CancerCompass message board discussion started by Pat S. on 2/14/2004 http://www.cancercompass.com/message-board/message/all,1098,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ One year ago I was diagnosed with Mixed mullerian carcinoma with 2 components, 1. ceerous-like ovarian cancer and 2. rhabdomyosarcoma, cancer of the muscle tissue. I've had hysterectomy, chemo, radiation and internal radiation. At the end of treatment in Dec.2003 my CA125 level was 8.8 but since then has gone up to 35. Will be going for more tests, but I'm looking for anyone with this type of cancer. The internet has been of little help so far. Can anyone tell me where to look? When I asked my Dr's about infro on the internet they just said I would't find much. They both have only treated 2-3 cases of this type of cancer. I would appreciate any information and would love to talk with someone having the same cancer. Thanks so much. Pat Pat S. Sat, 14 Feb 2004 00:00:00 GMT This is the first time I have heard of this type of cancer. I went to Yahoo and did a search and found some information, I'm not for certain if any of this info could help. http://www.esmo.org/reference/abstracts00/gc/391.htm http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=7518735&dopt=Abstract http://pathweb.uchc.edu/eAtlas/Nav/amtui.htm I hope this help's...If not go to www.yahoo.com and type your condition in the search and it came up with a lot of things. Try to have a great Valentines Day. Shellie E. Sat, 14 Feb 2004 00:00:00 GMT Pat, I have the same type of uterine cancer as you. I went to the Cancer Treatment Centers of America for my treatment. Dr. Williams is a wonderful doctor there. Check with the Midwestern Regional Medical Center branch and you will be able to find out more about this type of cancer. Katwood1 Mon, 24 May 2004 00:00:00 GMT My mother was diagnosed with this cancer 4 years ago. At that time there was only 1300 cases ever documented. The survival rated was less than 10%. She passed 7 weeks after surgery and diagnosis. Kasey Tue, 22 Jun 2004 00:00:00 GMT My mother had Mullerian cancer, she was diagnosed in 1995, as you say there is not much known about it. The doctor that treated her only sees about 2 cases per year. She had hysterectomy and was given double chemotherapy treatment and had no problems after that. She passed away in 2001 but it was from heart problems not from the cancer. www.cancersource.com gives a complete description of the condition. Stay strong and think only happy thoughts. Regards Sheena Rebeljane Sat, 22 Jan 2005 00:00:00 GMT I was just diagnosed with Mixed Mullerian Malignancy Tumor this March. I had a total hysterectomy and am under going radiation now. I have had five treatments and have four more weeks of the same. I was lucky...by GYN did not sit on his duff and immediately did the D&C which showed the MMMT. He got me into a GYN Oncologist the same day he got the path report and in three days I was scheduled for surgery. I do not believe I would have the positive prognosis I do if he had not been so quick to take care of me. The MMMT had only gone 50 % into my endometrium and all 15 lymph nodes and the washings were negative. I guess the moral to this story is if you are post menopausal and have bleeding...have your GYN do a D&C and not just an endometrial biopsy..mine was negative....! You cannot rely on just that... I thank God every day that this was caught so early and urge any female with the same symptoms to not hesitate to see their GYN. All I have to do now is get through the radiation.......;) Vanseskie Tue, 05 Apr 2005 00:00:00 GMT Dear Vanseskie, My mother was just dagnosed with MMMT. She immediatelly underwent surgery and now she is under chemo with doxorubicin+cisplatin. But the doctors didn't tell us anything about radiation. I would really appreciate if you could inform me what type of radiation they used for you. Thank you. My thoughts are with you and all the women that suffer from this rare type! hope to hear from you soon. Angelika Angelika Sun, 17 Apr 2005 00:00:00 GMT Hello everyone- My mother was diagnosed with uterine MMMT in April 2004. I too, have been scouring the internet trying to find information on this disease. I too noticed that there was no readily available support group out there, so I started one. You are all welcome to join. Here is the link: http://health.groups.yahoo.com/group/UterineMMMT/ You will need a Yahoo ID (which is free) and you will need to request membership, which I of course, will give you (I don't check everyday, so if there is a delay, just be patient). I have the board 'protected' for membership to protect everyone's privacy. In any case, the group is very small, but there is some really good information and articles there. There are some patients and some, like me, who are patient advocates. Good luck and God bless you all!! Kehoops Wed, 08 Jun 2005 00:00:00 GMT My son passed away two years ago from this type of cancer. He was sixteen. He started with blood in his urine, and this went on for some time. He eventually had a ct scan followed by a biopsy a couple of months later. All were reported normal. Several months later (almost a year) he started bleeding pretty bad. To make a long story short the test all showed abnormalities that were overlooked. By the time I found a doctor that could help it was to late. The tumor was huge and there was a major spill over during surgery, he passed seven weeks later. He had a uterus that was found during the last few weeks of his life that showed up in the beginning but the doctors did not do their job. I was told two years ago that chemo would not help at any stage. Has this changed, are there any new TX. Would love to here from anyone that is surviving this monster. My heart and prayers go out to each and every one of you. I have not even been able to look at his picture as of yet, the pain is too great. Lojo2 Thu, 28 Jul 2005 00:00:00 GMT My mother just had a hysterectomy for Mullerian Cancer, and found that it had spread. It wasn't in the liver or any lymph nodes yet but the doctor says she only has ten percent chance of pulling through. We live in Tulsa, and are taking her to Cancer Treatment Centers of America later this week, but he says it sometimes doesn't respond to chemo. Please help if anyone has any information for me. Thanks, Kim Kimkay Sun, 14 Aug 2005 00:00:00 GMT Hello and my deepest sympathies My mother who was