Uterine Carcinosarcoma, any survivors out there?

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  • asamuels100
    asamuels100 Member Posts: 3
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    SandyD said:

    Hi Yogini. I'm another MMMT

    Hi Yogini. I'm another MMMT/carcinosarcoma survivor. As others have said the treatment regimen is quite do-able. I had some days during chemo when I didn't feel quite as good but other days when I felt pretty close to normal. For me the worst effects were achiness in my bones and joints and some constipation. You've come to the right place for support and information. Everyone here understands what you're going through. I wasn't sure I had the strength to get through this either. I really surprised myself! You will too! I had hysterectomy/staging in Nov. 2015 and completed chemo and brachytherapy treatments in May 2016. I was staged as 1A but they found papillary serous as well as MMMT. I just found out I've had a recurrence in my lymph nodes but from all I've learned from others here and in another group I can see a way forward and that it's possible to live through this too and thrive!  

    lymph nodes

    Dear Sandy, my mom just found out the cancer (same kind) is back in her lymph node. what treatment did you have?

  • asamuels100
    asamuels100 Member Posts: 3
    edited March 2018 #123
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    Lou Ann M said:

    Welcome to,ths site

    You have been on an incredibale journey.  How strong you must be!  II think,that a lot of the.time we feel worse from the side effects from treatment then we did from,the cancer..  I am on immunotherapy at this time as compassionate use from the manufacturer.  I am having no side effects at all and I just had a CT scan that showed shrinkage in all but one of my tumors. My oncologist is very excited and hopeful that this is working.

    Hugs and prayers to you brave lady, Lou Ann

    immunotherapy

    hi, which one are you on? thank you.

  • usndlb
    usndlb Member Posts: 4
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    Congrats on beating breast

    Congrats on beating breast cancer.  Beating this one is doable too!.  The ladies on this site are wonderful, caring and are here to support and help.  All you have to do is ask and they will share their own journeys.  But in short, be your own advocate, find a dr you can ask questions too and the big thing is they answer you.  If you need or want a second opinion, ask for one.  This site is a safe place, share your joys, good news, come to vent and cry. The ladies are here and will listen.  We have been there.  

    I am 6 1/2 yr survivor of grade 3 MMMT Stage 3C1.  Tumor in Uterus was 1A but had 1 lymph node with 2 cancer cells in it so it was upgraded.  I had 6 chemo treatments and no radiation. Good Luck in your journey as no one but the One knows our expiration date.  trish

     

    Thanx for your story and update for us new one's

    Your journey is amazing encouragement for us and give's us such hope with such a rare and aggressive form of cancer.  Thank you for sharing your carcino sarcoma aka mmmt story with us! God bless and thank God for your wonderful family support!!

  • Tarans
    Tarans Member Posts: 13
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    uterine carcinosarcoma

    Hi everyone, I just joined. It is lovely to "meet" all of you. My mom (age 77) was diagnosed with uterine carcinosarcoma in Dec 2016. Stage 2. She had hysterectomy, radiation and 4 treatments of carbo/taxol. We learned yesterday that the cancer is back in one lymph node. Oncologist recommending more carbo/taxol. My mom does not want this as the side effects were brutal. Has anyone tried just one chamo regimen and had better side effects? And/or immunotherapy? We are scheduled to meet w oncologist on Friday so all information is really helpful. Thank you so much.

    I'm almost 4 years NED with

    I'm almost 4 years NED with Stage 1A MMMT.  I have not had chemo yet since there is no evidence that it spread beyond my uterus, which is the first thing that went.  I recommend that you join the Yahoo group UterineMMMT - you will get a lot of information there as well as recommendations.    carbo/taxil is the usual course- the ladies on the list often have tips on dealing with side effects. 

  • usndlb
    usndlb Member Posts: 4
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    Tarans said:

    I'm almost 4 years NED with

    I'm almost 4 years NED with Stage 1A MMMT.  I have not had chemo yet since there is no evidence that it spread beyond my uterus, which is the first thing that went.  I recommend that you join the Yahoo group UterineMMMT - you will get a lot of information there as well as recommendations.    carbo/taxil is the usual course- the ladies on the list often have tips on dealing with side effects. 

    MMMT

    Congrats on your NED victory!  Thank you for the group info. I'm stage 1b and going through carbo/taxil now.  No Radiation lined up at this time.  They will do a ct scan but not a pet or ca-125.

     

  • Dmont0703
    Dmont0703 Member Posts: 12
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    Hi everyone. Thank you all

    Hi everyone. Thank you all for sharing your journey. I'm a healthy 57 year old. I'm 10 days post op for radical hysterectomy. I found out today that I have this rare form of aggressive carsinosarcoma. I'm being referred to on oncologist and will need 6 rounds of chemo plus 5 weeks of radiation and brachytherapy. I'm frightened but reading your stories helps me to process.

