Ovarian / Mixed Mullerian Cancer

JanBlue

Hello,

I have a relative who was recently diagnosed with Mixed Mullerian Cancer Stage IV.  I understand this type of cancer is rare and I have attempted to do my own research and I haven't come up with much.  I would appreciate if you or anyone you know has personally experienced this type of cancer, could give any feedback or are willing to share a personal experience, it would mean the world to me.  I have to continue to be positive and strong for my family and I am praying that I can help my relative fight this.

Thank you in advance!

Jan Blue

LorettaMarshall

JanBlue~references 4 research but nothing too positive~so sorry

Dear Jan Blue ~

 While I have found several references relative to MMMT, I regret to say that, like you, I find nothing uplifting about any of the research I’ve found.   Personally, you’re doing the right thing to try to help your relative, but honestly, this is a rare and aggressive cancer without a positive prognosis.  And as for research, I think you’ve found the same kind of info that I have come across.  To be brutally blunt, from what I’ve read, it looks like a long road with no good news at the end.  I think I have the freedom to say that since my own cancer is Stage IV falls in that category.  Ultimately all the chemo/radiation will reach a point at which it will not continue have any effect.  The most I can do is to trust the Lord day by day and follow His guidance.  He has given me peace in my soul, but my cancer is still terminal. 

 I am so sorry that this type of tumor is so “immune” to treatment.  So the best I can suggest is that you read this info and compare it with what her doctors suggest as a method of treatment.  My heart aches for you and for your relative.  I can only tell you as a “Stage IV” patient myself, it can be awfully difficult to put one foot in front of another when all things seem to be going “backward” instead of improving.  There are days like that. 

 I’m sorry that I can’t be of any help, except to say show her as much love as you can, listen to her heartbreaking story and be there in person for her.  Naturally, the first thing we want to find is that “YES—this cancer can be conquered”, but such is not always the case.  Perhaps others here will be able to be more positive as to survival prospects, but the “realist” in me says, “Oh this is not good Jan—this is not good!” 

 If I were you, I would print out all these references.  “Oncolink” suggest “carcinosarcoma of uterus is another term used when looking up info for MMMT.  “…information regarding chemotherapy effectiveness for tumors of the uterus should also hold true for tumors of the ovary.”

May I make a suggestion?  If you’re really close to this relative, perhaps they could add your name to the list of people that can discuss her condition with all her doctors.  If your name isn’t on the list, the info you get from nurses and doctors will be limited.  But if your name is on the list, you will be able to talk personally with her doctors.  In that way, you will be able to understand, exactly what their prognosis for this cancer.  Don’t be afraid to ask frank questions.  If possible, accompany her to the doctor, and take notes.  Once more all I can say, is it grieves me to read of another Stage IV patient with an aggressive cancer like this one. 

Love & prayers,

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

 1.  https://www.ncbi.nlm.nih.gov/pubmed/9822362 “…Prolonged survival of stage IV malignant mixed Müllerian tumor of the ovary after carboplatin, mesna, ifosfamide, and cis-platin chemotherapy: case report.  Di Vagno G¹, Cormio G, Loverro G, Melilli GA, Di Gesù G, Selvaggi L.

 Author information – Abstract - Malignant mixed müllerian tumors (MMMT) of the ovary are rare, aggressive and rapidly progressive tumors. According to the available literature, the presence of metastatic disease rarely permits long term survival. We report on a 64-year old patient with stage IV ovarian MMMT who achieved a surgically-documented complete response (CR) after 6 cycles of carboplatin, mesna, ifosfamide, cis-platin. Pelvic recurrence was diagnosed 14 months later; the patient received 6 cycles of the same regimen used as first-line chemotherapy which resulted in a second complete response lasting for 4 months. The patient died 37 months after initial diagnosis due to intestinal occlusion. In the current case Ca 125 was significantly increased at clinical presentation of disease but not at the time of recurrence…”

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 2.  https://www.ncbi.nlm.nih.gov/pubmed/17292457

 Gynecol Oncol. 2007 May;105(2):399-403. Epub 2007 Feb 9.

 “A pilot study of cisplatin, ifosfamide and mesna in the treatment of malignant mixed mesodermal tumors of the ovary.

 Crotzer DR¹, Wolf JK, Gano JB, Gershenson DM, Levenback C. - Author information

 Abstract - PURPOSE:

 To evaluate the efficacy and toxicity of cisplatin and ifosfamide in the treatment of patients with malignant mixed mesodermal tumor (MMMT) of the ovary.

 METHODS: - Ten patients with histologically confirmed primary MMMT of the ovary diagnosed between 1993 and 2001 were enrolled in the study. Treatment consisted of cisplatin 75 mg/m2 on day 1, followed by ifosfamide 2.0 g/m2 over 24 h on days 1, 2 and 3. Mesna, 400 mg/m2, was given IV immediately prior to and 4 and 8 h after the start of each ifosfamide infusion. Chemotherapy was repeated on a 28-day cycle if blood counts permitted. Standard response criteria were used. Nine patients were evaluable for response.

