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Are there any other MMMT survivors out there?

1975goatgirl
Posts: 1
Joined: Nov 2009

I am a 34 yr old woman who was diagnosed with stage 4B uterine MMMT. Mine had metastasized to my omentum, colon, appendix and most of my pelvic and abdominal lymph nodes. I am 3.5 years in remission. I would love to hear from other survivors. I know this is a very uncommon cancer in relation to most uterine cancers. I've never talked to anyone else with it.

My email is kisses4fluffies@yahoo.com

Thank you,

Carrie

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Could you spell out MMMT. I don't think most of usknow what that means.

Diane

thank you
Posts: 77
Joined: Jun 2009

Just checked on the internet, it is: Malignant Mixed Mullerian tumor or carcinosarcoma. I decided to post here when I noticed your age - I am 34 years old. My mom is diagnosed with uterine cancer - endometrial, and I come to this site to get advice from wonderful women.
Also I posted to celebrate with you, 3.5years of remission, you are cured!!
I wish you the best, even if you don't have an answer from somebody with the same type of cancer, you will get a lot of help in this site, or I think you will give a lot of help since you are a SURVIVOR!!!!!

cleo
Posts: 145
Joined: Sep 2009

I also have the above. Two years well now. Am twice your age however!! Did you get other responses?

marti968's picture
marti968
Posts: 36
Joined: Apr 2013

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

Ilda28
Posts: 8
Joined: Apr 2015

Hello Marty, 

I am so happy to see your posts again. I wanted to ado you did decide to go with treatment ?

Ilda28
Posts: 8
Joined: Apr 2015

Hello Marty, 

I am so happy to see your posts again. I wanted to ado you did decide to go with treatment ?

nomadic_spirit
Posts: 1
Joined: Feb 2010

Hi Carrie,

My sister was just diagnosed with stage 3B MMMT & she is 38 years old. The doctor said that the prognosis is not good, but then I read your story. Can you please tell me more about your story? I need to let my sister know that she can fight this and survive.

Thank you.

Deborah

jobeck52
Posts: 1
Joined: Apr 2010

Hi,
I was diagnosed in Nov. of 2007 with stage 3 MMMT. I went through surgery, chemo and radiation. I was told I had only a 20% change of it coming back. So far so good. I am 54 now. The doctor said if I went 3 years without a reoccurance it wouldn't come back. I have not met or talked with anyone else with this cancer. I have been afraid until now to even look at message boards about it. When I was first diagnosed I read very upsetting stuff on the internet. My doctor said a lot of the studies talked about were 10 years old and treatment has changed. Although she also said there wasn't much information about research and new findings out there. I hope your sister is getting all three types of treatment.

Robin

sue K
Posts: 18
Joined: Apr 2010

Hi
I was diagnosed with MMMT last May, and it is so good to 'meet' with others who have the same cancer. I had radical hysterectomy, followed by chemo and radiotherapy. I am doing OK but have a lot of pain, especially in my back and in my legs. I meet with my oncologist tomorrow for results of scans, and am hoping for positive results.
By the way, I realise that this is an American website, but it is the only one that I've found with a forum dealing with issues that relate to me. I am in Scotland, but the cancer is the same!
good luck to you all
sue

cleo
Posts: 145
Joined: Sep 2009

Sue...I have to second your comment. I am in NZ and have gained a lot of knowledge and common sense from this site. I did not bother with the internet after the initial look as if this is so rare...little or no research done....how do they come up with data?? From negatives only - not the positives like ourselves. Diagnosed Stage 4 in August 2007 my scans have been unchanged and I intend to stay that way. Neuropathy can result from the radiotherapy and is painful. Celia

nempark
Posts: 683
Joined: Apr 2010

I would love to have an update on your progress. I did do some research Wow!!!!! Can they be more negative. From August 2007 to now is a long time. You are cured. Please post. I was stage 1a and is now six months in remission and like all the fine ladies on this site we will remain in remission for ever. Love June

Wonderland
Posts: 2
Joined: May 2010

HI
I was diagnosed in August of 2009. Underwent a complete hysterectomy, 3 cycles of chemo [Taxol and Carboplatin], [Sep/Oct]; external radiation [Nov- Dec] for 25 days; internal radiation for 3 days [Dec]. I had a pre-chemo appointment in January to begin the last 3 cycles of chemo, the docs discovered that the cancer had recurred and actually spread to one of my lungs. I was told at the start that this is a rare agressive type of cancer and that it would probably recur. I just did not think it would be so quickly, even before treatment was finished. Needeless to say, my prognosis went from poor to very bad.

