at this point but it is a constant worry. Hope to hear from others and especially about any promising treatments. Thanks

    My husband was diagnosed
    My husband was diagnosed with this as well we are going to Sloan Kettering. APparently the only treatment is amputation, unless it matastisised to another part of the body. Has any been to Sloan Kettering for this cancer? We want to find a doc that dealt with this before
  • dkw53
    dkw53 Member Posts: 21
    #8
    toochie said:

    My husband was diagnosed
    My husband was diagnosed with this as well we are going to Sloan Kettering. APparently the only treatment is amputation, unless it matastisised to another part of the body. Has any been to Sloan Kettering for this cancer? We want to find a doc that dealt with this before

    Digital papillary adenocarcinoma
    MY HUSBAND, TOO, WAS DIGNOISED WITH THIS; HE IS GOING THROUGH THE MAYO CLINIC IN JACKSONVILLE, FL. AFTER TESTING, HE HAS BEEN ADVISED TO HAVE AMPUTATION OF HIS LEFT INDEX FINGER. AFTER REVIEWING OTHER POST IN THIS SITE, WE THINK THAT THIS IS THE BEST. AFTER SURGERY WE SHOULD KNOW IF THE LYMPH NODES HAVE BEEN AFFECTED. IF SO, HE WILL BE GETTING CHEMO. THE ONCOLOGIST WANTS TO KEEP AN EYE ON HIM FOR A FEW YEARS, EVEN IF THE LYMPH NODES ARE NOT AFFECTED. THIS WILL MEAN REGULAR CHEST X-RAYS SINCE THE DISEASE SHOW UP IN THE LUNGS. IT IS A RARE DISORDER AND NOT MUCH OUT THERE ON IT. GOOD LUCK AND IF ANYONE ELSE OUT THERE IS DEALING WITH THIS, PLEASE LEAVE A POST EVERY NOW AND THEN SO I AND OTHERS LIKE US CAN SHARE WITH THE MEDICAL COMMUNITY.
  • Margo12
    Margo12 Member Posts: 29
    #9
    dkw53 said:

    Digital papillary adenocarcinoma
    MY HUSBAND, TOO, WAS DIGNOISED WITH THIS; HE IS GOING THROUGH THE MAYO CLINIC IN JACKSONVILLE, FL. AFTER TESTING, HE HAS BEEN ADVISED TO HAVE AMPUTATION OF HIS LEFT INDEX FINGER. AFTER REVIEWING OTHER POST IN THIS SITE, WE THINK THAT THIS IS THE BEST. AFTER SURGERY WE SHOULD KNOW IF THE LYMPH NODES HAVE BEEN AFFECTED. IF SO, HE WILL BE GETTING CHEMO. THE ONCOLOGIST WANTS TO KEEP AN EYE ON HIM FOR A FEW YEARS, EVEN IF THE LYMPH NODES ARE NOT AFFECTED. THIS WILL MEAN REGULAR CHEST X-RAYS SINCE THE DISEASE SHOW UP IN THE LUNGS. IT IS A RARE DISORDER AND NOT MUCH OUT THERE ON IT. GOOD LUCK AND IF ANYONE ELSE OUT THERE IS DEALING WITH THIS, PLEASE LEAVE A POST EVERY NOW AND THEN SO I AND OTHERS LIKE US CAN SHARE WITH THE MEDICAL COMMUNITY.

    Your husband
    It sounds like your husband is being very well advised/ cared for by Mayo. Please see my other posts regarding this rare cancer. Best of luck to both of you.
  • BEBS
    BEBS Member Posts: 17
    #10
    dkw53 said:

