Are there any other MMMT survivors out there?

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Comments

  • RoseyR
    RoseyR Member Posts: 471 Member
    ghee56 said:

    mmmt survivors
    I was diagnosed with 1c MMMT in March 2004. Had a complete hysterectomy and internal plus external radiation. Still here. Watch my diet and excercise daily. Still worry...lots of small scares, but hanging in there. Would love to hear from other long term survivors. All of you out there...keep at it. I did get a diet from a book called What to Eat when You Have Cancer....stuck to this for the first 18 months after...think it helped.

    HOPE YOU'RE STILL DOING WELL

    Dear Ghee 56,

    Scrolling bac through these messages was so impressed to see you're still well seven years (is that RIGHT?) after diagnosis.

    Wow!

    Where were you treated, I wonder?

    And what kind of diet have you been on for past five years? (Just the basics--are you vegetarian? do you eat any dairy or meat? no sugar, I assume.)

    And what kind of exercise have you been doing per week or day?

    I think your answers would be helpful to all of us coping with this diagnosis!

    Appreciatively,
    Rosey
  • ellaintexas
    ellaintexas Member Posts: 2
    Clouth said:

    Ok. :)

    Ok. :)

    Ten Years with Tumor
    I had been having spotting for several years along with weight gain in the pelvic area. In ten years I went to eight doctors and was told it was because I was post-menopausal or that I was eating too much. Couldn't get anyone to send me for any tests though one doctor said she'd do some "digging around inside" and see if she spotted anything! No tests first though. Finally I found a doctor who immediately sent me for tests and then to an oncologist. Within 4 weeks I had major surgery, a complete hysterectomy and my spleen removed. The tumor in my uterus was so massive the oncologist said it must have been growing for at least ten years.The diagnosis was MMMT (carcinosarcoma)stage 3c. I was told 95% of the cancer was removed and I need to undergo chemo for the little that is in the lymph glands. I am feeling great and am very optimistic about the outcome. I will beat this. I don't have grandchildren yet and when they do come along I don't want them to just be told about me, I want them to remember me. Baking cookies, reading to them and doing all the grandmotherly things.

    Hang in there ladies! We are stronger than we think. I should have been dead with this monster after only a few years. I survived ten with it and the rest is going!
  • jazzy1
    jazzy1 Member Posts: 1,379

    Ten Years with Tumor
    I had been having spotting for several years along with weight gain in the pelvic area. In ten years I went to eight doctors and was told it was because I was post-menopausal or that I was eating too much. Couldn't get anyone to send me for any tests though one doctor said she'd do some "digging around inside" and see if she spotted anything! No tests first though. Finally I found a doctor who immediately sent me for tests and then to an oncologist. Within 4 weeks I had major surgery, a complete hysterectomy and my spleen removed. The tumor in my uterus was so massive the oncologist said it must have been growing for at least ten years.The diagnosis was MMMT (carcinosarcoma)stage 3c. I was told 95% of the cancer was removed and I need to undergo chemo for the little that is in the lymph glands. I am feeling great and am very optimistic about the outcome. I will beat this. I don't have grandchildren yet and when they do come along I don't want them to just be told about me, I want them to remember me. Baking cookies, reading to them and doing all the grandmotherly things.

    Hang in there ladies! We are stronger than we think. I should have been dead with this monster after only a few years. I survived ten with it and the rest is going!

    Ellain
    Welcome and so sorry to hear about your long 10 yr journey. Wow...now that's persistence, but sure don't like the outcome...CANCER.

    I'm a stage 3c MMMT survivor -- cancer found in 1 lymph node, had total hysterectomy, 6 rounds chemo plus 33 sessions pelvic radiation all in 2009. Today 3 years NED (no evidence of disease), I'm so very grateful to be here, as learning to love each and every minute of each and every day. We never know what tomorrow will bring.

    Keep up the positive mind, as our minds do control our bodies. Keep the goals of seeing your grandkids one day and doing all the grandmotherly things. It will happen, you must believe that deep down inside as well as your mind.

    Enjoy life, it has an expiration!
    Jan
  • parkmom
    parkmom Member Posts: 1
    RoseyR said:

    SEND ME YOUR EMAIL AND I WILL ADVISE YOU

    Jackie,

    Am a survivor of MMMT so far (stage iB, diagnosed two years ago). Would love to send you some advice on how to get through chemo with minimal side effects. If you send me your email address via CSN email (upper left of this screen), I will respond.

