Mullerian Tumor, Class 3, Stage 3

Hi Kathy
I think that is great you started a group.
I look forward to joining and learning more about this rare cancer.
Thank you
Joann

While you were on the chemo-what side effects did you experience?? I was also dx-had a total hysterectomy and now they have found some malignant lymph nodes...guess I will undergo more surgery next week. I would appreciate any information you can share.

I was just wondering what kind of side effects people are experiencing from chemo. I would appreciate any information about what kind of chemo is being used for MMMT, how effective it has been and the side effects.

I am scheduled to have some positive lymph nodes removed tomorrow morning. I had my hysterectomy done in March-had 13 sessions of radiation before I got a c-diff infection and had to stop.....

Thanks!
Bonnie

My mother was recently diagnosed with MMMT she has undergone a full hysterectomy with removal of pelvic and abdominal lymph nodes. We are waiting for the pathological stage of the cancer at this point we know radiation is part of her treatment plan but contigent on the report chemo may also be a treatment option. My mother is having a difficult time with this process, she tries to stay positive but I can hear the "why me?" in her voice. I can only imagine how she feels but will never feel the true depth of what this may be doing to her. Any suggestions? I told her about this sight I am hoping that she will log on and read some of the messages.

My wife was diagnosed with stage IV MMMT last May.
Since then we've been seeing local doctors and also MD Anderson.
While the Chemo prescribed has dropped her tumor markers from 1250 to 65 (it has since risen to 128 and then leveled out because of 7 weeks of not being able to receive treatment due to low blood counts), we are underwhelmed with the communications we have received from the physicians.
First they hinted to us that the 1 yr survival rate was about 5%. Then they hinted that it was "somewhat" normal for chemo patients to drop that fast.
What I don't understand is why the survival rate is so low for stage IV MMMT if the chemo drops the cancer that well in say 50% of patients???
They don't tell us what we are about to deal with. Is it the chemo that kills? Is it that even if the tumor markers get down to normal, they won't stay there? What is the chance that the stuff won't come back, once its in remission?
Its just frustrating to not get straight-forward information from the medical profession.
And yes, she has started receiving treatments again after shots and a transfusion.

A close friend of mine has this cancer and it has spread. Doctors recommend radiation and/or Chemo. What's the best path to take. Also looking for oncologists in Naples , Florida.I would appreciate any help.

Hi Everyone,

Thank you for starting that Yahoo Board, Kathy. I will look there next. I just happened upon this discussion group and was very impressed with the level of concern & support here for people who are sharing experiences with this horrible disease.

My mom was just diagnosed w/Stage 3C uterine cancer. They removed a large mixed mullerian tumor when they removed her uterus. They also removed several lymph nodes that were infected.

She is 76 and extremely weak. I'm encouraging her to have chemo & radiation when she gains her strength. Has anyone used any kind of alternative medicine/therapy in addition to the chemo & the radiation?

Thanks,

Carla

I think its great that you started this group,Ihave writtentotry togetin this group but alas still after over a week, no response. My mom was diagnosed in November with MMMT and there is nothing online toread that is uptodate. Would love more help. The tumor removed was 10cm, stage III, cancer cell found in cervix, had a hysterectomy, started radiation external this week then willdothe internal. Where do I find more info???? Thanks

I don't understand why you were not admitted to the board. I check at least 2x daily (unless I am on the road - and even then I still check often) and I never reject anyone, unless they don't provide a reason for wanting to join. I ask that everyone write 1-sentence to let me know why they are requesting membership (this is only to ensure that people with MMMT or related disease join). If someone does not do this, I always email them back and ask them to provide an explanation. We are a very active group and we welcome any and all who suffer from this disease or its related cousins (including ovarian MMMT and adenosarcoma).

I hope you will try again.

-Kathy

I have been reading all the information on this message board, plus researching other places on the internet. My mother was diagnosed in April of this year with MMMT, at stage 4C. She has since went through chemo and seems to be doing well, although she does seem to have some nerve damage in her finger tips from the chemo.

She choose not to know what her prognosis is but, just try to live her life as she would have before.

As far as the prognosise for this type of cancer there is many web pages available to find out if you choose.
I have found that the research and treatment on this type of cancer is limited since it is so rare.