Are there any other MMMT survivors out there?

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  • marti968
    marti968 Member Posts: 37
    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

    I agree with you

    I ask the same things.  My firends are upset with me since I do not want to do these things.  I am 73.

  • marti968
    marti968 Member Posts: 37

    MMMT
    What is MMMT?

    What is MMMT

    Malignant Mixed Muellerian Tumor

  • marti968
    marti968 Member Posts: 37

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

    MDAnderson

    Are you in AZ or our Mom?  If so would like to talk to your mom if she is able.

  • marti968
    marti968 Member Posts: 37
    kriscan said:

    Treatment update
    I thought I would share with everyone that I have now completed my treatment regimen. I had my surgery in July, my chemo treatments during August - October, my external radiation treatments started in October and continued all of November, and I just finished my third and final internal radiation treatment on December 29th. I was fortunate and experienced minimal side effects. Chemo caused me to lose my hair and I had some minor nausea, my radiation treatments played a little havoc with my bowels, and, naturally, there was some fatigue. However, I continued to work during my treatments and only missed days when I felt I could not perform my job responsibilities adequately.

    I am starting 2011 with my treatments behind me but now I feel like I am on watch. I am scheduled to have my first set of scans by mid January and I have multiple follow up appointments already set. I confess that this part is going to be a little difficult for me. The waiting to see if the treatments worked will cause me some anxious moments I think. I tend to be a positive person and I am feeling good, but I never felt bad before my diagnosis either.

    I am going to try to focus on living my life as normally and productively as I can since this is what I can control. I have a wonderful family which includes three children who I am fortunate enough to be close to and involved with despite the fact that they are 20, 18, & 15 (all ages when kids tend to distance themselves from parents). I am also fortunate with respect to my job because it is more than work to me,it is a mission. I work as a domestic violence, legal advocate & counselor and have been blessed to meet,help & serve many courageous, wonderful women doing my "job" and I hope to continue in my efforts for a long time to come.

    I see every day what women can accomplish under very difficult and stressful circumstances with belief in themselves and a solid support system. The inspiration they give and the courage they demonstrate will continue to help me as I help them. Kris

    KrisCan

    Oh you are so positive.  I am trying to be.  I always have been but now have lots of down days.  I live alone and my friends have left for the summer for cooler spots like Colorado where I used to go with my former husband.  I wonder if I should try to stay alone or should I move into an Independent Living Facility for this.  I sold my home a few years ago and live with my two little Bluemoom Yorkies.  The "Pooper" I have posted is Lacey.  I lost her 3 yrs ago and when my 93 old friend passed away I "inhereted" the two Yorkies.  It helps to have them here.  They will not leave my side.  They are used to me since they had play dates with my Lacey so they know my smell and thier smell must be all over.  Here for less than 2 minutes they stopped crying and wanted to play. They seem to greave for Carol at times but otherwise they do fine.  I tuly love the fur-kids.  So I haveto servive so that these two fur-kids do not loose another non-fur-mommy, LOL!  Seems rough to get these treatments done and the side effects.

  • marti968
    marti968 Member Posts: 37
    RoseyR said:

    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

    E-Mail

    I am not puter savy and clicked on what I thought what would produce a way to give you my E-Mail.  I guess it sis not work.  Please E-Mail me at [email protected].  I know nothing at all and no one is calling me. I just can't seem to get the strenghth to go to the Hospital and talk to someone there at the 2nd floor. 

  • marti968
    marti968 Member Posts: 37

    By the way, I'm 49 years old
    By the way, I'm 49 years old and thought my lack of periods and slight pelvic discomfort was just the onset of menopause. We need more publicity to encourage early detection!!

    Signs and Symptoms

    My GYN Doc told me that there is no warning since the things that happen usually are symptoms for other things. It does not show up in the yearly tests of course.

