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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

RoseyR
Posts: 471
Joined: Feb 2011

Dear Madcoast,

Just sent you a response thanking your for this narrative but somehow (chemo brain?), I addressed it "Carolenk" instead of "Madcoast."

Hope you'll see it and respond, nonetheless.

Sorry,
Rosey

RoseyR
Posts: 471
Joined: Feb 2011

Dear Madcoast,

Just sent you a response thanking your for this narrative but somehow (chemo brain?), I addressed it "Carolenk" instead of "Madcoast."

Hope you'll see it and respond, nonetheless.

Sorry,
Rosey

RoseyR
Posts: 471
Joined: Feb 2011

Dear "Madcoast,"

Haven't seen you on the boards for some time so hope you are still well.

In the meantime, some of us would love to know who your environmental doctor is as he/she seems to have made such great suggestions.

Am also amazed that you did "three to four hours a day of infrared sauna" as I've read elsewhere, and often, that one hour is the max any of us should do. Am having a hard time FINDING an infrared sauna even in center city Philadelpia.

Best,
Rosey

RoseyR
Posts: 471
Joined: Feb 2011

Dear "Madcoast,"

Haven't seen you on the boards for some time so hope you are still well.

In the meantime, some of us would love to know who your environmental doctor is as he/she seems to have made such great suggestions.

Am also amazed that you did "three to four hours a day of infrared sauna" as I've read elsewhere, and often, that one hour is the max any of us should do. Am having a hard time FINDING an infrared sauna even in center city Philadelpia.

Best,
Rosey

RoseyR
Posts: 471
Joined: Feb 2011

Dear "Madcoast,"

Haven't seen you on the boards for some time so hope you are still well.

In the meantime, some of us would love to know who your environmental doctor is as he/she seems to have made such great suggestions.

Am also amazed that you did "three to four hours a day of infrared sauna" as I've read elsewhere, and often, that one hour is the max any of us should do. Am having a hard time FINDING an infrared sauna even in center city Philadelpia.

Best,
Rosey

ghee56
Posts: 4
Joined: Oct 2011

I was diagnosed with 1c MMMT in March 2004. Had a complete hysterectomy and internal plus external radiation. Still here. Watch my diet and excercise daily. Still worry...lots of small scares, but hanging in there. Would love to hear from other long term survivors. All of you out there...keep at it. I did get a diet from a book called What to Eat when You Have Cancer....stuck to this for the first 18 months after...think it helped.

RoseyR
Posts: 471
Joined: Feb 2011

Dear Ghee 56,

Scrolling bac through these messages was so impressed to see you're still well nearly eight years (is that RIGHT?) after diagnosis.

Wow!

Where were you treated, I wonder?

And on the whole, what kind of diet have you been on for past five years? (Just the basics--are you vegetarian? do you eat any dairy or meat? no sugar, I assume.)

And what kind of exercise have you been doing per week or day?

I think your answers would be helpful to all of us coping with this diagnosis!

Appreciatively,
Rosey

RoseyR
Posts: 471
Joined: Feb 2011

Dear Ghee 56,

Scrolling bac through these messages was so impressed to see you're still well nearly eight years (is that RIGHT?) after diagnosis.

Wow!

Where were you treated, I wonder?

And on the whole, what kind of diet have you been on for past five years? (Just the basics--are you vegetarian? do you eat any dairy or meat? no sugar, I assume.)

And what kind of exercise have you been doing per week or day?

I think your answers would be helpful to all of us coping with this diagnosis!

Appreciatively,
Rosey

RoseyR
Posts: 471
Joined: Feb 2011

Dear Ghee 56,

Scrolling bac through these messages was so impressed to see you're still well seven years (is that RIGHT?) after diagnosis.

Wow!

Where were you treated, I wonder?

And what kind of diet have you been on for past five years? (Just the basics--are you vegetarian? do you eat any dairy or meat? no sugar, I assume.)

And what kind of exercise have you been doing per week or day?

I think your answers would be helpful to all of us coping with this diagnosis!

