Malignant Mixed Mullerian Tumor of the Ovary

paula57

I have read alittle about this type of cancer and it did say that it is rare but when I type in Mixed Mullerian it comes back paula57. That's me! Is there anyone else that has this cancer. I recently finished my chemo and doing okay for now. I am having alot of knee and mainly hip pain. I called the Dr office and they just called me in some pain medicine. I still had a half of a bottle but oh well, I don't want to run out. My next appointment is in Sept. Any information would be appreicated. Thanks! Paula

AuthorUnknown

Have you found anyone else Paula. This is a very rare gynecological cancer

paula57

AuthorUnknown said:

Have you found anyone else Paula. This is a very rare gynecological cancer

No, I have still not found anyone with this type. I wish that I could. My CA-125 is on the rise but a CAT-SCAN didn't show anything. Thanks for replying.

bizzyfingers

paula57 said:

No, I have still not found anyone with this type. I wish that I could. My CA-125 is on the rise but a CAT-SCAN didn't show anything. Thanks for replying.

I have mixed mullerian Cancer stage IV
Hey there Paula! Looks like we have at least one thing in common -- MMMT. I was diagnosed last August 2008 and have had 6 rounds of chemo - carboplatin and Taxol, which shrunk the tumors so that I could have IPHC surgery at Wake Forest. It was a 9 hour surgery; they cut you from your sternum all the way to your pubic bone. THey remove all the cancer that they can visibly see and then add heated chemo to your peritoneal area and gently manipulate it throughout the peritoneum. I go back to Wake Forest next month for my first CT scan w/contrast, lab work and then to talk to the doc. I sure hope he has good news for me. We all need hope, without it there is not much we can do. If there is anything I can help you with, just let me know. How are you doing?

Trish

lynnie9

bizzyfingers said:

I have mixed mullerian Cancer stage IV
Hey there Paula! Looks like we have at least one thing in common -- MMMT. I was diagnosed last August 2008 and have had 6 rounds of chemo - carboplatin and Taxol, which shrunk the tumors so that I could have IPHC surgery at Wake Forest. It was a 9 hour surgery; they cut you from your sternum all the way to your pubic bone. THey remove all the cancer that they can visibly see and then add heated chemo to your peritoneal area and gently manipulate it throughout the peritoneum. I go back to Wake Forest next month for my first CT scan w/contrast, lab work and then to talk to the doc. I sure hope he has good news for me. We all need hope, without it there is not much we can do. If there is anything I can help you with, just let me know. How are you doing?

Trish

MMMT
In May 2008 complete hysterectomy with MMMT. Caused they think from tamoxifen I took after lumpectory in breast 1999. Took 6 chemo treatments just in case a cell slipped out . They thought everything was contained in uterus. Now it has matastisized to left lung. Tumor size of silver dollar. I started radiation today for 25 to 35 treatments to shrink the tumor. Then cyberknife (thank heavens for that) and the 3 toxic chemos for I don't know how many treatments. PET scan shows cancer no where else. Tumor closes off half of bronchial tube entrance and a little top of my lung collasped. I'll turn seventy in 6 days. They say it's odd for uterine cancer to go to lung.

wingsoflight

lynnie9 said:

MMMT
In May 2008 complete hysterectomy with MMMT. Caused they think from tamoxifen I took after lumpectory in breast 1999. Took 6 chemo treatments just in case a cell slipped out . They thought everything was contained in uterus. Now it has matastisized to left lung. Tumor size of silver dollar. I started radiation today for 25 to 35 treatments to shrink the tumor. Then cyberknife (thank heavens for that) and the 3 toxic chemos for I don't know how many treatments. PET scan shows cancer no where else. Tumor closes off half of bronchial tube entrance and a little top of my lung collasped. I'll turn seventy in 6 days. They say it's odd for uterine cancer to go to lung.

MMMT response!
I am sorry to hear that it spread to your lungs. That frightens me because I was just diagnosed two months ago with MMMT, had a complete hysterectomy, and am supposed to start chemo within two weeks. After hysterectomy, my lymph nodes were clear, but there were a few "small spots" left behind. The chemo they are advising is cisplatin and ifosfamide. Is that what you had? I am supposed to be in the hospital for four days each time it is administered because of nausea, toxic effects, and "disorientation". What was your experience?