 RESULTS: - Eight of the nine patients responded to therapy, with 7 complete responses (78%) and 1 partial response. Seven of the eight responders (87.5%) eventually recurred. The median progression-free survival was 10 months (range 0-94.4 months). The median overall survival was 17.1 months (range 8-125.5 months). One patient remained free of disease 94.4 months after diagnosis, and one patient remained alive with recurrence 125.5 months following diagnosis. There were 13 grade 3 toxicities and 4 grade 4 toxicities. Four patients had grade 4 and three had grade 3 neutropenia, all of which required dose reductions.

 CONCLUSION:- The combination of cisplatin and ifosfamide/mesna demonstrated activity against MMMT of the ovary. Response durations were short, however, and the regimen was associated with significant toxicity. Novel agents with activity against MMMT of the ovary and acceptable toxicity are needed.”

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 3.  https://www.ncbi.nlm.nih.gov/pubmed/22007228

 ·         “…Format: Abstract - Uterine carcinosarcomas (malignant mixed müllerian tumours): a review with special emphasis on the controversies in management.

 Kanthan R¹, Senger JL. - Author information - ¹Department of Pathology and Laboratory Medicine, University of Saskatchewan, Saskatoon, SK, Canada S7N 0W8.

 Abstract - Uterine carcinosarcomas (MMMT-malignant mixed Müllerian tumours) are highly aggressive, rare, biphasic tumours composed of epithelial and mesenchymal elements believed to arise from a monoclonal origin. While hysterectomy with bilateral salpingo-oophorectomy remains the mainstay treatment, high rates of recurrence and metastases suggest a need for lymphadenectomy and postoperative adjuvant treatment. There are no established consensus guidelines for therapeutic patient management. Though well recognized that it improves locoregional control, the role of radiation in improving overall survival outcomes remains undecided. Although various combinations of chemotherapy have been explored, an optimal therapeutic modality is yet to be determined. As overall survival rates have not improved in thirty years, it is suggested that targeted chemotherapy and/or a multimodality approach may yield better outcomes. This paper provides a summary of the aetiopathogenesis of carcinosarcomas (MMMT) limited to the uterus with special emphasis on the controversies in the management of these patients…”

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 4.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3622448/

 “…Due to the aggressive nature and poor prognosis of MMMTs, various therapeutic modalities have been employed. Surgical management should include total abdominal hysterectomy and bilateral salphingo-oophorectomy, infracolicomentectomy, bilateral pelvic and para-aortic lymphadenectomy. The role of combined adjuvant radiotherapy and chemotherapy still remains to be defined. Historically, ifosfamide alone was considered the most effective drug; now, based on the GOG 161 study, ifosfamide/paclitaxel is considered the standard of care [9]. Recent data suggests that paclitaxel/carboplatin is equally effective [10] as adjuvant chemotherapy. This regimen was practiced in our study. Even with these aggressive therapies, the five-year overall survival is approximately 20–30% [8]. In our study, the estimated EFS at two years was 30%, with most recurrences occurring within one year…”

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 5.  https://www.oncolink.org/frequently-asked-questions/cancers/gynecologic/ovarian-cancer/malignant-mixed-mullerian-tumor-mmmt-of-the-ovary

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 6.  http://sarcomahelp.org/carcinosarcoma.html

 “Introduction - Carcinosarcoma of the uterus (also known as malignant mixed Mullerian tumor, MMMT) is a highly aggressive form of uterine cancer.^1-3 Even though it constitutes about 3-4% of uterine malignancy overall, it accounts for a disproportionate percentage of mortality associated with uterine malignancy. As its name implies, this is a biphasic (two-component) tumor which contains an admixture of carcinoma (cancer showing epithelial differentiation) and sarcoma (cancer showing mesenchymal differentiation) components. In the great majority of uterine carcinosarcoma, both the carcinoma and the sarcoma components are histologically high-grade. While a number of groups have previously demonstrated that the carcinoma and the sarcoma components represent the same disease based on X-chromosome inactivation pattern and TP53 hotspot mutation sequencing studies,^4,5 it is not certain whether uterine carcinosarcoma starts out as carcinoma that undergoes sarcomatous transformation or as sarcoma that undergoes epithelial differentiation (similar to other biphasic sarcomas like synovial sarcoma)…”

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7.  https://www.hindawi.com/journals/ogi/2011/470795/

 Review Article - Uterine Carcinosarcomas (Malignant Mixed Müllerian Tumours): A Review with Special Emphasis on the Controversies in Management

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 8.  https://www.cancer.org/cancer/uterine-sarcoma/treating.html

 “Treating Uterine Sarcoma - Considering treatment options”

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9.  https://gynommmt.wordpress.com/resources/

"MMMT – Carcinosarcoma is so rare that the heading “Experts” is certainly a misnomer.  This list is more accurately one of  Doctors and Hospitals that have (at least) some experience treating patients with MMMT.  This list is being compiled from statements made by MMMT patients and loved ones here and  on the Uterine MMT Yahoo Group.  This list  does not constitute an endorsement by this site.  It is for the purpose of assisting people to find Medical Professionals who are known to have some experience with MMMT..."

