Are there any other MMMT survivors out there?

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  • Nellasing
    Nellasing Member Posts: 528
    edited February 2017 #302
    Oh dear Brenda,

    You have been through it- so very sorry to hear you are now newy dianosed with MMMT- that just sucks and sure isn't fair! 

    I am very glad you posted here- you will find this is a very active group with the most AMAZING and SMART ladies!!!  They never cease to amaze me with their support and intelligence!

    All the best as you recover and then meet with your gyn/onc.  We look forward to hearing how things go.   (((HUGS))) and prayers for your journey

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Brenda,

    Brenda,

    Welcome to our board. Glad you found us and so sorry you needed to!  Please come back and let us know how you are doing once you get through surgery. I hope you are a good candidate for robotic surgery. Healing time is faster and easier. We are here for you with any and all questions. Nothing is off limits!

    Love and Hugs,

    Cindi

  • janaes
    janaes Member Posts: 799
    Hi BrendaRog,  Sorry I have

    Hi BrendaRog,  Sorry I have posted so late.  I hope you have found some support.  I hope your recovery from surgery is going well.  I had cancer 20 years ago(hodgkins lymphoma) .  I was diagnosed with MMT uterine cancer last May.  I had to do chemo all over again too.  I made it through treatment in October and am doung pretty good now.  If you havent done it yet I would suggest you start a new thread about this and more people will respond.  These old threads are hard to find.  There are some MMT survivers who still post and are further along than me.  I wish you the best as you go forward

    Janae

  • LMPB1927
    LMPB1927 Member Posts: 6
    Seeking Advice and Support

    I am an 89 year old woman recently diagnosed with Stage 4 Mullerian cancer. I lead a busy life, maintain a home, sill drive, and (for the time being) am still out and about most days. I had a hysterectomy last year and a cat scan three weeks post surgery that detected the cancer. Possible causes include having been on estrogen therapy for many decades, and taking tamoxifen during a prior bout with breast cancer (no recurrence since the 1990's). Both estrogen and tamoxifen are now listed as contributing factors to the onset of MMMT. As noted, I was diagnosed as stage 4, and given an original prognosis of approximately 6 months to live (surgery August 2016, and diagnosis in September). After a  subsequent cat scan (December) showed no signs of metastasis my prognosis was revised to (up to) 2 years. While there are no visible metastasis, my cancer antigen blood counts remain high. There was cancer present in my lymph nodes but it was too small to conduct an additional biopsy. I am happy to find this forum as this is a relatively rare form of cancer, so input or advice from others who've had a similar diagnosis, or fought (or are currently fighting) the same disease would be most welcome. My doctor has indicated chemotherapy would be of no benefit, at this point anyway, so my path forward currently involves regular check-ups, including blood tests, and cat scans every two months. I had another scan just 10 days ago, and received a fairly positive report. Of three growths/nodes, or areas they are tracking, two showed no change at all, and one showed a (new) very small growth of just a few millimeters in length. As a result there was no change to my prognosis, and the doctor is still recommending no treatment at this time. I am also making an effort to pursue healthy, cancer fighting nutrition guidelines, and as mentioned, am quite active on a daily basis and have suffered almost no pain thus far. I know this is likely to change at some point, but for now I am taking things one day at a time. I am fortunate to have a strong support group of both family and friends. Any information regarding potential treatments, or trials, or anything else someone feels might prove beneficial as I fight this battle, would be greatly appreciated. I am not interested in debilitating treatments that offer little in terms of an extended life span. That said, I might be willing to consider a difficult course of treatment if it could potentially add even a year or two to my current prognosis.  Given the rapid advances in immunotherapy, and other treatments, an extra year might make a difference with respect to new and improved therapies becoming available.

