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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

Ocalagal99
Posts: 29
Joined: Nov 2013

Having a very hard time last night, Christmas Eve, and this morning, Christmas day!  This is till so unbelievable!

I don't know if it is the lack of hormones after my radical hysterectomy 5 weeks ago, even though I am 72 and have been through menopause more that 27 years ago, but just can't keep the tears from welling up and coming.

I am German and Christmas has always been such a big, sentimental time, especially Christmas Eve when we celebrate and give presents and then go to Midnight Mass, and all the wonderful music. 

Wondering if I will have next year and maybe the year after that.  From what I read the survival rate is, at best 1.5 -3 years.  But then maybe knowing that will help, rather than not knowing when we have to go.

Hug your loved ones tight today and every day!

Thank you, RO10 for your comforting messages.  Best wishes to you!

 

cleo
Posts: 145
Joined: Sep 2009

Ocalagal.   Please do not read about stats, they do not talk about those of us who are still here.  I was Grade 4  MMT with the uterus perforated and cancer through to the bladder and lymph glands.  That was 6 years ago.  Be positive.   Boxing Day here today and we are off to visit my very first 3.5 month grandchild [I am 73!!!  All late starters!!]   and I intend to be around to enjoy her for many years.        Look ahead with confidence in the New Year and I will catch up with you this time in 2014. 

Ocalagal99
Posts: 29
Joined: Nov 2013

Thank you, cleo.  So great to hear how well you are doing, wow - 6 years!  That would be great!

Happy Boxing Day!  Have great memories of my one and only Boxing Day in England, staying at the Lygon Arms in Broadway.  Wonderful Christmas dinner with poppers!  What fun!  Seeing the No Cotswold hunt come down Main (High) Street on Boxing Day morning at breakfast time was a real treat for us horsey people!

Glad this Christmas is over with, we don't have Boxing Day!  now just to get through New Year's Eve!  Sleeping will be indicated!

So, I just started reading about "Chemo Brain"....something new to be concerned about!  Does anyone have something informative to add on this.  I live alone and am concerned about being able to function as to finances, dogs, driving, etc.  Many thanks!

Yes, catching up this time in 2014 will be fantastic and we will have to plan on it.  Happy and healthy New Year to you!

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Ro10
Posts: 1579
Joined: Jan 2009

I don't think I noticed chemo brain until after my first round (6 treatments).  I noticed I could not remember things as before.  After 3 rounds of chemo ( 19 treatments) I still have effects of chemo brain.  I just don't remember things from the past.   I do suduko, and Kakuro puzzles to stimulate the brain.  I don' t think you will have trouble with finances, dogs and driving.  You might just need to keep lists.  

I do not think everyone has trouble with chemo brain.  So you may be one that does not get it.  If you put " chemo brain" in the subject box on the first page, you will find other posts regarding this.  I hope you are doing some fun things and not spending your time worrying about " what if".   I know it is hard not to worry.  T

also if you start a new discussion when you have a question or concern it will be easier to find than on these long discussion posts.  Feel free to ask any questions or express any concerns you have.  In peace and caring.

frodolass
Posts: 32
Joined: Sep 2013

Hi neighbor! I'm about an hour from Gainesville and I drove myself to chemo and radiation treatments for 6 weeks with no problems. I was very lucky that I had very little nausea or other side effects. My sister came with me the first couple of appointments, but there isn't space in the chemo room for visitors, so she didn't come after that. I start more chemo in January and I'll have to see how it goes. VERY happy to be done with radiation.

 

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Teamkelly
Posts: 63
Joined: Sep 2012

Hi,

I post for my sister-in-law Kelly, she was diagnosed at 65 in September 2012, had complete hysterectomy diagnosed 3C MMMT. She had 6 rounds or carbo taxol, no radiation. She has done great, not many side effects, worked out 3 Times a week and walked daily During and after treatment. Last week she had garbled speech, some dizziness and nausea went to the hospital and was diagnosed with two mets in her brain and some cells in her abdomen. 

