Are there any other MMMT survivors out there?

Welcome to our board! Just wanted to say congratulations on dancing with Mr. Ned. May you continue that dance forever!

Love and Hugs,

Cindi

Hi, I am a new MMMT patient, Stage 4 and will start chem on Mon, 20Nov2017.  My regimen includes taxo and carboplastin plus a new drug called Avastin (which is intended to block angiogenesis or blood vessel growth into the tumors).  What drugs did you take??

Kvdyson said:

I'm so sorry to hear about your mother's diagnosis

Hi Kerrey, I'm so sorry to hear about your mother's diagnosis. I recall being in her shoes just last September. It is a very scary time but please know that you will have all the support that you need from us.

Has she had surgery yet? Mine was a TAH-BSO with 14 lymph nodes excised. It took me about 4 weeks to get back to feeling normal and back to work (part-time, desk job).

The stage and grade of her cancer tumor is very important to know. Mine was uterine carcinosarcoma (MMMT), stage 1b, grade 3. The information about the tumor will determine her treatment plan. My treatment was 6 rounds of chemo ( Ifex/Mesna/Taxol) with 28 external radiation treatments "sandwiched" between the 3rd and 4th rounds of chemo. I finished treatment in May and have had a clear scan showing no evidence of disease or "NED".

Is her doctor a gyn-onc with experience treating MMMT? At this early stage, I recommend getting copies of all her pathology and surgery reports for her files. They will come in very handy to refer back to and if you decide to get a 2nd opinion.

Also, she may want to consider taking a tape recorder to appointments or find out if her cell phone has an app to record them. There may be a lot of important information discussed and you don't want her to miss anything. I listened to my recordings again recently and realized that I had missed some very important things the dr. had said at the time.

Please pass on my wishes of good luck to her (and to you). She can do this and we will be here to support you both! Wishing you both peace and strength, Kim

Kvdyson, I was thinking of recording my appointment next week, as I always forget things that were said. Do you ask the doctor's permission to record and if so, do they ever say no?

Will conquer said:

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,

 Your mother is very fortunate. Most mmmt goes undetected until stage III or IV. My doctor gives complete information based on imperical evidence of which there is very little. I research all I can what he tells me. Too often you get your answers after the fact. For example, treatment comes at a cost. If you go to youtube and search for chemo and neuropathy, you will find patients that post their experience. I googled Doxil which is currently what my Dr recommends. I've done other chemo and radiation. The side effects were recorded by actual patients who have had that treatment. Wish I had known prior to first treatments. Make no mistake, the treatments are harsh, and in my case to no avail. However, others have responded well to same treatment. By this time your Mom has made some decisions. Just get names of treatment recommended. If the side effects are severe, I decline since my cancer has not responded to any treatment to date. I wish you and family Gods Blessings.  Mary

Dear GinaCatR, yes there are people here who still read and comment.  With 7 electronic pages it is sometimes hard to find things when they get posted.

I would think your mother would be dealing with a gynecologic oncologist if you are working with the Cleveland Clinic - I am assuming it is a hospital that has some affiliation.  (Indianapolis has something like that with MD Anderson)  Not sure where in Florida you live, but there are a few other ladies here who may be able to suggest another doctor/hospital.  

Since your mom has had the hysterectomy I think they should be able to give you the proper staging.  I think you need to find someone who will give you some answers.  I am sorry your family is having to go through this and you are a good daughter to be concerned. 

Where in Florida does she live?  How many chemo's has she had and do you know what kind?  (Taxol and/or Carboplatin?)

GinaCatR said:

Oh wow!! Thank you so much

Oh wow!! Thank you so much for your message!! I was trying to navigate and wasn't finding people. This is a Godsend! We live in South Florida so I'm thinking the resources must be vast--but we don't know anyone who has had anything like this (so no one so far knows what to tell us). And you are right--we are dealing with a gynecologic oncologist and she is completing her last round of (6) chemo today. And she's doing both taxol and carboplatin together. Her CA-125 is also in the negatives too so things are actually good right now. But we have one doc acting (not actually telling) us that he thinks she has seen the last of this cancer but then we have the other extreme where the surgeon says she has a 50/50 chance of it coming back and he acts (again--ACTS) all grim reaper. Both docs have not offered a stage but said "probably about" either a II or a III. I see now though there is more to that than just a II or III--which is frustrating they aren't telling us (like what I'm seeing all over this forum board). 

We seem to have docs who have been good about dealing with her physically but their communication skills are horrible. They do a lot of "hinting" and only give us information if we know the right questions to ask--which is frustrating since we don't! 