     

  • cmb
    cmb Member Posts: 1,001 Member
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    Dmont0703 said:

    Hi everyone. Thank you all

    Hi everyone. Thank you all for sharing your journey. I'm a healthy 57 year old. I'm 10 days post op for radical hysterectomy. I found out today that I have this rare form of aggressive carsinosarcoma. I'm being referred to on oncologist and will need 6 rounds of chemo plus 5 weeks of radiation and brachytherapy. I'm frightened but reading your stories helps me to process.

     

    I'm very sorry you had to

    I'm very sorry you had to find this site, but glad you did before you begin chemotherapy and radiation. I missed knowing a lot of information that would have been very helpful while in treatment since I didn't join the Board until I was done.

    I have IIIB uterine carcinosarcoma (MMMT) cancer. I completed chemotherapy and radiation last year and so far I am NED (no evidence of disease). The treatment plan you've described is quite typical for MMMT cancer, although a few of us, myself included, had other types of chemotherapy drugs or drug combinations and not everyone has had radiation.

    You may find it helpful to read through the posts at https://csn.cancer.org/node/296461 (Ladies going through chemo…) which describes the experiences of many different women as they underwent treatment. They talk about many things that would have been good for me to know during chemo. Not everyone has MMMT cancer, but there are other ladies with equally aggressive forms of uterine cancer who followed, or are following, the same treatment plan as you.

    I know how upsetting ans scary it is to hear not only a cancer diagnosis, but one that is so aggressive. But keep in mind that the statistics you may read online are often from old studies that don't reflect newer treatment protocols. Chemo and radiation are challenging, but doable. Try to take things one day at time. We're here to support you.

  • Dmont0703
    Dmont0703 Member Posts: 12
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    cmb said:

    I'm very sorry you had to

    I'm very sorry you had to find this site, but glad you did before you begin chemotherapy and radiation. I missed knowing a lot of information that would have been very helpful while in treatment since I didn't join the Board until I was done.

    I have IIIB uterine carcinosarcoma (MMMT) cancer. I completed chemotherapy and radiation last year and so far I am NED (no evidence of disease). The treatment plan you've described is quite typical for MMMT cancer, although a few of us, myself included, had other types of chemotherapy drugs or drug combinations and not everyone has had radiation.

    You may find it helpful to read through the posts at https://csn.cancer.org/node/296461 (Ladies going through chemo…) which describes the experiences of many different women as they underwent treatment. They talk about many things that would have been good for me to know during chemo. Not everyone has MMMT cancer, but there are other ladies with equally aggressive forms of uterine cancer who followed, or are following, the same treatment plan as you.

    I know how upsetting ans scary it is to hear not only a cancer diagnosis, but one that is so aggressive. But keep in mind that the statistics you may read online are often from old studies that don't reflect newer treatment protocols. Chemo and radiation are challenging, but doable. Try to take things one day at time. We're here to support you.

    Thank you for the post and

    Thank you for the post and for the resource information.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,447 Member
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    Dmont, welcome.  I kind of

    Dmont, welcome.  I kind of got lost on this thread - it is kind of old.  It has lots of good info as you found, but I would suggest starting a new thread so the wonderful ladies can also welcome you.  If you need help - please just click on my screen name and send me a private message (PM) 

  • Dmont0703
    Dmont0703 Member Posts: 12
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    Dmont, welcome.  I kind of

    Dmont, welcome.  I kind of got lost on this thread - it is kind of old.  It has lots of good info as you found, but I would suggest starting a new thread so the wonderful ladies can also welcome you.  If you need help - please just click on my screen name and send me a private message (PM) 

    Thank you for responding and

    Thank you for responding and for your suggestion.  

  • skshello
    skshello Member Posts: 13
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    So happy to find this support page

    I was diagnosed with Carcinosarcoma about 2 weeks ago,  had a complete hysterectomy last week, and thought that would be it .  BOY,  WAS I WRONG ...when he said it was rare, and I found that the stats are dismal, I started clicking the keyboard, and finally found this tonight.  Thank you all for posting your stories..it gives me hope, and I am looking forward to meeting with the Doctor next week, for further knowledge.  

  • Jairoldi
    Jairoldi Member Posts: 221 Member
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    skshello said:

    So happy to find this support page

    I was diagnosed with Carcinosarcoma about 2 weeks ago,  had a complete hysterectomy last week, and thought that would be it .  BOY,  WAS I WRONG ...when he said it was rare, and I found that the stats are dismal, I started clicking the keyboard, and finally found this tonight.  Thank you all for posting your stories..it gives me hope, and I am looking forward to meeting with the Doctor next week, for further knowledge.  

    Welcome

    There sure is a lot to learn, and support to be gained, from this discussion board. Wish you didn't need to find it but glad you did.