    Best,
    Rosey

    mom's new diagnosis of carcinosarcoma- stage 1a
    Could you send me some info on how you got through the chemo and what you did for treatment? There are many questions and we are trying to help mom as much as possible. Don't know which oncologist to see and such. We are debating between Virginia Piper in Minneapolis, MN and Rochester Mayo, also in Minnesota.
    thanks for any help you can send me.
    Parkmom
  • ellaintexas
    ellaintexas Member Posts: 2
    jazzy1 said:

    Ellain
    Welcome and so sorry to hear about your long 10 yr journey. Wow...now that's persistence, but sure don't like the outcome...CANCER.

    I'm a stage 3c MMMT survivor -- cancer found in 1 lymph node, had total hysterectomy, 6 rounds chemo plus 33 sessions pelvic radiation all in 2009. Today 3 years NED (no evidence of disease), I'm so very grateful to be here, as learning to love each and every minute of each and every day. We never know what tomorrow will bring.

    Keep up the positive mind, as our minds do control our bodies. Keep the goals of seeing your grandkids one day and doing all the grandmotherly things. It will happen, you must believe that deep down inside as well as your mind.

    Enjoy life, it has an expiration!
    Jan

    Anyone Else Have Fluid Build-up?
    I am constantly having fluid build-up in my chest and abdomen. This will be the fourth time it's drained. I had asked my oncologist about it before my surgery and he said it was caused by the tumor. He assured me that after it was removed the problem would go away. Well, the tumor was removed 7 weeks ago and I still have it. Asking him again just brought a "the body will eventually take care of it" response.

    Does anyone else get this and if so do you know what causes it and when it will stop?

    Thanks. And BTW how do I post without replying to someone? Can't figure that out! LOL!!
  • debrajo
    debrajo Member Posts: 1,095

    Anyone Else Have Fluid Build-up?
    I am constantly having fluid build-up in my chest and abdomen. This will be the fourth time it's drained. I had asked my oncologist about it before my surgery and he said it was caused by the tumor. He assured me that after it was removed the problem would go away. Well, the tumor was removed 7 weeks ago and I still have it. Asking him again just brought a "the body will eventually take care of it" response.

    Does anyone else get this and if so do you know what causes it and when it will stop?

    Thanks. And BTW how do I post without replying to someone? Can't figure that out! LOL!!

    Hi Ellain! Go back to the
    Hi Ellain! Go back to the uterine page where all the questions are. In the left side there is a place where it says "Post new topic" Click there and it will take you to the page where you can post your question/topic. Best, Debrajo(a;so in Texas)
  • txtrisha55
    txtrisha55 Member Posts: 693 Member

    Anyone Else Have Fluid Build-up?
    I am constantly having fluid build-up in my chest and abdomen. This will be the fourth time it's drained. I had asked my oncologist about it before my surgery and he said it was caused by the tumor. He assured me that after it was removed the problem would go away. Well, the tumor was removed 7 weeks ago and I still have it. Asking him again just brought a "the body will eventually take care of it" response.

    Does anyone else get this and if so do you know what causes it and when it will stop?

    Thanks. And BTW how do I post without replying to someone? Can't figure that out! LOL!!

    ellain
    So sorry to hear about your 10 year journey. I also am in Texas in the Dallas area. I was post menaposed when I started flooding in March 2011. Had a D&c which was sent to pathology. Found out 1 April that it had MMMT cancer cells .Had full hystrectomy 8 April which said it was stage 3c1 becuase it was in 1 lymph node. I had 6 rounds od carbo/taxal and no radiation. So far so good and I am NED. I did not have and fluid build up so I cannot give you any advise in that area. There are other ladies on this site that have had fluid build up. As debrajo told you to post a new subject to go to the main page and click on post a new topic. Wishing you all the luck now that you have joined this group sorry you had to join it thoiugh. trisha
  • txtrisha55
    txtrisha55 Member Posts: 693 Member

    Anyone Else Have Fluid Build-up?
    I am constantly having fluid build-up in my chest and abdomen. This will be the fourth time it's drained. I had asked my oncologist about it before my surgery and he said it was caused by the tumor. He assured me that after it was removed the problem would go away. Well, the tumor was removed 7 weeks ago and I still have it. Asking him again just brought a "the body will eventually take care of it" response.

