Are there any other MMMT survivors out there?

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  • ConnieSW
    ConnieSW Member Posts: 1,616 Member

    Hi. I'm 31 years old and last

    Hi. I'm 31 years old and last March, I was diagnosed with mmmt. I finished my chemotherapy last July. And I just had a ct scan to check status of tumors. I'm hoping it will joy recur again.  I seem to be one of the youngest to get this kind of tumor, I'm not sure. But I'm reading through all the messages and I can see that there is hope. Thanks.

    Welcome

    Sorry you had to join this group and at such a young age.  I look forward to sharing years and years and years of NED with you.

  • It happened to Me
    It happened to Me Member Posts: 206 Member

    Hi. I'm 31 years old and last

    Hi. I'm 31 years old and last March, I was diagnosed with mmmt. I finished my chemotherapy last July. And I just had a ct scan to check status of tumors. I'm hoping it will joy recur again.  I seem to be one of the youngest to get this kind of tumor, I'm not sure. But I'm reading through all the messages and I can see that there is hope. Thanks.

    Welcome Anissaroelle

    I have been so amazed at how young women are at time of diagnosis.  I'm sorry you have cancer but am very glad that you have joined.  This is a great group who have a wealth of information and this is a very loving, caring group.  You can share anything, good, bad, frustrations, joys etc.  This is one big family to get plenty of cyber hugs.

    Jeanette

  • ConnieBH
    ConnieBH Member Posts: 4

    Welcome Anissaroelle

    I have been so amazed at how young women are at time of diagnosis.  I'm sorry you have cancer but am very glad that you have joined.  This is a great group who have a wealth of information and this is a very loving, caring group.  You can share anything, good, bad, frustrations, joys etc.  This is one big family to get plenty of cyber hugs.

    Jeanette

    I would love to see more

    I would love to see more updates on some of these older posts.  Are there survivors out there still from 2010 and such years?  My mom was diagnosed last September of 2013 and we lost her in July 2014.  She refused more chemo after 7 treatments, she had a lot of pain and since the CA125 were rising again, she got very disappointed, as well as the tumors coming back and many side effects, including diarrhea for months and rapid weight loss.  She was always so strong and never took medications for anything, that I think her body went haywire with it all.  In April or so I noticed a huge change in her spirit when all doctors were telling her to get her affairs together, since her numbers didn't look good and she refused the chemo.  Radiation was not an option since it was Stage IV.  It was all so fast and confusing, we all live in different cities with young children and only one of my sisters was able to travel to take care of her, the rest of us went on long weekends but not longer, since she lived in Canada.  While this was shocking and we can't believe she's gone already, the ascites in her abdomen are what sped the death process.  She ended up skinny as a skeleton when she was a happily voluptous woman always, so that was shocking, to see her deteriorate so fast.  Anyone else go through something similar?  All of you who are still in remission or alive, prayers go out to you all and may you live as long as you hope.  Love and peace!

  • ConnieBH
    ConnieBH Member Posts: 4
    lll0501 said:

    MMMT friend

    My dear friend has MMMT and just got a scan that shows a new mass in right abdomen - omentum area. She is certain she is going to die in the next 3 or 4 months. I cannot guarantee that but i would like to give her examples of folks with similar diagnoses that have survived longer.

     

    What happened to your friend?

    What happened to your friend?  Did she get better?

  • cleo
    cleo Member Posts: 144
    Long term

    Grade 3/4 MMT 2007 as posted previously.  I did have 20+ lymph glands removed and have left leg lymphedema but am inclined to think that assisted the NED. 

  • RoseyR
    RoseyR Member Posts: 471 Member
    cleo said:

    Long term

    Grade 3/4 MMT 2007 as posted previously.  I did have 20+ lymph glands removed and have left leg lymphedema but am inclined to think that assisted the NED. 

    DIAGOSED IN 2010 AND STILL WELL AND ALIVE

    To provide hope to all diangosed with MMMT (uterine carcinosarcoma), I was diagnosed at age 62 with Stage IB uterine carcinosarcoma in Sepeember, 2010 and after six rouns of taxol/carboplatin and 25 pelvic radiatio sessions at U Penn. am astill alive and feeling very well with no sign of recurrence.

