Are there any other MMMT survivors out there?

Cynthia7

praying4u said:

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

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

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

Let me know how doctors decide to treat your grandmother.

nempark

Cynthia7 said:

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

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

Let me know how doctors decide to treat your grandmother.

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

monik_lisett

nempark said:

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

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

Cynthia7

nempark said:

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

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

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

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

nempark

Cynthia7 said:

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

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

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

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

Angelasmom2

nomadic_spirit said:

My sister was just diagnosed with MMMT...
Hi Carrie,

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

Thank you.

Deborah

MMMT
What is MMMT?

Angelasmom2

age 38
My daughter had cancer surgery July 8th on her 38th birthday. The lab report on the tissue after the surgery was undifferentiated/endometrioid. Is that anything like what you are talking about? The cancer was 3c.

jazzy1

Angelasmom2 said:

age 38
My daughter had cancer surgery July 8th on her 38th birthday. The lab report on the tissue after the surgery was undifferentiated/endometrioid. Is that anything like what you are talking about? The cancer was 3c.

MMMT
Don't think that is same as what your daughter shows on her pathology.

MMMT -- malignant mixed mullerian tumor. This is what mine shows with carcinosarcoma in parenthesis. My doc told me yes it's aggressive, but a lot of other cancers are too and people are dong quite well. Honestly, I don't think about it as do what I can with my eating, exercise and vitamins. Don't have time to worry as enjoying life, but great to read about many others who are long time survivors....go girls!!!

Jan

nempark

Angelasmom2 said:

MMMT
What is MMMT?

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

Cynthia7

nempark said:

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

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

CMadison

monik_lisett said:

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

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

CMadison

AndyCN

my mom was diagnosed MMMT 1B
my mom was diagnosed MMMT 1B Feb this year. Reoccurrance was discovered in June and now the tumor has grown very big. She did one round of Ifosfamide and Taxol 2 weeks ago but it's not working out. Wondering if anyone else is in similar situation and knows if any other drug might work?

Was searching online and looks like Avastin may help treat MMMT... Any info is appreciated..

nempark

AndyCN said:

my mom was diagnosed MMMT 1B
my mom was diagnosed MMMT 1B Feb this year. Reoccurrance was discovered in June and now the tumor has grown very big. She did one round of Ifosfamide and Taxol 2 weeks ago but it's not working out. Wondering if anyone else is in similar situation and knows if any other drug might work?

Was searching online and looks like Avastin may help treat MMMT... Any info is appreciated..

Andy
Hi:Andy I was diagnosed in October 2009 with MMMT Stage 1a. I had total hyst and six sessions of carb/taxol. In remission. I have been using a lot of green tea, ginger, lemons, tumeric and black pepper and also lots of berry juices.I am so sorry that mom had a reocurrence. I am sure the Docs will recommend something that will work for her. May God bless you and mom and help you guys to make wise decisions. Please keep us informed.

dtrmnd2live

nempark said:

Andy
Hi:Andy I was diagnosed in October 2009 with MMMT Stage 1a. I had total hyst and six sessions of carb/taxol. In remission. I have been using a lot of green tea, ginger, lemons, tumeric and black pepper and also lots of berry juices.I am so sorry that mom had a reocurrence. I am sure the Docs will recommend something that will work for her. May God bless you and mom and help you guys to make wise decisions. Please keep us informed.

newly diagnosed MMMT
Had a Radical hyst, nodes removed and washing on July 23, my 60th birthday. Path results were Stage 1a MMMT no node involvement, negative washings. My surgical oncologist and Radiation oncologist do not agree on treatment. Going for a second opinion to Sloan in NYC next week. I was told that Chemo did nothing for this cancer, but after visiting this site I am thinking otherwise. Had a bad day yesterday after going to the internet and looking up my cancer. My daughter found this site, and I have been encouraged by some of the stories. Would love to hear from you and others. D

nempark

dtrmnd2live said:

newly diagnosed MMMT
Had a Radical hyst, nodes removed and washing on July 23, my 60th birthday. Path results were Stage 1a MMMT no node involvement, negative washings. My surgical oncologist and Radiation oncologist do not agree on treatment. Going for a second opinion to Sloan in NYC next week. I was told that Chemo did nothing for this cancer, but after visiting this site I am thinking otherwise. Had a bad day yesterday after going to the internet and looking up my cancer. My daughter found this site, and I have been encouraged by some of the stories. Would love to hear from you and others. D

dtrmnd
I just wrote you my entire journey but lost it. So I am too tired to write it over again. Real quick, DO NOT GO ON THE INTERNET!!!! I will write you soon. If you would like, because I know how devastated you are you can call me at 201-488-3297 I was there exactly where you are right now. I know how you and your family are feeling. Be well.