    Does anyone else get this and if so do you know what causes it and when it will stop?

    Thanks. And BTW how do I post without replying to someone? Can't figure that out! LOL!!

    duplicate
    dup
  • I believe
    I believe Member Posts: 38
    jazzy1 said:

    Ellain
    Welcome and so sorry to hear about your long 10 yr journey. Wow...now that's persistence, but sure don't like the outcome...CANCER.

    I'm a stage 3c MMMT survivor -- cancer found in 1 lymph node, had total hysterectomy, 6 rounds chemo plus 33 sessions pelvic radiation all in 2009. Today 3 years NED (no evidence of disease), I'm so very grateful to be here, as learning to love each and every minute of each and every day. We never know what tomorrow will bring.

    Keep up the positive mind, as our minds do control our bodies. Keep the goals of seeing your grandkids one day and doing all the grandmotherly things. It will happen, you must believe that deep down inside as well as your mind.

    Enjoy life, it has an expiration!
    Jan

    MMMT
    Hi All,

    I would like to share with you my story.

    My mom (71 years old) started bleeding early september 2012 and she didnt take it seriously and thought it is because she was tired from working at home, after 1 week of bleeding a mass fell down from the uterus having a size of 10*5.3*4cm, she was shocked to see this tumor and she put it in a bag to send it for test.

    The results of the test was that its an MMMT or carcinosarcoma cancer. The doctor informed us that he cannot rely only on the mass that fell down and since in the IRM a small part of the mass is still in the uterus, he would need to do another test after the operation. The results of the remaining part in the uterus was also MMMT so he infomed us that a total hysterectomy and removal of lymph nodes is required.

    The operation took 6 hours and it was painful to my mom but she's doing fine now after 2 weeks of the operation and recovering.

    The uterus and all the lymph nodes and other related organs were sent to test and the results were that the cancer is only confined in the uterus (penetrated 1/3 of the myometrium)and all the other parts were clean.

    The doctor informed us that its stage I or II of carcinocaroma due to the size of the mass and that she will need to have 4 sessions of chemotherapy (Endoxan & Carboplatin).

    We will start the first session of chemo on the 16th of November 2012. Mom is feeling positive and she's willing to fight this beast. The doctor said that this treatment will not make the hair fall and she's happy for that.

    Finally, I would like to wish you all ladies the good heath because you are very precious to your families and I thank God everyday for giving me this great MoM.I will keep you in my paryers and If you believe in GOD, you will be healed.

    If you have any suggestions or if you think that the treatment (Endoxan & Carboplatin) is not the right treatment just let me know.

    God Bless you
  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    I believe said:

    MMMT
    Hi All,

    I would like to share with you my story.

    My mom (71 years old) started bleeding early september 2012 and she didnt take it seriously and thought it is because she was tired from working at home, after 1 week of bleeding a mass fell down from the uterus having a size of 10*5.3*4cm, she was shocked to see this tumor and she put it in a bag to send it for test.

    The results of the test was that its an MMMT or carcinosarcoma cancer. The doctor informed us that he cannot rely only on the mass that fell down and since in the IRM a small part of the mass is still in the uterus, he would need to do another test after the operation. The results of the remaining part in the uterus was also MMMT so he infomed us that a total hysterectomy and removal of lymph nodes is required.

    The operation took 6 hours and it was painful to my mom but she's doing fine now after 2 weeks of the operation and recovering.

    The uterus and all the lymph nodes and other related organs were sent to test and the results were that the cancer is only confined in the uterus (penetrated 1/3 of the myometrium)and all the other parts were clean.

    The doctor informed us that its stage I or II of carcinocaroma due to the size of the mass and that she will need to have 4 sessions of chemotherapy (Endoxan & Carboplatin).

    We will start the first session of chemo on the 16th of November 2012. Mom is feeling positive and she's willing to fight this beast. The doctor said that this treatment will not make the hair fall and she's happy for that.