  • nevadavox
    nevadavox Member Posts: 3
    marti968 said:

    I Have MMMT

    3-29 D & C then told 04 02. GYN sent me to GYN Oncologist

    I am 73. I guess I have the rarest MMMT. It is a result of the Fibroid Tumors if I am understanding it correctly.  Or at least I do have Malignant Mixed Muellerian Tumor for those of you who do not know what it is. It is only in the Uterine Area and they left the large Tumor in there after the D and C 3-29-2013. So I am just starting this mess. I was not even going to do a Hysterectomy since I am not in the greatest health with lack of thyroids and Parathyroids, Erratic Blood Sugars due to the thyroid and parathyroid problems. I have Emphysema. Am way over-weight at 205 lbs (used to be 398 in 09-2000 started weight at 119 until these glands were removed. I am only 5 ft 2. I has taken all the years to get down. Any way, Chemo is pretty bad and am not convinced to do it. I cancelled surgery since i am moving. Do not even want to do that really. I do not even know where to start. I live alone and no one has called. I called a hospice and they were helpful for later on when they are necessary. You all seem to have lived a lot longer than I have found on the medical sites that I researched. So that is some hope. So now there are at least  2 of us Carrie. 

     

    Dear marti968

    Dear marti968 ~ My partner Michelle has been diagnosed with the same -- carcinosarcoma/MMMT in her uterus. I read your post to her. We want you to know that even if you feel alone, you've got compatriots in this experience. Michelle has been told she is probably a stage 3. She's scheduled for radiation treatments to begin on Wednesday. She's 49, and her tumor is necrotizing (growing so fast that it outpaces the blood vessels supplying it, so some of the tissue is constantly dying. So instead of blood and spotting, she is dealing with a ton of discharge that has a very bad/foul odor. Not fun -- not at all. But while statistics are scary with MMMT, they're also outdated. There are a lot of women who make it through this if they get the right treatment and the right support. We just wanted to say that we're grateful that you're here, and that we are also here, dealing with the same thing. Much hope and healing to you!

    ~ Nick

  • DrienneB
    DrienneB Member Posts: 182
    jazzy1 said:

    You're Welcome~
    One other question you might ask, why the mix of drugs they're suggesting for your mom? As mentioned the ones I had -- carboplatin & taxol -- are the first line used most often. But...we all know different strokes for different folks, plus different and new updates for drugs. Curious if nothing else if you have an answer.

    Both the type of docs you suggested are EXCELLENT. Can't remember if this was suggested...DON'T BOTHER TO RESEARCH THIS PARTICULAR TYPE CANCER....nothing looks good. More and more treatments we're finding TODAY are showing good results with long-term results. As well, these good results aren't showing up on the latest notes.

    As well, I'm on a yahoo group for MMMT and can tell you a good chunk of our groupies are survivors 5+ years. This gives all of us hope to know the future can be bright and cheery.

    Keep the faith as your mom will be with the long termers....

    Jan

    Am Encouraged

    Hi Jan,

    I'm encouraged by your posts, and those of many others on this site. I was 51 and diagnosed this past April/May with MMMT, Stage 3B. After surgery, I started 6 courses of Taxol/Carboplatin in June. I'm hoping to be finished by the end of September, but might have to delay my next course (5th) due to low Neutrophils.

    After my surgery, my parents--both medical professionals--were so discouraged by the statistics they suggested I might consider opting out of chemo!! It's so great to hear from you and others, and not feel doomed and in solitary exile! Moses asks God to "teach us to number our days," and I don't mind thinking more seriously about a closer end than imagined. Yet, like all of us here, I want to live and do what I can to fight this, and am so glad to know of other peoples' experiences.

    Cheers to everyone here who is seeking to learn more and encourage others!

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    DrienneB said:

    Am Encouraged

    Hi Jan,

    I'm encouraged by your posts, and those of many others on this site. I was 51 and diagnosed this past April/May with MMMT, Stage 3B. After surgery, I started 6 courses of Taxol/Carboplatin in June. I'm hoping to be finished by the end of September, but might have to delay my next course (5th) due to low Neutrophils.

    After my surgery, my parents--both medical professionals--were so discouraged by the statistics they suggested I might consider opting out of chemo!! It's so great to hear from you and others, and not feel doomed and in solitary exile! Moses asks God to "teach us to number our days," and I don't mind thinking more seriously about a closer end than imagined. Yet, like all of us here, I want to live and do what I can to fight this, and am so glad to know of other peoples' experiences.

    Cheers to everyone here who is seeking to learn more and encourage others!

    Do not give up ever.