  • Nellasing
    Nellasing Member Posts: 528
    edited February 2017 #306
    Welcome LMPB1927

    Wow you are amazing!!!  I want to be just like you when I grow up Laughing  Welcome to this group- these ladies have been truly wonderful and inspirational and there are several who are fighting with MMMT and they will probably be along soon.  Looking forward to getting to know you and linking arms as we journey along.  So much better with "peachy" sisters to connect with!  (((HUGS)))

  • Kvdyson
    Kvdyson Member Posts: 789
    LMPB1927 said:

    Seeking Advice and Support

    I am an 89 year old woman recently diagnosed with Stage 4 Mullerian cancer. I lead a busy life, maintain a home, sill drive, and (for the time being) am still out and about most days. I had a hysterectomy last year and a cat scan three weeks post surgery that detected the cancer. Possible causes include having been on estrogen therapy for many decades, and taking tamoxifen during a prior bout with breast cancer (no recurrence since the 1990's). Both estrogen and tamoxifen are now listed as contributing factors to the onset of MMMT. As noted, I was diagnosed as stage 4, and given an original prognosis of approximately 6 months to live (surgery August 2016, and diagnosis in September). After a  subsequent cat scan (December) showed no signs of metastasis my prognosis was revised to (up to) 2 years. While there are no visible metastasis, my cancer antigen blood counts remain high. There was cancer present in my lymph nodes but it was too small to conduct an additional biopsy. I am happy to find this forum as this is a relatively rare form of cancer, so input or advice from others who've had a similar diagnosis, or fought (or are currently fighting) the same disease would be most welcome. My doctor has indicated chemotherapy would be of no benefit, at this point anyway, so my path forward currently involves regular check-ups, including blood tests, and cat scans every two months. I had another scan just 10 days ago, and received a fairly positive report. Of three growths/nodes, or areas they are tracking, two showed no change at all, and one showed a (new) very small growth of just a few millimeters in length. As a result there was no change to my prognosis, and the doctor is still recommending no treatment at this time. I am also making an effort to pursue healthy, cancer fighting nutrition guidelines, and as mentioned, am quite active on a daily basis and have suffered almost no pain thus far. I know this is likely to change at some point, but for now I am taking things one day at a time. I am fortunate to have a strong support group of both family and friends. Any information regarding potential treatments, or trials, or anything else someone feels might prove beneficial as I fight this battle, would be greatly appreciated. I am not interested in debilitating treatments that offer little in terms of an extended life span. That said, I might be willing to consider a difficult course of treatment if it could potentially add even a year or two to my current prognosis.  Given the rapid advances in immunotherapy, and other treatments, an extra year might make a difference with respect to new and improved therapies becoming available.

    LMPB1927, I am sorry to hear

    LMPB1927, I am sorry to hear about your diagnosis but LOVE your attitude! My diagnosis was also MMMT but my treatment was much different. After surgery, I was given 28 external radiation treatments "sandwiched" between 6 rounds of chemo. Luckily, neither were too bad for me and I continued working through them. My status is NED (no evidence of disease) since the end of treatment in May 2016.

    Have you had your genes tested? The results may indicate whether you are a candidate for some of the current trials for targeted treatments and/or immunotherapies. I had mine tested but none had any variants so chances are not good for me to be accepted into any trials if I should ever need them.

    We're so glad that you found our group and look forward to hearing more from you. You may even want to consider starting a new post as it's easier to follow replies that way. Good luck to you and don't be a stranger! Kim

  • LMPB1927
    LMPB1927 Member Posts: 6
    Kvdyson said:

    LMPB1927, I am sorry to hear

    LMPB1927, I am sorry to hear about your diagnosis but LOVE your attitude! My diagnosis was also MMMT but my treatment was much different. After surgery, I was given 28 external radiation treatments "sandwiched" between 6 rounds of chemo. Luckily, neither were too bad for me and I continued working through them. My status is NED (no evidence of disease) since the end of treatment in May 2016.

    Have you had your genes tested? The results may indicate whether you are a candidate for some of the current trials for targeted treatments and/or immunotherapies. I had mine tested but none had any variants so chances are not good for me to be accepted into any trials if I should ever need them.

    We're so glad that you found our group and look forward to hearing more from you. You may even want to consider starting a new post as it's easier to follow replies that way. Good luck to you and don't be a stranger! Kim

    Thank you for the nice

    Thank you for the nice response, and for recommending I start a new thread.  I just did that. I haven't had my genes tested yet; I will ask my doctor about that during my next visit. I wasn't even aware of that option, so I've already learned something new!