    Finally, I would like to wish you all ladies the good heath because you are very precious to your families and I thank God everyday for giving me this great MoM.I will keep you in my paryers and If you believe in GOD, you will be healed.

    If you have any suggestions or if you think that the treatment (Endoxan & Carboplatin) is not the right treatment just let me know.

    God Bless you

    Sorry to hear about your Mom
    Stay off the Internet, there is not a lot of updated information there. Did they do a tissue assay or estrogen positive or negative test? The tissue assay shows which chemo drugs are the best for the tumor that your Mom had. The estrogen test tells if the tumor is hormone positive or negative, if positive she will need to try and stay away from hormones that have positive effect on her. I was 55 when I was diagnosed last year with carsonoma sarcoma (MMMT) cancer. The tumor in the uterus was a 1A but it was found in 1 lymph node so upgraded to stage 3C1. I had 6 rounds of carboplatin/paclitaxel and no radiation. The paclitaxel side effects was that you do lose you hair. Mine was down the middle of my back. Cut short before the first chemo then shaved it bald once it started falling out. For me, it was no big deal. I just went bald. I could not find hair loss as a side effect of either of the chemo drugs listed in your message. Drink plenty of liquids to help with the constipation that does come from all the drugs. I did not take a lot of supplements during the chemo as my doctor told me not to, but there are some ladies on this site that did. Ask her doctor. A lot of the ladies also changed their diets. Make sure you get copies of all her reports, it helps to have them to refer back to them. Will be praying for a complete recovery and good outcome from the chemo. trish
  • BeckyC
    BeckyC Member Posts: 11
    I believe said:

    MMMT
    Hi All,

    I would like to share with you my story.

    My mom (71 years old) started bleeding early september 2012 and she didnt take it seriously and thought it is because she was tired from working at home, after 1 week of bleeding a mass fell down from the uterus having a size of 10*5.3*4cm, she was shocked to see this tumor and she put it in a bag to send it for test.

    The results of the test was that its an MMMT or carcinosarcoma cancer. The doctor informed us that he cannot rely only on the mass that fell down and since in the IRM a small part of the mass is still in the uterus, he would need to do another test after the operation. The results of the remaining part in the uterus was also MMMT so he infomed us that a total hysterectomy and removal of lymph nodes is required.

    The operation took 6 hours and it was painful to my mom but she's doing fine now after 2 weeks of the operation and recovering.

    The uterus and all the lymph nodes and other related organs were sent to test and the results were that the cancer is only confined in the uterus (penetrated 1/3 of the myometrium)and all the other parts were clean.

    The doctor informed us that its stage I or II of carcinocaroma due to the size of the mass and that she will need to have 4 sessions of chemotherapy (Endoxan & Carboplatin).

    We will start the first session of chemo on the 16th of November 2012. Mom is feeling positive and she's willing to fight this beast. The doctor said that this treatment will not make the hair fall and she's happy for that.

    Finally, I would like to wish you all ladies the good heath because you are very precious to your families and I thank God everyday for giving me this great MoM.I will keep you in my paryers and If you believe in GOD, you will be healed.

    If you have any suggestions or if you think that the treatment (Endoxan & Carboplatin) is not the right treatment just let me know.

    God Bless you

    mother with MMMT
    Good Morning,
    I was so interested to read your story because my mother who is 82 was also diagnosedwith uterine cancer in Sept 2012. She had light bleeding but they also found a bloody cancerous mass in uterus after all the tests. She had an abdominal hysterectomy last week ( which only took 1.5 hours thank goodness!) and the surgeon said it was MMMT stage 1C ( at least for now- the pathology isn't back yet) There was no indication that the cancer was outside the utereus but was through the endometrium and myleometrium but not through the serosa. Our gyn/onc however said that due to the extreme agressivness of this cancer my mother will have both chemotherapy and radiation. And she also said her hair would fall out. She hasn't given us the exact chemo drugs yet - needs to get the pathology back and is looking at clinical trials too. I would ask your doctor about radiation - that seems to be very effective against this cancer. My son is a physician (emergency medicine) so not a cancer doctor but says it is VERY important to have a gynecologist/oncologist for treatment of this disease. Doctors are seeing more of this kind of cancer as women are living longer and I think treatment is better. Dont' read survivial stats on the internet - scary. But my son says there are very few studies of this kind of cancer and the high morbidity rates are due to the older age and generally poorer health of many older women.
    I will pray for your mother and wish you the very best. I hope this information helps some!
  • I believe
    I believe Member Posts: 38
    BeckyC said:

    mother with MMMT
    Good Morning,
    I was so interested to read your story because my mother who is 82 was also diagnosedwith uterine cancer in Sept 2012. She had light bleeding but they also found a bloody cancerous mass in uterus after all the tests. She had an abdominal hysterectomy last week ( which only took 1.5 hours thank goodness!) and the surgeon said it was MMMT stage 1C ( at least for now- the pathology isn't back yet) There was no indication that the cancer was outside the utereus but was through the endometrium and myleometrium but not through the serosa. Our gyn/onc however said that due to the extreme agressivness of this cancer my mother will have both chemotherapy and radiation. And she also said her hair would fall out. She hasn't given us the exact chemo drugs yet - needs to get the pathology back and is looking at clinical trials too. I would ask your doctor about radiation - that seems to be very effective against this cancer. My son is a physician (emergency medicine) so not a cancer doctor but says it is VERY important to have a gynecologist/oncologist for treatment of this disease. Doctors are seeing more of this kind of cancer as women are living longer and I think treatment is better. Dont' read survivial stats on the internet - scary. But my son says there are very few studies of this kind of cancer and the high morbidity rates are due to the older age and generally poorer health of many older women.
    I will pray for your mother and wish you the very best. I hope this information helps some!

    MMMT
    Trish and Becky - Thanks a lot for your prompt replies and valuabe information.

    Trish- for the estrogen test, I am not sure if it was part of the test but in the test results they mentioned the following sentence (its in french and i did the translation) " Epithelial component and Cytokeratin CK7 and CKC and positive EMA" I am not sure what this sentence means.

    Becky - For the radiation point. I will make sure to ask the Doctor why he didn't suggest radiation treatment.

    Thanks again
  • jazzy1
    jazzy1 Member Posts: 1,379
    I believe said:

    MMMT
    Trish and Becky - Thanks a lot for your prompt replies and valuabe information.

    Trish- for the estrogen test, I am not sure if it was part of the test but in the test results they mentioned the following sentence (its in french and i did the translation) " Epithelial component and Cytokeratin CK7 and CKC and positive EMA" I am not sure what this sentence means.

    Becky - For the radiation point. I will make sure to ask the Doctor why he didn't suggest radiation treatment.

    Thanks again

    I believe
    I as well was diagnosed with MMMT and had it in 1 lymph node, so I was stage 3c....similar to Trisha. I had carboplatin and taxol which is GENERALLY the first round of chemo for our cancer, but everyone is different. Taxol is the drug which causes one to loose hair and yes I was a "bald eagle".

    My doc suggested radiation since the chemo was in pelvic node, and wanted to zap the node affected. Since your dear mom didn't have it outside of uterus, possibly why not suggesting radiation, but do ask. Only reason I'd check further on radiation, this MMMT is a very aggressive type of uterine/ovarian cancer and one must hit it really, really hard. Fill all guns with lots of ammo, according to my doc. My butt was dragging by the end of treatments, but here I am today, 3 years since treatments ended and have NO EVIDENCE OF DISEASE.

    Truly don't know it all, but can only suggest what my docs recommended. As well, try to find a doc who's familiar with MMMT and hoping you have OB/oncologist, not medical oncologist. This as well keeps your guns loaded to fight.

    Your mom is so lucky to have you by her side...makes her journey so much easier.

    Jan
  • I believe
    I believe Member Posts: 38
    jazzy1 said:

    I believe
    I as well was diagnosed with MMMT and had it in 1 lymph node, so I was stage 3c....similar to Trisha. I had carboplatin and taxol which is GENERALLY the first round of chemo for our cancer, but everyone is different. Taxol is the drug which causes one to loose hair and yes I was a "bald eagle".

    My doc suggested radiation since the chemo was in pelvic node, and wanted to zap the node affected. Since your dear mom didn't have it outside of uterus, possibly why not suggesting radiation, but do ask. Only reason I'd check further on radiation, this MMMT is a very aggressive type of uterine/ovarian cancer and one must hit it really, really hard. Fill all guns with lots of ammo, according to my doc. My butt was dragging by the end of treatments, but here I am today, 3 years since treatments ended and have NO EVIDENCE OF DISEASE.

