Recent MMMT Diagnosis - Seeking Advice and Support

I made the following post this morning on the "Are There any MMMT Survivors....." thread, and received several lovely responses. One recommeded that I start a new thread altogether, so that I could better track feedback.  So here goes!  

I am an 89 year old woman recently diagnosed with Stage 4 Mullerian cancer. I lead a busy life, maintain a home, sill drive, and (for the time being) am still out and about most days. I had a hysterectomy last year and a cat scan three weeks post surgery that detected the cancer. Possible causes include having been on estrogen therapy for many decades, and taking tamoxifen during a prior bout with breast cancer (no recurrence since the 1990's). Both estrogen and tamoxifen are now listed as contributing factors to the onset of MMMT. As noted, I was diagnosed as stage 4, and given an original prognosis of approximately 6 months to live (surgery August 2016, and diagnosis in September). After a  subsequent cat scan (December) showed no signs of metastasis my prognosis was revised to (up to) 2 years. While there are no visible metastasis, my cancer antigen blood counts remain high. There was cancer present in my lymph nodes but it was too small to conduct an additional biopsy. I am happy to find this forum as this is a relatively rare form of cancer, so input or advice from others who've had a similar diagnosis, or fought (or are currently fighting) the same disease would be most welcome. My doctor has indicated chemotherapy would be of no benefit, at this point anyway, so my path forward currently involves regular check-ups, including blood tests, and cat scans every two months. I had another scan just 10 days ago, and received a fairly positive report. Of three growths/nodes, or areas they are tracking, two showed no change at all, and one showed a (new) very small growth of just a few millimeters in length. As a result there was no change to my prognosis, and the doctor is still recommending no treatment at this time. I am also making an effort to pursue healthy, cancer fighting nutrition guidelines, and as mentioned, am quite active on a daily basis and have suffered almost no pain thus far. I know this is likely to change at some point, but for now I am taking things one day at a time. I am fortunate to have a strong support group of both family and friends. Any information regarding potential treatments, or trials, or anything else someone feels might prove beneficial as I fight this battle, would be greatly appreciated. I am not interested in debilitating treatments that offer little in terms of an extended life span. That said, I might be willing to consider a difficult course of treatment if it could potentially add even a year or two to my current prognosis.  Given the rapid advances in immunotherapy, and other treatments, an extra year might make a difference with respect to new and improved therapies becoming available.

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Comments

  • Editgrl
    Editgrl Member Posts: 903
    Hi, LMPB1927

    I may have posted on that other thread, but I don't see it now, so I'll try again.  I also was diagnosed with carcinosarcoma in June of 2015.  After my hysterectomy, I was staged at 3C2 with 4 out of 22 lymph nodes testing positive.  I underwent 6 rounds of carbo/taxol ending in Dec. 2015, and 3 rounds of brachytherapy ending 2/24/16.  My first post-treatment scan in May of 2016 was clear, but my next scan in October showed two small suspicious spots. Like you, I was told they were too small or in locations too difficult to biopsy.  Since there was no clear indication that they were indeed cancer, I decided to continue working with a naturopathic oncologist and do a follow-up scan in 3 months.  My scan at the end of January showed those two spots still there with higher uptake as well as 3 more lymph nodes that lit up.  My gyn/onc characterizes them as tiny, not life-threatening at this time, but certainly concerning.  Later this week I will be starting hyperthermia with low-moderate dose chemo along with other supportive therapies.

    I was essentially asymptomatic (one night of spotting sent me to the ob/gyn) and have remained so.  I have always been healthy, eaten essentially an anti-cancer diet and exercised.  The only risk factor I had was having never had children.  I continue to be able to do everything I've always done and feel fortunate to have weathered the chemo I did do fairly easily.

    You sound like you have things pretty well in hand, and it's wonderful that you are staying stable. I personally found it helpful to incorporate a naturopathic oncologist into my medical team to help boost my immune system and make my body less hospitable to cancer.  This is something you may want to investigate.

    Massachusetts General has a research project specific to carcinosarcoma.  You can find information about it at: gcsproject.org.

    Welcome to the board.  Glad that you found us!

  • Lou Ann M
    Lou Ann M Member Posts: 996
    edited March 2017 #3
    Welcome

    Welocome to the club that no one wants to belong to.  You have found a great place to come for advice, information, and suppor.  The ladies here are very knowledgeable and will ing to share.  As my oncologist says " you are one tough cookie."     I dont have the same type of cancer.  Mine is Serous Papillary Endometrial Andocarcinom.  I mainly wanted to say hello and tell you we are here for support.  I have been on a number of different chemo treatments that kept me in the world for four years.  Now I am on the immunotherapy drug, Keytruda.  I have been on it since July of 2016 and am having some decent results.  Most of my tumors are shrinking or staying the same.  I have almost no side effects and feel better than I have for a long time.  I am on a compassionate use program from Merck Pharmaceutica.  

