Are there any other MMMT survivors out there?

1975goatgirl
1975goatgirl Member Posts: 1
edited March 2014 in Uterine Cancer #1
I am a 34 yr old woman who was diagnosed with stage 4B uterine MMMT. Mine had metastasized to my omentum, colon, appendix and most of my pelvic and abdominal lymph nodes. I am 3.5 years in remission. I would love to hear from other survivors. I know this is a very uncommon cancer in relation to most uterine cancers. I've never talked to anyone else with it.

My email is [email protected]

Thank you,

Carrie
«13456719

Comments

  • Songflower
    Songflower Member Posts: 608
    Your Search
    Could you spell out MMMT. I don't think most of usknow what that means.

    Diane
  • thank you
    thank you Member Posts: 77

    Your Search
    Could you spell out MMMT. I don't think most of usknow what that means.

    Diane

    same age
    Just checked on the internet, it is: Malignant Mixed Mullerian tumor or carcinosarcoma. I decided to post here when I noticed your age - I am 34 years old. My mom is diagnosed with uterine cancer - endometrial, and I come to this site to get advice from wonderful women.
    Also I posted to celebrate with you, 3.5years of remission, you are cured!!
    I wish you the best, even if you don't have an answer from somebody with the same type of cancer, you will get a lot of help in this site, or I think you will give a lot of help since you are a SURVIVOR!!!!!
  • cleo
    cleo Member Posts: 144
    thank you said:

    same age
    Just checked on the internet, it is: Malignant Mixed Mullerian tumor or carcinosarcoma. I decided to post here when I noticed your age - I am 34 years old. My mom is diagnosed with uterine cancer - endometrial, and I come to this site to get advice from wonderful women.
    Also I posted to celebrate with you, 3.5years of remission, you are cured!!
    I wish you the best, even if you don't have an answer from somebody with the same type of cancer, you will get a lot of help in this site, or I think you will give a lot of help since you are a SURVIVOR!!!!!

    Carcinosarcoma
    I also have the above. Two years well now. Am twice your age however!! Did you get other responses?
  • nomadic_spirit
    nomadic_spirit Member Posts: 1
    My sister was just diagnosed with MMMT...
    Hi Carrie,

    My sister was just diagnosed with stage 3B MMMT & she is 38 years old. The doctor said that the prognosis is not good, but then I read your story. Can you please tell me more about your story? I need to let my sister know that she can fight this and survive.

    Thank you.

    Deborah
  • jobeck52
    jobeck52 Member Posts: 1

    My sister was just diagnosed with MMMT...
    Hi Carrie,

    My sister was just diagnosed with stage 3B MMMT & she is 38 years old. The doctor said that the prognosis is not good, but then I read your story. Can you please tell me more about your story? I need to let my sister know that she can fight this and survive.

    Thank you.

    Deborah

    I was diagnosed in Nov.2007
    Hi,
    I was diagnosed in Nov. of 2007 with stage 3 MMMT. I went through surgery, chemo and radiation. I was told I had only a 20% change of it coming back. So far so good. I am 54 now. The doctor said if I went 3 years without a reoccurance it wouldn't come back. I have not met or talked with anyone else with this cancer. I have been afraid until now to even look at message boards about it. When I was first diagnosed I read very upsetting stuff on the internet. My doctor said a lot of the studies talked about were 10 years old and treatment has changed. Although she also said there wasn't much information about research and new findings out there. I hope your sister is getting all three types of treatment.

    Robin
  • sue K
    sue K Member Posts: 18
    jobeck52 said:

    I was diagnosed in Nov.2007
    Hi,
    I was diagnosed in Nov. of 2007 with stage 3 MMMT. I went through surgery, chemo and radiation. I was told I had only a 20% change of it coming back. So far so good. I am 54 now. The doctor said if I went 3 years without a reoccurance it wouldn't come back. I have not met or talked with anyone else with this cancer. I have been afraid until now to even look at message boards about it. When I was first diagnosed I read very upsetting stuff on the internet. My doctor said a lot of the studies talked about were 10 years old and treatment has changed. Although she also said there wasn't much information about research and new findings out there. I hope your sister is getting all three types of treatment.