Yesterday she had embolization of tumor on brain stem and today she has double cranium surgery to remove 2 brain tumors, followed by chemo and radiation. She is so positive, she says God is not done with her yet and I believe her, she has had a tremendous amount of energy thru all of this.

one thing we do not understand is why her doctor, top specialist at UCLA, recommended by Sloan K, never did a PET scan, even though she asked for one repeatedly? He checked her every 3 months with blood test and exam, the last one was 3 days before Chritmas.

Nicki

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Ro10
Posts: 1579
Joined: Jan 2009

I am so sorry to hear Kelly has mets to the brain.  I pray that the surgery will go well.  She is so lucky to have you for support.  I know this has to be scary for everyone.  I will keep you all in my prayers.

to answer your question.  Some doctors prefer CAT scans over PET scans.  My doctors do.   The brain is not usually scanned unless there are symptoms.  It does not sound like Kelly had symptoms previously.  My scans include the chest, abdomen and pelvis.

i think it is rare for uterine cancer to go to the brain.  I am so sorry that Kelly's cancer did go there.  I pray that her treatment plan works for her.  I am happy she still has a positive attitude.  I believe that makes a big difference.  Having good support is so important, too.  Please keep us updated.  In peace and caring.

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ConnieSW
Posts: 1456
Joined: Jun 2012

Nicki,  I have wondered how Kelly was doing and hoped no news was good news.  I'm sorry her NED time was so short.  I hope the surgery is going well and will be keeping her in my thoughts.  You too.

 

as for f/u, it doesn't seem to be a cut and dried thing.  I had 1 CT scan in Oct '12 and exams and blood work since then.  I've been ok with that since my creatinine has been a little elevated since chemo so have to weigh possible benefits vs kidney damage from the contrast.  I was 1a UPSC  so the early dx may make a difference despite it being another grade 3 ca.  I recall you had a second opinion re treatment.  Did that include recommendations for F/U?  I would have been so focused on treatment that I wouldn't have thought about asking questions re afterwards.  I will now, should it be necessary.

Please keep us updated.  We are with you.

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Teamkelly
Posts: 63
Joined: Sep 2012

Teamkelly's picture
Teamkelly
Posts: 63
Joined: Sep 2012
Dear Family and Friends,
 
What an amazing day it has been!  The video this morning was taken right after they took the ventilator tube out of Kelly's mouth.  Once that tube came out, she continued to make amazing strides.  She passed the swallow test with flying colors and was able to start a normal diet by mid-afternoon.   By late this afternoon she was able to sit straight up in bed and eat her yummy brownie dessert :)  Definitely not hospital food…..Richard brought her some yummy soup and dessert :)
 
Doesn't she look great?  Who looks like this after double brain surgery?  God moved a mountain last night/today…….and we were all privileged to witness it!!!!  Kelly is definitely the result of a lot of answered prayer!!!  
 
Kelly had a MRI this afternoon, but we won't know the results until the oncologist has a chance to compare it to her previous ones.  We are expecting to meet with him in the next few days.  The main concentration right now is for her to continue to rest and heal.  We will continue to let you know how she is doing and when she is expected to go home.  At present, we believe she will be in ICU for 4 more days.  
 
COULD NOT USE VIDEO. SO I USED A PICTURE INSTEAD.
 
Psalm 55:22  Cast your cares on the Lord and he will sustain you; he will never let the righteous be shaken.
ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

May her recovery be complete and uneventful.

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Teamkelly
Posts: 63
Joined: Sep 2012

Thank you Connie!

 

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Teamkelly
Posts: 63
Joined: Sep 2012

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Hybridspirits
Posts: 209
Joined: Nov 2012

This is great news.  Hoping for ongoing and continued positive reports

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Ro10
Posts: 1579
Joined: Jan 2009

What a great report.  And a picture is worth a thousand words!  Praying for continued healing and good results from the MRI.  Take care of yourself and keep us updated.  In peace and caring.