and will always be my best friend, passed away on April 26, 2005 two days before she was to turn 66. I really miss her and think of her daily, still confused. My mom had a hysterectomy, doctors told us that all cancer was gone meaning they got it all but several months later had to go radiation she still didn't feel just right. She was having neck pain doctors told her it was pinched nerves and muscle spasms come to find out later it was metastatic quadriplegia that left her paralyzed from the neck down. My mom before all of this she was very active and loved to go for walks. March 2005 was last time I ever seen her walk I hope she is in heaven walking with the angels What is mixed mullerian malignancy and what part of the female body does it affect, and what are the causes of this? If you can, please answer my question I would be so appreciative of this I need some closure. Thank you very much, mrsrsmith Badmamajama Sun, 21 Aug 2005 00:00:00 GMT Hi I am so sorry to hear about your mom. My mom passed away as well June 26, 2005 Due to the same cancer. She had Neropathy for 3 years and was getting treatments for that but she had lost all feeling in her hands and legs but still could use them a little. Last September she was digonoised with stage 3c Mixed Mullerian and she had hysterectomy and received chemo for 8 mths. Her levels were down to 69. Then went up to 785 in a matter of 3 weeks. She was starting a new chemo and got a kidney infection and had to go in the hospitle for an iv drip to clear in up She was not even able to walk the last few weeks when se was in the hospitle she had a stroke and passed away just weeks before her 66th birthday. It is so hard I miss her so much she is my best friend. I have to young boys at home that ask for her everyday. She is now in heaven dancing with my sister and many other angles it is just so hard. Just try and stay strong it is so hard Joann Jog911 Tue, 23 Aug 2005 00:00:00 GMT My mom was just diagnosed with the same thing. Had the hysterectomy and is now undergoing radiation. Her doctor said that Chemo has not proven to be affective with this type of cancer. Radiation was the only option for my mom. Check into that if you can! Rtcisin Wed, 28 Sep 2005 00:00:00 GMT Pat, Hello, my name is Kim, and my mom was recently diagnosed with this same cancer. There is a support group on yahoo with several members with this same cancer. It is a very good group, and there are lots of post that will be helpful to you.http://groups.yahoo.com/group/UterineMMMT/ Kim --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- Kimkay Wed, 28 Sep 2005 00:00:00 GMT I work for the R.A. Bloch Cancer Foundation. A woman has called us to talk with a survivor of mixed mullarian cancer of the ovaries. There's next to no good information out there on this, and the woman in question doesn't use the Internet. If someone has information they can share, please email 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 ---. Thanks Mamarosie Wed, 05 Oct 2005 00:00:00 GMT Hi I know how awful this disease is as I too lost my mum at the age of 66 in Feb 2004. I felt completely distraught as my mum underwent a hystorectomy for what we thought was just a polyp and all of a sudden she was diagnosed with stage 3a mmt of the uterus. She was diagnosed in June 2003 she had radiotherapy but died in feb. 2004. My mum went downhill very quickly she was sort of Ok until the last 3 weeks of her life when she deteriorated so very quickly going from being able to walk to being unable to walk in the space of 2 weeks or so. I recieved no support from the hospital or doctors - i dont think they could understand the speed with which she became so very ill. I didnt understand it myself - still dont really. Seeing as she was only supposed to have had a nodule at the top of the vagina after the op. (and positive washings)Information was very hard to find until I stumbled upon this site. Nilejo Fri, 13 Jan 2006 00:00:00 GMT Dear Kim, I hope your mom was able to receive chemotherapy? I have not seen if you've posted since this date in August. I just found your notice and wanted to give you some help. Sept. 03 I was diagnoised with malignant mixed mullerian tumors starting in the ovary which is supposed to be pretty rare (2%) I received major surgical debulking and then 6 sessions of chemo with Carbo/Taxol and have been clear since 8/05 - now we are trying to determine if some nodules in my lungs might be mets of this cancer. Sending up prayers to you and your mom. I hope you were able to find someone to give her more hope and treatment. Sincerely, Joan Marie Joan S. Sun, 15 Jan 2006 00:00:00 GMT I have been to yahoo and have requested membership but have yet to hear a thing and its been almost 2 weeks.My mom was diagnosed with this form of tumor..not much on the internet not that is recent...please someone help uot, she is undergoing radiation, had a completewr hysterectomy, stage III, tumor size was 10cm, lymph note were clean, hadnt gone through the wall, and some cancer cells found in cervix...info badly wanted Thanks Ctiket Wed, 22 Mar 2006 00:00:00 GMT My dear friend has just been diagnosed with stage 4 MMMT. This morning she starts chemotherapy. Because she has tumours in her liver and fluid in the plural lining of her lungs, the doctors think the cancer has progressed too far to operate now. Has anyone looked into alternative therapies for this cancer? I have applied for membership to the MMMT group, but haven't heard back from Kathy yet. Since there have been so few recent postings, is this group still functioning? Cfmacd Fri, 05 Jan 2007 00:00:00 GMT I,  too, have been dx. with the same rare cancer.  How are you doing? My tx has been surgery followed by taxetere and carboplatin and about 15 mos. later taxol and carboplatin. Jo Joanie b Mon, 21 May 2007 00:00:00 GMT I have the same dx.  How are you doing?  Jo Joanie b Mon, 21 May 2007 00:00:00 GMT Hello all,Thanks for your contributions.  I have been diagnosed with uterine cancer, MMMT as well and will be having surgery on July 3rd.  I am unaware of my staging at this time but hope it is a very localized tumor.  I am 50 and in relatively good health.  Hope to have more to add after I find out more information.  Any suggestions are appreciated.Best of luck to all, D' My Doc says they will not consider chemo or radiation until after the intitial surgery. Dinmaryland Sat, 23 Jun 2007 00:00:00 GMT