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10.  http://sarcomahelp.org/carcinosarcoma.html

 "...Carcinosarcomas or malignant mullerian mixed tumors (MMMT) contain malignant epithelial (carcinoma) and mesenchymal (sarcoma) components. These tumors can arise in any organ of the female genital tract such as vulva, vagina, cervix, endometrium, ovary or fallopian tube. Endometrium is the most common site. These tumors tend to occur in post-menopausal women although rarely are reported in younger women. Clinically, patients with uterine MMMT present with abnormal vaginal bleeding or pelvic or abdominal pain. Uterine carcinosarcomas generally have a worse prognosis compared to uterine carcinomas with a five year survival rate ranging from 5% to 40%. The most important prognostic factor is tumor stage..."

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tzenor

Mullerian Tumor

My mother recently passed from this disease, she was 64, my sister and I did everything we could to find out information. There isn't a lot of information because it's a newer strain. Life span is about 5 yrs can be more depending on a lot of factors. No matter what never let a doctor tell you this is a death sentence. Keep fighting. God bless you, I hope for a long life with your family

NoTimeForCancer

tzenor said:

Mullerian Tumor

My mother recently passed from this disease, she was 64, my sister and I did everything we could to find out information. There isn't a lot of information because it's a newer strain. Life span is about 5 yrs can be more depending on a lot of factors. No matter what never let a doctor tell you this is a death sentence. Keep fighting. God bless you, I hope for a long life with your family

tzenor, respectfully I will

tzenor, respectfully I will say no one knows our 'shelf-life' so we do our best to share our information and encourage each other.  

I am so sorry to hear about the loss of your mother.  She was too young and my heart breaks for you and your sister and I am sure you two did everything you could.  No doubt your mother did a wonderful job raising loving daughters. 

dlpeter03

Just diagnoses ... VERY scared

 

  I was just diagnosed with stage 3a Mixed Mullerian Ovarian Cancer.  I had a 23  cm sized tumor removed on August 7th with some metastasis to diaphram wall.

  The Dr. has told me I will need 2 years of chemotherapy -

  Carboplastin + Pacitaxel + Bevacizumab  

  Any one else have experience with this?  from what I read here the outlook is grim.

LorettaMarshall

dlpetre03~Don't have same DX but use the same chemo drugs

Dear dlpeter03

Was just getting ready to go to bed and thought I’d check the site.  I see you have just posted about your diagnosis.  One thing I can tell you is that the Carboplatin/Paclitaxel (Taxol) have served me well although not without side effects.  However, I am still alive almost 6 years later after initial diagnosis of terminal Ovarian Cancer back in November of 2012.  I have NOT had the Bevacizumab. 

You can check out the site Chemocare.com and you will see the drugs listed, the different side effects, etc.  I will be blunt and tell you don’t fret too much about the hair loss which comes along with Taxol.  I haven’t known anyone who hasn’t lost their hair about 3 weeks after the first treatment.  But it will grow back.

And I hope you will be having a medi-port put in prior to the start of these treatments.  A radiologist will put it in.  I didn’t find it painful, and any meds you need can be given through the port.  Don’t risk getting all your veins broken down by getting “stuck” each time you have a treatment.

My regimen consisted of 6 treatments, each 3 weeks apart.  My doctor did a PET/CT scan in the beginning, in the middle, and again at the end to determine the effectiveness of the drugs. I’ve had several of these regimens now, and hopefully your treatment will show good results and give you a long period of progression free survival (PFS).  So if there is any “taking heart” I think the drugs will serve to knock back the cancer and Stage 3 is always better than Stage IV.  So I’ll pray for you and wish you well on this, yes scary journey.

I’m sorry you have been diagnosed but we here know what it’s like to be shocked with some cancer we never dreamed we would encounter.  Even though we don’t all have the same types or stages of cancer, I know that many women here pray for one another.  Be sure to research your cancer as much as you can, and don’t be afraid to ask questions of the doctor, and also, if you’re not totally comfortable with the medical team you have—to have a SECOND opinion.  It’s your life and you want to feel as much “in control” as possible. 

Love Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV since Nov. 2012

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1. http://www.chemocare.com/chemotherapy/drug-info/carboplatin.aspx

2.  http://www.chemocare.com/chemotherapy/drug-info/Paclitaxel.aspx

(23 cm = 9.05511811 inches)

 

3.  http://csn.cancer.org/node/301646 - A letter I wrote to "Brian" when his mom was beginning chemo treatments.  Perhaps something I've experienced might be of help to you.

 

"BRIAN from the North~Things I learned during my chemo treatments~Hope it will B helpful 2 U & Mom~Wishing her all the best!"