Are there any other MMMT survivors out there?

Angelasmom2 said:

MMMT
What is MMMT?

Malignant Mixed Muellerian Tumor

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

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.

tundraotter said:

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!!

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.

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

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 said:

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

 

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

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 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.

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!

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

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.

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

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 wer70@cox.net.  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!   

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

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