Diagnosed with MMMT - uterine carcinosarcoma... NEED HELP WITH TREATMENT OPTIONS!

Linda1234

My mom was recently diagnosed with a malignant mixed mellurian tumor (MMMT; carcinosarcoma) in the uterine wall. It was found when the tumor was removed after a laparoscopic hysterectomy. It was determined to be a low stage (because it was confined) but a high grade (because of the size). She underwent radiation every day for 5 weeks (with cisplatin once per week). She is scheduled to start chemotherapy this Tuesday. My question is regarding the chemotherapy drugs. I have read so many different opinions about which drugs are most effective to treat this particular type of rare and aggressive cancer, and the doctor doesn't seem to have a definite opinion about which to choose.

 

... Anyone who has successfully beat this cancer... can you PLEASE share with me which drugs your doctor used that were most effective and most well tolerated? At first my mom's doctor suggested carboplatin/taxol; now he's suggesting gemzar/taxotere, and I have read about others as well. I appreciate ANY advice you can offer me as well as effective alternative treatments with which you are familiar.

 

I have been doing research, and I am very scared and confused. Please reply as soon as you possibly can.

 

THANK YOU!!

jazzy1

Linda

Welcome Linda, and sorry to read of your mom's diagnosis.  A few questions -- did they remove and sample some lymph nodes?  This is one of the main areas our cancer does go.  Also, did they tell you what stage, as the grade should be 3 as it's an aggressive type vs. the garden variety which is found in the general population?

My story -- I was diagnosed with cancer Jan, 09, had total abdominal hysterectomy, removed 24 lymph nodes as well.  Cancer found in 1 pelvic lymph node which put me at a stage 3C MMMT.  Doc told me with this aggressive type cancer we needed to do 6 rounds of carboplatin/taxol, sandwiched in between 33 rounds of pelvic external radiation.  They used to do the radiatiton first, but found they missed many of the sparcely moving cancer cell which needed to get hit with chemo.  Chemo comes in and zaps all the flying cancer cells not seen during surgery. observation and pathology.  Radiation will zoom in on certain areas, as in my case where the positive pelvic lymp node was found.  By the grace of God, I've been NED (no evidence of disease) for 3.5 years -- no recurrences!!!

Is your mom seeing an OB oncologist?  If not, this is what we all recommend as they  have better chance of understanding this aggressive type cancer, plus how our bodies work, etc.  I'm hesitant to feel comfortable with what you mentioned from your doc on chemo drugs...At first my mom's doctor suggested carboplatin/taxol; now he's suggesting gemzar/taxotere.  Am I reading into this that her doc isn't sure?  I'm playing the devil's advocate as this MMMT is very, very aggressive and must be treated as well....hit really hard with chemo and radiation if recommended.

I can only suggest what I was taking and show how it helped me with this aggressive type cancer.  Now I know research changes over the years and our bodies are all different, so possibly another protocol would be better for your mom.  That's where the qualified OB oncologist who has some experience in our cancer comes into play...let them guide you.  One option, if you do not feel comfortable with this doc, you can always get a 2nd opinion and most insurance co's will cover.  

Alternative treatments -- I'd suggest purchasing 2 great books which are almost like a Bible to me.  As well try and hit the search button on top of our uterine area for MMMT, and see some of the past discussions.  Possibly find additional inforamtion which will be of assistance to you and answers more questions.  There are others on this site whom do post frequently and hoping they chime in with more information from their past experiences.

.  Anti Cancer A new way of life, David Servan-Schreiber

.  Foods to Fight Cancer, Richard Beliveau

This journey is very scary, but once you do some research and ask lots of questions and put one foot in front of the other, it's very doable.  God never gave us a book on how our lives would  work out, therefore, we must learn to roll with the punches.

Hope this helps...and know we're here for you, so keep asking questions!!!!  We've all been in your mom's shoes and know many of us are living good lives even after hearing the words "you have cancer"

Hugs,

Jan

 

  

NorahS

jazzy1 said:

Linda

Welcome Linda, and sorry to read of your mom's diagnosis.  A few questions -- did they remove and sample some lymph nodes?  This is one of the main areas our cancer does go.  Also, did they tell you what stage, as the grade should be 3 as it's an aggressive type vs. the garden variety which is found in the general population?