    For two years AFTER diagnosis, I was quite careful with my diet--avoiding sugar or artificial seeeteners of any kind, eating only organic meat and cheese, avoidng pasteuriized dairy products, and taking 500 mgs of curcumin three times a day with meals plus 6,000 IU of vitamin D a day.  I also was on LDN (low-dose naltrexone) for the past two years  (taking 4 milligrams a day, one pill each night before bedtime).  I also have taken 20 milligrams of melatonin before bed for the past three years.   Two years ago, consulting with a naturopath named Nasha Winters in Durango, Coloardo, I was also put on a gluten-free diet although I had never had any digestive problems; she insisted that modern wheat products (as well as rye, oats, barley) create inflammmation in the intestines, diveting the immune system form attaching the random cancer cells that after age 50, we ALL have floating about.  Gluten, in short, compromises th immune ystem.

    I cannot be sure I am NED because I have refused CT scans since finiishing treatment.  They wanted me to do them eveyr three months but my research showed that frequent CT scans danage the very DNA we need to fight our cancers.  I decided, for better or worse, that I would not scan until, and unless, I were having serious symptoms.  Today, four years since treatment eneded, and nearly five years since diagnosis, I am feeling very  very well and working full time at age 68.

    If nothing else, I hope this gives hope to all of you diagnosed with MMMT cancer (uterine carcinosarcoma).

    I would also read the books ANti-Cancer by Dr. S. Schreiber and "KnoekOUt" by Suzanne Somers.

    Love to ALL!

    Rosey R

     

  • RoseyR
    RoseyR Member Posts: 471 Member

    Hi. I'm 31 years old and last

    Hi. I'm 31 years old and last March, I was diagnosed with mmmt. I finished my chemotherapy last July. And I just had a ct scan to check status of tumors. I'm hoping it will joy recur again.  I seem to be one of the youngest to get this kind of tumor, I'm not sure. But I'm reading through all the messages and I can see that there is hope. Thanks.

    There IS hope!

    Although I was 62 at diagnosis, not 31, I urge you to look at my post below and take heart and comfort and hope that you may survivie far longer than you imagined with this disease.

    At your age, your immune system is STRONGER than those of us who are sisty!

    I would also urge you to read the positive and upbeat book called "Atni-Cancer," by Dr. David S. Scherieber, which is fabulous on how to create an anti-cancer diet.

    YOu want to lowe estrogen leels in your body in any way possible, too, so I would Toogle "natural aromatase inhhibiors" to see what foods naturally suppress the excessive strogen that ofen feeds cancers such as MMMT.

    Also look into LDN (low-dose naltrexone), which is quite inexpensive; if ou can find an "integrative doctor" in your area, you can get him or her to prescribe it for you at a dose of 4.5 milligrams per nigh: one pill before bedtime.

    BE sure that your vitamin D blood level is at least 40 to 50.  If lower, TAKE liquiid form of Vitamin D, 6,000 IU a day until bollod test shows you are up to 50.

    I would also read the books "Anti-Cancer" by Dr. dAvid Sergeant Screiber and "KNoeck-OUt" by Suzanne Somers.

    I would eat as many vegetables as possible, sepcially crucifers, stir-fried in olive oil or coconut oil, and take curcumin (500 mg three times a dya).  

    Gluten-free oatmeal and berries are good for breakfast--rr omelettes with vegigies and herbs.  

    A glass or two of red wie from SPAIN can't hurt you as long as you have it with dinner: full of resveratrol, and latest research shows that Spanish red wine lowers estrogen in our bloodstream: always a good thing!

    And try to reduce stress of any kind: relax and enjoy life.  It will enhance your hormones and survival.

    Love

    RoseyR

  • RoseyR
    RoseyR Member Posts: 471 Member
    Ro10 said:

    Kelly does look great

    What a great report.  And a picture is worth a thousand words!  Praying for continued healing and good results from the MRI.  Take care of yourself and keep us updated.  In peace and caring.

    SO GREAT TO SEE YOU STILL GIVING ADVICE!

    RO,

    Having been off this site alas, for a year and half, I am SO happy to see you still here, apparently well, giving hope and adivice to the newly diagnosed.

    You are SUCH a tropper and inspiration to all!

    I have been diverted from CSN, alas, by my full-time job as well as another web site for women being treted by Dr. Nasha Winters in Durango Colorado (I flew out to see her two summers ago), but I had always voewed to go back to CSN to see how my old buddies are doing.  

    And I'm SO happy to see you still here, doling out great advice.

    Love,

    RoseyR

     

  • marti968
    marti968 Member Posts: 37

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

    Diane

    MMMT meaning

    Malignant Mixed Müllerian Tumors  I am still here after 3 years. Marti in AZ USA 

  • marti968
    marti968 Member Posts: 37
    Hello Goatgirl

    I am in my 3rd year now how are you doing.