Appreciatively,
Rosey

VOD3
Posts: 1
Joined: Feb 2012

Hello my mother n law is was diagnosed with MMMT she had a hysterectomy but she has it now outside her uterus... Her Oncologist said it was untreatable but going by what I have read on this forum. Chemo looks to be an option. she had 2 scans in august which showed a growth and then blackening. they then took a scan in Novemeber and it was clearly visible in half her stomach. she was only told 3rd January it does not look good. I am sorry for asking but its hard getting answers on a rare cancer. I am happy you have overcome this cancer too .. regards
Van

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

What has been done for your mother-in-law to this point? You mention scans but not what she has gone through to treat it.

Cindy

Sasha413
Posts: 1
Joined: Jun 2012

Our family just found out last Friday that my mom has MMMT, she is 55yrs old. All I heard was it's an aggressive cancer and panicked.
Finding this site, with woman in similar cases and still fighting and keeping strong is so much help to us all. I will keep track of her progress and update information as best I can.
Also, wanted to know where is the best place to get this rare cancer treated? I've heard MD Anderson Cancer Center in TX have treated more patients with this particular diagnosis than anywhere else in USA. Please post for hospital recommendations. Thank you.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Welcome!! Sorry to read about your mom's diagnosis, but know the group of women on this site are very helpful...we're a team!!!

I was 53 years when diagnosed with MMMT at stage 3C, having gone to 1 lymph node, but no where else...yeah! Tell me has your mom had hysterectomy as to how they know it's MMMT...found anywhere else? This is generally how they stage us, using pathology.

Might I suggest looking for a doctor who's knowledgeable with this type cancer, vs looking at a hospital. Have no clue about MD Anderson but if you found it to be best place for this cancer, now search for the best doc --- want an OB oncologist. What type doc does your mom have today?

You'll receive some other good responses from the gals, so hang on.

Best to you and your mom.....

Hugs,
Jan

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jazzy1
Posts: 1387
Joined: Mar 2010

Oopsie....button gone wild!

RoseyR
Posts: 471
Joined: Feb 2011

Dear Sasha,

Yes MD Anderson is a premiere place for treatment. Other good centers include Sloan Kettering, Johns Hopkins, and Massachusetts General--although if I could choose where to be treated (after surgery), it would the Keith Block Center in Illinois, right outside Chicago. If you read his book Life Against Cancer, you will see what advanced forms of chemo he uses and how holistic the treatment is. I often wonder if CTCA (Cancer Treatment Centers of America) would be a good option given their own holistic approach to treatment, with a team of doctors working together on treatment, supplements, nutrition, and the emotional aspects of the disease.

I would also recommend finding a good "integrative" doctor (an M.D. who knows how to treat cancer holistically and how to use supplements to make treatment less painful and perhaps more effective. I have sent my own prescribed protocol for supplements during taxol/carboplatin to a few others; if you're interested, let me know by emailing me at the top left of our site and I'll be happy to share with you. (I am one year out of treatment and feeling great after 6 rounds of chemo and 25 pelvic radiation sessions. Other than losing my hair, I had no side effects from treatment although my blood counts did fall after the fourth round of chemo, causing one delayed treatment. But no nausea, no loss of appetite, no aches or pains, no neuropathy, not even fatigue during treatment--although I was a bit tired when it was all over as my hemoglobin was low.

Best,
Rosey

RoseyR
Posts: 471
Joined: Feb 2011

Dear Sasha,

Yes MD Anderson is a premiere place for treatment. Other good centers include Sloan Kettering, Johns Hopkins, and Massachusetts General--although if I could choose where to be treated (after surgery), it would the Keith Block Center in Illinois, right outside Chicago. If you read his book Life Against Cancer, you will see what advanced forms of chemo he uses and how holistic the treatment is. I often wonder if CTCA (Cancer Treatment Centers of America) would be a good option given their own holistic approach to treatment, with a team of doctors working together on treatment, supplements, nutrition, and the emotional aspects of the disease.

I would also recommend finding a good "integrative" doctor (an M.D. who knows how to treat cancer holistically and how to use supplements to make treatment less painful and perhaps more effective. I have sent my own prescribed protocol for supplements during taxol/carboplatin to a few others; if you're interested, let me know by emailing me at the top left of our site and I'll be happy to share with you. (I am one year out of treatment and feeling great after 6 rounds of chemo and 25 pelvic radiation sessions. Other than losing my hair, I had no side effects from treatment although my blood counts did fall after the fourth round of chemo, causing one delayed treatment. But no nausea, no loss of appetite, no aches or pains, no neuropathy, not even fatigue during treatment--although I was a bit tired when it was all over as my hemoglobin was low.

