My Ovacome
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MMMT

Hi...My name is Gloria and I was diagnosed with Ovarian Carcinasarcoma (MMMT) in Dec. 2016. Debulking and everything removal surgery in Jan. 2017...Stage 3C with metastis to peritoneum. 6 rounds of carboplatin/taxol.....WBC issues, but generally tolerated it well. NED since last chemo of 7/2017. So far, so good. Receiving treatment at Ochsner Hospital/Cancer Center in New Orleans.

Encourage other MMMTers to also visit the GCS Project....great, encouraging posts and information.

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Welcome Gloria - although I'm sure you would rather belong to any other forum rather than this one - but we are a great bunch of girls who just happen to have ovarian cancer. It's great to hear that you have been NED since last July. That's when I was diagnosed. I'll never be NED but it's under control and I'm stable for the moment. I live in France so the medical system is radically different to UK and probably more like the US, although we don't pay anything if we have cancer.

I'm a numptie when it comes to knowing exactly what I have or what it's called as I don't like to know too much. I am stage 4b with tumours all over the place but thankfully nothing in my lungs or liver (so far). I'm a bit of a strange one in that I don't have a normal cancer. I'm not really normal so that wasn't a surprise to hear. I have the monster in both ovaries, peritoneum, bowel and metastatic lymph cancer which is always associated with breast cancer but my breasts are clear and it was my ovaries which started the ball rolling. I had a hysterectomy in my late 30s but they left my ovaries in as I was relatively young. Now they have turned around and bitten me on the bum. I'm now 69. I can't have surgery as it's too risky so I just get on with life until I can't do that anymore. Everyone on the planet dies, whether they want to or not, so I'll not worry about it and I'm not scared of dying. It's nice to have the chance to do and say all the things which are important before I go anyway.

So, enough of that gloomy stuff. I hope you find some information or advice or whatever you need and look forward to more of your posts.

Love Kryssy xxx

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Can I ask if you have had any treatment at all, like chemo or something? I'm nearly 68 and have ovarian cancer which went to the lymph node - had debulking surgery, and I know they'll want to offer chemotherapy, but like you, I am not afraid of dying - but don't want to feel ill for months on end because of the treatment, I'd rather have time feeling well and then die if that's how its to be. Which is why I'm wondering what, if any, treatment they gave you...

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Hi. I'll send you a private message as I don't want us to hijack Gloria's post. You can see my journey on my profile if it helps too. Kryssy xx

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Hey Gloria, welcome to our fab gang, we’re a lovely bunch of people and are here to support you in any way we possibly can. You’re more welcome than you could imagine.

It’s great news that you’re NED, long may it continue that way. I have been NED since December 2014 and hope to remain that way for a long time to come. I live in the UK and have had tremendous care and it is because of that care that I’m coming up to 4 years since diagnosis. I hope your future is disease free and that you continue to be as well as you possibly can be. Keep in touch we love to chat about lots of things not just our disease. Take lots of care out there lovely, sending you big welcoming hugs across the pond ❤️Xx jane

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Hi Gloria I also was diagnosed stage 3 c carcinoma sarcoma, July 2012. What do the abbreviation stand for MMMT. I had surgery and 4 rounds chemo over last 5years. Now taking Letrozole, last scan showed stable tumours in peritoneum pelvis and right lung. This forum has helped me so much, hope it's the same for you. Love Bridie

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Hello Brodie

MMMT stands for malignant mixed Müllerian tumour (having both epithelial cells (the carcinoma part) and connective tissue cells (the sarcoma part)). Is that your diagnosis?

How are you getting on with the letrozole?

Helen

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Hello Gloria, I also have carcinosarcoma,stage IIiC. Diagnosed January 2016, currently undergoing weekly Taxol, four more doses to go!

I have visited the GCS project site from time to time, in the hope that they may initiate a trial or two. Fingers crossed!

All the best!

Helen

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Thanks for info Helen, yes that was my diagnosis. Last chemo January 17 commenced Letrozole August last. Last scan stable tumours. I am not feeling as well as would like? Side effects? Other health problems, breathing cardiac and osteoporosis. Have never done much in the way of research I coped by not knowing too much, but you can't help but learn from this site.Hope you are coping OK with the weekly chemo. Lots of love Bridiexx

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Helen- Dr. Michael Birrer, the primary researcher connected with GCS project, is now the head of the Gynecological Oncology Center at University of Alabama/Birmingham. He is very well respected within the field and is recognized as one of the most experienced oncologoists re: MMMT. The Cancer Center at Birmingham is also considered one of the best in the U.S. So, all in all, a good fit. Dr. Birrer is hopeful he may be able to do some MMMT specific trials this year. I have found that to be the most hopeful news . They are looking for private donations to facilitate the trials, as NCI is dubious source of funding at this time, due to the small population of MMMters. Subsequent to that perhaps NCI may come forward with some money.

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Hello Gloria,

Yes, I read that he'd changed hospitals and wondered how that was going to affect the project, seems as if it might be for the best. I also hope that perhaps one of the 'standard' trials in which we are allowed to participate, may come up trumps for us as well.

All the best!

Helen

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