Are there any other MMMT survivors out there?

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  • Editgrl
    Editgrl Member Posts: 903 Member
    #242
    ab57 said:

    treatment

    i was just diagnosed with carcinosarcoma after less than a month of symptoms. everything has happened so fast.in 2006 i had stage 3 colon cancer and went through radiation and chemo with good results until now. i am scheduled to see specialist on monday to figure out how to progress. i really dont want to use chemo again. anybody out there not get it? they said theyll have to stage it with surgery and will do a total hysterectomy and part of omentum. i am pretty scared.

     

    Hi, ab57.

    Welcome to the board. I am sorry for your diagnosis. I too have carcinosarcoma, Stage IIIc.  I was very scared when I came here in June after surfing the net.  The women here are great sources of infomation and support which I desperately needed when I found this board.

    I do echo Cindi here. There is a lot of good info on this thread, but it's not so great for new postings.  You might want to start a whole new thread. I do believe that some of the women here have opted not to do chemo, and they may chime in.  

    Yes, they will stage it after surgery. A lot of your treatment plan will depend on the staging, i.e., how far it has penetrated into the uterine wall, whether the lymph nodes, ovaries, etc. are involved, etc.  It's hard, but take a deep breath.  If you've been on the internet doing research, please know that a lot of the information out there is dated. There are a number of long-term survivors here and over on the yahoo board, which you also might want to check out.

    https://groups.yahoo.com/neo/groups/UterineMMMT/info

    Chris

     

     

     

  • debrajo
    debrajo Member Posts: 1,095 Member
    #243
    ab57 said:

    treatment

    i was just diagnosed with carcinosarcoma after less than a month of symptoms. everything has happened so fast.in 2006 i had stage 3 colon cancer and went through radiation and chemo with good results until now. i am scheduled to see specialist on monday to figure out how to progress. i really dont want to use chemo again. anybody out there not get it? they said theyll have to stage it with surgery and will do a total hysterectomy and part of omentum. i am pretty scared.

     

    MMMT

    Besides starting a new thread, you might want to priviate email Txtrisha55  She has MMMT and clear cell.  She visits with us, but is not on daily.  Wishing you a good journey.  Best, Debra(Jo) 

  • want_to_survive
    want_to_survive Member Posts: 8
    #244
    mmmt stage 3c looking for hope

    My mum 51 years of age diagnosed with uterine mmmt stage 3c. Got her debulking done 5 weeks back and doctors have planned 6 cycles of chemo of carbo taxol with no radiation. She got her first chemo done yesterday and we are very scared about the side effects. Can anyone share their stories of survival please?

  • want_to_survive
    want_to_survive Member Posts: 8
    #245
    Editgrl said:

    Welcome, Want_to_survive

    I am sure some of the other long term survivors of MMMT or carcinosarcoma will be along shortly but there are several on this board and also on the yahoo MMMT board.  If you go back in this thread, you will see the names of several who have survived 5 years or longer. If you have been researching on the internet, I know it is very scary and depressing (been there, done that), but much of the information is outdated.  I am also stage 3c, though mine was endometrial, and I am early in the process, having just had a hysterectomy in July and currently undergoing chemo.

    The women on this board are a great source of information and support.  It's a good place to ask questions, vent, compare notes.  We are all here for you and your mom and nothing is off-limits.  

    Chris

    Hi chris hope you are doing

    Hi chris hope you are doing well thanks for replying. I hope we all can beat this disease wishing you best of health

  • Editgrl
    Editgrl Member Posts: 903 Member
    #246
    want_to_survive said:

    mmmt stage 3c looking for hope

    My mum 51 years of age diagnosed with uterine mmmt stage 3c. Got her debulking done 5 weeks back and doctors have planned 6 cycles of chemo of carbo taxol with no radiation. She got her first chemo done yesterday and we are very scared about the side effects. Can anyone share their stories of survival please?

    Side effects vary

    There is a thread titled  "Ladies Going through Chemo" that can give you some idea of the side effects women currently in treatment are dealing with. I will tell you that in my case, day 3 and 4 after chemo seem to be the days that it hits me the hardest, mostly with fatigue.  The anti-nausea drugs I am taking are working very well, with just a bit of queasiness the night of day 3 this last go round.  I have completed 2 of 6 cycles of carbo/taxol so far and with the exception of pretty nasty constipation (which I jumped on earlier the second go-round), the side effects have been minimal. However, everyone reacts differently.

    Your mom is lucky to have you looking out for her.  Keep hope in your hearts and minds.  There ARE long-term survivors here.

    Chris

  • apoohneicie
    apoohneicie Member Posts: 6
    #247
    MMMT

    I had stage IV MMMT of the uterus, did hard chemo for 2 years and Avastin for about a year and half, have been cancer free since June 9, 2011. There is hope. Love to every warrior and survivor.