Best,
Rosey

RoseyR
Posts: 471
Joined: Feb 2011

Dear Sasha,

Yes MD Anderson is a premiere place for treatment. Other good centers include Sloan Kettering, Johns Hopkins, and Massachusetts General--although if I could choose where to be treated (after surgery), it would the Keith Block Center in Illinois, right outside Chicago. If you read his book Life Against Cancer, you will see what advanced forms of chemo he uses and how holistic the treatment is. I often wonder if CTCA (Cancer Treatment Centers of America) would be a good option given their own holistic approach to treatment, with a team of doctors working together on treatment, supplements, nutrition, and the emotional aspects of the disease.

I would also recommend finding a good "integrative" doctor (an M.D. who knows how to treat cancer holistically and how to use supplements to make treatment less painful and perhaps more effective. I have sent my own prescribed protocol for supplements during taxol/carboplatin to a few others; if you're interested, let me know by emailing me at the top left of our site and I'll be happy to share with you. (I am one year out of treatment and feeling great after 6 rounds of chemo and 25 pelvic radiation sessions. Other than losing my hair, I had no side effects from treatment although my blood counts did fall after the fourth round of chemo, causing one delayed treatment. But no nausea, no loss of appetite, no aches or pains, no neuropathy, not even fatigue during treatment--although I was a bit tired when it was all over as my hemoglobin was low.

Best,
Rosey

Clouth
Posts: 10
Joined: Jul 2012

Hi Rosey and everyone,
My mom got diagnosed with carcinosarcoma last week. Her pet scan showed it confined to the uterus, but we won't know the stage until after surgery as you all know. I did search online and, wow, depressing. Good to see happier stories here.

She is 77 and otherwise in pretty good health. I am her primary caregiver. I am 42 with 3 kids ages 12, 10, and 7 . She wii probably move in with us now. I am nervous about everything. I have my moments of calm and panic. She usually panics but has been so brave so far, I am so proud of her.

We are going to dr. Baruta at mass general. He is the director of the gyn- onc dept. He seems good, I hope so.

Hope to get in touch with some of you! I did sign up at the yahoo group too. I am an Internet researcher for better or worse, but will have to limit it because it is too much. I am grateful and hopeful though that my mom will not get online with this!

kris

Clouth
Posts: 10
Joined: Jul 2012

Hi Rosey and everyone,
My mom got diagnosed with carcinosarcoma last week. Her pet scan showed it confined to the uterus, but we won't know the stage until after surgery as you all know. I did search online and, wow, depressing. Good to see happier stories here.

She is 77 and otherwise in pretty good health. I am her primary caregiver. I am 42 with 3 kids ages 12, 10, and 7 . She wii probably move in with us now. I am nervous about everything. I have my moments of calm and panic. She usually panics but has been so brave so far, I am so proud of her.

We are going to dr. Baruta at mass general. He is the director of the gyn- onc dept. He seems good, I hope so.

Hope to get in touch with some of you! I did sign up at the yahoo group too. I am an Internet researcher for better or worse, but will have to limit it because it is too much. I am grateful and hopeful though that my mom will not get online with this!

kris

JMoses
Posts: 7
Joined: May 2012

Kris,
My 70 year old mother was diagnosed this past Mother's day. I just sent you a message to add me as a friend. I posted here almost immediately. I can give you more details off line.
Julia

Clouth
Posts: 10
Joined: Jul 2012

I added you... Can't figure out how to email though. My email is clouth@gmail.com.

Fayard's picture
Fayard
Posts: 390
Joined: May 2011

Did your mom had her surgery?
What was the outcome? stage, grade?

Best regards

Clouth
Posts: 10
Joined: Jul 2012

Yes on 7/23. It is stage 3c1. It was in 2 lymph nodes and about 90% through the uterine wall. Clean washings. She starts carbo taxol tomorrow!

Thanks for asking. :)

Fayard's picture
Fayard
Posts: 390
Joined: May 2011

Keep us posted, please.

