Are there any other MMMT survivors out there?

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Comments

  • jazzy1
    jazzy1 Member Posts: 1,379
    Sasha413 said:

    Best treatment
    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.

    Sasha
    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
  • RoseyR
    RoseyR Member Posts: 471 Member
    Sasha413 said:

    Best treatment
    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.

    Treatment Centers

    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
    RoseyR Member Posts: 471 Member
    Sasha413 said:

    Best treatment
    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.

    Treatment Centers

    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
    RoseyR Member Posts: 471 Member
    Sasha413 said:

    Best treatment
    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.

    Treatment Centers

    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
  • carefreeinaz
    carefreeinaz Member Posts: 1
    RoseyR said:

    Foods that you LIMIT?


    Diane,

    Scrolling back through these posts, saw this message again. You say you "havn't limited what I eat other than those I mentioned before."

    Can you let us know what foods you've limited? (I can't find the answer in prior posts and your long remission from this cancer i'm sure inspires many. So we'd love to know what foods you've limited. I assume you can't eat raw fruits and vegetables now?

    Thanks,
    Rosey

    Diet/Supplements
    Sincere thanks to you & all who contribute to this board.

    My mother-in-law (77) was just diagnosed with MMMT 3a. She underwent a complete hysterectomy approx. 6 weeks ago. They found a large tumor in the uterus & cancer in one ovary, lymph nodes clean. Unknown at this time if the ovarian cancer was a spread or second primary. (I do not understand how they can determine stage without determining this first?)

    Any case, chemotherapy has been recommended. They have given her a choice of a series of Carboplatin or series of Carboplatin plus Paclitaxel. I believe she is leaning towards Carboplatin only. She will start next week. She is scared to death (and so are we).

    How can we help her thru chemo, help retain her strength, by way of diet, supplements, etc.? Any suggestions/information appreciated. We are all in a bit of a tizzy right now.

    This board brought us hope. Bless you all.

    Jackie
  • RoseyR
    RoseyR Member Posts: 471 Member

    Diet/Supplements
    Sincere thanks to you & all who contribute to this board.

    My mother-in-law (77) was just diagnosed with MMMT 3a. She underwent a complete hysterectomy approx. 6 weeks ago. They found a large tumor in the uterus & cancer in one ovary, lymph nodes clean. Unknown at this time if the ovarian cancer was a spread or second primary. (I do not understand how they can determine stage without determining this first?)

    Any case, chemotherapy has been recommended. They have given her a choice of a series of Carboplatin or series of Carboplatin plus Paclitaxel. I believe she is leaning towards Carboplatin only. She will start next week. She is scared to death (and so are we).

    How can we help her thru chemo, help retain her strength, by way of diet, supplements, etc.? Any suggestions/information appreciated. We are all in a bit of a tizzy right now.

    This board brought us hope. Bless you all.

    Jackie

    SEND ME YOUR EMAIL AND I WILL ADVISE YOU

    Jackie,

    Am a survivor of MMMT so far (stage iB, diagnosed two years ago). Would love to send you some advice on how to get through chemo with minimal side effects. If you send me your email address via CSN email (upper left of this screen), I will respond.

    Best,
    Rosey
  • RoseyR
    RoseyR Member Posts: 471 Member
    madcoast said:

    Living with and 'surviving' MMMT
    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

    WHO IS YOUR ENVIRONMENTAL DOCTOR?

    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
    RoseyR Member Posts: 471 Member
    madcoast said:

    Living with and 'surviving' MMMT
    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

    WHO IS YOUR ENVIRONMENTAL DOCTOR?

    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
    RoseyR Member Posts: 471 Member
    madcoast said:

    Living with and 'surviving' MMMT
    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

    WHO IS YOUR ENVIRONMENTAL DOCTOR?

    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
  • Clouth
    Clouth Member Posts: 10
    RoseyR said:

    Treatment Centers

    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

    Supplement protocol
    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
    Clouth Member Posts: 10
    RoseyR said:

    Treatment Centers

    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

    Supplement protocol
    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
    JMoses Member Posts: 7
    Clouth said:

    Supplement protocol
    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

    support
    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
    Clouth Member Posts: 10
    JMoses said:

    support
    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

    Julia
    I added you... Can't figure out how to email though. My email is [email protected]
  • Fayard
    Fayard Member Posts: 438 Member
    Clouth said:

    Supplement protocol
    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

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

    Best regards
  • Clouth
    Clouth Member Posts: 10
    Fayard said:

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

    Best regards

    Yes on 7/23. It is stage
    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
    Fayard Member Posts: 438 Member
    Clouth said:

    Yes on 7/23. It is stage
    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. :)

    Keep us posted, please.

    Keep us posted, please.
  • Clouth
    Clouth Member Posts: 10
    Fayard said:

    Keep us posted, please.

    Keep us posted, please.

    Ok. :)

    Ok. :)
  • Fayard
    Fayard Member Posts: 438 Member
    Hilajoan said:

    No chemo, no radiation? for Carcinosarcoma/MMMT
    I had full hysterectomy in November (2011) and have had no radiation or Chemo - from what I've read I might just as well not! I feel fit as a fiddle - even though I had breast cancer and a mastectomy in March last year (also 2011). The two cancers are unrelated - fortunately. I am in London, England. Hope our doctors and oncs know as much as those in the USA - they should do - they can all read and write! No-one seems to be able to agree on the likelihood of recurrence of the Carcinosarcoma/MMMT. So why should I put myself through the trauma of Chemo and radiation, with probable lasting ill effects when there may be no need, or possibly no effect on the likelihood of prolonging my life. Any views? Joan

    Hi Joan,
    I was wondering

    Hi Joan,

    I was wondering how you were doing since surgery.
  • RoseyR
    RoseyR Member Posts: 471 Member
    ghee56 said:

    mmmt survivors
    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.

    HOPE YOU'RE STILL DOING WELL

    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
    RoseyR Member Posts: 471 Member
    ghee56 said:

    mmmt survivors
    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.

    HOPE YOU'RE STILL DOING WELL

    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