CancerCompass message board discussion started by Vera G. on 3/4/2003 http://www.cancercompass.com/message-board/message/all,528,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My 21-year-old daughter was diagnosed with Hidradenocarcinoma in Feb. 2002. This was a tumor in the sweat gland of her vulva. The doctors say this is such a rare disease that not many people have even heard of it let alone know what to do about it. My understanding is that there have only been about 60 other women with this disease and there were no follow-ups on them after surgery to remove the tumor. Her doctors have consulted with doctors all over the world but still are guessing. She had surgery in March 2002 to remove the tumor and all surrounding lymph nodes (it had spread to one). In June another tumor showed up in the same place, more surgery. In July they found the cancer had spread to both lungs and her esophagus. She then started radiation of the pelvic area and chemo. In September she spent a week and a half in the hospital with radiation burns. Her chemo drug that she started with was Taxol and it seemed to be working for awhile but then quit and the tumors grew bigger in her lungs. She is now on Gemzar and we pray every day that it will work. I guess I am just wondering if anyone has heard of this disease or knows anyone that has had it that we might get some answers. Even the National Cancer Institute told us they had nothing on it. Right now my daughter is still doing pretty well. Her attitude is great. She is married and has a two-year-old son and from day one, she has said, "I'm going to be fine, I have a son to raise". This girl has been through hell but she just keeps on going, taking it one day at a time. She is my hero. Vera G. Tue, 04 Mar 2003 00:00:00 GMT You may find some information by going to google.com--use them to search mnwelldir.org/docs/cancer1/althrpy.htm This is the Wellness Directory of Minnesota, amd I recommend that you check their information on Low Dose NALTREXONE. Carolyn D. Wed, 05 Mar 2003 00:00:00 GMT Hi! I have this tumor, too. And I am receiving state-of-the-art treatment that might interest you. Please feel free to contact me. I would very much be interested in exchanging my experiences with this cancer. Hope to hear from you soon. Stephan g. Thu, 24 Jun 2004 00:00:00 GMT Hi Vera, I just found your message by looking through the internet for this disease. I have also been diagnosed with hidradenocarcinoma, though it was located on a different area of my body. If you are still looking at this website, I would really appreciate any feedback on information that you found for your daughter. I hope she is well and strong. Canada1 Wed, 31 Aug 2005 00:00:00 GMT I have been researching this type of cancer for my uncle, who recently had his arm amputated because of it. Though still extremely rare, it seems to be becoming more common. I would like to pool/exchange whatever resources/information anybody has, so we can all benefit. Please e-mail me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---asap. For my uncle, time is of the essence. Rosanna Sun, 18 Sep 2005 00:00:00 GMT  On 6/24/2004 Stephan g. wrote:Hi! I have this tumor, too. And I am receiving state-of-the-art treatment that might interest you. Please feel free to contact me. I would very much be interested in exchanging my experiences with this cancer. Hope to hear from you soon. I have just been diagnosed with this type   of cancer. I would like to know how you are being treated. Do you do and supplementation with vitamins, minerals,AHCC? Buck Fever Mon, 30 Apr 2007 00:00:00 GMT  On 4/30/2007 Buck Fever wrote: On 6/24/2004 Stephan g. wrote:Hi! I have this tumor, too. And I am receiving state-of-the-art treatment that might interest you. Please feel free to contact me. I would very much be interested in exchanging my experiences with this cancer. Hope to hear from you soon.I have a loved one who was recently diagnosed with this same cancer.  How is your treatment going and are you on a vitamin regimen of any kind?  There is so little information on this type of cancer.  Any insight you could offer would be so helpful.I have just been diagnosed with this type   of cancer. I would like to know how you are being treated. Do you do and supplementation with vitamins, minerals,AHCC?  Apoopedmom Sat, 09 Jun 2007 00:00:00 GMT Hello -  My father was recently diagnosed with hidradenocarcinoma and I am desperate for information.  It seems so rare; I can't find much on the internet.  Any suggestions or information you can share? Thanks so much - Kelly Kelly OA Fri, 28 Dec 2007 00:00:00 GMT My father was recently diagnosed with hidradenocarcinoma.  I would very much like to know about the state of the art treatment you are receiving. Thanks!Kelly Kelly OA Fri, 28 Dec 2007 00:00:00 GMT  On 6/9/2007 Apoopedmom wrote: On 4/30/2007 Buck Fever wrote: On 6/24/2004 Stephan g. wrote:Hi! I have this tumor, too. And I am receiving state-of-the-art treatment that might interest you. Please feel free to contact me. I would very much be interested in exchanging my experiences with this cancer. Hope to hear from you soon.I have a loved one who was recently diagnosed with this same cancer.  How is your treatment going and are you on a vitamin regimen of any kind?  There is so little information on this type of cancer.  Any insight you could offer would be so helpful.I have just been diagnosed with this type   of cancer. I would like to know how you are being treated. Do you do and supplementation with vitamins, minerals,AHCC?  i would like information on this and treatment  sue40 Thu, 16 Oct 2008 00:00:00 GMT