I don't mean to go on about myself. Lung cancer is frightening, you must have been heartsick when you found out it spread. Our type of cancer appears to be so rare, my husband says I am "One in a Million", but I could do without this! Best of luck to you, God Bless. I would appreciate anything you could share about your experience if you would like to share more. Wingsoflight

Unknown

This comment has been removed by the Moderator

18Squash

MY BEST FRIEND HAS MMMT.......
Hello:

Hope you are still doing OK....I have my very best friend in the world who was diagnosed with MMMT three weeks ago...She is very weak and still in the hospital fighting this...She is in Stage III, and hysterectomy radical was the surgery performed....She is too weak for CHEMO yet....so Dr's have suggested palliative care for now.....She has a hard time talking, is throwing up some still.....cant even get out of the bed now it has been three weeks,,,,,,,,,On PAIN meds because she complains of total body pain....

I am wondering if some type of Immune Therapy or Nutritional Therapy will help at all....The situation looks dire at the moment!!!!!!!!!!!

IF ANYONE HAS ANY COMMENTS OR SUGGESTIONS THAT WOULD BE VERY HELPFUL.....
Prognosis says up to 2 years???.I am hoping they are wrong!!!!!!
THANKS
MAR

Shishakly

lynnie9 said:

MMMT
In May 2008 complete hysterectomy with MMMT. Caused they think from tamoxifen I took after lumpectory in breast 1999. Took 6 chemo treatments just in case a cell slipped out . They thought everything was contained in uterus. Now it has matastisized to left lung. Tumor size of silver dollar. I started radiation today for 25 to 35 treatments to shrink the tumor. Then cyberknife (thank heavens for that) and the 3 toxic chemos for I don't know how many treatments. PET scan shows cancer no where else. Tumor closes off half of bronchial tube entrance and a little top of my lung collasped. I'll turn seventy in 6 days. They say it's odd for uterine cancer to go to lung.

MMMT
My mom was diagnosed with MMMT , she took her first carboplatin yesterday , she is 62 yrs old . Dr said , it's now in the liver any survivors out there ?

Shishakly

18Squash said:

MY BEST FRIEND HAS MMMT.......
Hello:

Hope you are still doing OK....I have my very best friend in the world who was diagnosed with MMMT three weeks ago...She is very weak and still in the hospital fighting this...She is in Stage III, and hysterectomy radical was the surgery performed....She is too weak for CHEMO yet....so Dr's have suggested palliative care for now.....She has a hard time talking, is throwing up some still.....cant even get out of the bed now it has been three weeks,,,,,,,,,On PAIN meds because she complains of total body pain....

I am wondering if some type of Immune Therapy or Nutritional Therapy will help at all....The situation looks dire at the moment!!!!!!!!!!!

IF ANYONE HAS ANY COMMENTS OR SUGGESTIONS THAT WOULD BE VERY HELPFUL.....
Prognosis says up to 2 years???.I am hoping they are wrong!!!!!!
THANKS
MAR

MMMT
My mom is going through exactly the same thing , did you find any help ?

kehoops

Shishakly said:

MMMT
My mom is going through exactly the same thing , did you find any help ?

There is a place to go for more information
There is a yahoo support group for MMMT where there are hundreds of members - many with inspiring and uplifting stories of long term survival! Please come and say hello.

http://groups.yahoo.com/group/UterineMMMT/

FriendOfAWarrior

Mullerian Ovarian Cancer
Dear Paula,

As I am writing this, I pray you are well and have won the fight.

My best friend has Mixed Mullerian, stage 4. We are lost, and I am searching for treatments.

Would love to know the treatment and details of your journey.

Thank you,
Jan

minahkim

FriendOfAWarrior said:

Mullerian Ovarian Cancer
Dear Paula,

As I am writing this, I pray you are well and have won the fight.

My best friend has Mixed Mullerian, stage 4. We are lost, and I am searching for treatments.

Would love to know the treatment and details of your journey.

Thank you,
Jan

MMMT

Hello,

 

My mom got diagnosed with ovarian Mixed Mullerian. I would love to know about best oncologist and treatment, etc.

 

Best,

Minah

bugsnplants

minahkim said:

MMMT

Hello,

 

My mom got diagnosed with ovarian Mixed Mullerian. I would love to know about best oncologist and treatment, etc.

 

Best,

Minah

ovarian mixed mullerian tumor

I was diagnosed with MMMT of the ovary, stage 4 -  in January 2007. After surgery by a oncologic gynecologist (be sure to see such a specialist) and 5 rounds of chemotherapy, I am not cured, but the cancer is continually being knocked back and now I feel quite well. Hard to separate chemo weariness from general age weariness - I am 80. Never expected to reach that age, so be encouraged, try to maintain a positive attitude, and do not give up!

