CancerCompass message board discussion started by Scoobylover on 11/9/2006 http://www.cancercompass.com/message-board/message/all,7701,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi just wondered if there is anyone out there who has or knows of anyone who has a mixed mullerian tumour? my mother has just lost a 2/half year battle to this. I would love to hear from anyone who knows anything about this kind of cancer. thankyou. Scoobylover Thu, 09 Nov 2006 00:00:00 GMT I was diagnosed with a MMT (uterine) in June. I've had surgery, followed by external beam and HDR brachytherapy. Right now I am feeling physically fine, but having trouble with anxiety. I know that this is a particularly aggressive cancer, and that it is so rare that there is pathetically little research available. I have entered into the "vigilant" stage of my battle, and am starting on a nutritional plan to hopefully arm my immune system to identify and destroy any lingering cells. I was sorry to hear that your mother lost her battle, but would be glad to make contact with others who are still in the fight. I think we can be good support for each other. Snowqueen Sat, 25 Nov 2006 00:00:00 GMT Hi snowqueen, thanks for the reply,i'm sorry about your story and never really know what to say? my mum was 72 when she first got diagnosed and as you can imagine we were so shocked! we always joked that she couldn't get a normal cancer OH NO she had to get a rare one!!!!initially she had a 2and a half lb tumour removed from her ovary aswell as the ovaries. she was an incredibly brave lady who would take whatever treatment was available, i know the first lot of treatment she had was the carboplatin which was good cos she didn't lose her hair but it seemed to mess all her bloods up. over the years she had all number of treatments and always had a smile,i'm now worried that maybe me or one of my 2 sisaers will get it? anyway snowqueen it was lovely to hear from you and if there is anything you need to know or that i may be able to help you with dont hesitate to ask. x forgot to ask if your from uk? i am. bye for now speak soon. Scoobylover Wed, 29 Nov 2006 00:00:00 GMT Thanks for your reply. Your Mum sounds like she was incredibly brave woman! I just hope I can be as brave in my battle! As far as I know, and I've tried to do lots of research, there is no genetic link with this cancer. And, no I'm not from the UK...I live in sunny Colorado! Snowqueen Thu, 30 Nov 2006 00:00:00 GMT Hi snowqueen, thanks for the lovely message im sure you will manage well and it seems like you are well clued up on this illness, my mother got through it by having a positive attidude and a smile for all. I'm still scared that i could get this illness but if i did there would be nothing i could do about it would there? My oldest sister is going in hospital on the 26th january 07 to have a full hysterectomy as she is 45 and has 2 grown up girls so she asked the specialist who initially dealt with mum if he would remove it all as she only went in to see about having her remaining ovary out, this is due to her having an ectopic pregnancy 8 years ago.she cant seem to get her head around the fact that mum deteriorated within the space of 2 hours and wants some serious answers from the ward which she was on. Wish i was in sunny colorado!!! take care of yourself and i hope everything goes well for you. xxx sue. Scoobylover Sat, 02 Dec 2006 00:00:00 GMT My friend just completed surgery, chemo and radiation for MMMT.  There is an email support list specific to MMMT (and carcinosarcoma and other mixed sarcfoma-based gyn tumors.  See http://health.groups.yahoo.com/group/UterineMMMT/ . Trishpm Tue, 26 Dec 2006 00:00:00 GMT Hi, I'm so sorry to hear about your mother. She does sound like a fighter, much like my mother. My Mom was diagnosed with ovarian cancer in June 06', received chemo, a full hystorectomy, and another set of chemo both through IV & a port placed in her abdominal area. She was really sick after her last chemo treatment & was admitted to the hospital for her white blood cells being so low. She spent 3 1/2 weeks in the hospital for them to diagnose her with mmmt. My mother is only 42 years old (i'm 23) and it really doens make a whole lot of sense. She has the asides in her stomach which before the fluid contained cancer cells & now it does not & her CA125 is low. I'm just not sure how this all adds up. She is going to Birmingham, AL for a second opinion on Monday. Right now she is so frail, but fighting so very hard. Any information on this terrible disease would be greatly appreciated & support is wonderful too! Thanks!  Glamaris Thu, 04 Jan 2007 00:00:00 GMT Hi, in a couple of months I celebrate my sixth anniversary ... I was 48 when first diagnosed .. I was lucky because at the time we lived in France .. I can't praise the medical services highly enough for what they did for me . but it wa s hard and your mother is going to need all the support you can give her.Believe me it makes a difference.  If I can be of any help please write to me. Mchoc Sat, 27 Jan 2007 00:00:00 GMT  On 1/27/2007 Mchoc wrote:Hi, in a couple of months I celebrate my sixth anniversary ... I was 48 when first diagnosed .. I was lucky because at the time we lived in France .. I can't praise the medical services highly enough for what they did for me . but it wa s hard and your mother is going to need all the support you can give her.Believe me it makes a difference.  If I can be of any help please write to me. Hi, Researching on MMMT of uterus, I came across these messages.As u know all the help that we can get can be important.My mom was diagnosed with MMMT stage1B in march 2006, had a complete hesytectomy, unfortunately no radiation.result of which is metastasized lesion L3, suregry took that out, but another one has now been found in L1,doc. is saying go for radiation first and chemo latter. What I want to know which one should be done first.with this type of cancer, we want to do everything for her.Its depressing. Please help Shhzd Sun, 04 Mar 2007 00:00:00 GMT My sister who is 49 years old, has just been diagnosed with MMMT.  