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ConnieSW
Posts: 1456
Joined: Jun 2012

It looks like Kelly felt well enough to put her face on.  Isn't that something!

RoseyR
Posts: 471
Joined: Feb 2011

RO,

Having been off this site alas, for a year and half, I am SO happy to see you still here, apparently well, giving hope and adivice to the newly diagnosed.

You are SUCH a tropper and inspiration to all!

I have been diverted from CSN, alas, by my full-time job as well as another web site for women being treted by Dr. Nasha Winters in Durango Colorado (I flew out to see her two summers ago), but I had always voewed to go back to CSN to see how my old buddies are doing.  

And I'm SO happy to see you still here, doling out great advice.

Love,

RoseyR

 

lll0501
Posts: 1
Joined: May 2014

My dear friend has MMMT and just got a scan that shows a new mass in right abdomen - omentum area. She is certain she is going to die in the next 3 or 4 months. I cannot guarantee that but i would like to give her examples of folks with similar diagnoses that have survived longer.

 

ConnieBH
Posts: 4
Joined: Oct 2013

What happened to your friend?  Did she get better?

anissaroelle
Posts: 1
Joined: Sep 2014

Hi. I'm 31 years old and last March, I was diagnosed with mmmt. I finished my chemotherapy last July. And I just had a ct scan to check status of tumors. I'm hoping it will joy recur again.  I seem to be one of the youngest to get this kind of tumor, I'm not sure. But I'm reading through all the messages and I can see that there is hope. Thanks.

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ConnieSW
Posts: 1456
Joined: Jun 2012

Sorry you had to join this group and at such a young age.  I look forward to sharing years and years and years of NED with you.

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It happened to Me
Posts: 206
Joined: Apr 2014

I have been so amazed at how young women are at time of diagnosis.  I'm sorry you have cancer but am very glad that you have joined.  This is a great group who have a wealth of information and this is a very loving, caring group.  You can share anything, good, bad, frustrations, joys etc.  This is one big family to get plenty of cyber hugs.

Jeanette

ConnieBH
Posts: 4
Joined: Oct 2013

I would love to see more updates on some of these older posts.  Are there survivors out there still from 2010 and such years?  My mom was diagnosed last September of 2013 and we lost her in July 2014.  She refused more chemo after 7 treatments, she had a lot of pain and since the CA125 were rising again, she got very disappointed, as well as the tumors coming back and many side effects, including diarrhea for months and rapid weight loss.  She was always so strong and never took medications for anything, that I think her body went haywire with it all.  In April or so I noticed a huge change in her spirit when all doctors were telling her to get her affairs together, since her numbers didn't look good and she refused the chemo.  Radiation was not an option since it was Stage IV.  It was all so fast and confusing, we all live in different cities with young children and only one of my sisters was able to travel to take care of her, the rest of us went on long weekends but not longer, since she lived in Canada.  While this was shocking and we can't believe she's gone already, the ascites in her abdomen are what sped the death process.  She ended up skinny as a skeleton when she was a happily voluptous woman always, so that was shocking, to see her deteriorate so fast.  Anyone else go through something similar?  All of you who are still in remission or alive, prayers go out to you all and may you live as long as you hope.  Love and peace!

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marti968
Posts: 37
Joined: Apr 2013

I only did radiation and no Chemo or surgeries. All the "french-fried" tumors are still in my body in different areas.  I almost died the last time I did Chemo in 2000.  So did not do it with this MMMT.  To bad your mom did not use that option.  I have been pain free with everything so far, but I might just be one of the lucky ones.  I hope you find peace.  I lost my mom at 4 yrs. old.  But still miss her even today at 75.  Good luck and I will keep you in my prayers. Marti in AZ                                        

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marti968
Posts: 37
Joined: Apr 2013

I was stage 4 also.  Now I am cancer free as fafr as the machines can tell. 