  • marti968
    marti968 Member Posts: 37
    RoseyR said:

    DIAGOSED IN 2010 AND STILL WELL AND ALIVE

    To provide hope to all diangosed with MMMT (uterine carcinosarcoma), I was diagnosed at age 62 with Stage IB uterine carcinosarcoma in Sepeember, 2010 and after six rouns of taxol/carboplatin and 25 pelvic radiatio sessions at U Penn. am astill alive and feeling very well with no sign of recurrence.

    For two years AFTER diagnosis, I was quite careful with my diet--avoiding sugar or artificial seeeteners of any kind, eating only organic meat and cheese, avoidng pasteuriized dairy products, and taking 500 mgs of curcumin three times a day with meals plus 6,000 IU of vitamin D a day.  I also was on LDN (low-dose naltrexone) for the past two years  (taking 4 milligrams a day, one pill each night before bedtime).  I also have taken 20 milligrams of melatonin before bed for the past three years.   Two years ago, consulting with a naturopath named Nasha Winters in Durango, Coloardo, I was also put on a gluten-free diet although I had never had any digestive problems; she insisted that modern wheat products (as well as rye, oats, barley) create inflammmation in the intestines, diveting the immune system form attaching the random cancer cells that after age 50, we ALL have floating about.  Gluten, in short, compromises th immune ystem.

    I cannot be sure I am NED because I have refused CT scans since finiishing treatment.  They wanted me to do them eveyr three months but my research showed that frequent CT scans danage the very DNA we need to fight our cancers.  I decided, for better or worse, that I would not scan until, and unless, I were having serious symptoms.  Today, four years since treatment eneded, and nearly five years since diagnosis, I am feeling very  very well and working full time at age 68.

    If nothing else, I hope this gives hope to all of you diagnosed with MMMT cancer (uterine carcinosarcoma).

    I would also read the books ANti-Cancer by Dr. S. Schreiber and "KnoekOUt" by Suzanne Somers.

    Love to ALL!

    Rosey R

     

    Rosey R

    So good to see you still here RoseyR.  I am well into my 3rd year. I had bladder and kidney now left lower lung involment.  I trust my Oncologist and credit him after God for saving my life.  I still see him every 3 months and we discuss the CAT Scan or the PET Scan.  I am fortunate enough to be able to talk to him on his level and I think questions really helps you to help yourself. Marti in AZ

  • marti968
    marti968 Member Posts: 37
    ConnieBH said:

    I would love to see more

    I would love to see more updates on some of these older posts.  Are there survivors out there still from 2010 and such years?  My mom was diagnosed last September of 2013 and we lost her in July 2014.  She refused more chemo after 7 treatments, she had a lot of pain and since the CA125 were rising again, she got very disappointed, as well as the tumors coming back and many side effects, including diarrhea for months and rapid weight loss.  She was always so strong and never took medications for anything, that I think her body went haywire with it all.  In April or so I noticed a huge change in her spirit when all doctors were telling her to get her affairs together, since her numbers didn't look good and she refused the chemo.  Radiation was not an option since it was Stage IV.  It was all so fast and confusing, we all live in different cities with young children and only one of my sisters was able to travel to take care of her, the rest of us went on long weekends but not longer, since she lived in Canada.  While this was shocking and we can't believe she's gone already, the ascites in her abdomen are what sped the death process.  She ended up skinny as a skeleton when she was a happily voluptous woman always, so that was shocking, to see her deteriorate so fast.  Anyone else go through something similar?  All of you who are still in remission or alive, prayers go out to you all and may you live as long as you hope.  Love and peace!

    Why not radiation?

    I only did radiation and no Chemo or surgeries. All the "french-fried" tumors are still in my body in different areas.  I almost died the last time I did Chemo in 2000.  So did not do it with this MMMT.  To bad your mom did not use that option.  I have been pain free with everything so far, but I might just be one of the lucky ones.  I hope you find peace.  I lost my mom at 4 yrs. old.  But still miss her even today at 75.  Good luck and I will keep you in my prayers. Marti in AZ                                        

  • marti968
    marti968 Member Posts: 37
    ConnieBH said:

    I would love to see more

    I would love to see more updates on some of these older posts.  Are there survivors out there still from 2010 and such years?  My mom was diagnosed last September of 2013 and we lost her in July 2014.  She refused more chemo after 7 treatments, she had a lot of pain and since the CA125 were rising again, she got very disappointed, as well as the tumors coming back and many side effects, including diarrhea for months and rapid weight loss.  She was always so strong and never took medications for anything, that I think her body went haywire with it all.  In April or so I noticed a huge change in her spirit when all doctors were telling her to get her affairs together, since her numbers didn't look good and she refused the chemo.  Radiation was not an option since it was Stage IV.  It was all so fast and confusing, we all live in different cities with young children and only one of my sisters was able to travel to take care of her, the rest of us went on long weekends but not longer, since she lived in Canada.  While this was shocking and we can't believe she's gone already, the ascites in her abdomen are what sped the death process.  She ended up skinny as a skeleton when she was a happily voluptous woman always, so that was shocking, to see her deteriorate so fast.  Anyone else go through something similar?  All of you who are still in remission or alive, prayers go out to you all and may you live as long as you hope.  Love and peace!