    Digital papillary adenocarcinoma
    MY HUSBAND, TOO, WAS DIGNOISED WITH THIS; HE IS GOING THROUGH THE MAYO CLINIC IN JACKSONVILLE, FL. AFTER TESTING, HE HAS BEEN ADVISED TO HAVE AMPUTATION OF HIS LEFT INDEX FINGER. AFTER REVIEWING OTHER POST IN THIS SITE, WE THINK THAT THIS IS THE BEST. AFTER SURGERY WE SHOULD KNOW IF THE LYMPH NODES HAVE BEEN AFFECTED. IF SO, HE WILL BE GETTING CHEMO. THE ONCOLOGIST WANTS TO KEEP AN EYE ON HIM FOR A FEW YEARS, EVEN IF THE LYMPH NODES ARE NOT AFFECTED. THIS WILL MEAN REGULAR CHEST X-RAYS SINCE THE DISEASE SHOW UP IN THE LUNGS. IT IS A RARE DISORDER AND NOT MUCH OUT THERE ON IT. GOOD LUCK AND IF ANYONE ELSE OUT THERE IS DEALING WITH THIS, PLEASE LEAVE A POST EVERY NOW AND THEN SO I AND OTHERS LIKE US CAN SHARE WITH THE MEDICAL COMMUNITY.

    Just Diagnosed
    Hi Everyone,

    I am 37 and was just diagnosed officially on Wednesday, following excision of a lesion on my left index finger. Have not met yet with an oncologist. However, based on my own research which I communicated to my surgeon, he is willing to do the amputation tomorrow (mentally, I just want this thing completely out of my body).

    Saying that, I see here that most seem to do the amputation and lymph nodes during the same surgery ... so, wondering if my need for speed is unecessarily result in 2 surgeys instead of one.

    I know it's unlikely I'll get a response from anyone in time, but if someone is on-line, would love your opinion.

    Thanks!
  • dkw53
    dkw53 Member Posts: 21
    #11
    BEBS said:

    Just Diagnosed
    Hi Everyone,

    I am 37 and was just diagnosed officially on Wednesday, following excision of a lesion on my left index finger. Have not met yet with an oncologist. However, based on my own research which I communicated to my surgeon, he is willing to do the amputation tomorrow (mentally, I just want this thing completely out of my body).

    Saying that, I see here that most seem to do the amputation and lymph nodes during the same surgery ... so, wondering if my need for speed is unecessarily result in 2 surgeys instead of one.

    I know it's unlikely I'll get a response from anyone in time, but if someone is on-line, would love your opinion.

    Thanks!

    No expert
    Hello BEBS, I wish I could advise you. My husband was diagnosed in April and the Mayo Clinic is not wasting any time. After review of his biopsy and what little information they have, his surgeon recommends amputation. After my own research, I am thinking that my husband should take the advise of the surgeon. I would much rather have him than his finger. If you have read the other post, you probably agree. It seems a little radical, but seems to have the better outcome. Good luck. Please keep us posted here with your progress. This may help others and even some of the Doctors who deal with this. Thanks.
  • BEBS
    BEBS Member Posts: 17
    #12
    toochie said:

    My husband was diagnosed
    My husband was diagnosed with this as well we are going to Sloan Kettering. APparently the only treatment is amputation, unless it matastisised to another part of the body. Has any been to Sloan Kettering for this cancer? We want to find a doc that dealt with this before

    Sloan Doctors?
    Hi toochie,

    How did your visit to Solan go? Who are your doctors at Sloan?

    I am being treated locally and they are doing a good job. However, Sloan is only an hour or two away, so would love to make a connection between my doctors and Sloan doctors, as it may be beneficial. With something so rare, it seems anyone with previous treatment experience would be a good resource.

    Thanks,

    BEBS
  • teddyray
    teddyray Member Posts: 5
    #13
    BEBS said:

    Sloan Doctors?
    Hi toochie,

    How did your visit to Solan go? Who are your doctors at Sloan?

    I am being treated locally and they are doing a good job. However, Sloan is only an hour or two away, so would love to make a connection between my doctors and Sloan doctors, as it may be beneficial. With something so rare, it seems anyone with previous treatment experience would be a good resource.

