Are there any other MMMT survivors out there?

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.

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,

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!

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 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. 

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. 

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,

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...

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...

 

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.

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

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 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

 

 

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

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

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