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #248
    apoohneicie said:

    MMMT

    I had stage IV MMMT of the uterus, did hard chemo for 2 years and Avastin for about a year and half, have been cancer free since June 9, 2011. There is hope. Love to every warrior and survivor.

    I just read your "About Me"

    You truly are a survivor!!  Thank heavens you found a doctor you could trust and who took you seriously.  I was recently diagnosed with UPSC, Stage 2 but almost didn't get the treatment I deserved.  The first doctor I went to pooh-poohed my concerns and told me to lose weight and come back in three months.  I switched doctors and she took me seriously and sent me to a gynecoogist who did the biopsy.  She then sent me to the gyno-oncologist who did the total hysterectomy.  My CT scan was clean and I started chemo last Tuesday.

    There are so many encouraging stories on this forum.  Please keep us updated on your NED!!

     

    Take care,

    Eldri

  • annehp
    annehp Member Posts: 1
    #249
    I flagged this by mistake.

    I flagged this by mistake. Wanted to respond To her post. I am so sorry.  I am mmmt diagnosed recently. Controversy over stage. Either 1a or 3b.  Big difference. 

  • Editgrl
    Editgrl Member Posts: 903 Member
    #250
    annehp said:

    I flagged this by mistake.

    I flagged this by mistake. Wanted to respond To her post. I am so sorry.  I am mmmt diagnosed recently. Controversy over stage. Either 1a or 3b.  Big difference. 

    Hi, Anne

    Welcome to this board.  I am sorry about your diagnosis, but glad you have found us.  The first days while everything is being sorted out are so hard and confusing.  Have you had a hysterectomy yet?  The staging is usually done after surgery.  Are they not sure the cancer has spread?

    Chris

  • namedropper
    namedropper Member Posts: 102 Member
    #251
    Editgrl said:

    Hi, Anne

    Welcome to this board.  I am sorry about your diagnosis, but glad you have found us.  The first days while everything is being sorted out are so hard and confusing.  Have you had a hysterectomy yet?  The staging is usually done after surgery.  Are they not sure the cancer has spread?

    Chris

    MMMT survivor

    I am 1 year NED stage 2 grade 3 MMMT uterine cancer. I guess that makes me a survivor.

     

  • ghee56
    ghee56 Member Posts: 4
    #252
    Mmmt

    I am 11 years out from mmmt surgery. Thankful for every day!

  • Ilda28
    Ilda28 Member Posts: 8
    #253
    apoohneicie said:

    MMMT

    I had stage IV MMMT of the uterus, did hard chemo for 2 years and Avastin for about a year and half, have been cancer free since June 9, 2011. There is hope. Love to every warrior and survivor.

    how do you feel now?

  • Ilda28
    Ilda28 Member Posts: 8
    #254
    ghee56 said:

    Mmmt

    I am 11 years out from mmmt surgery. Thankful for every day!

    u only had surgery ?

  • Kerrey
    Kerrey Member Posts: 2
    #255
    MMMT Info

    Hello all. My mother has been diagnosed with MMMT clear cell ovarian cancer. She is 53 (52 at time of diagnosis). We are searching for any available information, resources, and to connect with others, as you know this is a very rare cancer with limited information out there. She was diagnosed in Feb. 2016 with stage III ovarian MMMT clear cell. She also tested positive for BRCA2, the gene mutation for ovarian and breast cancer. She just finished 18 weeks of chemo with taxol/carboplatin. At this point we are waiting for further testing to see where she stands and searching for other treatment options to fight this. Any information you have would be greatly appreciated as well as to hear your stories. I am going to get her signed up on here as well and would like to help connect her with others experiencing this battle. Thank you.

  • Kerrey
    Kerrey Member Posts: 2
    #256
    debrajo said:

    MMMT

    Besides starting a new thread, you might want to priviate email Txtrisha55  She has MMMT and clear cell.  She visits with us, but is not on daily.  Wishing you a good journey.  Best, Debra(Jo) 

    My mother has been diagnosed

    My mother has been diagnosed with MMMT clear cell. I know this post is old, and we are new to the site. If anyone could give us information or people who would like to connect it would be greatly appreciated. Thank you.

  • janaes
    janaes Member Posts: 799 Member
    edited September 2016 #257
    aochime said:

    Hello,
    My mom was diagnosed
    Hello,

    My mom was diagnosed with MMMT stage 3 and we are very scared and not really sure what to do. My sister told me to do some research and find other women in her age group that are beating this. I read your comments and if its possible, we would like to communicate with you. You can reach me at aochime@yahoo.com

    Thank you,

    Anthony

    Hi Anthony, I was diagnosed

    Hi Anthony, I was diagnosed with MMT stage 2 Grade 3 uterine cancer back in May 2016 after my hysterectomy.  There are other women on this board who have MMT as well.  Im not full of knowledge but know this is an agressive cancer, yet Ive read other story on this board of women who have beaten this cancer.  I hope others see your post too.  If they dont you can start a new thread and i would think that would help.  You can also type MMT in the title bar at the top and it will pull up alot of threads around this cancer.  I also liked to click on peoples names when i find they have MMT and it tell more about them.  There is a lot of info about this cancer.  I also found it helpful to read up on the different cancer websites like this one. (American Cancer Society).