RoseyR
Posts: 471
Joined: Feb 2011

Although I was 62 at diagnosis, not 31, I urge you to look at my post below and take heart and comfort and hope that you may survivie far longer than you imagined with this disease.

At your age, your immune system is STRONGER than those of us who are sisty!

I would also urge you to read the positive and upbeat book called "Atni-Cancer," by Dr. David S. Scherieber, which is fabulous on how to create an anti-cancer diet.

YOu want to lowe estrogen leels in your body in any way possible, too, so I would Toogle "natural aromatase inhhibiors" to see what foods naturally suppress the excessive strogen that ofen feeds cancers such as MMMT.

Also look into LDN (low-dose naltrexone), which is quite inexpensive; if ou can find an "integrative doctor" in your area, you can get him or her to prescribe it for you at a dose of 4.5 milligrams per nigh: one pill before bedtime.

BE sure that your vitamin D blood level is at least 40 to 50.  If lower, TAKE liquiid form of Vitamin D, 6,000 IU a day until bollod test shows you are up to 50.

I would also read the books "Anti-Cancer" by Dr. dAvid Sergeant Screiber and "KNoeck-OUt" by Suzanne Somers.

I would eat as many vegetables as possible, sepcially crucifers, stir-fried in olive oil or coconut oil, and take curcumin (500 mg three times a dya).  

Gluten-free oatmeal and berries are good for breakfast--rr omelettes with vegigies and herbs.  

A glass or two of red wie from SPAIN can't hurt you as long as you have it with dinner: full of resveratrol, and latest research shows that Spanish red wine lowers estrogen in our bloodstream: always a good thing!

And try to reduce stress of any kind: relax and enjoy life.  It will enhance your hormones and survival.

Love

RoseyR

cleo
Posts: 145
Joined: Sep 2009

Grade 3/4 MMT 2007 as posted previously.  I did have 20+ lymph glands removed and have left leg lymphedema but am inclined to think that assisted the NED. 

RoseyR
Posts: 471
Joined: Feb 2011

To provide hope to all diangosed with MMMT (uterine carcinosarcoma), I was diagnosed at age 62 with Stage IB uterine carcinosarcoma in Sepeember, 2010 and after six rouns of taxol/carboplatin and 25 pelvic radiatio sessions at U Penn. am astill alive and feeling very well with no sign of recurrence.

For two years AFTER diagnosis, I was quite careful with my diet--avoiding sugar or artificial seeeteners of any kind, eating only organic meat and cheese, avoidng pasteuriized dairy products, and taking 500 mgs of curcumin three times a day with meals plus 6,000 IU of vitamin D a day.  I also was on LDN (low-dose naltrexone) for the past two years  (taking 4 milligrams a day, one pill each night before bedtime).  I also have taken 20 milligrams of melatonin before bed for the past three years.   Two years ago, consulting with a naturopath named Nasha Winters in Durango, Coloardo, I was also put on a gluten-free diet although I had never had any digestive problems; she insisted that modern wheat products (as well as rye, oats, barley) create inflammmation in the intestines, diveting the immune system form attaching the random cancer cells that after age 50, we ALL have floating about.  Gluten, in short, compromises th immune ystem.

I cannot be sure I am NED because I have refused CT scans since finiishing treatment.  They wanted me to do them eveyr three months but my research showed that frequent CT scans danage the very DNA we need to fight our cancers.  I decided, for better or worse, that I would not scan until, and unless, I were having serious symptoms.  Today, four years since treatment eneded, and nearly five years since diagnosis, I am feeling very  very well and working full time at age 68.

If nothing else, I hope this gives hope to all of you diagnosed with MMMT cancer (uterine carcinosarcoma).

I would also read the books ANti-Cancer by Dr. S. Schreiber and "KnoekOUt" by Suzanne Somers.

Love to ALL!