    Hugs and prayers, Lou Ann

  • janaes
    janaes Member Posts: 799
    edited March 2017 #4
    Hi LMPB1927, I was diagnosed

    Hi LMPB1927, I was diagnosed with MMMt back in may 2016.  After my hysterectomy i was staged 2 grade 3.  I did 6 rounds of carbo/taxol.  the last three i changed from taxal to taxotere because my neropathy was increaing.  I was done with chemo october 2016 and did three bracytherapy trearments.  finished that in november.  Im curently living a pretty good life.  I do have some neropathy and have some bone and joint pain left from chemo. 

    I too think you are a great woman and sound very strong in what you are doing. 

    Janae

  • Kvdyson
    Kvdyson Member Posts: 789
    Hello LMBP1927, I read your

    Hello LMBP1927, I read your original post and was blown away by your great attitude and love for life.

    My diagnosis was also MMMT. After surgery, I decided to get a second opinion on both the diagnosis and recommended treatment plan before making any decisions. Not knowing where you are being treated leads me to ask if you have considered getting a second opinion, too? Also, are you being treated by a gyn-onc with experience treating MMMT? As you know, it's fairly rare cancer and not all gyn-oncs have dealt with it before.

    I hope that this is helpful and look forward to hearing about your progress. Best wishes! Kim

  • LMPB1927
    LMPB1927 Member Posts: 6
    Thank you Editgrl, Lou Ann

    Thank you Editgrl, Lou Ann and janaes, it's great to hear from others who are fighting this battle.  The information you've provided has already given me a list of things to ask my doctor during my next visit. I would also like to ask for any suggestions regarding diet or nutrition that others think I might find helpful. I am already pursuing an akaline diet, limiting sugar, etc.  But perhaps there are other things I should be doing also. Thank you everyone!

  • LMPB1927
    LMPB1927 Member Posts: 6
    Kvdyson said:

    Hello LMBP1927, I read your

    Hello LMBP1927, I read your original post and was blown away by your great attitude and love for life.

    My diagnosis was also MMMT. After surgery, I decided to get a second opinion on both the diagnosis and recommended treatment plan before making any decisions. Not knowing where you are being treated leads me to ask if you have considered getting a second opinion, too? Also, are you being treated by a gyn-onc with experience treating MMMT? As you know, it's fairly rare cancer and not all gyn-oncs have dealt with it before.

    I hope that this is helpful and look forward to hearing about your progress. Best wishes! Kim

    Hello Kim, thank you so much

    Hello Kim, thank you so much for the responses, and for recommending I start a new thread, instead of posting on the older one. As far as daignosis, several doctors have seen the scans, and I am fairly confident it is correct.  Deciding on the proper course of treatment is another matter however. For now, since the growth is slow, we're only doing the peridoic checkups and scans. Should the cancer become more agressive, or active we may need to consider other treatment options. And this forum has already been a big help on that front. Unless things change for any reason, I am scheduled for my next scan in mid- April. I will keep everyone posted, and in the meantime will continue to read the forum, and learn what I can from other's experiences.

  • DottieDean
    DottieDean Member Posts: 36
    edited September 2017 #8
    Mullerian

    I have just been diagnosed with mullerian and see my oncologist on tuesday.  Am nervous and having issues with anxiety.

     

     

     

  • DottieDean
    DottieDean Member Posts: 36
    New diagnosis.  See

    New diagnosis.  See oncologist Tuesday.  

     

     

  • Nellasing
    Nellasing Member Posts: 528
    Welcome DottieDean

    I do not have your kind of cancer but wanted to welcome you to the group and tell you that many of the ladies in this thread are still here and will more than likely be along shortly.  We will be thinking about you on Tues. What you are feeling is perfectly normal- be sure to take someone with you or record your session so that you can take in all the information at your pace- it seems like you are drinking out of a firehose at first.  You might also tell them how stressed you are and they can give you a little medical help with that- many have found that helpful especially at the beginning. 

    I know it doesn't seem like it but life is not over.  You have this very day- just like we all do- to LIVE.  There are new things coming out all the time to help.  Don't let anyone tell you you have an expiration stamped on the bottom of your foot because you do not.  Come here as often as you need to ask questions and to keep us updated.   (((HUGS)))

  • DottieDean
    DottieDean Member Posts: 36
    Nellasing said:

    Welcome DottieDean

    I do not have your kind of cancer but wanted to welcome you to the group and tell you that many of the ladies in this thread are still here and will more than likely be along shortly.  We will be thinking about you on Tues. What you are feeling is perfectly normal- be sure to take someone with you or record your session so that you can take in all the information at your pace- it seems like you are drinking out of a firehose at first.  You might also tell them how stressed you are and they can give you a little medical help with that- many have found that helpful especially at the beginning. 