In January I started a new chemo protocol of Ifosfamide and Taxol. After the first 3 treatments the tumor had shrunk by 2/3. I have one more treatment left and then another CT scan. Has anyone else been treated with Ifosfamide?

nempark
Posts: 683
Joined: Apr 2010

Hi Wonderland: Please give us an update on your progress. I was diagnosed around the same time as you. 6 sessions of carbo/taxol no radiation. I was a stage 1A. This is a rare cancer and very aggressive. But medicine is great now and we can all beat this monster. Looking forward to your post. Be well!!! June
T

RoseyR
Posts: 471
Joined: Feb 2011

Dear June,

Because radiation is usually prescribed, along with chemo, for MMMT, am wondering why you chose (or were prescribed) no radiation, especially since you seem to be doing well.

Best,
RoseyR

nempark
Posts: 683
Joined: Apr 2010

Check further down on the thread I did a new message for you. Because I know sometimes it is difficult to find the response. Be well June

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Hilajoan
Posts: 18
Joined: Nov 2011

I had full hysterectomy in November (2011) and have had no radiation or Chemo - from what I've read I might just as well not! I feel fit as a fiddle - even though I had breast cancer and a mastectomy in March last year (also 2011). The two cancers are unrelated - fortunately. I am in London, England. Hope our doctors and oncs know as much as those in the USA - they should do - they can all read and write! No-one seems to be able to agree on the likelihood of recurrence of the Carcinosarcoma/MMMT. So why should I put myself through the trauma of Chemo and radiation, with probable lasting ill effects when there may be no need, or possibly no effect on the likelihood of prolonging my life. Any views? Joan

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Fayard
Posts: 390
Joined: May 2011

Hi Joan,

I was wondering how you were doing since surgery.

Hilajoan's picture
Hilajoan
Posts: 18
Joined: Nov 2011

I'm so sorry, been a bit busy with surgery, treatment, and on the MMMT Yahoo group mostly.  Below is my 'potted history'

Didn't go quite as well as planned, but I'm OK again now.  Next scan mid March.   I wouldn't have had the chemo without the lung metastases, and didn't have radiation to the pelvic region.  I know what it can be like after radiation - and think how many CT scans we have and how much radiation we get with those.........

I guess I'm still in denial....... My hair is already growing back slightly - but not the right colour!!!

Good luck and love......

Breast CA, March 2011, mastectomy and radiation (chemo not needed)
- Started and stopped Arimidex - aches and pains
MMMT diagnosed November 2011, after hysterectomy.
MMMT secondaries in lung, August, September 2012, segmentectomy
Chemo - carboplatin & Abraxane (NAB-paclitaxel) , started Oct. 2012
- Changed to Paclitaxel, due to allergy, Dec 2012
Chemo stopped after Feb 1st - Had five carboplatins out of six - and about
ten taxols out of 18 due to low blood counts, high fever (104!) and FLU!!!

Next scan mid March. 

marti968's picture
marti968
Posts: 36
Joined: Apr 2013

I ask the same things.  My firends are upset with me since I do not want to do these things.  I am 73.

