New member of the mmmt club

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hi ladies

i am 65 and had a hysterectomy on 1/19/18 pathology shows st 2 carcinocarcinoma my cervix is involved. I’m with a gyneonc surgeon at the university hospital in Pittsburgh PA. She wants to start chemo in the hospital where I stay 3-4 days because it is so toxic and can cause bladder bleeding. I,m scared any thoughts for me?   sShe says it is a rare tumor and a rare stage.

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  • janaes
    janaes Member Posts: 799 Member
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    Hi i had mmmt uterine cancer

    Hi i had mmmt uterine cancer too. The cancer word is scary but you can do this. Take it a day at a time. Come. Here forvsupport. It really does help. When your frusrated or stick share it hear and youll get validated and you wont feel so alone. Ive been done with tteatment for just over a year and had MMMT stage 2 grade 3. There is hope.

    Janae

  • saltycandy13
    saltycandy13 Member Posts: 167 Member
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    A newbie!

    Hi!  I had my hysterectomy the same day as yours.  I am sorry to hear of this diagnosis.  I will be supportive for you all I can.  I wish you GREAT success with your treatment.  Hang in there.  You couldn't meet a better, more wonderful group of beautiful supportive ladies.  They are the best!

     

    xoxxo  Much love and light to you

    Karen

  • cmb
    cmb Member Posts: 1,001 Member
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    I have MMMT (uterine carcinosarcoma) Cancer Too

    I'm sorry to hear of your diagnosis, but you've come to a good place for information and support from others who have the same or other, equally serious forms of uterine cancer.

    I was diagnosed with MMMT (uterine carcinosarcoma) in November, 2016 and staged as IIIB Grade 3 following surgery in December.

    I was interested to read that your doctor was recommending treatment that required a hospital stay, as I also had four cycles of Ifosfamide/Mensa/Doxorubicin that required me to stay in the hospital for 3 days, every 21 days. These cycles followed my first four Paclitaxel/Carboplatin cycles that were given on an outpatient basis.

    In my case, the Mesna was given with the Ifosfamide to prevent any damage to the bladder.

    The good news is that I actually felt fine while I was in the hospital getting the treatments. I read, did some computer work and visited with family and friends that stopped by.

    But I must admit that I had very severe nausea and fatigue a few days after the first Ifosfamide/Mensa/Doxorubicin treatment (much more than I had during the Paclitaxel/Carboplatin cycles).

    To help prevent the same level of side effects after the remaining cycles, my oncologist added an additional anti-nausea drug on my last day of each hospital stay and also had me take some steroids for about 3 days after treatment. But I still found that I needed some additional fluids and antiemetics the week following the hospital stay.

    I don't want to scare you about the treatments, especially since you may not have the same side effects that I did. But I want to share that if you have side effects, there are steps that the oncologists can take to lessen their severity. Don't hesitate to call the doctor's office and tell them if you have difficulties. When they say call them if you need to, they really mean it!  I tried to tough it out the first time and suffered a lot more than I needed to.

    So far, the treatments seem to have been effective for me. The CT scan I had in July 2017 after completing the eight chemotherapy cycles did not show any evidence of disease. The scan I just had in December was also clear. 

    Research is still going on as to the best treatment protocol for MMMT cancer, although the four drugs I received have all been used in varying combinations for many years. Your doctor may recommend a different set of chemotherapy drugs or give them on a different schedule. But MMMT cancer is an aggressive cancer and doctors manage it accordingly.

    But we've all made it through the treatments, and while we may not be the exactly the same as we were before cancer, life is still enjoyable and meaningful.

