Are there any other MMMT survivors out there?

Hello all,

I have been diagnosed with MMMT.  I meet with an oncologist tomorrow. What Chemo drugs were you given? What was your treatment plan?

Thank You!

gailbeth said:

MMMT stage 1C

i was recently diagnosed with stage 1C ovarian MMMT.  i am going thru 18 treatments of taxol and Carbo and am half way thru.  i have had 4 treatments canceled so far due to low platelets.  Is this normal?  Also is there anyone els out there with stage 1c who had treatment over a year ago and if so has it reappeared?  I am very thankful it was caught early, but what I read about MMMT seems it is very aggressive and will no doubt come back.

Hi Gailbeth, I don't have the proper experience to answer your specific questions but wanted to reach out to let you know that you're not alone. I was diagnosed a year ago with stage 1b uterine MMMT and have been NED since June. From what I can tell from all the support groups I follow, MMMT is aggressive but there are many of us who are NED and living wonderful, full lives (sometimes with recurrence). Please don't give up hope! Kim

Hi. I am a stage 2 grade 3 MMMT uterine  cancer survivor and was diagnosed May 2014,  Had Surgery followed by Chemo and internal  radiation. I feel pretty good and will know more in Sept. Have not had a cat scan since May. 2016  I also had breast cancer in 2012 but not related to the uterine cancer.. Stay strong and keep fighting. I will give it all I have.  I love this board and all of the great people that post.   I look at it everyday and reply at times. I have RA and it is sometimes hard for me to type well.

recently diagnosed said:

carcinasarcoma of the uterus

Hello, I have recently been diagnosed with carcinasarcoma of the uterus. I had a 15cm tumour removed from my womb lining as well as a radical hysterectomy. I have been offered both chemo and radiation but have chosen a radical change in my diet making my body alkaline. The doctors cannot guarantee I still have cancer so the chemical route for me I did not want to go down.  My question is has anyone else rejected the traditional chemo/radiation treatment and gone to raw foods alkaline diet and survived?

Check out her "About Me" page.  She is not very active on this board any more, but you can try PM-ing her.  She refused chemo and radiation and went with diet and other lifestyle changes.  As of the end of last year, almost 6 years.

recently diagnosed said:

carcinasarcoma of the uterus

Hello, I have recently been diagnosed with carcinasarcoma of the uterus. I had a 15cm tumour removed from my womb lining as well as a radical hysterectomy. I have been offered both chemo and radiation but have chosen a radical change in my diet making my body alkaline. The doctors cannot guarantee I still have cancer so the chemical route for me I did not want to go down.  My question is has anyone else rejected the traditional chemo/radiation treatment and gone to raw foods alkaline diet and survived?

You may also want to google Angel Howerton. She was stage 4 carcinosarcoma, went the holistic route and just celebrated her 5 year NED anniversary. Good luck to you and please let us know how you are doing. Kim

Angelapo said:

Hi Marti,

Hi Marti,

What stage did you have? How are you doing now? Thank you. 

 

Angela

Hi Angelapo, welcome to our group but sorry that you've had to join. This is an old post so you may not get too many responses. You might try starting a new post - even if it's just to introduce yourself. I was also diagnosed with MMMT last year and have been NED (no evidence of disease) since June 2016. There are other ladies in this group who also had that same diagnosis. We're all happy to support you in what ever way we can. Kim

Hello Carrie.  I am Marti.  I am 5 years March.  I do have MMMT. This is an extremely aggressive cancer.  I am sorry to say but you are not out of the woods.  This darn MMMT can creep up when you least expect it.  Each day is a blessing. I live a fairly normal life for me. I am phsically challanged so this is a little harder to deal with but there are are numerous wonderful thingw thqt hqppen in my life. I don't mean to tell you give up, never do that.  Just be certain to take good care of your self. That will atribute to a longer life span also.The worse thing is giving up.  When life isn't perfect you just do your best. I wish there was something more possible to say aout this MMMT.  

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. 

Hi Mary, so very sorry to hear that we share the same diagnosis but please stay hopeful - regardless of the staging. You'll read many encouraging stories of ladies with every stage here. There is hope - just stay focused on healing from your surgery tomorrow and don't worry too much about what is to come next. 

I've also heard that radiation is one risk factor for this type of cancer. There are quite a few. I didn't have any of them and still ended up with it - go figure!

Once your surgery is over and if you're feeling up to it, come back to this site and start a new post letting us know how you are doing. We'll be sending out positive vibes for you tomorrow! Good luck to you and don't be a stranger! Kim

Mary welcome to our group.  It is interesting that you mention your story because last May (2016) I was diagnosed with the same cancer you were.  I was told by two oncologists that my cancer was caused by the radiation i recieved for my Hodgkins Lymphoma cancer i had twenty three years ago.  I found that with my first cancer it was a little common to get another cancer years later because of the large amount of radiation given.(even with other cancers)  I dont know if  my MMT cancer (specifically) was nessasaraly because of my first cancer but its interesting that your mentioning that.  I remember when i first found out about this second cancer.  I was so upset and I will be honest I did less radiation for the treatment for this cancer than some others have had partly because of the radiation I have already had and with my doctors telling me radiation caused this cancer.  Reading up on all this and asking others that had my other cancer helped me as i went forward in my journey.

Lots of love with your new journey

your not alone

Janae

Glad you found us Mary. I hope your surgery goes smoothly tomorrow and you get the best possible news out of this. We will all be supporting you on the sidelines! Please do come back and let us know how you are doing when you feel up to it.

Ask us anything. Someone will most likely have an answer for you.

Love and Hugs,

Cindi