    Truly don't know it all, but can only suggest what my docs recommended. As well, try to find a doc who's familiar with MMMT and hoping you have OB/oncologist, not medical oncologist. This as well keeps your guns loaded to fight.

    Your mom is so lucky to have you by her side...makes her journey so much easier.

    Jan

    Thank you Jan.
    I agree with

    Thank you Jan.

    I agree with your points that's why I want to double check on the treatment as I don't my mom to have a light treatment and at the end of the treatment it would come up again.

    Actually two doctors are handling my mom's case,the first doctor who did the operation is Gynecologic/oncology and the other who's handling the treatment is Hematology-Oncology

    Excellent to know your story that after 3 years of treatment there is NED. I wish you all the health.

    Thanks
  • jazzy1
    jazzy1 Member Posts: 1,379
    I believe said:

    Thank you Jan.
    I agree with

    Thank you Jan.

    I agree with your points that's why I want to double check on the treatment as I don't my mom to have a light treatment and at the end of the treatment it would come up again.

    Actually two doctors are handling my mom's case,the first doctor who did the operation is Gynecologic/oncology and the other who's handling the treatment is Hematology-Oncology

    Excellent to know your story that after 3 years of treatment there is NED. I wish you all the health.

    Thanks

    You're Welcome~
    One other question you might ask, why the mix of drugs they're suggesting for your mom? As mentioned the ones I had -- carboplatin & taxol -- are the first line used most often. But...we all know different strokes for different folks, plus different and new updates for drugs. Curious if nothing else if you have an answer.

    Both the type of docs you suggested are EXCELLENT. Can't remember if this was suggested...DON'T BOTHER TO RESEARCH THIS PARTICULAR TYPE CANCER....nothing looks good. More and more treatments we're finding TODAY are showing good results with long-term results. As well, these good results aren't showing up on the latest notes.

    As well, I'm on a yahoo group for MMMT and can tell you a good chunk of our groupies are survivors 5+ years. This gives all of us hope to know the future can be bright and cheery.

    Keep the faith as your mom will be with the long termers....

    Jan
  • I believe
    I believe Member Posts: 38
    jazzy1 said:

    You're Welcome~
    One other question you might ask, why the mix of drugs they're suggesting for your mom? As mentioned the ones I had -- carboplatin & taxol -- are the first line used most often. But...we all know different strokes for different folks, plus different and new updates for drugs. Curious if nothing else if you have an answer.

    Both the type of docs you suggested are EXCELLENT. Can't remember if this was suggested...DON'T BOTHER TO RESEARCH THIS PARTICULAR TYPE CANCER....nothing looks good. More and more treatments we're finding TODAY are showing good results with long-term results. As well, these good results aren't showing up on the latest notes.

    As well, I'm on a yahoo group for MMMT and can tell you a good chunk of our groupies are survivors 5+ years. This gives all of us hope to know the future can be bright and cheery.

    Keep the faith as your mom will be with the long termers....

    Jan

    Update on doctor's opinion
    Hi Jan,

    I asked the doctor why he is suggesting the drugs Endoxan/Carboplatine instead of Taxol/Carboplatine for my mom, his answer was that Taxol/Carboplatine would be too strong for her taking into consideration that she's 72 years old and have some medical issues (overweight, taking diabetes drugs, cholesterol and blood pressure drugs).

    I told him that I heard that for MMMT and since it is aggressive the standard treatment would be a mixed of both radiation and chemotherapy, he said that is correct but again due to age of my mother and her general health he would recommend a moderate treatment instead of too strong treatment.

    I hope that the proposed treatment would be enough to heal my mother and I will keep you updated with any new information.

    Rab
  • Hilajoan
    Hilajoan Member Posts: 21
    Fayard said:

    Hi Joan,
    I was wondering

    Hi Joan,

    I was wondering how you were doing since surgery.