My first 3 rounds (6 treatments to a round) were with carboplatin and taxol. Next round employed carboplatin  gemcitabine and avastin. Had to eliminate the Avastin due to side effects like sending blood pressure way up. So last round of chemo was just witn carbo and gemcitabine. 

My CA 125 which was once 3100 was brought down to normal range (35) after each round of chemo. Unfortunately the length of time between rounds gets shorter each time. But hey, nobody lives forever...

Ocalagal99

Forum for MMMT

Hi, Paula,

I just had to register as I was diagnosed with MMMT in my uterus, localized, and will have surgery next week.

I did find a thread on MMMT so here it is:  Hope you find something therel

http://csn.cancer.org/node/179355

Ziva

Ovarian MMMT

I am wondering if theres anybody out there with this type of cancer and would like to chat? I was diagnosed in Oct 2014

Alexandra

Ziva said:

Ovarian MMMT

I am wondering if theres anybody out there with this type of cancer and would like to chat? I was diagnosed in Oct 2014

MMMT

Hello Ziva,

Please repost your question on Ovarian or Uterine board. You are more likely to get responses there.

pengelhard1

Mixed Mullerian here as well!

Hi Paula...I am Mixed Mullerian as well.  Stage lllc and recurrence.

How are you doiNG?

 

Pat

pengelhard1

bugsnplants said:

ovarian mixed mullerian tumor

I was diagnosed with MMMT of the ovary, stage 4 -  in January 2007. After surgery by a oncologic gynecologist (be sure to see such a specialist) and 5 rounds of chemotherapy, I am not cured, but the cancer is continually being knocked back and now I feel quite well. Hard to separate chemo weariness from general age weariness - I am 80. Never expected to reach that age, so be encouraged, try to maintain a positive attitude, and do not give up!

My first 3 rounds (6 treatments to a round) were with carboplatin and taxol. Next round employed carboplatin  gemcitabine and avastin. Had to eliminate the Avastin due to side effects like sending blood pressure way up. So last round of chemo was just witn carbo and gemcitabine. 

My CA 125 which was once 3100 was brought down to normal range (35) after each round of chemo. Unfortunately the length of time between rounds gets shorter each time. But hey, nobody lives forever...

Mixed Mullerian Treatments

Hi Bugsnplants.  I too am Mixed Mullerian.  Just going through my first reccurence now and stressed to the max...any advice would be greatly appreciated as I am wading through treatment and doctor options, clincial trials vs regualr doctor locally..

 

Pat

NoTimeForCancer

pengelhard1 said:

Mixed Mullerian here as well!

Hi Paula...I am Mixed Mullerian as well.  Stage lllc and recurrence.

How are you doiNG?

 

Pat

Pat, as Alexander recommended

Pat, as Alexander recommended visit the Uterine board (on this site) and you will find other women with MMMT.  There are survivors there who are happy to give you support. 

Bev73

NoTimeForCancer said:

Pat, as Alexander recommended

Pat, as Alexander recommended visit the Uterine board (on this site) and you will find other women with MMMT.  There are survivors there who are happy to give you support. 

MMMT

I just received a diagnosis of MMMT cancer on Monday 10-5-2015.  I am 73 years old and in mid August I experiened inappropriate bleeding for a week or so.  I scheduled an appointment with a gynecologist for 9-02-2015.  Then I had an ultrasound, biopsy and pap smear on 9-5-2015.  On 9-24-2015 I had a robotic complete hysterectomy.  Cancer cells were found in uterus and on ovaries.  Of course since I had a complete hysterectomy those are gone now.  On 9-29-2015 I had an abdomenal and pelvic CAT.  Cancer cells are present in the omentum and on 10-21-2015 I will have surgery to remove as much as they can of the omentum and any signs in lymph nodes, nodules etc. that they find at that time.  Then  three weeks or so later I will start chemo/radiation treatments.  I have to meet with a medical oncologist to discuss my treatment plan.

I am hoping to maintain a postitive attitude given the rarity of this cancer.  I am told there is not a lot of research available since it is such a small number of women with this diagnosis.  I found a couple of studies but they were 10 years old (2005) and I decided not to read them.  I am looking for positive resources so I can increase my chances of long term survival.  I found this site this morning and decided to join in and hopefully share support with others battling this cancer.