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    edited January 2018 #5
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    I was 54 in April 2011, when I was told I had MMMT after a D&C procedure.  I went to a Gyn Onc Dr that did a complete abdominal hysterectomy which removed all female parts plus the Omentum.  I had a port installed before the first chemo treatment and then had six rounds of Carbo/Taxol, one every 21 days.  Yes the Taxol made me go bald, for me that was no big deal because I like short hair.  I went back to work in June so was off 2 months.  Worked through the chemo, took off those days I needed to when the pain was too much but that was only a few days every 21 days.  You will find that you are stronger than you think you are.  I did not have radiation.    I was stage 3C Grade 3 cancer.  Good Luck to you.  trish

     

  • Big Apple
    Big Apple Member Posts: 11
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    janaes said:

    Hi i had mmmt uterine cancer

    Hi i had mmmt uterine cancer too. The cancer word is scary but you can do this. Take it a day at a time. Come. Here forvsupport. It really does help. When your frusrated or stick share it hear and youll get validated and you wont feel so alone. Ive been done with tteatment for just over a year and had MMMT stage 2 grade 3. There is hope.

    Janae

    Thank you

    Hi janaes

    Thank you for your support and encouragement. I.m at the beginning of this journey and am so happy not to be alone.  I will be posting more as I gather more info.

  • Big Apple
    Big Apple Member Posts: 11
    edited January 2018 #7
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    A newbie!

    Hi!  I had my hysterectomy the same day as yours.  I am sorry to hear of this diagnosis.  I will be supportive for you all I can.  I wish you GREAT success with your treatment.  Hang in there.  You couldn't meet a better, more wonderful group of beautiful supportive ladies.  They are the best!

     

    xoxxo  Much love and light to you

    Karen

    Thank you

    Hi salty

    Thanks for your support and kind words of encouragement. 

  • Big Apple
    Big Apple Member Posts: 11
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    cmb said:

    I have MMMT (uterine carcinosarcoma) Cancer Too

    I'm sorry to hear of your diagnosis, but you've come to a good place for information and support from others who have the same or other, equally serious forms of uterine cancer.

    I was diagnosed with MMMT (uterine carcinosarcoma) in November, 2016 and staged as IIIB Grade 3 following surgery in December.

    I was interested to read that your doctor was recommending treatment that required a hospital stay, as I also had four cycles of Ifosfamide/Mensa/Doxorubicin that required me to stay in the hospital for 3 days, every 21 days. These cycles followed my first four Paclitaxel/Carboplatin cycles that were given on an outpatient basis.

    In my case, the Mesna was given with the Ifosfamide to prevent any damage to the bladder.

    The good news is that I actually felt fine while I was in the hospital getting the treatments. I read, did some computer work and visited with family and friends that stopped by.

    But I must admit that I had very severe nausea and fatigue a few days after the first Ifosfamide/Mensa/Doxorubicin treatment (much more than I had during the Paclitaxel/Carboplatin cycles).

    To help prevent the same level of side effects after the remaining cycles, my oncologist added an additional anti-nausea drug on my last day of each hospital stay and also had me take some steroids for about 3 days after treatment. But I still found that I needed some additional fluids and antiemetics the week following the hospital stay.

    I don't want to scare you about the treatments, especially since you may not have the same side effects that I did. But I want to share that if you have side effects, there are steps that the oncologists can take to lessen their severity. Don't hesitate to call the doctor's office and tell them if you have difficulties. When they say call them if you need to, they really mean it!  I tried to tough it out the first time and suffered a lot more than I needed to.

    So far, the treatments seem to have been effective for me. The CT scan I had in July 2017 after completing the eight chemotherapy cycles did not show any evidence of disease. The scan I just had in December was also clear. 

    Research is still going on as to the best treatment protocol for MMMT cancer, although the four drugs I received have all been used in varying combinations for many years. Your doctor may recommend a different set of chemotherapy drugs or give them on a different schedule. But MMMT cancer is an aggressive cancer and doctors manage it accordingly.

    But we've all made it through the treatments, and while we may not be the exactly the same as we were before cancer, life is still enjoyable and meaningful.