  • LMPB1927
    LMPB1927 Member Posts: 6
    Nellasing said:

    Welcome LMPB1927

    Wow you are amazing!!!  I want to be just like you when I grow up Laughing  Welcome to this group- these ladies have been truly wonderful and inspirational and there are several who are fighting with MMMT and they will probably be along soon.  Looking forward to getting to know you and linking arms as we journey along.  So much better with "peachy" sisters to connect with!  (((HUGS)))

    Thank you for the nice

    Thank you for the nice reponse, and kind words. I just re-submitted my intial post on a new thread. I am so happy to hear from you and others, and look forward to making many new friends during the days and months ahead.

  • armyjjg8790
    armyjjg8790 Member Posts: 2
    New Member

    Not sure how to post. I'm new here. 4 1/2 months in remission from stage 3C1, MMMT. I'm unable to find recent post. Thank you 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Hi armyjjg, First ....

    Hi armyjjg, First .... welcome to the board! Congrats on finding your way to NED. May you continue the dance forever. :-)

    This is a great place to ask questions or get support when needed. Or give the same to others.

    If you have any questions and want to start a new thread, go to the top of the page and it says something like start a new topic. Clic on that and you will be all set.  (I'm making an assumption that since you are NED, that you have completed your treatments. If that is not true, you may want to read 'Ladies Going Through Chemo' and 'Let's talk about radiation'. Both have a ton of information from several of us that went through this in 2015 / 2016.)

    Love and Hugs,

    Cindi

  • Shahina
    Shahina Member Posts: 2
    edited August 2017 #312
    Editgrl said:

    Hi, ab57.

    Welcome to the board. I am sorry for your diagnosis. I too have carcinosarcoma, Stage IIIc.  I was very scared when I came here in June after surfing the net.  The women here are great sources of infomation and support which I desperately needed when I found this board.

    I do echo Cindi here. There is a lot of good info on this thread, but it's not so great for new postings.  You might want to start a whole new thread. I do believe that some of the women here have opted not to do chemo, and they may chime in.  

    Yes, they will stage it after surgery. A lot of your treatment plan will depend on the staging, i.e., how far it has penetrated into the uterine wall, whether the lymph nodes, ovaries, etc. are involved, etc.  It's hard, but take a deep breath.  If you've been on the internet doing research, please know that a lot of the information out there is dated. There are a number of long-term survivors here and over on the yahoo board, which you also might want to check out.

    https://groups.yahoo.com/neo/groups/UterineMMMT/info

    Chris

     

     

     

    MMMT diagnosed

    Hi, I am shahina, 70 years old. Just been diagnosed with MMMT advanced stage. Had my hyterectrmy June 2016. Didnt take chemo or radiation after the surgery. It seems the desease has recurred in the form of MMMT sitting between the bladder and the colon. Have been advised carboplatin/paclitaxel 3 cycles to see if the same can shrink the tumor. I live in Pakistan so the treatment is quite conoservative as compared to what u guys are getting in the US. Let me know if i have a chance at life or is it the end?

    Should i go ahead with Chemo or radiation?

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Shahina said:

    MMMT diagnosed

    Hi, I am shahina, 70 years old. Just been diagnosed with MMMT advanced stage. Had my hyterectrmy June 2016. Didnt take chemo or radiation after the surgery. It seems the desease has recurred in the form of MMMT sitting between the bladder and the colon. Have been advised carboplatin/paclitaxel 3 cycles to see if the same can shrink the tumor. I live in Pakistan so the treatment is quite conoservative as compared to what u guys are getting in the US. Let me know if i have a chance at life or is it the end?

    Should i go ahead with Chemo or radiation?

    Shahina, Sorry to hear about

    Shahina, Sorry to hear about your recurrence. If I were in your place, I would go forward with the chemo and any other treatment offered. Please don't give up hope. Since you haven't had chemo before, it makes sense to try carbo/taxel first since it is the "standard" first treatment for this type of cancer. While going through chemo is not easy, it is doable. I pray that it works for you and your tumor responds quickly.

    I'm glad you found us and so sorry you needed to. Please come back and let us know how you are doing. You can ask us anything. Someone will most likely have an answer for you. You may want to read a thread titled 'Ladies Going Through Chemo'.  It has a lot of information that will help you understand what to expect.

    Hope to hear back from you.