sandy_b

dtrmnd2live said:

newly diagnosed MMMT
Had a Radical hyst, nodes removed and washing on July 23, my 60th birthday. Path results were Stage 1a MMMT no node involvement, negative washings. My surgical oncologist and Radiation oncologist do not agree on treatment. Going for a second opinion to Sloan in NYC next week. I was told that Chemo did nothing for this cancer, but after visiting this site I am thinking otherwise. Had a bad day yesterday after going to the internet and looking up my cancer. My daughter found this site, and I have been encouraged by some of the stories. Would love to hear from you and others. D

Hang in There
Aloha dtrmnd2live! I was diagnosed with 3b MMMT on St. Patrick's Day, 2010. Complete hysterectomy the day after that, and Chemo started on 26 Apr 2010 - for 6 treatments (three weeks apart) which was completed on 23 Aug 2010. I am 51 yrs old. This is a wonderful site, as it makes me feel less alone.

When my hysterectomy was done, they said it didn't spread to my lymphnodes, but there was something near my colon. My Gyn/Oncologist said this type of cancer used to be treated with strictly radiation, then they went for radiation & chemotherapy, and found that chemo worked better than radiation. For the most part, my Chemo treatments were manageable, the fatigue, nausea and loss of appetite became my worst challenges. Treatment was deferred twice because of low blood counts.

I went for my follow-up on 10 Sept 2010 - blood counts are still low, CT scan will follow sometime this month, then my oncologist tells me he is referring me to a Radiology Oncologist for a 'Consultation'. Silly me, thought I could get away with only chemo. I am told that the worst is over (the chemo), but we'll see. My Oncologist said that getting the radiation will not extend my life expectancy, that there will still be a five year window so I am wondering why should I get the radiation.

At any rate, please get your second opinion and do what is best for you. You mention your daughter - I believe since she found this site and has shared it with you, she will be great support for you.

Above all else, HANG IN THERE...they say this is a rare cancer, but there are so many of us out here. I tell myself that since I have something that is so 'rare', I should be special enough to beat this.

caregiveria

sandy_b said:

Hang in There
Aloha dtrmnd2live! I was diagnosed with 3b MMMT on St. Patrick's Day, 2010. Complete hysterectomy the day after that, and Chemo started on 26 Apr 2010 - for 6 treatments (three weeks apart) which was completed on 23 Aug 2010. I am 51 yrs old. This is a wonderful site, as it makes me feel less alone.

When my hysterectomy was done, they said it didn't spread to my lymphnodes, but there was something near my colon. My Gyn/Oncologist said this type of cancer used to be treated with strictly radiation, then they went for radiation & chemotherapy, and found that chemo worked better than radiation. For the most part, my Chemo treatments were manageable, the fatigue, nausea and loss of appetite became my worst challenges. Treatment was deferred twice because of low blood counts.

I went for my follow-up on 10 Sept 2010 - blood counts are still low, CT scan will follow sometime this month, then my oncologist tells me he is referring me to a Radiology Oncologist for a 'Consultation'. Silly me, thought I could get away with only chemo. I am told that the worst is over (the chemo), but we'll see. My Oncologist said that getting the radiation will not extend my life expectancy, that there will still be a five year window so I am wondering why should I get the radiation.

At any rate, please get your second opinion and do what is best for you. You mention your daughter - I believe since she found this site and has shared it with you, she will be great support for you.

Above all else, HANG IN THERE...they say this is a rare cancer, but there are so many of us out here. I tell myself that since I have something that is so 'rare', I should be special enough to beat this.

Always looking for new Information on Survial
My wife has been figthing this for 3 years, she first had stage 3c uterine cancer and had a total hysto. Spelling will not be good so please bare with me. The cancer was 50% thru here urterus and the washing was full of cancer and a lymphnode or two were bad. Then after chemo and radation. Then just prior to here 3 year mark after several months of extreme pain she had a 6-8 cm (grapefruit size) tumor up by her kidney and IVA (arota vein) that was removed with only some sand grane sized pieces on the arota as the DR said it could not be removed. She had 4 rounds of Iflex/something else in the hospital for 4-5 days at a time. She is now getting ready to do 25-28 rounds of radation. They said this time the tumor was mmmt and serious but very treatable. Most of what I read does not sound good but she is a fighter.