    Thank you

    Hi cmb

    Your response was so wonderful!  I cried tears of relief just knowing I am not alone.  Thank you my husband also read your post and feels better as well.  I plan to be posting more as things occur.  Right now I’m still doing love nox shots daily and getting more mobil after surgery 1 week ago today.  This board and the ladies on it are helping me to start believing there is hope,

  • Big Apple
    Big Apple Member Posts: 11
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    Thanks Trish

    You have given a new kid on the block some hope!  the ladies on this board are so strong and inspiring to me.  I am 1 week postoperative and getting stronger every day 

  • cmb
    cmb Member Posts: 1,001 Member
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    Big Apple said:

    Thanks Trish

    You have given a new kid on the block some hope!  the ladies on this board are so strong and inspiring to me.  I am 1 week postoperative and getting stronger every day 

    Txtrisha55 is a long-term

    Txtrisha55 is a long-term survivor of this rare cancer who is kind enough to continue to post on this site many years after her successful treatment. She gives all of the ladies with MMMT cancer hope for a good outcome. 

  • NYLMP68
    NYLMP68 Member Posts: 6
    edited February 2018 #11
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    My mother (74) has been

    My mother (74) has been through the surgery, chemo/radiation - it then went to lung and she had surgery for that. All scans were seemingly good. Now its back and we have to decide to do more chemo or nothing. I would like to hear from others that went through the 2nd chemo. I don't know the right decision to help her with and I don't want her to just throw in the towel. The Dr. wasn't hopeful. Thank you. She has MMMT carcinosarcoma.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,385 Member
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    NYLMP68, I think it is a good

    NYLMP68, I think it is a good idea to get some 'feelers' from the ladies here to see what they have done, and we have quite a few ladies here who are on second and third rounds of treatment who may chime in, so your mother can make her decision.  Your family is in my prayers.

  • cmb
    cmb Member Posts: 1,001 Member
    edited February 2018 #13
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    Genomic testing

    Although I have MMMT cancer, I have not had a recurrence since I completed front-line treatment last year. So I can't offer any personal experience on how your mother might choose to handle her recurrence.

    But when I had my original surgery, the pathology report indicated that I might have Lynch Syndrome. This was later confirmed through genetic testing.

    Last May the FDA approved the use of immunotherapy (Keytruda) for cancer patients with Lynch Syndrome who have already received front-line treatment but have solid tumors that have progressed following prior treatment and who have no satisfactory alternative treatment options. So if my cancer recurs in the future, Keytruda would provide me with a treatment option besides the typical chemotherapy or radiation.

    https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm560167.htm

    I think it's important to note that I didn't initially meet the criteria for Lynch Syndrome testing because my father was already in his 80s when he was diagnosed with colon cancer. And the only other cancer in my family was my mother's cervical cancer, which isn't considered to be hereditary. Therefore, I was fortunate that my treatment center asked that the testing be done on my tumor anyway, especially since I didn't even realize that I should ask for tumor testing.

    Other ladies on this board have had other types of genomic testing to determine if a particular type of chemotherapy would (or wouldn't be) effective.

    So before your mother makes a final decision about how to proceed, she may want to have some genomic testing, if she hasn't already had this done. Depending upon what the testing shows, she may have options other than traditional chemotherapy or the testing could show which chemotherapy is more likely to be successful.

  • NYLMP68
    NYLMP68 Member Posts: 6
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    cmb said:

    Genomic testing

    Although I have MMMT cancer, I have not had a recurrence since I completed front-line treatment last year. So I can't offer any personal experience on how your mother might choose to handle her recurrence.

    But when I had my original surgery, the pathology report indicated that I might have Lynch Syndrome. This was later confirmed through genetic testing.

    Last May the FDA approved the use of immunotherapy (Keytruda) for cancer patients with Lynch Syndrome who have already received front-line treatment but have solid tumors that have progressed following prior treatment and who have no satisfactory alternative treatment options. So if my cancer recurs in the future, Keytruda would provide me with a treatment option besides the typical chemotherapy or radiation.

    https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm560167.htm

    I think it's important to note that I didn't initially meet the criteria for Lynch Syndrome testing because my father was already in his 80s when he was diagnosed with colon cancer. And the only other cancer in my family was my mother's cervical cancer, which isn't considered to be hereditary. Therefore, I was fortunate that my treatment center asked that the testing be done on my tumor anyway, especially since I didn't even realize that I should ask for tumor testing.