    Love and Hugs,

    Cindi

  • Nellasing
    Nellasing Member Posts: 528
    edited August 2017 #314
    Shahina said:

    MMMT diagnosed

    Hi, I am shahina, 70 years old. Just been diagnosed with MMMT advanced stage. Had my hyterectrmy June 2016. Didnt take chemo or radiation after the surgery. It seems the desease has recurred in the form of MMMT sitting between the bladder and the colon. Have been advised carboplatin/paclitaxel 3 cycles to see if the same can shrink the tumor. I live in Pakistan so the treatment is quite conoservative as compared to what u guys are getting in the US. Let me know if i have a chance at life or is it the end?

    Should i go ahead with Chemo or radiation?

    Hi Shahina

    I have a different type but I fully agree with Cindi- I'd go ahead with the treatment and if you can I'd additionally see someone who is experienced in naturopathic treatment of cancer.  They can integrate the treatments so that the "effects" aren't as harmful to the healthy body and help you to rebound faster.   I'm 55 and just about 1 year from my final carbo/taxol treatment and due to the integrated approach I have very little neuropathy, I am still fatigued but others report they have gone right back to work etc.  I also just had a hole in my heart repaired and am recovering from that- the point is that my body is recovering even after being through cancer treatment.  I think it's well worth it to see how it goes- life is precious and each of us has to decide what we are willing to do to keep living each day.  I wish you ALL the best as you make decisions for you and send you BIG (((HUGS))) I hope you'll let us know how things go for you.

  • Kvdyson
    Kvdyson Member Posts: 789
    Shahina said:

    MMMT diagnosed

    Hi, I am shahina, 70 years old. Just been diagnosed with MMMT advanced stage. Had my hyterectrmy June 2016. Didnt take chemo or radiation after the surgery. It seems the desease has recurred in the form of MMMT sitting between the bladder and the colon. Have been advised carboplatin/paclitaxel 3 cycles to see if the same can shrink the tumor. I live in Pakistan so the treatment is quite conoservative as compared to what u guys are getting in the US. Let me know if i have a chance at life or is it the end?

    Should i go ahead with Chemo or radiation?

    Shanina, I was diagnosed with

    Shanina, I was diagnosed with uterine MMMT in Sept 2015, stage 1b, grade 3. I have been in NED status (No Evidence of Disease) since the end of front-line treatment in June 2016. After surgery, my front-line treatment consisted of 6 rounds of chemo (Ifosfamide/Mesna + Taxol) and 28 pelvic external beam radiation treatments.

    I am no doctor so I can only speak from my experience. My experience is this: this is an EXTREMELY aggressive form of cancer so my recommendation is to use all the treatments to fight this disease that your body can stand.  

    Good luck to you and don't be afraid to ask for a second (or third) medical opinion on treatment! Kim

  • Will conquer
    Will conquer Member Posts: 1
    Kvdyson said:

    Shanina, I was diagnosed with

    Shanina, I was diagnosed with uterine MMMT in Sept 2015, stage 1b, grade 3. I have been in NED status (No Evidence of Disease) since the end of front-line treatment in June 2016. After surgery, my front-line treatment consisted of 6 rounds of chemo (Ifosfamide/Mesna + Taxol) and 28 pelvic external beam radiation treatments.

    I am no doctor so I can only speak from my experience. My experience is this: this is an EXTREMELY aggressive form of cancer so my recommendation is to use all the treatments to fight this disease that your body can stand.  

    Good luck to you and don't be afraid to ask for a second (or third) medical opinion on treatment! Kim

    New to MMMT and need advice

    hi there,

    I am new to this, so not sure how it works...

    My mom, 72 yrs old, was diagnosed last week with MMMT in her uterus.  Today we met with a gyno-onco and he seemed to say it was stage 1, but further imaging tests are required to fully understand.  They will do a full hysterectomy in 4 to 6 weeks, after an advisory board, will decide on course of treatment.  I am trying to gain a better understanding of MMMT, not sure what I should be asking the doctors or how to further help my mom.  Any help or advice out there? If it's stage one, her prognosis should ne good, no?

    thanks for being out there!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited September 2017 #317

    New to MMMT and need advice

    hi there,

    I am new to this, so not sure how it works...

