Are there any other MMMT survivors out there?

mlshep

Forherself said:

Hi mishep

Are you new to the board?  It is a wonderful place to learn about other women's experience with this disease.  You have posted at the bottom of an old post, which makes it hard to find.  You could make a comment all youur own.  There are lots of women who hae had gehomic testing and would be happy to discuss it.  It would be easier to find in a new thread.

Forherself

Thanks, I will try a new post, this board is confusing to me.

LizaL

marti968 said:

MMMT meaning

Malignant Mixed Müllerian Tumors  I am still here after 3 years. Marti in AZ USA 

Hi I was recently diagnosed with MMMT in vaginal and cervix. I received two chemo treatments but the cancer did not respond to the treatment. My doctor suggested hospice, but I still want to fight this disease. Las Vegas has very few doctors that specializes in MMMT. Can anyone suggest doctors for me. please Help.

cmb

LizaL said:

Hi I was recently diagnosed with MMMT in vaginal and cervix. I received two chemo treatments but the cancer did not respond to the treatment. My doctor suggested hospice, but I still want to fight this disease. Las Vegas has very few doctors that specializes in MMMT. Can anyone suggest doctors for me. please Help.

See new post

I've responded in a new thread to make it easier for other to share their experiences as well.

magicpam

LizaL said:

Hi I was recently diagnosed with MMMT in vaginal and cervix. I received two chemo treatments but the cancer did not respond to the treatment. My doctor suggested hospice, but I still want to fight this disease. Las Vegas has very few doctors that specializes in MMMT. Can anyone suggest doctors for me. please Help.

MMMT

Hi Liza,

I also have MMMT uterine cancer, diagnosed Nov.1, 2018, had the total hysterectomy Nov. 29, 2018. I was to start chemo in January, but got a cold and couldn't start while sick, and then I read so much about chemo and natural remedies, that I was scared to start chemo. I found a natural clinic in Mexico called Sanoviv, which was very expensive ($15,000.00) for 2 weeks, but my brother in law loaned us $10,000, and we emptied a couple of savings account. It was a very nice and organic retreat with every room with an ocean view. It felt very healing, but a Pet scan revealed that it had metastasized in 3 areas, small 1 cm spots in LIver, Sigmoid colon and Peritoneal lining. I went for 3 consultations and decide on CTCA (Cancer Treatment Centers of America) in Goodyear, AZ. I have Blue Cross insurance and CTCA pays for my flight there from Los Angeles, a shuttle picks me up at the Phoenix airport to the Red Lion Inn which is $50 a night, and a shuttle every 30 minutes from hotel to CTCA.  I have only had 2 chemo treatments so far, Carboplatin/Paclitaxol, but the side effects are minimal so far. They combine meds in the infusion to help with nausea, etc. and for 4 days after I take a steroid and anti-nausea meds. I haven't had any nausea whatsoever, some fatigue, and joint pain, and lost my hair, but after about a week, I feel normal. I also see a Naturopath, who tells me which supplements to take or not take with chemo, and a nutritionist who helps me navigate my diet, as well as an acupuncturist and chiropractor to support my immune system, all are at CTCA. I don't have results yet, I will get another PET/CT scan after my third infusion, to see. if it is working. They also have Precision medicine via Foundation One there, but my tumor showed no DNA mutation matches other than Keytruda, which will most likely be next treatment if chemo doesn't work. There is also the GCS (Gyno-Carcino Sarcoma) project in Alabama that does 30 minute video second opinon videos for $2,500.00. I wish you well, I would check out CTCA if I were you. There are no guarantees with any doctor with this cancer, but I like how integrative CTCA is. I am doing really well so far!

cmb

magicpam said:

MMMT

Hi Liza,

I also have MMMT uterine cancer, diagnosed Nov.1, 2018, had the total hysterectomy Nov. 29, 2018. I was to start chemo in January, but got a cold and couldn't start while sick, and then I read so much about chemo and natural remedies, that I was scared to start chemo. I found a natural clinic in Mexico called Sanoviv, which was very expensive ($15,000.00) for 2 weeks, but my brother in law loaned us $10,000, and we emptied a couple of savings account. It was a very nice and organic retreat with every room with an ocean view. It felt very healing, but a Pet scan revealed that it had metastasized in 3 areas, small 1 cm spots in LIver, Sigmoid colon and Peritoneal lining. I went for 3 consultations and decide on CTCA (Cancer Treatment Centers of America) in Goodyear, AZ. I have Blue Cross insurance and CTCA pays for my flight there from Los Angeles, a shuttle picks me up at the Phoenix airport to the Red Lion Inn which is $50 a night, and a shuttle every 30 minutes from hotel to CTCA.  I have only had 2 chemo treatments so far, Carboplatin/Paclitaxol, but the side effects are minimal so far. They combine meds in the infusion to help with nausea, etc. and for 4 days after I take a steroid and anti-nausea meds. I haven't had any nausea whatsoever, some fatigue, and joint pain, and lost my hair, but after about a week, I feel normal. I also see a Naturopath, who tells me which supplements to take or not take with chemo, and a nutritionist who helps me navigate my diet, as well as an acupuncturist and chiropractor to support my immune system, all are at CTCA. I don't have results yet, I will get another PET/CT scan after my third infusion, to see. if it is working. They also have Precision medicine via Foundation One there, but my tumor showed no DNA mutation matches other than Keytruda, which will most likely be next treatment if chemo doesn't work. There is also the GCS (Gyno-Carcino Sarcoma) project in Alabama that does 30 minute video second opinon videos for $2,500.00. I wish you well, I would check out CTCA if I were you. There are no guarantees with any doctor with this cancer, but I like how integrative CTCA is. I am doing really well so far!

Your Profile

Magicpam,

You've shared a lot of interesting information about your treatments so far here. I know you've recapped this information briefly in another post. But since you give more detail here, I'd like to suggest that you copy this detail to your profile page. Many women have questions about treatment locations and costs, but may not read this post because it's related to a specific type of cancer that they don't have and is part of such a long chain of messages,

It's good to hear that your doctors will be checking the effectiveness of your treatment after the next treatment. There are other therapies that can be tried if the Carboplatin/Paclitaxol aren't working for you. And I'm sure that having other specialists involved with your treatment will help in minimizing the side effects from chemo.

sapna16p

My mother is fighting MMMT

Hey ... i wish someone is reading this ... my mother was diagnosed  with MMMT grade 1 last year and we did a radical hysteractomy and radiotherapy. post which she was in the green for some time and now she has 2 new growths in her intestine and about to go through another surgery. i know somewhere that this is not the new i was hoping for but tis there anyone out there who has a sotry similar to mine and has come out in the green to the other side. 

 

feeling dejected and alone. please help i would greatly appreciate. 

sapna16p

Marjorieann said:

MMMT

Hello from Ireland.

In 2010 I was diagnosed with MMMT GRADE 3 STAGE 1 

Im still here!!!    do I hold a record?

regards Marje

Hi

hi ... Can you give me some more details of your treatment that you undertook. my mother is diagnosed with MMMT grade 1B but it has now metasised to intestines and thus advanced. Your story is really encouraging 

 

Regards

sapna  

Jairoldi

sapna16p said:

My mother is fighting MMMT

Hey ... i wish someone is reading this ... my mother was diagnosed  with MMMT grade 1 last year and we did a radical hysteractomy and radiotherapy. post which she was in the green for some time and now she has 2 new growths in her intestine and about to go through another surgery. i know somewhere that this is not the new i was hoping for but tis there anyone out there who has a sotry similar to mine and has come out in the green to the other side. 

 

feeling dejected and alone. please help i would greatly appreciate. 

I am reading

Good morning Sapna,

I feel the pain in your post. It is so hard to sit with the unknown. I don't have any experience with what you are asking about but want to assure you that others will be along soon to share their experiences with you. 

cmb

sapna16p said:

My mother is fighting MMMT

Hey ... i wish someone is reading this ... my mother was diagnosed  with MMMT grade 1 last year and we did a radical hysteractomy and radiotherapy. post which she was in the green for some time and now she has 2 new growths in her intestine and about to go through another surgery. i know somewhere that this is not the new i was hoping for but tis there anyone out there who has a sotry similar to mine and has come out in the green to the other side. 

 

feeling dejected and alone. please help i would greatly appreciate. 

Your Mother

I'm sorry to hear that your mother's cancer has recurred so quickly, but unfortunately uterine carcinosarcoma (MMMT) is a very aggressive type of uterine cancer that can recur, even when caught early as your mother's was.