  • Deesee
    Deesee Member Posts: 3
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    Carcinosarcoma

    I was diagnosed in October 2017, had a hysterectomy and removal of 31 nodes (which were clear), 6 chemo (taxol and carbo) treatments, first CT showed everything ok.  Second scan nine months later, 2-18, and found cancer in multiple lymph nodes.  Did 17 taxol treatments 3 weeks in a row with an off week.  CT scan 9-2-19, more cancer in lymph nodes in chest.  I'm wondering if anyone has had this kind of experience.  And for those who have, and for anyone who just had the original cancer, I'd like details on how things are going now, with dates, etc.

  • cmb
    cmb Member Posts: 1,001 Member
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    I was staged as 3B

    I was staged as 3B carcinosarcoma (MMMT) after my surgery in December, 2016. The medical oncologist designed a two-phase treatment plan: Phase One was 4 cycles of Paclitaxel/Carboplatin, delivered as an outpatient while Phase Two was 4 cycles of lfex/Mesna/Adriamycin (aka Ifosfamide/Mensa/ Doxorubicin), delivered as an inpatient.

    Even though the post-chemo scan showed no disease spread, both the medical oncologist and gynecological oncologist recommended radiation, given the aggressiveness of this cancer. Both agreed that while there was no proof that radiation would improve the overall length of survival, it would reduce the probability for a reoccurrence in the pelvis. The radiation oncologist was more neutral, but I did eventually have 25 external radiation sessions. Treatment was completed in September, 2017. So far I am still NED.

    I'm sorry to hear that your previous treatments weren't successful in keeping you NED. But as you've sadly learned, this type of cancer is quite aggressive and does recur quite often, even in in those with early stages. So far you've received the usual chemo treatments, but there are other drugs that have been used to treat MMMT recurrences.

    Have you had any tumor or genetic testing? A tumor genomic assay could suggest other drugs that might be more effective for you. Genetic testing could indicate if one of the newer immunotherapy drugs would be more beneficial. For example, I learned that I have Lynch Syndrome as a result of genetic testing after my surgery. This makes me a candidate for immunotherapy if my cancer recurs in the future.

    Until last week there was an active, dedicated Yahoo group for women with carcinosarcoma. Many of those women were on different chemo regimens after their cancer recurred. Unfortunately, while the site still exists, no new posts can be added and the old content posted by members will be purged by year end. One woman on that board survived almost 10 years, although she had stage 4B uterine carcinosarcoma from the start. She was never NED and was on several different chemo regimens over the years which kept her cancer basically stable until the end.

    Please come back and let us know what the next steps in your treatment will be. Chances are that one or more women on the board will have already experienced the same treatment for a recurrence.

  • Deesee
    Deesee Member Posts: 3
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    cmb said:

    I was staged as 3B

    I was staged as 3B carcinosarcoma (MMMT) after my surgery in December, 2016. The medical oncologist designed a two-phase treatment plan: Phase One was 4 cycles of Paclitaxel/Carboplatin, delivered as an outpatient while Phase Two was 4 cycles of lfex/Mesna/Adriamycin (aka Ifosfamide/Mensa/ Doxorubicin), delivered as an inpatient.

    Even though the post-chemo scan showed no disease spread, both the medical oncologist and gynecological oncologist recommended radiation, given the aggressiveness of this cancer. Both agreed that while there was no proof that radiation would improve the overall length of survival, it would reduce the probability for a reoccurrence in the pelvis. The radiation oncologist was more neutral, but I did eventually have 25 external radiation sessions. Treatment was completed in September, 2017. So far I am still NED.

    I'm sorry to hear that your previous treatments weren't successful in keeping you NED. But as you've sadly learned, this type of cancer is quite aggressive and does recur quite often, even in in those with early stages. So far you've received the usual chemo treatments, but there are other drugs that have been used to treat MMMT recurrences.

    Have you had any tumor or genetic testing? A tumor genomic assay could suggest other drugs that might be more effective for you. Genetic testing could indicate if one of the newer immunotherapy drugs would be more beneficial. For example, I learned that I have Lynch Syndrome as a result of genetic testing after my surgery. This makes me a candidate for immunotherapy if my cancer recurs in the future.

    Until last week there was an active, dedicated Yahoo group for women with carcinosarcoma. Many of those women were on different chemo regimens after their cancer recurred. Unfortunately, while the site still exists, no new posts can be added and the old content posted by members will be purged by year end. One woman on that board survived almost 10 years, although she had stage 4B uterine carcinosarcoma from the start. She was never NED and was on several different chemo regimens over the years which kept her cancer basically stable until the end.

    Please come back and let us know what the next steps in your treatment will be. Chances are that one or more women on the board will have already experienced the same treatment for a recurrence.