So poor mom is finally feeling great again and started doing the dreaded Googling. And I'm sure everyone knows where that takes you. She is now feeling hopeless, so I'm here to fight for her. I did tell her about this forum and how there were plenty of women who are doing well years later, which I think lifted her spirits! I just want to kick it into high gear and find an actual partner who has communication skills (and doesn't get annoyed when we ask questions too--that's another one with one of the docs). No time for that nonsense!! 

Your message really helped@Notimeforcancer! Pour on any advice/guidance!! I'm here to absorb! 

The pathology report from the hysterectomy will tell you the stage of the cancer. If your mother hasn't gotten a copy of this report, make sure she does. I also suggest asking for copies of the bloodwork that was done while your mother was receiving treatment. I did not try to collect every one of these reports since my blood levels were measured weekly, but I did get copies of the ones that were done before I had the chemo infusions. Your mother is entitled to her medical records and this information will help if she decides to seek out another doctor or further treatment like radiation.

Because MMMT is a rare cancer, doctors may legitimately have different opinions about the long-term prognosis. But survival statistics from the past may not be as applicable to newer patients since treatment methods have changed over time. There are some longer-term survivors on this site, as well as the Yahoo group dedicated to MMMT cancer.

Marjorieann said:

MMMT

Hello from Ireland.

In 2010 I was diagnosed with MMMT GRADE 3 STAGE 1 

Im still here!!!    do I hold a record?

regards Marje

Marje,

There are a couple of long-term survivors of MMMT that I know still post. Others may have survived their battle with this disease, but have stopped posting here as their cancer experience recedes into the past. And unfortunately some of the women on this thread have passed on.

So I'm not sure you're our longest MMMT survivor here, but you're certainly in select company.

We're always happy to welcome another long-term survivor of this aggressive disease to the board. Thanks for letting those like me with this same type of cancer know that there is hope for a long-lasting remission.

Hello there.  My mother was diagnosed with Stage 1 MMMT tumor grade 3 in February of this year.  Went through chemo; now going through radiation.  Has anyone had any luck with immunotherapy?  We want to be optimistic but are terrified by the stories of recurrance.  Thank you so much~

Kvdyson said:

I'm so sorry to hear about your mother's diagnosis

Hi Kerrey, I'm so sorry to hear about your mother's diagnosis. I recall being in her shoes just last September. It is a very scary time but please know that you will have all the support that you need from us.

Has she had surgery yet? Mine was a TAH-BSO with 14 lymph nodes excised. It took me about 4 weeks to get back to feeling normal and back to work (part-time, desk job).

The stage and grade of her cancer tumor is very important to know. Mine was uterine carcinosarcoma (MMMT), stage 1b, grade 3. The information about the tumor will determine her treatment plan. My treatment was 6 rounds of chemo ( Ifex/Mesna/Taxol) with 28 external radiation treatments "sandwiched" between the 3rd and 4th rounds of chemo. I finished treatment in May and have had a clear scan showing no evidence of disease or "NED".

Is her doctor a gyn-onc with experience treating MMMT? At this early stage, I recommend getting copies of all her pathology and surgery reports for her files. They will come in very handy to refer back to and if you decide to get a 2nd opinion.

Also, she may want to consider taking a tape recorder to appointments or find out if her cell phone has an app to record them. There may be a lot of important information discussed and you don't want her to miss anything. I listened to my recordings again recently and realized that I had missed some very important things the dr. had said at the time.

Please pass on my wishes of good luck to her (and to you). She can do this and we will be here to support you both! Wishing you both peace and strength, Kim

Kvdyson, just want you to know, your posts are very encouraging. You give my family and I hope. Thank you

mlshep said:

Carcinosarcoma

I was diagnosed with Carcinosarcoma 7/2018, had surgery 2 days later, was Stage 3A, proceeded with 3 treatments of Carboplatin and Taxol, 25 external radiation treatments, followed by 3 more treatments of the Carbo/ Taxol . I tolerated the treatments well, just really zapped my energy and strength toward the end. A CT scan has shown no evidence of disease.

i would like to ask if any of your doctors have suggested genomic testing through Foundation One, and if so, what are your thoughts?

It is so interesting to read others paths with this disease and to see that there are those who are still doing well.

 

Forgot to say I was diagnosed at 63.

Lynn

Are you new to the board?  It is a wonderful place to learn about other women's experience with this disease.  You have posted at the bottom of an old post, which makes it hard to find.  You could make a comment all youur own.  There are lots of women who hae had gehomic testing and would be happy to discuss it.  It would be easier to find in a new thread.