    Robin

    MMMT
    Hi
    I was diagnosed with MMMT last May, and it is so good to 'meet' with others who have the same cancer. I had radical hysterectomy, followed by chemo and radiotherapy. I am doing OK but have a lot of pain, especially in my back and in my legs. I meet with my oncologist tomorrow for results of scans, and am hoping for positive results.
    By the way, I realise that this is an American website, but it is the only one that I've found with a forum dealing with issues that relate to me. I am in Scotland, but the cancer is the same!
    good luck to you all
    sue
  • cleo
    cleo Member Posts: 144
    sue K said:

    MMMT
    Hi
    I was diagnosed with MMMT last May, and it is so good to 'meet' with others who have the same cancer. I had radical hysterectomy, followed by chemo and radiotherapy. I am doing OK but have a lot of pain, especially in my back and in my legs. I meet with my oncologist tomorrow for results of scans, and am hoping for positive results.
    By the way, I realise that this is an American website, but it is the only one that I've found with a forum dealing with issues that relate to me. I am in Scotland, but the cancer is the same!
    good luck to you all
    sue

    MMMT
    Sue...I have to second your comment. I am in NZ and have gained a lot of knowledge and common sense from this site. I did not bother with the internet after the initial look as if this is so rare...little or no research done....how do they come up with data?? From negatives only - not the positives like ourselves. Diagnosed Stage 4 in August 2007 my scans have been unchanged and I intend to stay that way. Neuropathy can result from the radiotherapy and is painful. Celia
  • monik_lisett
    monik_lisett Member Posts: 8
    Congratulations, its so good
    Congratulations, its so good to hear you beat this monster..I am personally very scared for my mom. She was recently diagnosed with MMMT the end of March 2010 and 2 weeks ago had a complete hysterectomy. On saturday we spoke to her doctor and all the pathology reports came back clear of any cancer spread, the tumor was confined to the uterus. Doctor mentioned having treatment such as radiation/chemo for prevention..So we were all so excited to hear the great news... But now I'm so scared of recurrence since this cancer is very aggressive. I read some stories last night of Stage1 recurrence and it really scared me. I'm so glad to hear although yours had metastasized you were still able to beat it..
    -Monique
  • Wonderland
    Wonderland Member Posts: 2
    sue K said:

    MMMT
    Hi
    I was diagnosed with MMMT last May, and it is so good to 'meet' with others who have the same cancer. I had radical hysterectomy, followed by chemo and radiotherapy. I am doing OK but have a lot of pain, especially in my back and in my legs. I meet with my oncologist tomorrow for results of scans, and am hoping for positive results.
    By the way, I realise that this is an American website, but it is the only one that I've found with a forum dealing with issues that relate to me. I am in Scotland, but the cancer is the same!
    good luck to you all
    sue

    MMT [Uterine Carcinosarcoma]
    HI
    I was diagnosed in August of 2009. Underwent a complete hysterectomy, 3 cycles of chemo [Taxol and Carboplatin], [Sep/Oct]; external radiation [Nov- Dec] for 25 days; internal radiation for 3 days [Dec]. I had a pre-chemo appointment in January to begin the last 3 cycles of chemo, the docs discovered that the cancer had recurred and actually spread to one of my lungs. I was told at the start that this is a rare agressive type of cancer and that it would probably recur. I just did not think it would be so quickly, even before treatment was finished. Needeless to say, my prognosis went from poor to very bad.