I am trying to gather information from others who has been through this or know of someone that has.  As all know, when you first hear of this your mind reels and you panic trying to get as much knowledge as possible.   My sister had a hysterectomy and biopsy of the lymph nodes in the pelvic area.  Unfortunately, the tumor has spread into the cervix and attached to the bladder.  The lymph nodes also have mets.  The dr has suggested chemo first followed by radiation if needed.  She has other health problems that complicate radiation therapy.   I know no one can tell me what to expect as every case is different.  However, I would like to know how other cases have went and turned out.  Good or bad.  Having someone else to talk to that has been there will help tremendously.  Thanks Little Sis v Mon, 19 Mar 2007 00:00:00 GMT Hello,You are right this type of cancer is rare and aggressive. And quite scary.There is a support group for this type of cancer that is quite helpful, and provides information. There are members who have the same case or one of ther loved ones, and they have all quite helpful.Just email to the group below.UterineMMMT@yahoogroups.comI guess important is the diet that we follow. I am trying to do the same for my mom. Her recurrance was local, so she is currently undergoing radiation. We all hope for the best.God Bless On 3/19/2007 Little Sis v wrote:My sister who is 49 years old, has just been diagnosed with MMMT.  I am trying to gather information from others who has been through this or know of someone that has.  As all know, when you first hear of this your mind reels and you panic trying to get as much knowledge as possible.   My sister had a hysterectomy and biopsy of the lymph nodes in the pelvic area.  Unfortunately, the tumor has spread into the cervix and attached to the bladder.  The lymph nodes also have mets.  The dr has suggested chemo first followed by radiation if needed.  She has other health problems that complicate radiation therapy.   I know no one can tell me what to expect as every case is different.  However, I would like to know how other cases have went and turned out.  Good or bad.  Having someone else to talk to that has been there will help tremendously.  Thanks   Shhzd Tue, 20 Mar 2007 00:00:00 GMT  On 11/25/2006 Snowqueen wrote:I was diagnosed with a MMT (uterine) in June. I've had surgery, followed by external beam and HDR brachytherapy. Right now I am feeling physically fine, but having trouble with anxiety. I know that this is a particularly aggressive cancer, and that it is so rare that there is pathetically little research available. I have entered into the "vigilant" stage of my battle, and am starting on a nutritional plan to hopefully arm my immune system to identify and destroy any lingering cells. I was sorry to hear that your mother lost her battle, but would be glad to make contact with others who are still in the fight. I think we can be good support for each other.I'm a 40 yr. old son. my Mom was just diagnosed w/ "MMMT",i'm scared senseless and want any input that could ease my tensions.She is 66 yrs. old,and a waitress 5 days a week seems as strong as an ox ,today going to oncologist w /her no one else in family up to it. Quakyone Wed, 11 Apr 2007 00:00:00 GMT  On 11/29/2006 Scoobylover wrote:Hi snowqueen, thanks for the reply,i'm sorry about your story and never really know what to say? my mum was 72 when she first got diagnosed and as you can imagine we were so shocked! we always joked that she couldn't get a normal cancer OH NO she had to get a rare one!!!!initially she had a 2and a half lb tumour removed from her ovary aswell as the ovaries. she was an incredibly brave lady who would take whatever treatment was available, i know the first lot of treatment she had was the carboplatin which was good cos she didn't lose her hair but it seemed to mess all her bloods up. over the years she had all number of treatments and always had a smile,i'm now worried that maybe me or one of my 2 sisaers will get it? anyway snowqueen it was lovely to hear from you and if there is anything you need to know or that i may be able to help you with dont hesitate to ask. x forgot to ask if your from uk? i am. bye for now speak soon.I'm 40 yr.old son,and scared let me know of any special things to help my 66 yr old mother thru this,(meds.,treatments,practices,clinics,or anywords of encouragement wouldn't hurt. ty,& god bless --- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----    Quakyone Wed, 11 Apr 2007 00:00:00 GMT my mom goes in for full hysterectomy,4/24/07&  chemo's to follow (mmmt "sarcoma" ,we had appt. w/ oncologist today read her ct,pet ,x ray. he says  he has removed as many as 14 lymph nodes from a patient she is 6 yrs. & going well w/ her.hope he can do same & more for my Mom of course ,may you all get the treatment you need.Cuz' she's on medi care.But ,A real good Dr.is gonna do her right,we think.God Bless ,& best wishes Quakyone Wed, 18 Apr 2007 00:00:00 GMT I lost my dear sweet mother 2 weeks ago to this monsterous disease. She fought a valiant fight, almost 4 years from first diagnosis. After the hysterectomy, it reappeared in her right lung 2 years later. After removal of the lung, it spread 18 months later to her vaginal walls. Surgery was not an option, and radiation and 2 rounds of chemo just made it worse. Her doctors admitted they just didn't know how to treat MMMT. Her final days were spent in a wonderful hospice care center. I have no doubt where she is right now, and every tear I shed is for me. I miss her. I'm going through the "anger" stage now. I'm trying to get more info on heredity factors. I had a hysterectomy due to large benign fibroid mass 8 years ago, but fear for my two daughters and my sister. Debbie GA Wed, 29 Aug 2007 00:00:00 GMT