Rosey R

 

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marti968
Posts: 37
Joined: Apr 2013

So good to see you still here RoseyR.  I am well into my 3rd year. I had bladder and kidney now left lower lung involment.  I trust my Oncologist and credit him after God for saving my life.  I still see him every 3 months and we discuss the CAT Scan or the PET Scan.  I am fortunate enough to be able to talk to him on his level and I think questions really helps you to help yourself. Marti in AZ

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marti968
Posts: 37
Joined: Apr 2013

I am in my 3rd year now how are you doing.

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Hilajoan
Posts: 21
Joined: Nov 2011

So far, so - fairly - good.  It's now nearly Sept 2015 and I'm still here.....  Mostly feeling absolutely normal, no pain, got energy and am fine.....  BUT, metastases in lung lymph node region still growing, so after allergic reaction to Carboplatin, going back on chemo on 3 Sept, for a further 18 weeks - every week.  A bit tight-chested occasionally, a bit breathless walking uphill, etc. - is that age-related, rather than cancer-related I wonder........ I am in my seventies - but normally have the energy and drive of a 30-year-old - wish the body were the same!!  I did have breast Ca a few months before the dx of MMMT and hysterectomy, and I still wonder occasionally if THAT could have metastasized, but Onc assures me it's 90%+ likely to be the MMMT - no biopsy possible, no radiation possible, so I'm stuck with chemo......  Looks as though we can survive.....  - My Onc says that Carboplatin alone is the least toxic of all the chemoes, that's why we are giving it another go - won't lose my hair with it.............................  Good luck girls - stay INFORMED and watch the Internet for new developments in treatment.  Joan

 

want_to_survive
Posts: 8
Joined: Sep 2015

my mother 51 years of age is recently diagnosed with mmmt of ovary stage 3c. Its very rare and we are hell scared. She got her debulking surgery done 3 weeks back and we are meeting an oncologist tomorrow morning. Any survivors of this cancer around?

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I am sure some of the other long term survivors of MMMT or carcinosarcoma will be along shortly but there are several on this board and also on the yahoo MMMT board.  If you go back in this thread, you will see the names of several who have survived 5 years or longer. If you have been researching on the internet, I know it is very scary and depressing (been there, done that), but much of the information is outdated.  I am also stage 3c, though mine was endometrial, and I am early in the process, having just had a hysterectomy in July and currently undergoing chemo.

The women on this board are a great source of information and support.  It's a good place to ask questions, vent, compare notes.  We are all here for you and your mom and nothing is off-limits.  

Chris

want_to_survive
Posts: 8
Joined: Sep 2015

Hi chris hope you are doing well thanks for replying. I hope we all can beat this disease wishing you best of health

want_to_survive
Posts: 8
Joined: Sep 2015

My mum 51 years of age diagnosed with uterine mmmt stage 3c. Got her debulking done 5 weeks back and doctors have planned 6 cycles of chemo of carbo taxol with no radiation. She got her first chemo done yesterday and we are very scared about the side effects. Can anyone share their stories of survival please?

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

There is a thread titled  "Ladies Going through Chemo" that can give you some idea of the side effects women currently in treatment are dealing with. I will tell you that in my case, day 3 and 4 after chemo seem to be the days that it hits me the hardest, mostly with fatigue.  The anti-nausea drugs I am taking are working very well, with just a bit of queasiness the night of day 3 this last go round.  I have completed 2 of 6 cycles of carbo/taxol so far and with the exception of pretty nasty constipation (which I jumped on earlier the second go-round), the side effects have been minimal. However, everyone reacts differently.

Your mom is lucky to have you looking out for her.  Keep hope in your hearts and minds.  There ARE long-term survivors here.

Chris

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jinkies
Posts: 8
Joined: Sep 2016

How is your mother doing? I was diagnosed in February and had a cantelope sized ovarian tumor removed and 18 weeks of carboplatin/taxol. I started getting neuropathies and trouble with my nails last 2 weeks. I am wondering what I do now? My local oncologist just wants to order CT scans and wait because he only believes in chemo. I need some advice I feel lost!!!!

namedropper
Posts: 102
Joined: Dec 2014

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.

apoohneicie's picture
apoohneicie
Posts: 6
Joined: Oct 2014

I had stage IV MMMT of the uterus, did hard chemo for 2 years and Avastin for about a year and half, have been cancer free since June 9, 2011. There is hope. Love to every warrior and survivor.