    In January I started a new chemo protocol of Ifosfamide and Taxol. After the first 3 treatments the tumor had shrunk by 2/3. I have one more treatment left and then another CT scan. Has anyone else been treated with Ifosfamide?
  • nempark
    nempark Member Posts: 681
    e-mail
    I sent you an e-mail. Hope you are well. I am anxiously awaiting your reply. June
  • nempark
    nempark Member Posts: 681
    cleo said:

    MMMT
    Sue...I have to second your comment. I am in NZ and have gained a lot of knowledge and common sense from this site. I did not bother with the internet after the initial look as if this is so rare...little or no research done....how do they come up with data?? From negatives only - not the positives like ourselves. Diagnosed Stage 4 in August 2007 my scans have been unchanged and I intend to stay that way. Neuropathy can result from the radiotherapy and is painful. Celia

    Celia in NZ
    I would love to have an update on your progress. I did do some research Wow!!!!! Can they be more negative. From August 2007 to now is a long time. You are cured. Please post. I was stage 1a and is now six months in remission and like all the fine ladies on this site we will remain in remission for ever. Love June
  • praying4u
    praying4u Member Posts: 1
    nempark said:

    e-mail
    I sent you an e-mail. Hope you are well. I am anxiously awaiting your reply. June

    Grandmom just diagnosed
    My grandmom was just diagnosed today with this rare cancer. We just lost my granddad 2 1/2 months ago and still recovering from that. I was so happy to find this site where people have positive stories. Remaining prayerful!
  • nempark
    nempark Member Posts: 681

    Congratulations, its so good
    Congratulations, its so good to hear you beat this monster..I am personally very scared for my mom. She was recently diagnosed with MMMT the end of March 2010 and 2 weeks ago had a complete hysterectomy. On saturday we spoke to her doctor and all the pathology reports came back clear of any cancer spread, the tumor was confined to the uterus. Doctor mentioned having treatment such as radiation/chemo for prevention..So we were all so excited to hear the great news... But now I'm so scared of recurrence since this cancer is very aggressive. I read some stories last night of Stage1 recurrence and it really scared me. I'm so glad to hear although yours had metastasized you were still able to beat it..
    -Monique

    Same as your mom-Monique
    Hi Monique: I was diagnosed in October 2009. Stage 1a in the endometrium. Total hysto, omentom, lymph nodes and the works. I went to the doc on Tuesday and its only then I found out that it was MMMT, then foolishly went home and did some research. I was scared to death. But it is comforting to know that Carrie managed to beat a stage 3 for 3-1/2 years. So can your mom and me. Don't be afraid. It's part of life's circle and life goes on. Be well and please keep us informed about mom's progress. I send you and mom lots of comfort. June.
  • nempark
    nempark Member Posts: 681
    praying4u said:

    Grandmom just diagnosed
    My grandmom was just diagnosed today with this rare cancer. We just lost my granddad 2 1/2 months ago and still recovering from that. I was so happy to find this site where people have positive stories. Remaining prayerful!

    Praying 4u--
    Hi: How old is grandma? So sorry about grandpa. How is grandma taking that loss. Keep an eye on her she might be really missing him. Please let us know what treatment she will be taking and what stage she is. My prayers go out to you and the family. June
  • nempark
    nempark Member Posts: 681
    sue K said:

    MMMT
    Hi
    I was diagnosed with MMMT last May, and it is so good to 'meet' with others who have the same cancer. I had radical hysterectomy, followed by chemo and radiotherapy. I am doing OK but have a lot of pain, especially in my back and in my legs. I meet with my oncologist tomorrow for results of scans, and am hoping for positive results.
    By the way, I realise that this is an American website, but it is the only one that I've found with a forum dealing with issues that relate to me. I am in Scotland, but the cancer is the same!
    good luck to you all
    sue

    Sue------MMMT
    Hi Sue: I am six months post op and in remission. Its only this week I found out that the cancer was MMMt. I think the leg and back pain is normal, I also had those symptoms but they are now going away three months after conclusion of chemo. It is an American website and you will find lots of love and really good comforting thoughts. It is through this website that I have learned to ask doctors pertinent questions. I hope the treatment over there in Scotland is as good as here in the USA. Please give us an update on how you are doing. Love and best wishes. June.
  • nempark
    nempark Member Posts: 681

    MMT [Uterine Carcinosarcoma]
    HI
    I was diagnosed in August of 2009. Underwent a complete hysterectomy, 3 cycles of chemo [Taxol and Carboplatin], [Sep/Oct]; external radiation [Nov- Dec] for 25 days; internal radiation for 3 days [Dec]. I had a pre-chemo appointment in January to begin the last 3 cycles of chemo, the docs discovered that the cancer had recurred and actually spread to one of my lungs. I was told at the start that this is a rare agressive type of cancer and that it would probably recur. I just did not think it would be so quickly, even before treatment was finished. Needeless to say, my prognosis went from poor to very bad.