    Thanks,

    BEBS

    treatment
    does anyone know if chemo worked for anyone after this cancer comes back mine came back in leg and lung. ive been worried and would realy like to know thanks
  • BEBS
    BEBS Member Posts: 17
    #14
    teddyray said:

    treatment
    does anyone know if chemo worked for anyone after this cancer comes back mine came back in leg and lung. ive been worried and would realy like to know thanks

    ADPAca Chemotherapy
    Hi teddyray,

    I'm so sorry to hear this has come back and spread. I was diagnosed in May 2011 and had a finger amputation and SLNB (which was clean). I will now have annual CT lung scans.

    Regarding chemo, obviously it's best to check with your oncologist ... I can only speak based on the what I've read from available research.

    There is a study by Kao from 1987, another by Duke in 2000 and a couple of literature reviews from 2008/2009 that summarize the documented cases. The conclusion seems to be that the impact of chemo is uncertain, primarily because of it's limited use (due to the rarity of this cancer).

    Recently, there was another paper discussing targeted therapies for these types of cancers, including ADPAca. If you search the title below, you can get the PDF.

    "A potential role for targeted therapy in a subset
    of metastasizing adnexal carcinomas"

    If you don't mind my asking, where are you being treated? When was your original diagnosis and what was the treatment at that time?

    Best wishes,

    BEBS
  • teddyray
    teddyray Member Posts: 5
    #15
    BEBS said:

    ADPAca Chemotherapy
    Hi teddyray,

    I'm so sorry to hear this has come back and spread. I was diagnosed in May 2011 and had a finger amputation and SLNB (which was clean). I will now have annual CT lung scans.

    Regarding chemo, obviously it's best to check with your oncologist ... I can only speak based on the what I've read from available research.

    There is a study by Kao from 1987, another by Duke in 2000 and a couple of literature reviews from 2008/2009 that summarize the documented cases. The conclusion seems to be that the impact of chemo is uncertain, primarily because of it's limited use (due to the rarity of this cancer).

    Recently, there was another paper discussing targeted therapies for these types of cancers, including ADPAca. If you search the title below, you can get the PDF.

    "A potential role for targeted therapy in a subset
    of metastasizing adnexal carcinomas"

    If you don't mind my asking, where are you being treated? When was your original diagnosis and what was the treatment at that time?

    Best wishes,

    BEBS

    TREATMENT
    IM BEING TREATSD AT WILLIS KNIGHTON IN SHREVPORT LA, DIAGNOSED IN APRIL 2011, FIRST DIAGNOSED WITH GOUT ABOUT A YEAR EARLYER. THE TREATMENT THEN WAS AMPUTATION. LEFT (BKA) NOW ITS SPREAD AFTER THE CHEMO. I WILL BE GOING TO MD ANDERSON IN HUSTON MAY 7 FOR CLINICAL TRIAL HOPEFULLY THEY WILL FIND SOMETHING THAT HELPS IF SO ILL TELL EVERYBODY.
  • teddyray
    teddyray Member Posts: 5
    #16
    BEBS said:

    ADPAca Chemotherapy
    Hi teddyray,

    I'm so sorry to hear this has come back and spread. I was diagnosed in May 2011 and had a finger amputation and SLNB (which was clean). I will now have annual CT lung scans.

    Regarding chemo, obviously it's best to check with your oncologist ... I can only speak based on the what I've read from available research.

    There is a study by Kao from 1987, another by Duke in 2000 and a couple of literature reviews from 2008/2009 that summarize the documented cases. The conclusion seems to be that the impact of chemo is uncertain, primarily because of it's limited use (due to the rarity of this cancer).

    Recently, there was another paper discussing targeted therapies for these types of cancers, including ADPAca. If you search the title below, you can get the PDF.

    "A potential role for targeted therapy in a subset
    of metastasizing adnexal carcinomas"

    If you don't mind my asking, where are you being treated? When was your original diagnosis and what was the treatment at that time?