Clouth
Posts: 10
Joined: Jul 2012

Ok. :)

ellaintexas
Posts: 2
Joined: Sep 2012

I had been having spotting for several years along with weight gain in the pelvic area. In ten years I went to eight doctors and was told it was because I was post-menopausal or that I was eating too much. Couldn't get anyone to send me for any tests though one doctor said she'd do some "digging around inside" and see if she spotted anything! No tests first though. Finally I found a doctor who immediately sent me for tests and then to an oncologist. Within 4 weeks I had major surgery, a complete hysterectomy and my spleen removed. The tumor in my uterus was so massive the oncologist said it must have been growing for at least ten years.The diagnosis was MMMT (carcinosarcoma)stage 3c. I was told 95% of the cancer was removed and I need to undergo chemo for the little that is in the lymph glands. I am feeling great and am very optimistic about the outcome. I will beat this. I don't have grandchildren yet and when they do come along I don't want them to just be told about me, I want them to remember me. Baking cookies, reading to them and doing all the grandmotherly things.

Hang in there ladies! We are stronger than we think. I should have been dead with this monster after only a few years. I survived ten with it and the rest is going!

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Welcome and so sorry to hear about your long 10 yr journey. Wow...now that's persistence, but sure don't like the outcome...CANCER.

I'm a stage 3c MMMT survivor -- cancer found in 1 lymph node, had total hysterectomy, 6 rounds chemo plus 33 sessions pelvic radiation all in 2009. Today 3 years NED (no evidence of disease), I'm so very grateful to be here, as learning to love each and every minute of each and every day. We never know what tomorrow will bring.

Keep up the positive mind, as our minds do control our bodies. Keep the goals of seeing your grandkids one day and doing all the grandmotherly things. It will happen, you must believe that deep down inside as well as your mind.

Enjoy life, it has an expiration!
Jan

ellaintexas
Posts: 2
Joined: Sep 2012

I am constantly having fluid build-up in my chest and abdomen. This will be the fourth time it's drained. I had asked my oncologist about it before my surgery and he said it was caused by the tumor. He assured me that after it was removed the problem would go away. Well, the tumor was removed 7 weeks ago and I still have it. Asking him again just brought a "the body will eventually take care of it" response.

Does anyone else get this and if so do you know what causes it and when it will stop?

Thanks. And BTW how do I post without replying to someone? Can't figure that out! LOL!!

debrajo's picture
debrajo
Posts: 1072
Joined: Sep 2011

Hi Ellain! Go back to the uterine page where all the questions are. In the left side there is a place where it says "Post new topic" Click there and it will take you to the page where you can post your question/topic. Best, Debrajo(a;so in Texas)

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marti968
Posts: 36
Joined: Apr 2013

Thanks will go try and see if I can do it.  It shoujld be easier than that.  Should be at the top of the page to give one the choice to post comment or respond to comment.  aoh well just a little thing.

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

I have lost about 100 pounds since this picture.  I went from 119 to 398 from 09-2000 to 12-2000.  Since cancer have finally lost and am losing the weight that I wanted to lose and couldn't.  I an scooter dependent so do not get as much exercise as I want to do.  Am unable to take more than a few steps then fall so I pretty much stay on the scooter. This picture is in the BX-Power Zone behind me note the TVs  I am learning how to use my cell phone and still need to know so much about it. So I am really listening to the clerk.

I live on base now since they offered the base houseing to the retired Military so I took advantage of the offer.  Love living here but the security makes it extremely hard for me to live here much longer and am going to move very soon.  Depending on the results of the ER visit 4 days ago the place I am going to move to is still pending.

txtrisha55's picture
txtrisha55
Posts: 544
Joined: Apr 2011

Which BX PowerZone?  What base do you live on?  I live in Dallas,TX and work for the Exchange HQ.  Best wishes to you and hope you find a new place that is as good as where you are. trish

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

I have moved.  I used to live at Luke AIr Force Base Glendle, AZ.  Loved living on base but the security was too high and no one could come in to see me unless I was able to go to the south gate to get them a pass or if I wsent off base to McD's and picked them up in my car or get in theirs if I could even get in.  I ride an adult scooter and can't walk so well anymore and get tired of kissing he floor, LOL!  So like a good girl listen to my doctor and ride the scooter to shop etc or the little guy that stays in the house so it stays clean ahnd I can get around. I rented this home because I have so much "junk" to get rid of and am working on that with the housekeepers and anyone else that wants to take something off. So when the lease is up am going to move into Independent Living (I can be there with the aides and can stay until the end as long as I have the aides and other help)