    Hi Fayard

    I'm so sorry, been a bit busy with surgery, treatment, and on the MMMT Yahoo group mostly.  Below is my 'potted history'

    Didn't go quite as well as planned, but I'm OK again now.  Next scan mid March.   I wouldn't have had the chemo without the lung metastases, and didn't have radiation to the pelvic region.  I know what it can be like after radiation - and think how many CT scans we have and how much radiation we get with those.........

    I guess I'm still in denial....... My hair is already growing back slightly - but not the right colour!!!

    Good luck and love......

    Breast CA, March 2011, mastectomy and radiation (chemo not needed)
    - Started and stopped Arimidex - aches and pains
    MMMT diagnosed November 2011, after hysterectomy.
    MMMT secondaries in lung, August, September 2012, segmentectomy
    Chemo - carboplatin & Abraxane (NAB-paclitaxel) , started Oct. 2012
    - Changed to Paclitaxel, due to allergy, Dec 2012
    Chemo stopped after Feb 1st - Had five carboplatins out of six - and about
    ten taxols out of 18 due to low blood counts, high fever (104!) and FLU!!!

    Next scan mid March. 

  • marti968
    marti968 Member Posts: 37
    I Have MMMT

    3-29 D & C then told 04 02. GYN sent me to GYN Oncologist

    I am 73. I guess I have the rarest MMMT. It is a result of the Fibroid Tumors if I am understanding it correctly.  Or at least I do have Malignant Mixed Muellerian Tumor for those of you who do not know what it is. It is only in the Uterine Area and they left the large Tumor in there after the D and C 3-29-2013. So I am just starting this mess. I was not even going to do a Hysterectomy since I am not in the greatest health with lack of thyroids and Parathyroids, Erratic Blood Sugars due to the thyroid and parathyroid problems. I have Emphysema. Am way over-weight at 205 lbs (used to be 398 in 09-2000 started weight at 119 until these glands were removed. I am only 5 ft 2. I has taken all the years to get down. Any way, Chemo is pretty bad and am not convinced to do it. I cancelled surgery since i am moving. Do not even want to do that really. I do not even know where to start. I live alone and no one has called. I called a hospice and they were helpful for later on when they are necessary. You all seem to have lived a lot longer than I have found on the medical sites that I researched. So that is some hope. So now there are at least  2 of us Carrie. 

     

  • marti968
    marti968 Member Posts: 37
    debrajo said:

    Hi Ellain! Go back to the
    Hi Ellain! Go back to the uterine page where all the questions are. In the left side there is a place where it says "Post new topic" Click there and it will take you to the page where you can post your question/topic. Best, Debrajo(a;so in Texas)

    I wondered how to do that also

    Thanks will go try and see if I can do it.  It shoujld be easier than that.  Should be at the top of the page to give one the choice to post comment or respond to comment.  aoh well just a little thing.

  • marti968
    marti968 Member Posts: 37
    BeckyC said:

    mother with MMMT
    Good Morning,
    I was so interested to read your story because my mother who is 82 was also diagnosedwith uterine cancer in Sept 2012. She had light bleeding but they also found a bloody cancerous mass in uterus after all the tests. She had an abdominal hysterectomy last week ( which only took 1.5 hours thank goodness!) and the surgeon said it was MMMT stage 1C ( at least for now- the pathology isn't back yet) There was no indication that the cancer was outside the utereus but was through the endometrium and myleometrium but not through the serosa. Our gyn/onc however said that due to the extreme agressivness of this cancer my mother will have both chemotherapy and radiation. And she also said her hair would fall out. She hasn't given us the exact chemo drugs yet - needs to get the pathology back and is looking at clinical trials too. I would ask your doctor about radiation - that seems to be very effective against this cancer. My son is a physician (emergency medicine) so not a cancer doctor but says it is VERY important to have a gynecologist/oncologist for treatment of this disease. Doctors are seeing more of this kind of cancer as women are living longer and I think treatment is better. Dont' read survivial stats on the internet - scary. But my son says there are very few studies of this kind of cancer and the high morbidity rates are due to the older age and generally poorer health of many older women.
    I will pray for your mother and wish you the very best. I hope this information helps some!

    Your Situation

    Oh I just learned so much from your comment.  How lucky to have a son as a doctor.  I fit right in with "tBut my son says there are very few studies of this kind of cancer and the high morbidity rates are due to the older age and generally poorer health of many older women.he older person".  Gives more hope this message.