    Forgot

    I was stage 4 also.  Now I am cancer free as fafr as the machines can tell. 

  • Ilda28
    Ilda28 Member Posts: 8
    marti968 said:

    MMMT meaning

    Malignant Mixed Müllerian Tumors  I am still here after 3 years. Marti in AZ USA 

    Hello Marty, 

    I am so happy to see your posts again. I wanted to ado you did decide to go with treatment ?

  • Ilda28
    Ilda28 Member Posts: 8
    marti968 said:

    MMMT meaning

    Malignant Mixed Müllerian Tumors  I am still here after 3 years. Marti in AZ USA 

    Hello Marty, 

    I am so happy to see your posts again. I wanted to ado you did decide to go with treatment ?

  • Hilajoan
    Hilajoan Member Posts: 21
    MMMT survivors

    So far, so - fairly - good.  It's now nearly Sept 2015 and I'm still here.....  Mostly feeling absolutely normal, no pain, got energy and am fine.....  BUT, metastases in lung lymph node region still growing, so after allergic reaction to Carboplatin, going back on chemo on 3 Sept, for a further 18 weeks - every week.  A bit tight-chested occasionally, a bit breathless walking uphill, etc. - is that age-related, rather than cancer-related I wonder........ I am in my seventies - but normally have the energy and drive of a 30-year-old - wish the body were the same!!  I did have breast Ca a few months before the dx of MMMT and hysterectomy, and I still wonder occasionally if THAT could have metastasized, but Onc assures me it's 90%+ likely to be the MMMT - no biopsy possible, no radiation possible, so I'm stuck with chemo......  Looks as though we can survive.....  - My Onc says that Carboplatin alone is the least toxic of all the chemoes, that's why we are giving it another go - won't lose my hair with it.............................  Good luck girls - stay INFORMED and watch the Internet for new developments in treatment.  Joan

     

  • anyone with mmmt of ovary?

    my mother 51 years of age is recently diagnosed with mmmt of ovary stage 3c. Its very rare and we are hell scared. She got her debulking surgery done 3 weeks back and we are meeting an oncologist tomorrow morning. Any survivors of this cancer around?

  • Editgrl
    Editgrl Member Posts: 903 Member

    anyone with mmmt of ovary?

    my mother 51 years of age is recently diagnosed with mmmt of ovary stage 3c. Its very rare and we are hell scared. She got her debulking surgery done 3 weeks back and we are meeting an oncologist tomorrow morning. Any survivors of this cancer around?

    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

  • ab57
    ab57 Member Posts: 1
    Hilajoan said:

    No chemo, no radiation? for Carcinosarcoma/MMMT
    I had full hysterectomy in November (2011) and have had no radiation or Chemo - from what I've read I might just as well not! I feel fit as a fiddle - even though I had breast cancer and a mastectomy in March last year (also 2011). The two cancers are unrelated - fortunately. I am in London, England. Hope our doctors and oncs know as much as those in the USA - they should do - they can all read and write! No-one seems to be able to agree on the likelihood of recurrence of the Carcinosarcoma/MMMT. So why should I put myself through the trauma of Chemo and radiation, with probable lasting ill effects when there may be no need, or possibly no effect on the likelihood of prolonging my life. Any views? Joan

    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.

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    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.

     

    ab57

    HI, Sorry for your DX. There are several ladies on this board that have MMMT. I am not one of them but I'm responding because I fear your question won't be seen. It got buried in a lot of other posts.  There is another thread that is newer that you may want to take a look at. It is titled ladies out there.... and shows up about 5 down on this board.  Also, if you go to the end of the mmmt thread and post your question, it will be way easier to find. So, go to the last message on the last page and hit reply. It should line you up at the end that way. Then copy your post there. This is a great place to get support and honest answers. It has helped me more than I can begin to say. Take care of yourself, Cindi 

    PS - The MMMT thread has loads of information on it. With a lot of survivors still sending replies.