txtrisha55's picture
txtrisha55
Posts: 544
Joined: Apr 2011

dup

txtrisha55's picture
txtrisha55
Posts: 544
Joined: Apr 2011

So sorry to hear about your 10 year journey. I also am in Texas in the Dallas area. I was post menaposed when I started flooding in March 2011. Had a D&c which was sent to pathology. Found out 1 April that it had MMMT cancer cells .Had full hystrectomy 8 April which said it was stage 3c1 becuase it was in 1 lymph node. I had 6 rounds od carbo/taxal and no radiation. So far so good and I am NED. I did not have and fluid build up so I cannot give you any advise in that area. There are other ladies on this site that have had fluid build up. As debrajo told you to post a new subject to go to the main page and click on post a new topic. Wishing you all the luck now that you have joined this group sorry you had to join it thoiugh. trisha

I believe
Posts: 38
Joined: Oct 2012

Hi All,

I would like to share with you my story.

My mom (71 years old) started bleeding early september 2012 and she didnt take it seriously and thought it is because she was tired from working at home, after 1 week of bleeding a mass fell down from the uterus having a size of 10*5.3*4cm, she was shocked to see this tumor and she put it in a bag to send it for test.

The results of the test was that its an MMMT or carcinosarcoma cancer. The doctor informed us that he cannot rely only on the mass that fell down and since in the IRM a small part of the mass is still in the uterus, he would need to do another test after the operation. The results of the remaining part in the uterus was also MMMT so he infomed us that a total hysterectomy and removal of lymph nodes is required.

The operation took 6 hours and it was painful to my mom but she's doing fine now after 2 weeks of the operation and recovering.

The uterus and all the lymph nodes and other related organs were sent to test and the results were that the cancer is only confined in the uterus (penetrated 1/3 of the myometrium)and all the other parts were clean.

The doctor informed us that its stage I or II of carcinocaroma due to the size of the mass and that she will need to have 4 sessions of chemotherapy (Endoxan & Carboplatin).

We will start the first session of chemo on the 16th of November 2012. Mom is feeling positive and she's willing to fight this beast. The doctor said that this treatment will not make the hair fall and she's happy for that.

Finally, I would like to wish you all ladies the good heath because you are very precious to your families and I thank God everyday for giving me this great MoM.I will keep you in my paryers and If you believe in GOD, you will be healed.

If you have any suggestions or if you think that the treatment (Endoxan & Carboplatin) is not the right treatment just let me know.

God Bless you

txtrisha55's picture
txtrisha55
Posts: 544
Joined: Apr 2011

Stay off the Internet, there is not a lot of updated information there. Did they do a tissue assay or estrogen positive or negative test? The tissue assay shows which chemo drugs are the best for the tumor that your Mom had. The estrogen test tells if the tumor is hormone positive or negative, if positive she will need to try and stay away from hormones that have positive effect on her. I was 55 when I was diagnosed last year with carsonoma sarcoma (MMMT) cancer. The tumor in the uterus was a 1A but it was found in 1 lymph node so upgraded to stage 3C1. I had 6 rounds of carboplatin/paclitaxel and no radiation. The paclitaxel side effects was that you do lose you hair. Mine was down the middle of my back. Cut short before the first chemo then shaved it bald once it started falling out. For me, it was no big deal. I just went bald. I could not find hair loss as a side effect of either of the chemo drugs listed in your message. Drink plenty of liquids to help with the constipation that does come from all the drugs. I did not take a lot of supplements during the chemo as my doctor told me not to, but there are some ladies on this site that did. Ask her doctor. A lot of the ladies also changed their diets. Make sure you get copies of all her reports, it helps to have them to refer back to them. Will be praying for a complete recovery and good outcome from the chemo. trish

BeckyC
Posts: 11
Joined: Oct 2012

Good Morning,
I was so interested to read your story because my mother who is 82 was also diagnosedwith uterine cancer in Sept 2012. She had light bleeding but they also found a bloody cancerous mass in uterus after all the tests. She had an abdominal hysterectomy last week ( which only took 1.5 hours thank goodness!) and the surgeon said it was MMMT stage 1C ( at least for now- the pathology isn't back yet) There was no indication that the cancer was outside the utereus but was through the endometrium and myleometrium but not through the serosa. Our gyn/onc however said that due to the extreme agressivness of this cancer my mother will have both chemotherapy and radiation. And she also said her hair would fall out. She hasn't given us the exact chemo drugs yet - needs to get the pathology back and is looking at clinical trials too. I would ask your doctor about radiation - that seems to be very effective against this cancer. My son is a physician (emergency medicine) so not a cancer doctor but says it is VERY important to have a gynecologist/oncologist for treatment of this disease. Doctors are seeing more of this kind of cancer as women are living longer and I think treatment is better. Dont' read survivial stats on the internet - scary. But my son says there are very few studies of this kind of cancer and the high morbidity rates are due to the older age and generally poorer health of many older women.
I will pray for your mother and wish you the very best. I hope this information helps some!