    Best wishes,

    BEBS

    TREATMENT
    IM BEING TREATSD AT WILLIS KNIGHTON IN SHREVPORT LA, DIAGNOSED IN APRIL 2011, FIRST DIAGNOSED WITH GOUT ABOUT A YEAR EARLYER. THE TREATMENT THEN WAS AMPUTATION. LEFT (BKA) NOW ITS SPREAD AFTER THE CHEMO. I WILL BE GOING TO MD ANDERSON IN HUSTON MAY 7 FOR CLINICAL TRIAL HOPEFULLY THEY WILL FIND SOMETHING THAT HELPS IF SO ILL TELL EVERYBODY.
  • teddyray
    teddyray Member Posts: 5
    #17
    BEBS said:

    ADPAca Chemotherapy
    Hi teddyray,

    I'm so sorry to hear this has come back and spread. I was diagnosed in May 2011 and had a finger amputation and SLNB (which was clean). I will now have annual CT lung scans.

    Regarding chemo, obviously it's best to check with your oncologist ... I can only speak based on the what I've read from available research.

    There is a study by Kao from 1987, another by Duke in 2000 and a couple of literature reviews from 2008/2009 that summarize the documented cases. The conclusion seems to be that the impact of chemo is uncertain, primarily because of it's limited use (due to the rarity of this cancer).

    Recently, there was another paper discussing targeted therapies for these types of cancers, including ADPAca. If you search the title below, you can get the PDF.

    "A potential role for targeted therapy in a subset
    of metastasizing adnexal carcinomas"

    If you don't mind my asking, where are you being treated? When was your original diagnosis and what was the treatment at that time?

    Best wishes,

    BEBS

    TREATMENT
    IM BEING TREATSD AT WILLIS KNIGHTON IN SHREVPORT LA, DIAGNOSED IN APRIL 2011, FIRST DIAGNOSED WITH GOUT ABOUT A YEAR EARLYER. THE TREATMENT THEN WAS AMPUTATION. LEFT (BKA) NOW ITS SPREAD AFTER THE CHEMO. I WILL BE GOING TO MD ANDERSON IN HUSTON MAY 7 FOR CLINICAL TRIAL HOPEFULLY THEY WILL FIND SOMETHING THAT HELPS IF SO ILL TELL EVERYBODY.
  • ssalinas
    ssalinas Member Posts: 2
    #18
    teddyray said:

    TREATMENT
    IM BEING TREATSD AT WILLIS KNIGHTON IN SHREVPORT LA, DIAGNOSED IN APRIL 2011, FIRST DIAGNOSED WITH GOUT ABOUT A YEAR EARLYER. THE TREATMENT THEN WAS AMPUTATION. LEFT (BKA) NOW ITS SPREAD AFTER THE CHEMO. I WILL BE GOING TO MD ANDERSON IN HUSTON MAY 7 FOR CLINICAL TRIAL HOPEFULLY THEY WILL FIND SOMETHING THAT HELPS IF SO ILL TELL EVERYBODY.

    Eccrine Adenocarcinoma
    Hello Teddy,

    How did your appointment go with MD ANDERSON in Houston? My stepfather is experiencing the same situation. After being diagnosed with eccrine adencarcinoma in a cyst he had on his head, he was now told it was found on his lungs after almost 9 mos of chemotherapy. What have the doctors recommended for your situation? Please share any information that you may have. I truly appreciate it. I hope things have gone well for you. Thank you.
  • ssalinas
    ssalinas Member Posts: 2
    #19
    BEBS said:

    Sloan Doctors?
    Hi toochie,

    How did your visit to Solan go? Who are your doctors at Sloan?

    I am being treated locally and they are doing a good job. However, Sloan is only an hour or two away, so would love to make a connection between my doctors and Sloan doctors, as it may be beneficial. With something so rare, it seems anyone with previous treatment experience would be a good resource.

    Thanks,

    BEBS

    Sloan Ketterin
    Hello,

    Were you able to obtain a doctor that is familiar with this case? Please let me know, my stepfather is looking for a second opinion at Sloan Ketterin because not many other doctors are familiar with this kind of cancer. I would sincerely appreciate it if you could share your experience with them and what doctors you have been assigned, or what kind of therapy. Thank you in advance and I truly hope everything has gone well for you.

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