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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

bkramer0412
Posts: 4
Joined: Sep 2011

I was on the drug for two twenty eight day cycles. I had no side effects. However my tumors became more active. I was in phase 2 of the clinical trial at Dr Sharma's office in Hinsdale, IL. I was on the drug August and July of 2011. I begin a new clinical trial the 28th of September. Barb

kimberlite
Posts: 5
Joined: Aug 2011

sorry it didn't work for you.
howlong ago did you use this drug and at what hospital?
thanks
eric

madcoast
Posts: 9
Joined: Apr 2011

i was diagnosed with stage IIIa uterine carcinosarcoma after an hysterectomy in Jan 2009: I was 59, in good health with healthy habits and no previous serious illness.

Although my pelvic wash was positive and deep endometrial invasion but my lymph nodes were clean. My surgeon recommended intensive chemo cocktail and full pelvic radiation. But the metaphor of 'waging war on cancer' did not resonate at all with me. A month later, I traveled from Charleston SC where I live to Boston. Went to Dana Farber, had my pathology re read and had a consult: the next day, i did a group consult at Mass General where I heard a suggested treatment plan that i was willing to try as well as the name of an oncologist at the medical university down the street from my house.

At the advice of my environmental doctor, I began taking turmeric and other anti inflammatories (cancer is inflammation), upped my dosage of CoQ10, EFAs,A,D,E and several chelators and L Glutathione (all folks with cancer have low levels) and LDN (google LDN: it is the secret to success and costs only $20 per month). I had all my dental amalgams replaced with ceramic fillings and I pulled out my root canals.

Four months later after I had healed sufficiently, I began 6 treatments of Avastin, nothing else. My oncologist does not believe in scans, just physical exams (in front of a group of medical residents)--which is good because there is a growing body of data to suggest that frequent scans just facilitate distant metatasis.

In the fall/winter of 10, I had a 'local recurrence' in the upper vaginal area: my oncologist thought it was pre existing (before the surgery) and just had 'matured' enough to be visually seen by my oncologist although the radiologist was impressed that he had even seen it. I did consent to 6 sessions of brachytherapy radiation although I had very severe side effects.

And during the winter of 11, I did a 4 week intensive bio detox program which consisted of oxygen and IV therapy for 2 hours every day, 120 ounces of alkaline water, more chelators, and 3-4 hours a day of infrared sauna. I also was walking or exercising 40-60 minutes a day.

I do green drinks, take lots of supplements, dramatically limit my intakes of sugars(no corn syrup at all), eat lots of colorful fruits and vegetables, exercise and stretch regularly (check out www. stretchingusa.com)....as well as maintain a very full professional schedule.
I have invested alot of time of learning about 'how to live successfully with cancer (cause we all have it even if it is much less active at any one time)...and discovering what makes good cells go bad...and reducing those things that stimulate good cells going bad.

There is alot of very creative approaches coming out of the EU and China. And the US protocols have not significantly advanced in the last 50 years.

My original oncologist threatened me and told me that I would be dead within a year if I did not do exactly as he said. And it has been nearly 3 years with no evidence of metatasis.

NED without chemo and proud of it

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Madcoast,

Thanks for the info and glad you are NED. You signed off "NED without chemo and proud" - however Avastin is on my list of chemotherapy agents. I'm confused. Mary Ann

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

I think when someone uses the term "chemo," it is in reference to the anti-metabolic agents that damage healthy cells along with malignant cells.

Avastin is a monoclonal antibody that falls in the category of "targeted biological therapy." It is an anti-neoangiogenesis agent (supposed to stop the growth of new blood vessels that feed cancer).

I wouldn't consider Avastin to be "chemotherapy" just because it is used to treat cancer.

RoseyR
Posts: 471
Joined: Feb 2011

Carolenk,

Read carefully your sequence of chosen treatments since diagnosis of IIIB in 2009; clearly, you've done well.

And should I have a recurrence of my own Stage IB MMMT (60% myometrial invasion but 20 clear pelvic lymph nodes and clear margins) diagnosed a year ago, am not sure I will go the traditional chemo/rad route--for many of the reasons you cite.

In fact, am considering starting intravenous C ASAP--for it's been a month since my last chemo. Used my summer off as a college instructor to pursue some research and saw fascinating studies done by Jeanne Drisko (U of Kansas) re two women with, get this, stage IIIC ovarian cancer who didn't follow oncs' instructions--and DID take antioxidants during chemo, notably Co-Q 10, C, E succinate, carotenes--and AFTER treatment refused further 'consolidation chemo" in favor of intravenous C.

Three years later, they were both NED!

Granted, I don't know whether their cancers were MMMT, or serous, or papillary, but stage IIIC ovarian cancers are rarely NED after three years regardless of what treatment one has chosen. Moreover, I've found that there are affinities between some forms of uterine and ovarian cancers. (As you likely know, there is MMMT of the ovary, not merely the uterus.)