I believe
Posts: 38
Joined: Oct 2012

Trish and Becky - Thanks a lot for your prompt replies and valuabe information.

Trish- for the estrogen test, I am not sure if it was part of the test but in the test results they mentioned the following sentence (its in french and i did the translation) " Epithelial component and Cytokeratin CK7 and CKC and positive EMA" I am not sure what this sentence means.

Becky - For the radiation point. I will make sure to ask the Doctor why he didn't suggest radiation treatment.

Thanks again

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I as well was diagnosed with MMMT and had it in 1 lymph node, so I was stage 3c....similar to Trisha. I had carboplatin and taxol which is GENERALLY the first round of chemo for our cancer, but everyone is different. Taxol is the drug which causes one to loose hair and yes I was a "bald eagle".

My doc suggested radiation since the chemo was in pelvic node, and wanted to zap the node affected. Since your dear mom didn't have it outside of uterus, possibly why not suggesting radiation, but do ask. Only reason I'd check further on radiation, this MMMT is a very aggressive type of uterine/ovarian cancer and one must hit it really, really hard. Fill all guns with lots of ammo, according to my doc. My butt was dragging by the end of treatments, but here I am today, 3 years since treatments ended and have NO EVIDENCE OF DISEASE.

Truly don't know it all, but can only suggest what my docs recommended. As well, try to find a doc who's familiar with MMMT and hoping you have OB/oncologist, not medical oncologist. This as well keeps your guns loaded to fight.

Your mom is so lucky to have you by her side...makes her journey so much easier.

Jan

I believe
Posts: 38
Joined: Oct 2012

Thank you Jan.

I agree with your points that's why I want to double check on the treatment as I don't my mom to have a light treatment and at the end of the treatment it would come up again.

Actually two doctors are handling my mom's case,the first doctor who did the operation is Gynecologic/oncology and the other who's handling the treatment is Hematology-Oncology

Excellent to know your story that after 3 years of treatment there is NED. I wish you all the health.

Thanks

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

One other question you might ask, why the mix of drugs they're suggesting for your mom? As mentioned the ones I had -- carboplatin & taxol -- are the first line used most often. But...we all know different strokes for different folks, plus different and new updates for drugs. Curious if nothing else if you have an answer.

Both the type of docs you suggested are EXCELLENT. Can't remember if this was suggested...DON'T BOTHER TO RESEARCH THIS PARTICULAR TYPE CANCER....nothing looks good. More and more treatments we're finding TODAY are showing good results with long-term results. As well, these good results aren't showing up on the latest notes.

As well, I'm on a yahoo group for MMMT and can tell you a good chunk of our groupies are survivors 5+ years. This gives all of us hope to know the future can be bright and cheery.

Keep the faith as your mom will be with the long termers....

Jan

I believe
Posts: 38
Joined: Oct 2012

Hi Jan,

I asked the doctor why he is suggesting the drugs Endoxan/Carboplatine instead of Taxol/Carboplatine for my mom, his answer was that Taxol/Carboplatine would be too strong for her taking into consideration that she's 72 years old and have some medical issues (overweight, taking diabetes drugs, cholesterol and blood pressure drugs).

I told him that I heard that for MMMT and since it is aggressive the standard treatment would be a mixed of both radiation and chemotherapy, he said that is correct but again due to age of my mother and her general health he would recommend a moderate treatment instead of too strong treatment.

I hope that the proposed treatment would be enough to heal my mother and I will keep you updated with any new information.

Rab

DrienneB
Posts: 87
Joined: Aug 2013

Hi Jan,

I'm encouraged by your posts, and those of many others on this site. I was 51 and diagnosed this past April/May with MMMT, Stage 3B. After surgery, I started 6 courses of Taxol/Carboplatin in June. I'm hoping to be finished by the end of September, but might have to delay my next course (5th) due to low Neutrophils.