    My mom, 72 yrs old, was diagnosed last week with MMMT in her uterus.  Today we met with a gyno-onco and he seemed to say it was stage 1, but further imaging tests are required to fully understand.  They will do a full hysterectomy in 4 to 6 weeks, after an advisory board, will decide on course of treatment.  I am trying to gain a better understanding of MMMT, not sure what I should be asking the doctors or how to further help my mom.  Any help or advice out there? If it's stage one, her prognosis should ne good, no?

    thanks for being out there!

    Hey Will conquer,

    Hey Will conquer,

    Welcome. Sorry about your Mom and I'm glad you found us. You are right, stage 1 is the best possible news but they can't be sure of that until after the surgery. They will most likely do a complete hysterectomy and include lymph nodes and other tissue samples. Once that is done, it takes a couple of weeks for the pathology to determine the stage. That being said, MMMT is one of the "rare" cancers and generally requires chemo regardless of the stage. They have made a lot of progress on dealing with our cancers. While going through chemo isn't easy, it is doable and there are a lot of meds given to counter most of the side effects. Try not to get too far ahead of the process though. This is a long journey with several wait times in between. That is the hardest part. The waiting for information.

    I'm glad your mom has you there for support. That will be the best thing for her! Please come back and ask us anything. Someone will be along that most likely has an answer for you.

    Love and Hugs,

    Cindi

  • Kvdyson
    Kvdyson Member Posts: 789

    New to MMMT and need advice

    hi there,

    I am new to this, so not sure how it works...

    My mom, 72 yrs old, was diagnosed last week with MMMT in her uterus.  Today we met with a gyno-onco and he seemed to say it was stage 1, but further imaging tests are required to fully understand.  They will do a full hysterectomy in 4 to 6 weeks, after an advisory board, will decide on course of treatment.  I am trying to gain a better understanding of MMMT, not sure what I should be asking the doctors or how to further help my mom.  Any help or advice out there? If it's stage one, her prognosis should ne good, no?

    thanks for being out there!

    Hi Will Conquer, so very

    Hi Will Conquer, so very sorry to hear of your mom's diagnosis. It is a scary thing to hear, for sure. Like Cindi noted, the pathologist will determine the stage once surgery is performed. MMMT is a grade 3 cancer so treatment is pretty aggressive no matter the stage. I was staged at 1b after surgery and had chemo and radiation for my front-line treatments. The good news is that it has seems to have work for me and I am back to my "normal" life. Hopefully your mom's experience will be similar. Please come back and let us know how she (and you) are doing. Thank you for being by her side through this. It won't be easy but it is do-able. Try to stay hopeful for her! Kim

  • DottieDean
    DottieDean Member Posts: 36
    marti968 said:

    MMMT meaning

    Malignant Mixed Müllerian Tumors  I am still here after 3 years. Marti in AZ USA 

    Are you still with us marti

    Are you still with us marti

  • DottieDean
    DottieDean Member Posts: 36

    Hey Will conquer,

    Hey Will conquer,

    Welcome. Sorry about your Mom and I'm glad you found us. You are right, stage 1 is the best possible news but they can't be sure of that until after the surgery. They will most likely do a complete hysterectomy and include lymph nodes and other tissue samples. Once that is done, it takes a couple of weeks for the pathology to determine the stage. That being said, MMMT is one of the "rare" cancers and generally requires chemo regardless of the stage. They have made a lot of progress on dealing with our cancers. While going through chemo isn't easy, it is doable and there are a lot of meds given to counter most of the side effects. Try not to get too far ahead of the process though. This is a long journey with several wait times in between. That is the hardest part. The waiting for information.

    I'm glad your mom has you there for support. That will be the best thing for her! Please come back and ask us anything. Someone will be along that most likely has an answer for you.

    Love and Hugs,

    Cindi

    You are right.  It's the

    You are right.  It's the waiting that's the hardest.  Will hysterectomy likely be the first step?

  • Nellasing
    Nellasing Member Posts: 528
    edited September 2017 #321

    Are you still with us marti

    Are you still with us marti

    She was last on in July....

    A lot of the ladies only come here once in a while to check in- that's good news because they are out there living their lives right?!  You can click on their pictures and it will send you to their profile and it will say when they were on last and some have posted their stories there as well.  Smile