Just given the diagnosis of MMMT

Without going back to 2016 to look up who, I'm thinking there were a couple of ladies here who were survivors of MMMT since I've been here, but they have either moved on or don't post very often anymore. Because it's a rare cancer, there just aren't as many members who have had that particular beast. Am I right in thinking that Janaes was one who had MMMT? She still posts infrequently, but it's been awhile. In any case, these days, while they are still scary, these type 2 cancers can be survivable, but you need to expect to have both chemo and radiation after your surgery to treat it. This is one to throw the kitchen sink at in the beginning.

Love your picture and your son is so cute!! He'll be your inspiration and pick-me-up for doing what you need to do. How old is he?

Welcome, although I'm sorry that you had to find this board. I know how shocking it is to hear that you have cancer, especially one that is aggressive like MMMT. I was diagnosed with uterine carcinosarcoma (MMMT) four years ago this week. After surgery I learned that I was Stage 3B. Eight cycles of chemo and radiation followed. I have been NED (no evidence of disease) since my treatment ended in September, 2017. So even though the statistics online can be discouraging, many of them are based on old studies that don't reflect newer approaches to treatment.

If you haven't had your surgery yet, there are a couple of topics that you might helpful to read.

What do you wish someone had told you? - Includes a lot of advice from different members about what to ask your doctor(s) when you first learn you have uterine cancer.

Tips for surgery and after? - A list of suggestions for those facing their first surgery for uterine cancer.

Please ask any questions that you may have and keep us updated on your next steps. We're here to support you.

Hi Melissa, I too have MMT, I was diagnosed last fall October 2019.  Stage IIIc - I finished treatment in April 2020, so far NED, I have my 6 month followup CT scan at the end of the month, so I am getting a little anxious but CMB is a beacon of hope, accompanied by my doctor's words and that is that people do survive this.  My approach to handling this diagnosis has been to stack as many cards in my favor as possible, eating right, exercise, and embracing an aggressive treatment plan, which was very doable.   This is a great site you have found here, with a really great group of supportive ladies.

MelissaJA said:

Best of wishes for your 6

Best of wishes for your 6 month follow up CT!!!!!

 

I am starting to put together a plan on diet, exercise, and finding ways to keep my attitude positive.  I find myself going down the rabbit hole of depair and I need to try to stop it.

It is a very hard time right now.  It sounds like you have a great plan and have communicated well your expectations to your GO.  You haven't been staged yet, so I would concentrate on getting that information.  Great you are having the CT scans.  I had robotic assisted abdominal hysterectomy.  My GO had me sign consent for both vaginal and abdominal, and decided abdominal would be better.  So I had an incision.  But I still had an easy recovery.  I did have some slight hallucinations from the pain medication.  Feel free to ask any questions.  It was the hardest time for me, waiting for staging.  I went down the rabbit hole too.  I am an RN and I was shocked at the feelings I had not been aware of in our patients who were told they had cancer.  No one knows until they hear it.

For many years uterine carcinosarcoma was classified as a form of sarcoma and the chemo drugs used to treat it reflected that classification. In recent years, however, there has been a change to consider it as a high-risk variant of endometrial adenocarcinoma.

Because it's a rare cancer, there haven't been many clinical trials specifically for it, but there was one trial which concluded last year that the regimen of paclitaxel plus carboplatin (commonly used today for uterine cancer) was as effective as ifosfamide (often used for sarcomas) and paclitaxel, with fewer side effects.

https://ascopubs.org/doi/abs/10.1200/JCO.2019.37.15_suppl.5500

My medical oncologist decided from the start to treat both the carcinoma and sarcoma cells of my cancer with two different chemo regimens: 4 cycles of paclitaxel and carboplatin followed by 4 cycles of ifosafmide and doxorubicin.

I haven't read of anyone else with MMMT who had this combination regimen, but it seemed logical to me when he proposed it. I can't say which of the four chemo drugs I took were the most effective for me, but a CT-scan after chemo ended didn't show any signs of the disease.

The ifosafmide and doxorubicin combination used in my phase 2 was definitely a lot tougher to get through, but I didn't have any of the most drastic side effects these two drugs can have for some people such as neurotoxicity or heart problems.

Trish in TX is still kickin it after treatment for MMMT.  She just doesn't visit anymore but she and I have had private conversations.  She is off enjoying time with her grandson.