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marti968
Posts: 36
Joined: Apr 2013

I am back after having external radiation and then for the internal for my MMMT.  I have a dull pain, spasms, gas pains etc and am slighly uncomfortable but I don't think It has gone to the lungs at all but I think it has gone to the other areas abdominally.  I had absolutely no symptoms like bleeding or pain.  My GYN doc asked me if I knew I had blood in my Uterus and I told her no.  I am incontinent and would most likely not notice it unless there is a large amount of bleeding.  I did not even see any pink tingued stuff.  So since Apr 7th when I was told the results of the D & C, I have done all the reasurch I can find. Nothing is great and it is all so negitive.  I am not going to give up but It is hard to stay positive with this one.  Because of my other health issues I did not do surgery.  I knew that if I did I would not come off that table alive and the feeling was so strong I decided I better listen to myself. I only had radiation figuring I might as well do that but try to limit the cutting on my body and just die gracefully.  Not exactly how I want to say that but do not know quite how to say what I mean.  I really believe if I get surgeries over and over it will shorten my life much more than if I just kind of coast.  Oh and I did not do any Chemo either.  So will come back here and let you kow how I am doing and if I am still alive occassionly.  I just did the brach therapy or brachy therapy.  I have seen it spelled both ways so am not sure exactly what is the correct spelling, but who cares really.  I read everything I can get my hands on and hope that maybe there will be better news but not happening yet.  My prayers for all of you and also for me.  God knows what He is doing so I give it all to him. 

ab57
Posts: 1
Joined: Sep 2015

i was just diagnosed with carcinosarcoma after less than a month of symptoms. everything has happened so fast.in 2006 i had stage 3 colon cancer and went through radiation and chemo with good results until now. i am scheduled to see specialist on monday to figure out how to progress. i really dont want to use chemo again. anybody out there not get it? they said theyll have to stage it with surgery and will do a total hysterectomy and part of omentum. i am pretty scared.

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 829
Joined: Jun 2015

HI, Sorry for your DX. There are several ladies on this board that have MMMT. I am not one of them but I'm responding because I fear your question won't be seen. It got buried in a lot of other posts.  There is another thread that is newer that you may want to take a look at. It is titled ladies out there.... and shows up about 5 down on this board.  Also, if you go to the end of the mmmt thread and post your question, it will be way easier to find. So, go to the last message on the last page and hit reply. It should line you up at the end that way. Then copy your post there. This is a great place to get support and honest answers. It has helped me more than I can begin to say. Take care of yourself, Cindi 

PS - The MMMT thread has loads of information on it. With a lot of survivors still sending replies.

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Editgrl
Posts: 613
Joined: Jun 2015

Welcome to the board. I am sorry for your diagnosis. I too have carcinosarcoma, Stage IIIc.  I was very scared when I came here in June after surfing the net.  The women here are great sources of infomation and support which I desperately needed when I found this board.

I do echo Cindi here. There is a lot of good info on this thread, but it's not so great for new postings.  You might want to start a whole new thread. I do believe that some of the women here have opted not to do chemo, and they may chime in.  

Yes, they will stage it after surgery. A lot of your treatment plan will depend on the staging, i.e., how far it has penetrated into the uterine wall, whether the lymph nodes, ovaries, etc. are involved, etc.  It's hard, but take a deep breath.  If you've been on the internet doing research, please know that a lot of the information out there is dated. There are a number of long-term survivors here and over on the yahoo board, which you also might want to check out.

https://groups.yahoo.com/neo/groups/UterineMMMT/info

Chris

 

 

 

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debrajo
Posts: 1072
Joined: Sep 2011

Besides starting a new thread, you might want to priviate email Txtrisha55  She has MMMT and clear cell.  She visits with us, but is not on daily.  Wishing you a good journey.  Best, Debra(Jo) 

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Kerrey
Posts: 2
Joined: Sep 2016

My mother has been diagnosed with MMMT clear cell. I know this post is old, and we are new to the site. If anyone could give us information or people who would like to connect it would be greatly appreciated. Thank you.

Kvdyson's picture
Kvdyson
Posts: 313
Joined: Jan 2016

Hi Kerrey, I'm so sorry to hear about your mother's diagnosis. I recall being in her shoes just last September. It is a very scary time but please know that you will have all the support that you need from us.

Has she had surgery yet? Mine was a TAH-BSO with 14 lymph nodes excised. It took me about 4 weeks to get back to feeling normal and back to work (part-time, desk job).