My story -- I was diagnosed with cancer Jan, 09, had total abdominal hysterectomy, removed 24 lymph nodes as well.  Cancer found in 1 pelvic lymph node which put me at a stage 3C MMMT.  Doc told me with this aggressive type cancer we needed to do 6 rounds of carboplatin/taxol, sandwiched in between 33 rounds of pelvic external radiation.  They used to do the radiatiton first, but found they missed many of the sparcely moving cancer cell which needed to get hit with chemo.  Chemo comes in and zaps all the flying cancer cells not seen during surgery. observation and pathology.  Radiation will zoom in on certain areas, as in my case where the positive pelvic lymp node was found.  By the grace of God, I've been NED (no evidence of disease) for 3.5 years -- no recurrences!!!

Is your mom seeing an OB oncologist?  If not, this is what we all recommend as they  have better chance of understanding this aggressive type cancer, plus how our bodies work, etc.  I'm hesitant to feel comfortable with what you mentioned from your doc on chemo drugs...At first my mom's doctor suggested carboplatin/taxol; now he's suggesting gemzar/taxotere.  Am I reading into this that her doc isn't sure?  I'm playing the devil's advocate as this MMMT is very, very aggressive and must be treated as well....hit really hard with chemo and radiation if recommended.

I can only suggest what I was taking and show how it helped me with this aggressive type cancer.  Now I know research changes over the years and our bodies are all different, so possibly another protocol would be better for your mom.  That's where the qualified OB oncologist who has some experience in our cancer comes into play...let them guide you.  One option, if you do not feel comfortable with this doc, you can always get a 2nd opinion and most insurance co's will cover.  

Alternative treatments -- I'd suggest purchasing 2 great books which are almost like a Bible to me.  As well try and hit the search button on top of our uterine area for MMMT, and see some of the past discussions.  Possibly find additional inforamtion which will be of assistance to you and answers more questions.  There are others on this site whom do post frequently and hoping they chime in with more information from their past experiences.

.  Anti Cancer A new way of life, David Servan-Schreiber

.  Foods to Fight Cancer, Richard Beliveau

This journey is very scary, but once you do some research and ask lots of questions and put one foot in front of the other, it's very doable.  God never gave us a book on how our lives would  work out, therefore, we must learn to roll with the punches.

Hope this helps...and know we're here for you, so keep asking questions!!!!  We've all been in your mom's shoes and know many of us are living good lives even after hearing the words "you have cancer"

Hugs,

Jan

 

  

Yo Jan...

I like what you had to say to Linda. Especially the comments re: carbo/taxol vs. gemzar/taxotere - I would want an explanation for that as well (as most of "us" start out with the carbo/taxol chemo protocol) 

However Jan, I am scratching my head a little over the "OB oncologist". Think you mean GYN oncologist? 

 

sincerely, NorahS  

jazzy1

NorahS said:

Yo Jan...

I like what you had to say to Linda. Especially the comments re: carbo/taxol vs. gemzar/taxotere - I would want an explanation for that as well (as most of "us" start out with the carbo/taxol chemo protocol) 

However Jan, I am scratching my head a little over the "OB oncologist". Think you mean GYN oncologist? 

 

sincerely, NorahS  

Norah

Yes it's same as GYN...as I get that all the time from others ,but I've always called them OB...don't ask me why??

 

Thanks

Jan

Susanna23

MMMT comment

Dear Linda

I was diagnosed with Stage 1a MMMT in December 2010, after having surgery the previous month (for what was diagnosed as Grade 3 after postmenopausal bleeding and a biops, ultrasound, CT, MRI). I had six rounds of carboplatin and taxol in 2011, but I have not had radiotherapy. I didn't have any side effects from the chemo, apart from hari loss, and have been fine ever since (check up in two weeks). I totally agree with Jan on those two books - I follow those dietary ideas very closely. I also take vitamin D and see an integrative medicine doctor for mistletoe therapy and, through her, I have regular mindfulness meditation sessions. Also, during chemo I had Reiki healing and some follow up sessions. 