I assume that her doctor will be recommending chemotherapy after her next surgery, if her overall health permits this type of treatment. There was a recent report from a clinical trial that compared the chemo drugs Paclitaxel plus Carboplatin (PC) to Paclitaxel plus Ifosfamide (PI) in women with stage I-IV, recurrent carcinosarcoma of the uterus or ovary. This trial indicated that the PC combination treatment should be considered a standard of care for this patient population.

You can read the full summary at:

https://www.eurekalert.org/pub_releases/2019-06/no-not_1053119.php

I was diagnosed with Stage 3B MMMT in 2016. Although I have not had a recurrence yet, other women on this board have had to deal with spread of other, equally rare types of uterine cancer.

If you have more questions as you learn about what is planned for your mother, I recommend that you create a new topic. This is a very old discussion and many of the women who used to post here no longer do so.

You can always see when someone last posted by clicking on the user name in the blue box to the right of the comments. Some members like myself, have also posted information about our treatments as part of their profile.

Paula127

LizaL said:

Hi I was recently diagnosed with MMMT in vaginal and cervix. I received two chemo treatments but the cancer did not respond to the treatment. My doctor suggested hospice, but I still want to fight this disease. Las Vegas has very few doctors that specializes in MMMT. Can anyone suggest doctors for me. please Help.

Hi Liza,

Hi Liza,

 

My mom was diagnosed with MMMT in April of 2019 and had three rounds of chemo. The tumor didn't respond to the chemo so the doctors stopped treatment. Did you find any doctors who specialize in MMMT? I'm praying for you...

 

cmb

Paula127 said:

Hi Liza,

Hi Liza,

 

My mom was diagnosed with MMMT in April of 2019 and had three rounds of chemo. The tumor didn't respond to the chemo so the doctors stopped treatment. Did you find any doctors who specialize in MMMT? I'm praying for you...

 

Second Opinion

I'm sorry that your mother's initial treatment wasn't successful. MMMT is an aggressive cancer that can be hard to treat. But there are other chemotherapy options that may work better for her.

Because this is such an old topic it can be hard to spot new posts. Liza has not been on the board since May, but I created a separate response in answer to her question at https://csn.cancer.org/node/319754

Please check that discussion out and ask any other questions you may have there or in a new topic so that others can join in too.

MAbound

Paula127 said:

Hi Liza,

Hi Liza,

 

My mom was diagnosed with MMMT in April of 2019 and had three rounds of chemo. The tumor didn't respond to the chemo so the doctors stopped treatment. Did you find any doctors who specialize in MMMT? I'm praying for you...

 

New thread

It's really hard to find new posts in such long and old threads like this. I knew you had this post earlier but missed it because I was looking for it at the end. Please feel free to repost as a new thread and you'll probably get some more responses.

I didn't have MMMT cancer, but I think advice we give to others about going for genetic/genomic testing really applies here for your mother's circumstances since she turned out to be resistant to the chemo she's been given. It's a big out-of-pocket expense since insurance usually won't pay for it, but you may consider it worth looking into rather than being subjected to trial-and-error treatment. It could point to what might have a better chance of working for her.

Paula127

MAbound said:

New thread

It's really hard to find new posts in such long and old threads like this. I knew you had this post earlier but missed it because I was looking for it at the end. Please feel free to repost as a new thread and you'll probably get some more responses.

I didn't have MMMT cancer, but I think advice we give to others about going for genetic/genomic testing really applies here for your mother's circumstances since she turned out to be resistant to the chemo she's been given. It's a big out-of-pocket expense since insurance usually won't pay for it, but you may consider it worth looking into rather than being subjected to trial-and-error treatment. It could point to what might have a better chance of working for her.

Thank you for the information

Thank you for the information...

 

 

Helping my Mom

Helping my Mom / MMMT

Hi all 

I am from South-Africa.My Mom is diagnosed with MMMT 1b cancer. 

On examination she had a thickened endometrium of 8cm.  The endometrium was very vascular. I am trying to find out more from survivors who has been through this for some advice. We need to pay upfront for all doctors and our Goverment Hospitals is in such a bad condition and help is very bad. I have managed to get my mom in for hysterectomy. She will most probably need a bilateral oophorectomy and lymph node dissection +/- chemo or radio therapy.