The stage and grade of her cancer tumor is very important to know. Mine was uterine carcinosarcoma (MMMT), stage 1b, grade 3. The information about the tumor will determine her treatment plan. My treatment was 6 rounds of chemo ( Ifex/Mesna/Taxol) with 28 external radiation treatments "sandwiched" between the 3rd and 4th rounds of chemo. I finished treatment in May and have had a clear scan showing no evidence of disease or "NED".

Is her doctor a gyn-onc with experience treating MMMT? At this early stage, I recommend getting copies of all her pathology and surgery reports for her files. They will come in very handy to refer back to and if you decide to get a 2nd opinion.

Also, she may want to consider taking a tape recorder to appointments or find out if her cell phone has an app to record them. There may be a lot of important information discussed and you don't want her to miss anything. I listened to my recordings again recently and realized that I had missed some very important things the dr. had said at the time.

Please pass on my wishes of good luck to her (and to you). She can do this and we will be here to support you both! Wishing you both peace and strength, Kim

janaes
Posts: 212
Joined: May 2016

Kerry,  welcome to our board.  Its a board thats not so fun to be in, but support is avalible. I was diagnosed with MMT stage 2 grade 3 uterine cancer.  I am currently duing chemotherapy and have one more left to do in two weeks and then i start radiation   I  agree with Kim.  Having the pathology report was very helpful to me.  Reading older posts was helpful too.  I found much support from other women on this  board.  There is also a Yahoo MMT support group.  I am currently trying to get involved.  It takes approval so I am waiting to hear from them. You could look into that as well.  Finding the right doctor ment a lot to me. Having a tumor board help in my decision.  I just asked my doctor and he set it up for me and then I called him and he told me the results. 

Best of luck going forward, Janae

nempark
Posts: 683
Joined: Apr 2010

Hi Sue: I am six months post op and in remission. Its only this week I found out that the cancer was MMMt. I think the leg and back pain is normal, I also had those symptoms but they are now going away three months after conclusion of chemo. It is an American website and you will find lots of love and really good comforting thoughts. It is through this website that I have learned to ask doctors pertinent questions. I hope the treatment over there in Scotland is as good as here in the USA. Please give us an update on how you are doing. Love and best wishes. June.

sue K
Posts: 18
Joined: Apr 2010

Hi June
There are 2 threads with the similar discussions on MMMT. I did reply to you on the other page- I don't want you to think that I had ignored you!
I am doing ok. I am free of the cancer for now, and am so very thankful for that. I am still having a lot of pains - all similar to fibromyalgia my doc says - so I keep taking the pills and am glad to be alive.
My treatment here in Scotland has been wonderful, but no-one is very knowledgeable about MMMT.
I hope you are getting on ok. This is a wonderful website, and I am so thankful to have found it. It's such a comfort to hear from others in similar situations, even though you are so far away.
Love, and God bless you,
Sue

nempark
Posts: 683
Joined: Apr 2010

Robin, you are cured, its almost three years. I am 60 and scared to death with this rare cancer. Good the studies are really old and so many people have survived this. We here will all have the same good fortune. I send you good wishes. Please keep in touch. Is there any advice you can give me in terms of diet or herbs? I would greatly appreciate.

nempark
Posts: 683
Joined: Apr 2010

Hi Deborah: It is now eight months since my surgery. Stage 1a. I had complete Hyst. and six sessions of carbo/tax. only in June that I found out that it was MMMT. I read your post about your sister and I am really wondering how she is doing. I have also read these other posts and responded to them but no one had replied to me. I e-mailed Carrie and also wrote to her on the site but still no answer. I would greatly appreciate it if you can give me some information on your sister's progress and some tips. Be well June

Angelasmom2
Posts: 146
Joined: Jul 2010

What is MMMT?

nempark
Posts: 683
Joined: Apr 2010

MMMT -- malignant mixed mullerian tumor---a very rare aggressive cancer.

marti968's picture
marti968
Posts: 36
Joined: Apr 2013

Malignant Mixed Muellerian Tumor

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monik_lisett
Posts: 8
Joined: May 2010