    I did forget to mention that

    I did forget to mention that I did have 3 internal radiation treatments following the surgery.  My oncologist had mentioned immunotherapy but won't look into that unless I am cancer free-which I'm kind of understanding, that is probably not going to happen.  After 17 chemo treatments with just Taxol, they added avastin for 2 of the 3 monthly treatments for three months.  I know there are other drugs out there, and that may be in my future.  I've done pretty well with chemo, except when the carbo was included in the first 6.  I also forgot to mention less than a year before my hysterectomy I had a lumpectomy followed by 16 radiation treatments.

  • LisaPizza
    LisaPizza Member Posts: 358 Member
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    Deesee said:

    I did forget to mention that

    I did forget to mention that I did have 3 internal radiation treatments following the surgery.  My oncologist had mentioned immunotherapy but won't look into that unless I am cancer free-which I'm kind of understanding, that is probably not going to happen.  After 17 chemo treatments with just Taxol, they added avastin for 2 of the 3 monthly treatments for three months.  I know there are other drugs out there, and that may be in my future.  I've done pretty well with chemo, except when the carbo was included in the first 6.  I also forgot to mention less than a year before my hysterectomy I had a lumpectomy followed by 16 radiation treatments.

    I'm not sure why you need to

    I'm not sure why you need to be NED before trying immunotherapy. The indications for the approved immunotherapy (Keytruda, with or without lenvatinib) are recurrent or metastatic disease failed by chemotherapy ... so by definition, these women will not be NED. Also, almost all trials I've looked at, many of which are investigating immunotherapy (as well as other targeted therapies), require measurable disease as an eligibility criteria ... so, also not NED

  • cmb
    cmb Member Posts: 1,001 Member
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    Cancer Free Before Immunotherapy?

    I agree with LisaPizza. I have never read or heard that you need to be cancer-free before starting immunotherapy like Keytruda or Opdivo. Several women on this site and the Yahoo site were given one or more types of immunotherapy after their standard chemo treatments did not work for them. If they had been cancer-free they would not have needed to try the immunotherapy.

    My insurer's medical policy for Keytruda states that:

    Keytruda® may be considered medically necessary for adult and pediatric patients, with unresectable or metastatic, microsatellite instability-high (MISH) OR mismatch repair deficient (dMMR) for the following indications:

    Solid Tumors: Single agent second-line treatment of solid tumors (e.g., Ewing sarcoma, osteosarcoma, cervical cancer, endometrial carcinoma, vulvar cancer, pancreatic adenocarcinoma) that have progressed following prior treatment and satisfactory alternative options are not available.

    There is no requirement that a patient must be cancer free before receiving treatment as long as they are MISH or dMMR.

    As I mentioned in my earlier post, Keytruda would be an option for me since I have Lynch Syndrome (MISH). It may not be suitable for you. However, other immunotherapies work with other genomic or genetic conditions.

    I suggest exploring this topic and the genomic/genetic testing that I mentioned before with your doctor.

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    edited November 2019 #139
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    cmb said:

    Cancer Free Before Immunotherapy?

    I agree with LisaPizza. I have never read or heard that you need to be cancer-free before starting immunotherapy like Keytruda or Opdivo. Several women on this site and the Yahoo site were given one or more types of immunotherapy after their standard chemo treatments did not work for them. If they had been cancer-free they would not have needed to try the immunotherapy.

    My insurer's medical policy for Keytruda states that:

    Keytruda® may be considered medically necessary for adult and pediatric patients, with unresectable or metastatic, microsatellite instability-high (MISH) OR mismatch repair deficient (dMMR) for the following indications:

    Solid Tumors: Single agent second-line treatment of solid tumors (e.g., Ewing sarcoma, osteosarcoma, cervical cancer, endometrial carcinoma, vulvar cancer, pancreatic adenocarcinoma) that have progressed following prior treatment and satisfactory alternative options are not available.

    There is no requirement that a patient must be cancer free before receiving treatment as long as they are MISH or dMMR.

    As I mentioned in my earlier post, Keytruda would be an option for me since I have Lynch Syndrome (MISH). It may not be suitable for you. However, other immunotherapies work with other genomic or genetic conditions.

    I suggest exploring this topic and the genomic/genetic testing that I mentioned before with your doctor.

    I would just mention that

    I would just mention that Keytruda (pembrolizumab)in combination with Lenvima (lenvatinib) is approved regardless of microsatellite status.

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

    I would just mention that

    I would just mention that Keytruda (pembrolizumab)in combination with Lenvima (lenvatinib) is approved regardless of microsatellite status.

    Depends on the Insurer

    My insurer isn't currently covering that combination for everyone. But that may change as they update their medical policies.

  • Deesee
    Deesee Member Posts: 3
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    LisaPizza said:

    I would just mention that

    I would just mention that Keytruda (pembrolizumab)in combination with Lenvima (lenvatinib) is approved regardless of microsatellite status.

    Thank you, I will.

    Thank you, I will.