    I know it doesn't seem like it but life is not over.  You have this very day- just like we all do- to LIVE.  There are new things coming out all the time to help.  Don't let anyone tell you you have an expiration stamped on the bottom of your foot because you do not.  Come here as often as you need to ask questions and to keep us updated.   (((HUGS)))

    Thank you.  I needed those

    Thank you.  I needed those words.

  • Kaleena
    Kaleena Member Posts: 2,064 Member

    Thank you.  I needed those

    Thank you.  I needed those words.

    Diagnosis

    Hello Dotti:

    Sorry you had to come to this site.   But welcome as the ladies on these boards are very comforting and caring.   I was diagnosed with mullerian/endometrial Stage 3a, Grade 2 because they couldn't determine where the primary was as I had it in my uterus, cervix and left ovary.   Talk about confusing.   The current records indicate it as endometrial adenocarcinoma but were treating it as ovarian.   To give you some comfort, that was 12 years ago this month.   It is a bumpy ride but you can do it.   If you need to vent or talk this is the place.   

    My best to you on your upcoming tests and appointments.

    Hugs.

    Kathy

  • Kvdyson
    Kvdyson Member Posts: 789
    edited September 2017 #13

    Thank you.  I needed those

    Thank you.  I needed those words.

    DottieDean, I was diagnosed

    DottieDean, I was diagnosed with MMMT (Malignant Mixed Müllerian Tumor) also known as CarcinoSarcoma back in September 2015. Surgery and treatment are no fun but they are do-able. Please try to remain hopeful. We are here to help you. Kim

  • jodil
    jodil Member Posts: 42
    edited November 2017 #14
    mmmt

    I am 59 and just diag w/ mmmt on 10/2/17 after having spotting-I had been post menopausal for several yrs. on 10/24 had radical hyster. The day before the hyst, I was required to have a colonoscopy and it was discovered it had spread to my colon. So, at the same time as hyst, I had colon surgery to remove the mass.  I am having a line installed on 11/30 and scheduled to begin chemo on 12/6.My docs, after discussing w/ "tumor board" decided to address the stage 3 uterine cancer first and then the stage 3 colon cancer. Needless to say I am terrified. Wondering how I will manage the chemo and return to work.  

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,999 Member
    jodil, please, take a breath.

    jodil, please, take a breath.  

    Everyone is different but I know the othe women will be along to tell you there experiences and helpful tips.  

    I worked through it all.  I was out for the two weeks of/after surgery and then chemo was an entire day - period.  If they give you steroids, and they probably will, be sure that they step you down on your dosage over a few days.  Chemo constipates so Miralax is your new friend, and there are great anti-nauseau drugs out there.  

    If you ever have questions don't hesitate to call the doctor's office and ask.  I didn't meet with a dietician who specialized in helping cancer treatment patients until I was in my radiation phase (radiation was sandwiched in between the chemo) and that was very helpful.  

    I am sorry you have had to find us but you are welcomed with open arms.  There are terrific women here and you are not alone.

  • janaes
    janaes Member Posts: 799
    I was diagnosed with MMT

    I was diagnosed with MMT stage 2 grade 3 May 2016. This diagnosis stuff is hard but you are not alone. I was scated too to do chemo and face all the stuff ahead.  This group helped put my fears at bay.   Please feel free to come here to share your feelings we understand and have been there.

  • jodil
    jodil Member Posts: 42
    mmmt

    thank you! I'm glad there is a palce to talk to others. 

  • derMaus
    derMaus Member Posts: 558
    edited November 2017 #18
    Dedicated MMMT Resource

    I found this website awhile back and I think it's excellent, especially the videos. I don't have this particular type of cancer, but it still helps me when I'm feeling down. 

    http://gcsproject.org

     

  • jodil
    jodil Member Posts: 42
    derMaus said:

    Dedicated MMMT Resource

    I found this website awhile back and I think it's excellent, especially the videos. I don't have this particular type of cancer, but it still helps me when I'm feeling down. 

    http://gcsproject.org

     

    gcs

    thank you SO much for that website! Very hel[pful!

  • txtrisha55
    txtrisha55 Member Posts: 693
    edited December 2017 #20
    I have not been online for

    I have not been online for awhile but thought I would respond on this thread.  I was dx in 2011 with grade 3stage 3c1 MMMT.  I had surgery. I had 6 rounds of chemo of carbo / taxol and no radiation.  It has been 6 1/2 years with no recurrence.  There is hope.  Trish

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Great to hear from you Trisha

    Great to hear from you Trisha. I hope all is well. Congrats on your continued dance with NED.

    Love and Hugs,

    Cindi