Btw, during my surgery I had 26 lymph nodes removed and they were all negative, as were washings. Also the tumour was about 3 cm diameter and minimal invasion into the uterine wall, therefore stage at 1A.There has been some discussion on this board on Ca125 - I have had it measured a few times but not in a systematic way and apparently it's usually around 15 which is on the middle range of normal. I had a baseline CT scan in April 2011 (after completion of chemotherapy) which will only be repeated if I have symptoms or concerns. I am supposed to have a yearly chest X-ray because my oncologist says the MMMT is more likely to come back to the lungs than elsewhere and I'm due a checkup in a couple of weeks and will ask for it. 

I wish you and your mother all the best and please get back to me if you have more questions. By the way, I am 62 and I live in London. I was treated at UCLH but am now under the care of my local hospital. 

Susan 

Hannah1

Hi Linda sorry to hear about

Hi Linda sorry to hear about your mom dx. I was diagnosed with stage 3c carcinosarcoma

in 2008 but I went to get a secondopinion and was diagnosed with stage 3c carcinocarsinoma. 

Had 7rounds of carboplatin/taxol and internal and external radiation. Everybody reacts differently

with regards to medication so consult with your dr. and if your not comfortable with the medication

to get a second opinion. Insurance do covers it.Take care good luck. 

jazzy1

Hannah1 said:

Hi Linda sorry to hear about

Hi Linda sorry to hear about your mom dx. I was diagnosed with stage 3c carcinosarcoma

in 2008 but I went to get a secondopinion and was diagnosed with stage 3c carcinocarsinoma. 

Had 7rounds of carboplatin/taxol and internal and external radiation. Everybody reacts differently

with regards to medication so consult with your dr. and if your not comfortable with the medication

to get a second opinion. Insurance do covers it.Take care good luck. 

Hannah

Great to read we both have same stage 3C, as mine found in 1 pelvic lymph node.  I was diagnosed '09 and NED since.  Have you had any recurrences and changed anything with your diet, etc.???  

Best to you!

Jan 

 

 

 

Cindyr941

Susanna23 said:

MMMT comment

Dear Linda

I was diagnosed with Stage 1a MMMT in December 2010, after having surgery the previous month (for what was diagnosed as Grade 3 after postmenopausal bleeding and a biops, ultrasound, CT, MRI). I had six rounds of carboplatin and taxol in 2011, but I have not had radiotherapy. I didn't have any side effects from the chemo, apart from hari loss, and have been fine ever since (check up in two weeks). I totally agree with Jan on those two books - I follow those dietary ideas very closely. I also take vitamin D and see an integrative medicine doctor for mistletoe therapy and, through her, I have regular mindfulness meditation sessions. Also, during chemo I had Reiki healing and some follow up sessions. 

Btw, during my surgery I had 26 lymph nodes removed and they were all negative, as were washings. Also the tumour was about 3 cm diameter and minimal invasion into the uterine wall, therefore stage at 1A.There has been some discussion on this board on Ca125 - I have had it measured a few times but not in a systematic way and apparently it's usually around 15 which is on the middle range of normal. I had a baseline CT scan in April 2011 (after completion of chemotherapy) which will only be repeated if I have symptoms or concerns. I am supposed to have a yearly chest X-ray because my oncologist says the MMMT is more likely to come back to the lungs than elsewhere and I'm due a checkup in a couple of weeks and will ask for it. 

I wish you and your mother all the best and please get back to me if you have more questions. By the way, I am 62 and I live in London. I was treated at UCLH but am now under the care of my local hospital. 