    In January I started a new chemo protocol of Ifosfamide and Taxol. After the first 3 treatments the tumor had shrunk by 2/3. I have one more treatment left and then another CT scan. Has anyone else been treated with Ifosfamide?

    How are you WONDERLAND
    Hi Wonderland: Please give us an update on your progress. I was diagnosed around the same time as you. 6 sessions of carbo/taxol no radiation. I was a stage 1A. This is a rare cancer and very aggressive. But medicine is great now and we can all beat this monster. Looking forward to your post. Be well!!! June
    T
  • nempark
    nempark Member Posts: 681
    jobeck52 said:

    I was diagnosed in Nov.2007
    Hi,
    I was diagnosed in Nov. of 2007 with stage 3 MMMT. I went through surgery, chemo and radiation. I was told I had only a 20% change of it coming back. So far so good. I am 54 now. The doctor said if I went 3 years without a reoccurance it wouldn't come back. I have not met or talked with anyone else with this cancer. I have been afraid until now to even look at message boards about it. When I was first diagnosed I read very upsetting stuff on the internet. My doctor said a lot of the studies talked about were 10 years old and treatment has changed. Although she also said there wasn't much information about research and new findings out there. I hope your sister is getting all three types of treatment.

    Robin

    ROBIN
    Robin, you are cured, its almost three years. I am 60 and scared to death with this rare cancer. Good the studies are really old and so many people have survived this. We here will all have the same good fortune. I send you good wishes. Please keep in touch. Is there any advice you can give me in terms of diet or herbs? I would greatly appreciate.
  • nempark
    nempark Member Posts: 681
    Carrie I am waiting to hear from you
    Please let us know how you are doing. June
  • nempark
    nempark Member Posts: 681

    My sister was just diagnosed with MMMT...
    Hi Carrie,

    My sister was just diagnosed with stage 3B MMMT & she is 38 years old. The doctor said that the prognosis is not good, but then I read your story. Can you please tell me more about your story? I need to let my sister know that she can fight this and survive.

    Thank you.

    Deborah

    FOR DEBORAH
    Hi Deborah: It is now eight months since my surgery. Stage 1a. I had complete Hyst. and six sessions of carbo/tax. only in June that I found out that it was MMMT. I read your post about your sister and I am really wondering how she is doing. I have also read these other posts and responded to them but no one had replied to me. I e-mailed Carrie and also wrote to her on the site but still no answer. I would greatly appreciate it if you can give me some information on your sister's progress and some tips. Be well June
  • sue K
    sue K Member Posts: 18
    nempark said:

    Sue------MMMT
    Hi Sue: I am six months post op and in remission. Its only this week I found out that the cancer was MMMt. I think the leg and back pain is normal, I also had those symptoms but they are now going away three months after conclusion of chemo. It is an American website and you will find lots of love and really good comforting thoughts. It is through this website that I have learned to ask doctors pertinent questions. I hope the treatment over there in Scotland is as good as here in the USA. Please give us an update on how you are doing. Love and best wishes. June.

    mmmt
    Hi June
    There are 2 threads with the similar discussions on MMMT. I did reply to you on the other page- I don't want you to think that I had ignored you!
    I am doing ok. I am free of the cancer for now, and am so very thankful for that. I am still having a lot of pains - all similar to fibromyalgia my doc says - so I keep taking the pills and am glad to be alive.
    My treatment here in Scotland has been wonderful, but no-one is very knowledgeable about MMMT.
    I hope you are getting on ok. This is a wonderful website, and I am so thankful to have found it. It's such a comfort to hear from others in similar situations, even though you are so far away.
    Love, and God bless you,
    Sue