    No one has an expiration stamp on them, as there is only One that can tell when that will be.  Fight with all your might.  Your parents are may be reading information that is based on old statistics and not current.  Medicine is changing and new technology is coming along.  I was diagnosed in April 2011, had complete hysterectomy with 10-12 lymph nodes removed.  I was told it was stage 3C MMMT.  I had 6  carbo/taxol and no radiation.  I just pasted my two year mark from date of last chemo treatment and I am no evidence of disease (NED). 

    Remember we are here to support you.   Praying for all. trish

     

  • DrienneB
    DrienneB Member Posts: 182

    Do not give up ever.

    No one has an expiration stamp on them, as there is only One that can tell when that will be.  Fight with all your might.  Your parents are may be reading information that is based on old statistics and not current.  Medicine is changing and new technology is coming along.  I was diagnosed in April 2011, had complete hysterectomy with 10-12 lymph nodes removed.  I was told it was stage 3C MMMT.  I had 6  carbo/taxol and no radiation.  I just pasted my two year mark from date of last chemo treatment and I am no evidence of disease (NED). 

    Remember we are here to support you.   Praying for all. trish

     

    Thank You, Trish!

    Trish,

     

    I'm very encouraged to hear that you're doing so well! My staging at diagnosis/surgery is similar to yours and I am also close in age. Fifty-two. I'll have my last carbo/taxol treatment this week, and am trying to decide about radiation.

     

     

    I have high myometrial invasion and malignant cells in my washing. Two radiological oncologists are in favor of external pelvic radiation, but my surgeon (gynecological oncologist) is against it. She believes we should not do radiation until/unless another tumor develops in my pelvic region. But I am still mulling the decision over and praying about it. I have an appt. tomorrow with one of the radiological oncologists, but will probably not be ready to decide for a little while longer.

     

     

    Did you consider radiation therapy? Were you advised against it? In my case, I actually brought it up, and then was referred to the other doctors.

     

     

    I’ve been doing okay with the chemo, but am anxious to move on from patient mode. Are you doing anything differently since your diagnosis (exercise, diet, etc.)? I thought I was living in a pretty healthy way before all of this happened, so am not sure how crazy to get over this thing. I don’t want to be obsessed with the issue, but want to do what I can.

     

    And I believe the outcome is in God's hands, and am asking for a willing spirit either way. I am greatly relieved to be reminded via the stories/comments/encouragements in this group and others that we are not statistics.

     

     

    Best to you,

     

    Jane in Berkeley, CA

     

  • DrienneB
    DrienneB Member Posts: 182
    sandy_b said:

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

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

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

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

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

    Hi Sandy!

    Hi Sandy,

    How are you doing? I hope you're THRIVING!!

    I'm new to this, but a few months ago (year 2013) was the age that you were when you were diagnosed. I was 51 (this past April)  and am now 52, and also staged at 3B. After my hysterectomy, it was known that my tumor had almost fully invaded the myemetrial tissue layer and I also had a pelvic washing that was positive for cancer cells. Clear CT scans and visible lymph node action. I'm just finishing my carbo/taxol regime and am also considering radiation. My doctors are 2 "for" and 2 "against" radiation. LOL! I'm wondering what you decided about that!

    Thanks,

    jane

  • Reggie63
    Reggie63 Member Posts: 5
    Encouraging

    Thank you 1975goatgirl for your post.  Yours was the first posting I saw & it made me feel so much better.  After doing some more reading, I found other encouraging stories.  My mom who is 72, was recently diagnosed with stage 3c MMT Uterine Carcinosarcoma.  She underwent a radiacal hysterectomy & lymphectomy. Out of 3 lymph nodes removed, the cancer was found in one. She is currently undergoing 7 weeks of both chemo & radiation & what they call "vaginal boosts".  So far she is 2 weeks in and has not had any of the side effects she was told would follow, thank God.  The survival rate statics we were given were not very hopeful but after reading several of the postings on this site, I now have hope.  Thoughts & prayers to you all.  