kkstef

caregiveria said:

Always looking for new Information on Survial
My wife has been figthing this for 3 years, she first had stage 3c uterine cancer and had a total hysto. Spelling will not be good so please bare with me. The cancer was 50% thru here urterus and the washing was full of cancer and a lymphnode or two were bad. Then after chemo and radation. Then just prior to here 3 year mark after several months of extreme pain she had a 6-8 cm (grapefruit size) tumor up by her kidney and IVA (arota vein) that was removed with only some sand grane sized pieces on the arota as the DR said it could not be removed. She had 4 rounds of Iflex/something else in the hospital for 4-5 days at a time. She is now getting ready to do 25-28 rounds of radation. They said this time the tumor was mmmt and serious but very treatable. Most of what I read does not sound good but she is a fighter.

"Caregiveria"
I am so sorry to hear about your wife, but I am glad that you found this site. Wonderful women here who are so supportive and so willing to share their experiences and ideas!

It sounds like your wife has been through a lot and am praying that her radiation is just what she needs to knock off those cancer cells! The radiation is not so bad....I had 28 rounds and did find that as the weeks wore on my fatigue was more intense. Also, some GI disturbance but let the radiologist or the nurse know if there are any problems and they can order something to make this better.

Please keep us posted on how she is doing....and am glad to hear she is a fighter. That will go a long way on her road to recovery!

Karen

kriscan

dtrmnd2live said:

newly diagnosed MMMT
Had a Radical hyst, nodes removed and washing on July 23, my 60th birthday. Path results were Stage 1a MMMT no node involvement, negative washings. My surgical oncologist and Radiation oncologist do not agree on treatment. Going for a second opinion to Sloan in NYC next week. I was told that Chemo did nothing for this cancer, but after visiting this site I am thinking otherwise. Had a bad day yesterday after going to the internet and looking up my cancer. My daughter found this site, and I have been encouraged by some of the stories. Would love to hear from you and others. D

MMMT treatment
I have also been recently diagnosed with MMMT. I am 46 and had my hysterectomy/oophorectemy on 7/8/10. Post surgery,I was diagnosed with Stage II carcinosarcoma, my pelvic lymph nodes that were checked all came back negative but my pelvic washings were positive for some atypical cells. My gynocological/oncologist surgeon, my radiation oncologist, & my medical oncologist consulted each other and their associates at Unniversity of Penn Oncology and their recommended treatment for me has been 4 rounds of Chemo (ifosfamide & taxol) to be followed by 5 weeks of external, pelvic radiation and ending with 3 internal radiation treatments.

I too went to the internet for information and was not happy with what I found there. I confronted my doctors with what I found and they stated much of the internet info is old and has been limited by the rarity of this type of cancer. My doctors have been encouraging and have insisted that the treatment plan they have designed for me is to prevent recurrence and to cure me. I have just completed my 3rd round of chemo and I have been very fortunate that I have experiencecd minimal side effects and have been able to continue a, more or less, normal routine of family life and work between my treatments.

I hope some of this information is helpful. Like you, I am just starting this battle with cancer and I too, am looking for all the allies and ammunition I can get to win. Kris

nempark

kriscan said:

MMMT treatment
I have also been recently diagnosed with MMMT. I am 46 and had my hysterectomy/oophorectemy on 7/8/10. Post surgery,I was diagnosed with Stage II carcinosarcoma, my pelvic lymph nodes that were checked all came back negative but my pelvic washings were positive for some atypical cells. My gynocological/oncologist surgeon, my radiation oncologist, & my medical oncologist consulted each other and their associates at Unniversity of Penn Oncology and their recommended treatment for me has been 4 rounds of Chemo (ifosfamide & taxol) to be followed by 5 weeks of external, pelvic radiation and ending with 3 internal radiation treatments.

I too went to the internet for information and was not happy with what I found there. I confronted my doctors with what I found and they stated much of the internet info is old and has been limited by the rarity of this type of cancer. My doctors have been encouraging and have insisted that the treatment plan they have designed for me is to prevent recurrence and to cure me. I have just completed my 3rd round of chemo and I have been very fortunate that I have experiencecd minimal side effects and have been able to continue a, more or less, normal routine of family life and work between my treatments.

I hope some of this information is helpful. Like you, I am just starting this battle with cancer and I too, am looking for all the allies and ammunition I can get to win. Kris

Kris and everyone on this thread
Hi guys: Please write and let us know how you are doing in treatment. Be well everyone. J