Congratulations, its so good to hear you beat this monster..I am personally very scared for my mom. She was recently diagnosed with MMMT the end of March 2010 and 2 weeks ago had a complete hysterectomy. On saturday we spoke to her doctor and all the pathology reports came back clear of any cancer spread, the tumor was confined to the uterus. Doctor mentioned having treatment such as radiation/chemo for prevention..So we were all so excited to hear the great news... But now I'm so scared of recurrence since this cancer is very aggressive. I read some stories last night of Stage1 recurrence and it really scared me. I'm so glad to hear although yours had metastasized you were still able to beat it..
-Monique

nempark
Posts: 683
Joined: Apr 2010

Hi Monique: I was diagnosed in October 2009. Stage 1a in the endometrium. Total hysto, omentom, lymph nodes and the works. I went to the doc on Tuesday and its only then I found out that it was MMMT, then foolishly went home and did some research. I was scared to death. But it is comforting to know that Carrie managed to beat a stage 3 for 3-1/2 years. So can your mom and me. Don't be afraid. It's part of life's circle and life goes on. Be well and please keep us informed about mom's progress. I send you and mom lots of comfort. June.

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monik_lisett
Posts: 8
Joined: May 2010

Hi June, Thank you for sharing your story. I hadn't found someone with stage 1A. The ones I read were stage 1B or C.. My mom already started her treatment.She's having 5 internal radiation treatments and will begin chemo Taxol/Carbo in 2weeks for 6 cycles. It is comforting to read stories like Carrie's, but the internet is really full of negative info about this type of cancer.I am greatful however that it was found on time and is being taken care of. She's being treated at MDAnderson, of what I hear its one of the best cancer centers so she's in good hands. With Gods help we've been able to endure this, my mom has truly been strong since the beginning, and I hope and ask for your prayers she'll keep her strength during her chemo treatments. Hope you continue to do well, God Bless!

CMadison
Posts: 2
Joined: Jul 2010

I wanted to write to you after seeing your post about your Mom and her journey. Mine is very similar. I am also stage 1A,had a complete hysterectomy 4 weeks ago. I will have 2 radiation treatments as a precaution for reoccurrence, and will then be treated with taxol/carbo. Even though I am 1A, I had lyphovascular invasion inside the uterus. the doctor feels with this type of cancer, I cannot take any chances of some escape of cells out of the uterus. The chemo really scares me. Wondering how your Mom is doing on the carbo/taxel? Wishing her the best and, like me, I'm sure you're all hoping it will all be over after these chemo treatments.

CMadison

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marti968
Posts: 36
Joined: Apr 2013

Are you in AZ or our Mom?  If so would like to talk to your mom if she is able.

nempark
Posts: 683
Joined: Apr 2010

I sent you an e-mail. Hope you are well. I am anxiously awaiting your reply. June

praying4u
Posts: 1
Joined: Jul 2010

My grandmom was just diagnosed today with this rare cancer. We just lost my granddad 2 1/2 months ago and still recovering from that. I was so happy to find this site where people have positive stories. Remaining prayerful!

nempark
Posts: 683
Joined: Apr 2010

Hi: How old is grandma? So sorry about grandpa. How is grandma taking that loss. Keep an eye on her she might be really missing him. Please let us know what treatment she will be taking and what stage she is. My prayers go out to you and the family. June

Cynthia7
Posts: 3
Joined: Jun 2010

Am 71 and diagnosed in April with Stage 4B MMMT. Had complete hysterectomy & now undergoing chemo. Treatment is Taxol & Carboplatin. After 2nd chemo treatment CA 125 test went from 330 to 87 so apparently it is working and ascites seems to be drying up as well. Having problems keeping white cell count up but other than that doing ok.

All the information I read about MMMT is so negative & discouraging it is very helpful to read about those who have the same diagnosis & are doing well.