     

  • cleo
    cleo Member Posts: 144
    Reggie63 said:

    Encouraging

    Thank you 1975goatgirl for your post.  Yours was the first posting I saw & it made me feel so much better.  After doing some more reading, I found other encouraging stories.  My mom who is 72, was recently diagnosed with stage 3c MMT Uterine Carcinosarcoma.  She underwent a radiacal hysterectomy & lymphectomy. Out of 3 lymph nodes removed, the cancer was found in one. She is currently undergoing 7 weeks of both chemo & radiation & what they call "vaginal boosts".  So far she is 2 weeks in and has not had any of the side effects she was told would follow, thank God.  The survival rate statics we were given were not very hopeful but after reading several of the postings on this site, I now have hope.  Thoughts & prayers to you all.  

     

    I always figured that the 'survival statistics' data is suspect  as how can the statistics for those who have survived be gathered accurately??  Therefore..best to totally disregard it.

    There are many like me.  Stage 3/4, uterus/bladder/lymph glands.   Have slight L leg lymphedema due to the removal of the large number of affected glands but 6 years on remain well.  Your mum sounds strong...keep supporting her and be totally positive.    I worried more about what this was doing to my family than myself.   My son was a common sense/ no nonsense strength throughout.   I wish you all well.

  • Reggie63
    Reggie63 Member Posts: 5
    cleo said:

    I always figured that the 'survival statistics' data is suspect  as how can the statistics for those who have survived be gathered accurately??  Therefore..best to totally disregard it.

    There are many like me.  Stage 3/4, uterus/bladder/lymph glands.   Have slight L leg lymphedema due to the removal of the large number of affected glands but 6 years on remain well.  Your mum sounds strong...keep supporting her and be totally positive.    I worried more about what this was doing to my family than myself.   My son was a common sense/ no nonsense strength throughout.   I wish you all well.

    cleo

    Thank you cleo for your reponse!  After reading most of the stories & the length of time since first diagnosis as I said, I have new hope & yes I will disregard all the stats & be positive in my thinking.  Six years is simply awesome & I am glad you have done so well.  My mom is a very strong person.  Even though she is not being very positive at this time, she is going through treatment like a trooper.  I am hoping to get her to read the stories on this site because she still has the statics given to her in her head & is figuering on only being around another year or two. Thanks again & wishing continued good health!

  • ghee56
    ghee56 Member Posts: 4
    MMMT

    I was diagnosed in 2004 at age 56....stage 1C. Had a complete hysterectomy followed by radiation, internal (ugh) and external. Followed a cancer diet for about a year after from a book sent by a doctor friend....think it was called the cancer survival diet....not sure since I passed it on to others. Lots of exercise and prayer. Only residual problem is pain in the area, probably from internal radiation. Best of luck to you....How were you diagnosed? Mine was a fluke diagnosis as the result of a D&C to remove a cyst.

  • ghee56
    ghee56 Member Posts: 4
    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

    Mmmt

    Don't read too much on the Internet. I read a great comment by a writer who had just been diagnosed with colon cancer. He said the weatherman predicted sun for the next day, but it snowed...cancer survival predictions are just like that. Just a general guess...not specific to your Mom. I did not have chemo, but needed no help during radiation...drove myself. Hope your mom has similar success.

  • marti968
    marti968 Member Posts: 37
    marti968 said:

    I agree with you

    I ask the same things.  My firends are upset with me since I do not want to do these things.  I am 73.

    April 2013 to Oct 19 2013

    I am back after having external radiation and then for the internal for my MMMT.  I have a dull pain, spasms, gas pains etc and am slighly uncomfortable but I don't think It has gone to the lungs at all but I think it has gone to the other areas abdominally.  I had absolutely no symptoms like bleeding or pain.  My GYN doc asked me if I knew I had blood in my Uterus and I told her no.  I am incontinent and would most likely not notice it unless there is a large amount of bleeding.  I did not even see any pink tingued stuff.  So since Apr 7th when I was told the results of the D & C, I have done all the reasurch I can find. Nothing is great and it is all so negitive.  I am not going to give up but It is hard to stay positive with this one.  Because of my other health issues I did not do surgery.  I knew that if I did I would not come off that table alive and the feeling was so strong I decided I better listen to myself. I only had radiation figuring I might as well do that but try to limit the cutting on my body and just die gracefully.  Not exactly how I want to say that but do not know quite how to say what I mean.  I really believe if I get surgeries over and over it will shorten my life much more than if I just kind of coast.  Oh and I did not do any Chemo either.  So will come back here and let you kow how I am doing and if I am still alive occassionly.  I just did the brach therapy or brachy therapy.  I have seen it spelled both ways so am not sure exactly what is the correct spelling, but who cares really.  I read everything I can get my hands on and hope that maybe there will be better news but not happening yet.  My prayers for all of you and also for me.  God knows what He is doing so I give it all to him. 