    Janae

  • jinkies
    jinkies Member Posts: 8
    edited September 2016 #258
    want_to_survive said:

    mmmt stage 3c looking for hope

    My mum 51 years of age diagnosed with uterine mmmt stage 3c. Got her debulking done 5 weeks back and doctors have planned 6 cycles of chemo of carbo taxol with no radiation. She got her first chemo done yesterday and we are very scared about the side effects. Can anyone share their stories of survival please?

    MMMT Clear Cell Stage 3 Ovarian Cancer Also looking for hope

    How is your mother doing? I was diagnosed in February and had a cantelope sized ovarian tumor removed and 18 weeks of carboplatin/taxol. I started getting neuropathies and trouble with my nails last 2 weeks. I am wondering what I do now? My local oncologist just wants to order CT scans and wait because he only believes in chemo. I need some advice I feel lost!!!!

  • jinkies
    jinkies Member Posts: 8
    edited September 2016 #259
    janaes said:

    Hi Anthony, I was diagnosed

    Hi Anthony, I was diagnosed with MMT stage 2 Grade 3 uterine cancer back in May 2016 after my hysterectomy.  There are other women on this board who have MMT as well.  Im not full of knowledge but know this is an agressive cancer, yet Ive read other story on this board of women who have beaten this cancer.  I hope others see your post too.  If they dont you can start a new thread and i would think that would help.  You can also type MMT in the title bar at the top and it will pull up alot of threads around this cancer.  I also liked to click on peoples names when i find they have MMT and it tell more about them.  There is a lot of info about this cancer.  I also found it helpful to read up on the different cancer websites like this one. (American Cancer Society).

    Janae

    MMMT Clear Cell Stage 3C Ovarian Cancer

    Did you have chemo or any other treatments? I had a total hysterectomy but they did not remove lymph nodes in February 2016 and have completed 18 weeks of carbo/taxol. I cannot get my local oncolgist to prescribe anything but chemo and CTscans.

  • Editgrl
    Editgrl Member Posts: 903 Member
    edited September 2016 #260
    jinkies said:

    MMMT Clear Cell Stage 3C Ovarian Cancer

    Did you have chemo or any other treatments? I had a total hysterectomy but they did not remove lymph nodes in February 2016 and have completed 18 weeks of carbo/taxol. I cannot get my local oncolgist to prescribe anything but chemo and CTscans.

    jinkies

    Welcome to the board.   Sorry you had to find us, but I'm glad that you did. as there is a lot of information here.  

    Did your surgeon not remove any lymph nodes at all?  Have you had a post-treatment scan?  

    If you are not happy with your local oncologist, have you considered getting a second opinion?  If you don't already have them, it would be helpful to have all of the pathology and scan reports for your own records so that if you do seek a second opinion, you already have those things in hand.

    How you are feeling now?

    Also, you might consider starting a new thread.  This one has so many entries that it's tough to find and respond.

    Again, welcome.  There are several women on this board with carcinosarcoma/mmmt, some long-term survivors.  No reason you can't be one of them!

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    edited September 2016 #261
    Kerrey said:

    My mother has been diagnosed

    My mother has been diagnosed with MMMT clear cell. I know this post is old, and we are new to the site. If anyone could give us information or people who would like to connect it would be greatly appreciated. Thank you.

    I'm so sorry to hear about your mother's diagnosis

    Hi Kerrey, I'm so sorry to hear about your mother's diagnosis. I recall being in her shoes just last September. It is a very scary time but please know that you will have all the support that you need from us.

    Has she had surgery yet? Mine was a TAH-BSO with 14 lymph nodes excised. It took me about 4 weeks to get back to feeling normal and back to work (part-time, desk job).

    The stage and grade of her cancer tumor is very important to know. Mine was uterine carcinosarcoma (MMMT), stage 1b, grade 3. The information about the tumor will determine her treatment plan. My treatment was 6 rounds of chemo ( Ifex/Mesna/Taxol) with 28 external radiation treatments "sandwiched" between the 3rd and 4th rounds of chemo. I finished treatment in May and have had a clear scan showing no evidence of disease or "NED".

    Is her doctor a gyn-onc with experience treating MMMT? At this early stage, I recommend getting copies of all her pathology and surgery reports for her files. They will come in very handy to refer back to and if you decide to get a 2nd opinion.

    Also, she may want to consider taking a tape recorder to appointments or find out if her cell phone has an app to record them. There may be a lot of important information discussed and you don't want her to miss anything. I listened to my recordings again recently and realized that I had missed some very important things the dr. had said at the time.

    Please pass on my wishes of good luck to her (and to you). She can do this and we will be here to support you both! Wishing you both peace and strength, Kim

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