Am sorry to hear your vaginal brachyterapy sessions (six are a LOT) were so hard on you. Indeed, my own radiological onc--although she at first thought I'd have both external and internal radiation treatment--restricted it to external for two reasons:
"Your tumor wasn't that close to your cervix"; "I've designed the external radiation to target your vaginal vault in addition to other targets"; and "I'm finding more and more that vaginal brachytherapy is too toxic for many of my patients." (This is at a center termed by ACS "one of the top ten in America," by the way.) However, should I have a recurrence in vaginal vault, I'll of course blame her for changing her mind on the treatment!

A vital QUESTION: How expensive were your intravenous treatments? How often did you have them? And for how long a period? (I have great med benefits but as you know, they won't cover intravenous C.)

Finally: I had four teeth extracted right before chemo: two, wisdom teeth but two others that happened, coincidentally, to be molars with prior root canals: chronic sources of inflammation. Felt curiously better, more energetic, within a DAY of these extractions and am thinking of sking my dentist to pull any other molar that had a root canal.

Best,
Rosey

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

I've read of the correlation between root canals and cancer. amalgam fillings are also of grave cause for concern. Better fewer teeth than mostly dead, eh?

Like your style of writing.

claudia

madcoast
Posts: 9
Joined: Apr 2011

when i first started the intensive bio detox program (for a month), i did intravenous L Gluthathione, Alpha Lipoic Acid, and vitamin C (and others) twice a week (taking a total of 2 hours for the infusions). I know return every 2-3 weeks for a day: IVs, oxygen therapy (have actually been considering doing time in a hyperbaric chamber) and 2-3 hours of infrared sauna. The IVs were about $120 a pop
I have a great health insurance policy but it does not pay for anything that does not benefit big pharma (dont get me started on that one)...so it only paid for a wee bit of the bio detox...and a very wee bit of amalgam removal and root canal removals.
If you have an enlightened dentist, you should also ask about 'peridontal legiments' that were left behind if you had pulled wisdom teeth earlier in life. Most dentists just yank the tooth and dont remove that ligament which attaches the tooth to your blood stream...so they are often left to rot at the bottom of the healed over cavity...providing a lovely and continuing cesspool for inflammation. Cancer is inflammation...thats why curcumin (turmeric) works so well...along with other anti inflammation approaches.

I have felt quite a bit of hubris over attaching the 'proud of no chemo' statement...but everything about the cancer industry is so bullish on expensive treatments with limited effectiveness.

If we were in germany or switzerland....our chemo would be custom designed based on both our personal DNA as well as the cancer cell DNA....and then administered while you were in a hyperthermic chamber...since that superheat would cause the cancer cells to agitate and thus the chemo agent would go more directly to those cells and not over your whole body. This specialized approach is just now coming to the US, twenty years later.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Avastin, in my research IS CONSIDERED chemotherapy. There are many TYPES of chemotherapy. Avastin is a newer targeted therapy, a monoclonal antibody.

I'm not trying to be argumentative but we need to be accurate here.

madcoast
Posts: 9
Joined: Apr 2011

yes...technically avastin is 'chemotherapy'...but as someone else pointed out, it does not kill healthy cells as traditional chemotherapies do so well. And as until quite recently, it was not used except as a last resort...when all the other chemotherapies had ceased to 'work'.
One of the benefits that my onc at the Medical school said about me taking it first...was that he gets to write a paper about 'side effects' that are not exacerbated by a body already ravaged by traditional chemo.

madcoast
Posts: 9
Joined: Apr 2011

yes...technically avastin is 'chemotherapy'...but as someone else pointed out, it does not kill healthy cells as traditional chemotherapies do so well. And as until quite recently, it was not used except as a last resort...when all the other chemotherapies had ceased to 'work'.
One of the benefits that my onc at the Medical school said about me taking it first...was that he gets to write a paper about 'side effects' that are not exacerbated by a body already ravaged by traditional chemo.

madcoast
Posts: 9
Joined: Apr 2011

yes...technically avastin is 'chemotherapy'...but as someone else pointed out, it does not kill healthy cells as traditional chemotherapies do so well. And as until quite recently, it was not used except as a last resort...when all the other chemotherapies had ceased to 'work'.
One of the benefits that my onc at the Medical school said about me taking it first...was that he gets to write a paper about 'side effects' that are not exacerbated by a body already ravaged by traditional chemo.

madcoast
Posts: 9
Joined: Apr 2011

your statement re avastin is true: it does not damage healthy cells....
when the folks at Mass General suggested avastin< i jumped at that option

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: 1385
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

jazzy1's picture
jazzy1
Posts: 1385
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: 397
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: 397
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: 1385
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: 1095
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)

marti968's picture
marti968
Posts: 37
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: 37
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: 617
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: 37
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: 617
Joined: Apr 2011

dup

txtrisha55's picture
txtrisha55
Posts: 617
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: 617
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

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