    Other ladies on this board have had other types of genomic testing to determine if a particular type of chemotherapy would (or wouldn't be) effective.

    So before your mother makes a final decision about how to proceed, she may want to have some genomic testing, if she hasn't already had this done. Depending upon what the testing shows, she may have options other than traditional chemotherapy or the testing could show which chemotherapy is more likely to be successful.

    Thank you. I'm going to read

    Thank you. I'm going to read about that now.

  • NYLMP68
    NYLMP68 Member Posts: 6
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    How do I request genomic testing for mother?

    How do I request genomic testing for mother? She has MMMT and Friday they gave her 6 months - I refuse to believe this.

  • cmb
    cmb Member Posts: 1,001 Member
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    NYLMP68 said:

    How do I request genomic testing for mother?

    How do I request genomic testing for mother? She has MMMT and Friday they gave her 6 months - I refuse to believe this.

    Genomic testing

    Several ladies on the Board have used FoundationOne to test their tumors and see what treatments may be most effective. From what I've read here, it seems that some people first contacted Foundation One directly, while others' doctors took the lead in ordering the tests.

    See https://www.foundationmedicine.com/genomic-testing/order for an overview of the order process.

    Also, your mother's treatment center may have another testing company that they work with on a regular basis for this type of testing.

    Finally, do check whether this type of testing is covered by your mother's insurance. From what I've read here, not all insurers cover this cost.

  • NYLMP68
    NYLMP68 Member Posts: 6
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    cmb said:

    Genomic testing

    Several ladies on the Board have used FoundationOne to test their tumors and see what treatments may be most effective. From what I've read here, it seems that some people first contacted Foundation One directly, while others' doctors took the lead in ordering the tests.

    See https://www.foundationmedicine.com/genomic-testing/order for an overview of the order process.

    Also, your mother's treatment center may have another testing company that they work with on a regular basis for this type of testing.

    Finally, do check whether this type of testing is covered by your mother's insurance. From what I've read here, not all insurers cover this cost.

    Thank you CMB!

    Thank you CMB!

  • Armywife
    Armywife Member Posts: 451 Member
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    Cost of Foundation One?

    I'm sure my insurance won't pay it, and we may not qualify for aid.  Does anyone know the cost of the testing if you self-pay?  I didn't see it anywhere on their website.

  • NYLMP68
    NYLMP68 Member Posts: 6
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    Has anyone been given 6

    Has anyone been given 6 months and advised that doing a second course of chemo with Doxin or other would only give them a couple more months? This is what I am getting regarding my mother. Has anyone done it anyway? I'm sorry for so many questions but I don't want to just give up and we have to decide now. They think the quality of life would not be good. I don't want to give up on her recovery - this just doesn't seem right - to lose her yet. Lisa

  • cmb
    cmb Member Posts: 1,001 Member
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    Armywife said:

    Cost of Foundation One?

    I'm sure my insurance won't pay it, and we may not qualify for aid.  Does anyone know the cost of the testing if you self-pay?  I didn't see it anywhere on their website.

    Testing Cost

    I created a new discussion topic for genetic/genomic testing. I hope that brings you more answers than having this topic under the "MMMT cancer" tag.

  • cmb
    cmb Member Posts: 1,001 Member
    edited February 2018 #21
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    NYLMP68 said:

    Has anyone been given 6

    Has anyone been given 6 months and advised that doing a second course of chemo with Doxin or other would only give them a couple more months? This is what I am getting regarding my mother. Has anyone done it anyway? I'm sorry for so many questions but I don't want to just give up and we have to decide now. They think the quality of life would not be good. I don't want to give up on her recovery - this just doesn't seem right - to lose her yet. Lisa

    Create a new discussion topic

    I believe that a number of ladies on the board have been given Doxil when their cancer recurs. However, they may not read or reply to this question since they don't have MMMT cancer, but one of the other equally serious cancer types.

    I suggest you create a new discussion topic on the board with a more general question such as "Need Help with Treatment for Cancer Recurrence (Doxil or other)" so that you can potentially draw in more feedback, not limited to just MMMT cancer.