  • marti968
    marti968 Member Posts: 37
    nevadavox said:

    Dear marti968

    Dear marti968 ~ My partner Michelle has been diagnosed with the same -- carcinosarcoma/MMMT in her uterus. I read your post to her. We want you to know that even if you feel alone, you've got compatriots in this experience. Michelle has been told she is probably a stage 3. She's scheduled for radiation treatments to begin on Wednesday. She's 49, and her tumor is necrotizing (growing so fast that it outpaces the blood vessels supplying it, so some of the tissue is constantly dying. So instead of blood and spotting, she is dealing with a ton of discharge that has a very bad/foul odor. Not fun -- not at all. But while statistics are scary with MMMT, they're also outdated. There are a lot of women who make it through this if they get the right treatment and the right support. We just wanted to say that we're grateful that you're here, and that we are also here, dealing with the same thing. Much hope and healing to you!

    ~ Nick

    NevadaVox

    Oh here are some 2013's. I have read everything and re read these.  I thank you for your answer to me and am sorry that I did not know it was here, but they have kept me so busy I just did not have time to get online.  3 hr. drive a day m-f to doctor for external radiation then to Hospital for 6 internal I think it was 6 maybe 8.  I actually have had to go to the ER 4 days ago and my doctor is out of town and do not know what they out come is.  I asked if I had rectal cancer but did not ask about others so ER doc said no.  But did say I had irregularities what ever that is so am anxious for my doctor to get back for a few days of vacation. I have a million questions. I will watch for your answers.  I am [email protected].  If you want to email me direct by all means.  Thanks again for the reply.  I meant I was alone living wise but I have God and several wonderful friends that call.  Now that they have snowbird back to AZ will try to do some socializing.  LOL!   

  • marti968
    marti968 Member Posts: 37
    marti968 said:

    I wondered how to do that also

    Thanks will go try and see if I can do it.  It shoujld be easier than that.  Should be at the top of the page to give one the choice to post comment or respond to comment.  aoh well just a little thing.

    Here is what I look like

    I have lost about 100 pounds since this picture.  I went from 119 to 398 from 09-2000 to 12-2000.  Since cancer have finally lost and am losing the weight that I wanted to lose and couldn't.  I an scooter dependent so do not get as much exercise as I want to do.  Am unable to take more than a few steps then fall so I pretty much stay on the scooter. This picture is in the BX-Power Zone behind me note the TVs  I am learning how to use my cell phone and still need to know so much about it. So I am really listening to the clerk.

    I live on base now since they offered the base houseing to the retired Military so I took advantage of the offer.  Love living here but the security makes it extremely hard for me to live here much longer and am going to move very soon.  Depending on the results of the ER visit 4 days ago the place I am going to move to is still pending.

  • marti968
    marti968 Member Posts: 37
    jazzy1 said:

    You're Welcome~
    One other question you might ask, why the mix of drugs they're suggesting for your mom? As mentioned the ones I had -- carboplatin & taxol -- are the first line used most often. But...we all know different strokes for different folks, plus different and new updates for drugs. Curious if nothing else if you have an answer.

    Both the type of docs you suggested are EXCELLENT. Can't remember if this was suggested...DON'T BOTHER TO RESEARCH THIS PARTICULAR TYPE CANCER....nothing looks good. More and more treatments we're finding TODAY are showing good results with long-term results. As well, these good results aren't showing up on the latest notes.

    As well, I'm on a yahoo group for MMMT and can tell you a good chunk of our groupies are survivors 5+ years. This gives all of us hope to know the future can be bright and cheery.

    Keep the faith as your mom will be with the long termers....

    Jan

    Yahoo Group

    Where is this group.  It would be nice to see positive for a change.