Susan 

Stage 1B MMMT

Hello Susan, I'm new here.  I am replying to you because your case is very similar to mine and we're about the same age. As far as staging, mine is 1B due to > 50% penetration into the uterine wall.  I had a total hysterectomy, ovaries, cervix and omentum removed along with 6 lymph nodes and the "wash" - all of which were negative for cancer which was all contained in the uterus.  My oncology gyn doctor referred me to a radiology oncologist who just today advised me not to bother with radiation therapy since there is no tumor remaining. However she then referred me to another oncology doctor to evaluate whether I should try chemo as a preventative measure against recurrance.   So we shall see.  Just wondering how you are doing now, since the date of your post was nearly 4 years ago.  I hope you are well!  - Cindy

txtrisha55

Cindyr941 said:

Stage 1B MMMT

Hello Susan, I'm new here.  I am replying to you because your case is very similar to mine and we're about the same age. As far as staging, mine is 1B due to > 50% penetration into the uterine wall.  I had a total hysterectomy, ovaries, cervix and omentum removed along with 6 lymph nodes and the "wash" - all of which were negative for cancer which was all contained in the uterus.  My oncology gyn doctor referred me to a radiology oncologist who just today advised me not to bother with radiation therapy since there is no tumor remaining. However she then referred me to another oncology doctor to evaluate whether I should try chemo as a preventative measure against recurrance.   So we shall see.  Just wondering how you are doing now, since the date of your post was nearly 4 years ago.  I hope you are well!  - Cindy

Wecome Sorry you had to find us.

Glad you did. Lots of support and information can be found here.  Susan, per her profile, has not posted anything since 2014.  There are other ladies that have had similiar stage and type of your cancer.  I had stage 3c1 grade 3 carcinoma sarcoma uterine cancer (old name MMMT) found in 2011. I hade 6 rounds of carbo and taxal and have been no recurrence for 5 years now. I had no radiation.  My gyn onc dr said that the National Cancer Institute new policy was to do chemo and that radiation did not provided any extra benifit. So she said I only needed chemo and then if I had a recurrence I could look at radiation then because they would have a spot to point to.  If you are concerned, keep researching and get a second opinion.  It does not hurt and you are your own best advocate. This site has lots of information. Best of luck. Trish

Nellasing

Cindyr941 said:

Stage 1B MMMT

Hello Susan, I'm new here.  I am replying to you because your case is very similar to mine and we're about the same age. As far as staging, mine is 1B due to > 50% penetration into the uterine wall.  I had a total hysterectomy, ovaries, cervix and omentum removed along with 6 lymph nodes and the "wash" - all of which were negative for cancer which was all contained in the uterus.  My oncology gyn doctor referred me to a radiology oncologist who just today advised me not to bother with radiation therapy since there is no tumor remaining. However she then referred me to another oncology doctor to evaluate whether I should try chemo as a preventative measure against recurrance.   So we shall see.  Just wondering how you are doing now, since the date of your post was nearly 4 years ago.  I hope you are well!  - Cindy

Cindyr941 just wanted to say hi...

I read your info but since it was addressed to someone I didn't post anything but revisited it today when you got a response- just wanted to say welcome to you and let you know that you have found a really good place for information and support.  I could read all day and sometimes do.... lol. 

You might want to start a new thread with any questions you may have going forward.  These ladies are all so great and someone is generally along fairly quickly when a new thread is posted. 

Hope you are healing nicely from your surgery.  Look forward to walking along together.  There are great threads about chemo if that is the direction you head next.  (((HUGS)))

danni93

jazzy1 said:

Linda

Welcome Linda, and sorry to read of your mom's diagnosis.  A few questions -- did they remove and sample some lymph nodes?  This is one of the main areas our cancer does go.  Also, did they tell you what stage, as the grade should be 3 as it's an aggressive type vs. the garden variety which is found in the general population?

My story -- I was diagnosed with cancer Jan, 09, had total abdominal hysterectomy, removed 24 lymph nodes as well.  Cancer found in 1 pelvic lymph node which put me at a stage 3C MMMT.  Doc told me with this aggressive type cancer we needed to do 6 rounds of carboplatin/taxol, sandwiched in between 33 rounds of pelvic external radiation.  They used to do the radiatiton first, but found they missed many of the sparcely moving cancer cell which needed to get hit with chemo.  Chemo comes in and zaps all the flying cancer cells not seen during surgery. observation and pathology.  Radiation will zoom in on certain areas, as in my case where the positive pelvic lymp node was found.  By the grace of God, I've been NED (no evidence of disease) for 3.5 years -- no recurrences!!!