After my surgery, my parents--both medical professionals--were so discouraged by the statistics they suggested I might consider opting out of chemo!! It's so great to hear from you and others, and not feel doomed and in solitary exile! Moses asks God to "teach us to number our days," and I don't mind thinking more seriously about a closer end than imagined. Yet, like all of us here, I want to live and do what I can to fight this, and am so glad to know of other peoples' experiences.

Cheers to everyone here who is seeking to learn more and encourage others!

txtrisha55's picture
txtrisha55
Posts: 544
Joined: Apr 2011

No one has an expiration stamp on them, as there is only One that can tell when that will be.  Fight with all your might.  Your parents are may be reading information that is based on old statistics and not current.  Medicine is changing and new technology is coming along.  I was diagnosed in April 2011, had complete hysterectomy with 10-12 lymph nodes removed.  I was told it was stage 3C MMMT.  I had 6  carbo/taxol and no radiation.  I just pasted my two year mark from date of last chemo treatment and I am no evidence of disease (NED). 

Remember we are here to support you.   Praying for all. trish

 

DrienneB
Posts: 87
Joined: Aug 2013

Trish,

 

I'm very encouraged to hear that you're doing so well! My staging at diagnosis/surgery is similar to yours and I am also close in age. Fifty-two. I'll have my last carbo/taxol treatment this week, and am trying to decide about radiation.

 

 

I have high myometrial invasion and malignant cells in my washing. Two radiological oncologists are in favor of external pelvic radiation, but my surgeon (gynecological oncologist) is against it. She believes we should not do radiation until/unless another tumor develops in my pelvic region. But I am still mulling the decision over and praying about it. I have an appt. tomorrow with one of the radiological oncologists, but will probably not be ready to decide for a little while longer.

 

 

Did you consider radiation therapy? Were you advised against it? In my case, I actually brought it up, and then was referred to the other doctors.

 

 

I’ve been doing okay with the chemo, but am anxious to move on from patient mode. Are you doing anything differently since your diagnosis (exercise, diet, etc.)? I thought I was living in a pretty healthy way before all of this happened, so am not sure how crazy to get over this thing. I don’t want to be obsessed with the issue, but want to do what I can.

 

And I believe the outcome is in God's hands, and am asking for a willing spirit either way. I am greatly relieved to be reminded via the stories/comments/encouragements in this group and others that we are not statistics.

 

 

Best to you,

 

Jane in Berkeley, CA

 

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

Where is this group.  It would be nice to see positive for a change.

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

Oh I just learned so much from your comment.  How lucky to have a son as a doctor.  I fit right in with "tBut my son says there are very few studies of this kind of cancer and the high morbidity rates are due to the older age and generally poorer health of many older women.he older person".  Gives more hope this message.

ghee56
Posts: 4
Joined: Oct 2011

Don't read too much on the Internet. I read a great comment by a writer who had just been diagnosed with colon cancer. He said the weatherman predicted sun for the next day, but it snowed...cancer survival predictions are just like that. Just a general guess...not specific to your Mom. I did not have chemo, but needed no help during radiation...drove myself. Hope your mom has similar success.

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

3-29 D & C then told 04 02. GYN sent me to GYN Oncologist

I am 73. I guess I have the rarest MMMT. It is a result of the Fibroid Tumors if I am understanding it correctly.  Or at least I do have Malignant Mixed Muellerian Tumor for those of you who do not know what it is. It is only in the Uterine Area and they left the large Tumor in there after the D and C 3-29-2013. So I am just starting this mess. I was not even going to do a Hysterectomy since I am not in the greatest health with lack of thyroids and Parathyroids, Erratic Blood Sugars due to the thyroid and parathyroid problems. I have Emphysema. Am way over-weight at 205 lbs (used to be 398 in 09-2000 started weight at 119 until these glands were removed. I am only 5 ft 2. I has taken all the years to get down. Any way, Chemo is pretty bad and am not convinced to do it. I cancelled surgery since i am moving. Do not even want to do that really. I do not even know where to start. I live alone and no one has called. I called a ho****e and they were helpful for later on when they are necessary. You all seem to have lived a lot longer than I have found on the medical sites that I researched. So that is some hope. So now there are at least  2 of us Carrie. 

 

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