 

 

please help. My Mom meens the world to me and i dont want to loose her like this 

 

regards 

M

 

 

ConnieSW

Helping

I didn't have MMMT but there are others here who did.. I'm sure someone will be here soon.  Please stay with us. We will do our best to help you and your mom.

cmb

MMMT Treatment

Your mother is fortunate to have you with her during this time. But please keep in mind that while the initial indications are that your mother is Stage 1B, the pathology taken after her surgery will provide the definitive staging.

In my case, I was hopeful that I only had MMMT Stage 1 since my pre-surgery CT-scan didn't show any spread. But after surgery, the pathology analysis found cancer cells at the surgical margin with the parametrium. Therefore, I was staged as 3B.

However, even if your mother is fortunate enough to be finally 1B post-surgery, MMMT is a very aggressive type of cancer. Post-surgery treatment for this cancer, even in the early stages, usually includes both chemo and radiation.

See the discussion on page 47 about the treatment for MMMT and other aggressive forms of uterine cancer at:

https://www.nccn.org/patients/guidelines/content/PDF/uterine-patient.pdf

Please come back to ask any questions you have. But I recommend that you start a new topic – this topic is very old and it can be hard for people to spot the new posts. See the option to "Add a new forum topic" on the first page of the uterine board for starting a new topic.

Helping my Mom

ConnieSW said:

Helping

I didn't have MMMT but there are others here who did.. I'm sure someone will be here soon.  Please stay with us. We will do our best to help you and your mom.

Thank you so much 

Thank you so much 

 

regards 

M

lolow

Helping my Mom said:

Helping my Mom / MMMT

Hi all 

I am from South-Africa.My Mom is diagnosed with MMMT 1b cancer. 

On examination she had a thickened endometrium of 8cm.  The endometrium was very vascular. I am trying to find out more from survivors who has been through this for some advice. We need to pay upfront for all doctors and our Goverment Hospitals is in such a bad condition and help is very bad. I have managed to get my mom in for hysterectomy. She will most probably need a bilateral oophorectomy and lymph node dissection +/- chemo or radio therapy.

 

 

please help. My Mom meens the world to me and i dont want to loose her like this 

 

regards 

M

 

 

Helping your Mom / MMMT

Hi M,

  Like your mom, I was diagnosed with MMMT from a 7 cm tumor back in early March 2020. Had the full hysterectomy mid-March then chemo began April 9th. I was not a candidate for radiation as I've already had radiation for another cancer in the region 6 years prior. I'm 57 years old and doing well. I'll see my doctor in another week but my first scan showed NED. Hoping the same for your mom!

  My cancer was found in one lymph node - the same lymph node where cancer previously went. Hoping your mom's nodes were clear. How's she doing now?

 

Warm Regards,

Linda

lolow

MaryO143 said:

Mmmt

I have been diagnosed with Uterine Carcinsarcomas or MMMT. I am having surgery tomorrow. I survived Colorectal Cancer 9 years ago. I read somewhere that radiation might have caused MMMT. Is there anyone out there with MMMT who also had Radiation?

I am encouraged that there are survivors out there. I have not been staged yet... so I don't know my chances yrt. 

Mmmt

Hi Mary,

  How are you doing? I, too, have MMMT following radation from HPV cancer 6 years ago. I figure mine probably was kickstarted by that radiation. I'm now 5 months out from my chemo and feeling pretty good. 

 

Kind Regards, Linda

lolow

mlshep said:

Carcinosarcoma

I was diagnosed with Carcinosarcoma 7/2018, had surgery 2 days later, was Stage 3A, proceeded with 3 treatments of Carboplatin and Taxol, 25 external radiation treatments, followed by 3 more treatments of the Carbo/ Taxol . I tolerated the treatments well, just really zapped my energy and strength toward the end. A CT scan has shown no evidence of disease.

i would like to ask if any of your doctors have suggested genomic testing through Foundation One, and if so, what are your thoughts?

It is so interesting to read others paths with this disease and to see that there are those who are still doing well.

 

Forgot to say I was diagnosed at 63.

Lynn

Carcinosarcoma - Genetic Testing

Hi Lynn, a geneticist at UCSD Medical Center suggested getcolor.com. It was only $250 back in 2014. Tested for over 30 genetic mutations. I appreciated an inexpensive option. Counselors are available to discuss results. It's a simple saliva test kit that you mail in.

 

Hope yours went well!

Linda