Is your mom seeing an OB oncologist?  If not, this is what we all recommend as they  have better chance of understanding this aggressive type cancer, plus how our bodies work, etc.  I'm hesitant to feel comfortable with what you mentioned from your doc on chemo drugs...At first my mom's doctor suggested carboplatin/taxol; now he's suggesting gemzar/taxotere.  Am I reading into this that her doc isn't sure?  I'm playing the devil's advocate as this MMMT is very, very aggressive and must be treated as well....hit really hard with chemo and radiation if recommended.

I can only suggest what I was taking and show how it helped me with this aggressive type cancer.  Now I know research changes over the years and our bodies are all different, so possibly another protocol would be better for your mom.  That's where the qualified OB oncologist who has some experience in our cancer comes into play...let them guide you.  One option, if you do not feel comfortable with this doc, you can always get a 2nd opinion and most insurance co's will cover.  

Alternative treatments -- I'd suggest purchasing 2 great books which are almost like a Bible to me.  As well try and hit the search button on top of our uterine area for MMMT, and see some of the past discussions.  Possibly find additional inforamtion which will be of assistance to you and answers more questions.  There are others on this site whom do post frequently and hoping they chime in with more information from their past experiences.

.  Anti Cancer A new way of life, David Servan-Schreiber

.  Foods to Fight Cancer, Richard Beliveau

This journey is very scary, but once you do some research and ask lots of questions and put one foot in front of the other, it's very doable.  God never gave us a book on how our lives would  work out, therefore, we must learn to roll with the punches.

Hope this helps...and know we're here for you, so keep asking questions!!!!  We've all been in your mom's shoes and know many of us are living good lives even after hearing the words "you have cancer"

Hugs,

Jan

 

  

Hi Jan,

Hi Jan,

you sound so positive, i would love to hear how you are going!

My 54 year old mother was just diagnosed with stage 3C MMMT uterus and they want to start chemo and radiation straight away and not do the hysterectomy yet.

Do you have any advice that I could pass on to my mum, were trying hard to maintain positive

thank you, 

Dannielle

danni93

stage 3c MMMT

Hi, my mother aged 54 was diagosed with stage 3C MMMT of the uterus last week and they are starting urgently on chemo and radiation without surgery, 

we have changed our diet to no sugar and low carbs (ketogenic)  does anyone have any other advice on what has helped them or some positive stories?

the specialist unfortunately wasnt able to assist us with any positive stories

i look forward to hearing from you!

Dannielle

NoTimeForCancer

danni93 said:

Hi Jan,

Hi Jan,

you sound so positive, i would love to hear how you are going!

My 54 year old mother was just diagnosed with stage 3C MMMT uterus and they want to start chemo and radiation straight away and not do the hysterectomy yet.

Do you have any advice that I could pass on to my mum, were trying hard to maintain positive

thank you, 

Dannielle

Dannielle, I am sorry to

Dannielle, I am sorry to report that we lost Jan a few years ago.  It was devastating for me as she was so open and caring when I first found this site.  She had one saying that is very true and something you will hear repeatedly, "You are a statistic of one".  

Kvdyson

danni93 said:

Hi Jan,

Hi Jan,

you sound so positive, i would love to hear how you are going!

My 54 year old mother was just diagnosed with stage 3C MMMT uterus and they want to start chemo and radiation straight away and not do the hysterectomy yet.

Do you have any advice that I could pass on to my mum, were trying hard to maintain positive

thank you, 

Dannielle

Dannielle, I am so very sorry

Dannielle, I am so very sorry to hear of your mother's diagnosis. She is very lucky to have you by her side. I was diagnosed with 1b uterine MMMT in Sept 2015. After surgery, chemo and external radiation, I'm happy to say that I've achieved NED or no evidence of disease.

There are others on this group who were also diagnosed with MMMT. You may want to start a new post so that everyone's responses are easier to follow. It can get a little confusing when adding onto an old post!

Please try to stay positive. MMMT is a tough diagnosis - no doubt - but treatment is doable. My best advice at this point is to be sure that your mom's medical team includes a gynecological-oncologist with experience treating MMMT specifically. Not every gyn-onc has that experience. Also, be sure she keeps copies of all of her medical reports from this point on in case she decides to get additional opinions.

Please give her our best wishes and let us know how we can help! Kim