Let me know how doctors decide to treat your grandmother.

nempark
Posts: 683
Joined: Apr 2010

I am so glad to hear from someone who HAD the same condition as me. I have had surgery in November 2009 and its only in June of this year that I really found out what the cancer was. I tried several times to contact the sisters but only heard from Sue in NZ. I have been diagnosed with Stage 1A and had the same treatment as yours. When I found out that the Cancer was MMMT I googled it and much to my surprise was very disappointed with the prognosis. So I have decided that I have been treated and I feel well except for occasional depression. So I am not doing any reasearch any more. I am trying very hard to keep a decent diet. My first Ct and chest xray was negative so I am ned. I was told by my chemo doc that she cannot use ca125 as a marker.
I am not going to let this monster rule my life I have resolved to fight it and keep positive and live my live as I did before. I do hope you are keeping positive, you do sound great. Thanks for sharing your story. May God bless you and give you the strength and courage to continue living a normal life again because you have been treated. Hugs. June. looking forward to hearing from you and others out there.

Cynthia7
Posts: 3
Joined: Jun 2010

Thanks for your reply. Curious as to why your Dr. could not use the ca-125 as a marker. My numbers keep going down, yesterday it was 30.9 from 87, & Dr. was very pleased. I just had my 3rd chemo treatment & have 2 more. Possibly the fact that you were stage 1A & I am 4B makes a difference. Great news that your scan & x-ray were negative & I would think that your early diagnosis will make a huge difference in your prognosis.

You are right about the internet. It is a wonderful tool but so difficult to filter all the information. Every time I look up a side effect etc. I become very upset & it can be depressing.

All the best to you & keep up the good diet; it does make a difference.

nempark
Posts: 683
Joined: Apr 2010

Cynthia, I am so glad to hear from you and how well you are doing. I have been looking on the board for responses, so far I have heard from SueK, Karma now you. I would love to know how Carrie is doing since she is a 3-1/2 year survivor and also the other ladies on this thread. Thank you again for your response. It seems that you are doing fine. Please try to avoid the internet, its all doom and Gloom. So keep yourself free from the negatives. I know it is easier said than done. Yes, I am doing a lot of herbs and is really watching my diet but the weight is not budging. Be well my love and before you know it the chemo will be over. I never thought that I would see hair again, but it is growing nicely. Thank God!! Please try to keep in touch more often. Best wishes and best of all good health to you!!! June

Cynthia7
Posts: 3
Joined: Jun 2010

Thanks for your reply. Good to hear your hair is growing back; I am terrified that mine won't, which is ridiculous since everyone says it will, but can't shake the thought. I am having a problem with neuropathy. Hopefully you are not experiencing that side effect but would love to hear from others who may be dealing with it. Sounds as if you are doing well. Keep up the healthy diet and over time the weight will come off. All the best!

aochime
Posts: 1
Joined: Sep 2010

Hello,

My mom was diagnosed with MMMT stage 3 and we are very scared and not really sure what to do. My sister told me to do some research and find other women in her age group that are beating this. I read your comments and if its possible, we would like to communicate with you. You can reach me at aochime@yahoo.com

Thank you,

Anthony

janaes
Posts: 212
Joined: May 2016

Hi Anthony, I was diagnosed with MMT stage 2 Grade 3 uterine cancer back in May 2016 after my hysterectomy.  There are other women on this board who have MMT as well.  Im not full of knowledge but know this is an agressive cancer, yet Ive read other story on this board of women who have beaten this cancer.  I hope others see your post too.  If they dont you can start a new thread and i would think that would help.  You can also type MMT in the title bar at the top and it will pull up alot of threads around this cancer.  I also liked to click on peoples names when i find they have MMT and it tell more about them.  There is a lot of info about this cancer.  I also found it helpful to read up on the different cancer websites like this one. (American Cancer Society).

Janae

jinkies's picture
jinkies
Posts: 8
Joined: Sep 2016

Did you have chemo or any other treatments? I had a total hysterectomy but they did not remove lymph nodes in February 2016 and have completed 18 weeks of carbo/taxol. I cannot get my local oncolgist to prescribe anything but chemo and CTscans.

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