EZLiving66's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

You truly are a survivor!!  Thank heavens you found a doctor you could trust and who took you seriously.  I was recently diagnosed with UPSC, Stage 2 but almost didn't get the treatment I deserved.  The first doctor I went to pooh-poohed my concerns and told me to lose weight and come back in three months.  I switched doctors and she took me seriously and sent me to a gynecoogist who did the biopsy.  She then sent me to the gyno-oncologist who did the total hysterectomy.  My CT scan was clean and I started chemo last Tuesday.

There are so many encouraging stories on this forum.  Please keep us updated on your NED!!

 

Take care,

Eldri

Ilda28
Posts: 8
Joined: Apr 2015

how do you feel now?

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annehp
Posts: 1
Joined: Oct 2015

I flagged this by mistake. Wanted to respond To her post. I am so sorry.  I am mmmt diagnosed recently. Controversy over stage. Either 1a or 3b.  Big difference. 

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Welcome to this board.  I am sorry about your diagnosis, but glad you have found us.  The first days while everything is being sorted out are so hard and confusing.  Have you had a hysterectomy yet?  The staging is usually done after surgery.  Are they not sure the cancer has spread?

Chris

namedropper
Posts: 102
Joined: Dec 2014

I am 1 year NED stage 2 grade 3 MMMT uterine cancer. I guess that makes me a survivor.

 

ghee56
Posts: 4
Joined: Oct 2011

I am 11 years out from mmmt surgery. Thankful for every day!

Ilda28
Posts: 8
Joined: Apr 2015

u only had surgery ?

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Kerrey
Posts: 2
Joined: Sep 2016

Hello all. My mother has been diagnosed with MMMT clear cell ovarian cancer. She is 53 (52 at time of diagnosis). We are searching for any available information, resources, and to connect with others, as you know this is a very rare cancer with limited information out there. She was diagnosed in Feb. 2016 with stage III ovarian MMMT clear cell. She also tested positive for BRCA2, the gene mutation for ovarian and breast cancer. She just finished 18 weeks of chemo with taxol/carboplatin. At this point we are waiting for further testing to see where she stands and searching for other treatment options to fight this. Any information you have would be greatly appreciated as well as to hear your stories. I am going to get her signed up on here as well and would like to help connect her with others experiencing this battle. Thank you.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

By  any chance, is jinkies your mom?  Sounds like you are describing the same situation.  In any case, welcome to the board; it's a great source for information and support.

I was diagnosed with endometrial carcinosarcoma (MMMT) June of 2015.  I had a total hysterectomy, 6 rounds of carbo/taxol every 3 weeks, and 3 sessions of brachytherapy.  My post-treatment scan in May showed me to be NED.  Many women, though not all, have some form of radiation following chemo.  You can read more details of my journey if you click on my name on the profile.

Also, there is also a yahoo group specifically for those with MMMT.  I don't have the link off the top of my head, but I will find it and send it to you.

There are several long term survivors on this board and I'm sure they will chime in.  One thing, though, you might consider starting a new thread.  This one is so long and bulky that it is sometimes hard to find a new post and respond.

Peace and strength,

Chris 

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Here is the link to the Yahoo group:     https://groups.yahoo.com/neo/groups/UterineMMMT/info

There is also a Facebook group, if you or your mom are on Facebook:    https://www.facebook.com/groups/carcinosarcoma/

namedropper
Posts: 102
Joined: Dec 2014

I am 23 months NED. I was stage 2 grade 3 with MMMT uterine cancer. I had surgery and 5 rounds of chemo. I am going for more CT scans on the 26th of Sept because they think something might be brewing because my CA 125 has been going up every month for the last 3 months. I have my fingers crossed.

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