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MMMT Stage IV

OUMusicTeacher
Posts: 1
Joined: Apr 2018

Hello all -

 

My Mom was very recently diagnosed with MMMT - malignant mixed Müllerian tumor. At first they thought it was localized to her uterus, and were confident it was Stage I or II, but her CT scan shows a mass in her lung as well, making it Stage IV. She's having a total hysterectomy next week, and chmo following. We have no history of any kinds of cancers in our family, and we are very unfamilir with all of this. I understand that MMMT is a very rare and aggressive form of uterine cancer, and have done as much research as I can. Only accounts for about 3% of all uterine cancers, but 30-40% of fatalities. 5 year survival is about 26%, based on an average of a few sources. I do realize statistics aren't everything, but I'm also preparing for the worst but hoping for the best as much as I can.

I would like to hear personal accounts from anyone wiling to share, about the process of going through chemo (this doesn't have to be limited to MMMT of course, I imagine it's somewhat similar for most advanced uterine cancers), and about MMMT specifically if you've experienced it. Also - anyone who has had a total hysterectomy surgery with vertical incision and can give me information on what to expect during her recovery, I would appreciate that. I'll be caring for her for at least the first week, but none of us really know what to expect. Thanks so much.

DM_K's picture
DM_K
Posts: 50
Joined: Mar 2018

Hi OUMusicTeacher,

Sorry about hearing about your Mom's diagnosis, it's something no one wants to hear.  I was just diagnosed with Uterine Serous Cancer 4B last month, had extensive abdominal surgery on 3/27 that last over 10 hours.  I just had my first chemo treatment today that didn't go all too well unfortunately but I can provide you information about incision care, mine is almost completely healed and it's 28 cm long.

Daily showers are very important, and make sure the incision is washed with soap and water.  I put soap on my clean finger tips while in the shower and just gently washed over the incision, even with both staples and steri strips.  Don't touch the incision when not washing it.  I used abdominal pads to keep clothing from rubbing the incision and I changed the pads 2 times a day.  Absolutely, no bending, lifting, or twisting, also knows as the BLT's.

I hope this helps but make sure your mom's incision is also being frequently monitored by her ONC/GYN/Surgeon

 

cmb's picture
cmb
Posts: 354
Joined: Jan 2018

If you read the posts at  https://csn.cancer.org/node/296461 (Ladies going through chemo…) you'll get a spectrum of the experiences of many ladies who were undergoing chemo treatment in 2015-2016. Not everyone posting on that thread had/has MMMT cancer, but there are other ladies with equally aggressive forms of uterine cancer.

I was not on the Board at that time, so if you want to see a summary of my MMMT-related treatments, click on my username (cmb) in the blue panel to the left and you can read about my experience.

I'm sorry that you've had to join this Board due to your mother's diagnosis. But you'll find lots of very helpful information and support here from other members.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2572
Joined: Mar 2013

OUMusicTeacher, I will say you have done a very thorough review of MMMT, and I think your mother is lucky she will have you at her side.  

Since I did not have a large abdominal incision, or late stage cancer, I will let the other warriors share their experiences.  Please know none of us fight alone, and could not have made it without the help of our family and friends - even the electronic kind. 

 

derMaus's picture
derMaus
Posts: 558
Joined: Nov 2016

The search function on this board works relatively well - relatively being the operative phrase; sometimes you have to jimmy around with it.  If you put "MMMT" in as the search term, you'll get to see lots of different postings on the topic which you may find helpful. Welcome and best wishes, B

janaes
Posts: 752
Joined: May 2016

Hi i too was diagnosed with MMMt uterine cancer. Mine was stage 2 grade 3. It was scary for me to get this cancer. Having it named MMMt was even scarier.  But guess what i did what i needed to do and its been a year and a half since treatment was done. I had to live a day at a time and get support here to make it through.  Met some really great people here to.  Come here as you need to. Its okay to have your feelings and this is the place to find the support. You and your mom can do this. 

Janae

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

I was diagnosed uterine MMMT Stage III a little more than 5 years ago. I had the surgery and 6 rounds of Taxol/Carboplatin. Chemo's hard, but mine only lasted 4-5 months. It has been effective for many people. There isn't enough data on MMMT, but from the antecdotes on sites such as this one and the FB page for MMMT, there are a lot of longterm survivors. Hugs to you and your mom!

 

pinky104
Posts: 574
Joined: Feb 2013

I'm a survivor of stage IVb UPSC, another grade 3 rare uterine cancer that is responsible for a lot of deaths.  I didn't find my first chemo, which consisted of the commonly used carboplatin and taxol, bad at all.  I took a pill called Emend to prevent nausea for a couple of days before and on the day of chemo.  I had no nausea at all.  I had a few mouth sores after the first treatment, which went away with a mouthwash the oncologist gave me at my second visit.  My only other problems with the carboplatin and taxol were about halfway through my six rounds of chemo (each round was 3 weeks apart).  At that point, I became very short of breath, which turned out to be from a low red blood count.  I had a transfusion of blood and was supposed to feel markedly improved right away, but I didn't feel much different.  Months later, I learned that I had hemochromatosis, which was probably responsible for the reason I didnt feel improved.  I actually had an excess of iron in my body from that.  Most people perk up a lot right after the transfusion, I was told.  I was able to have all my chemos on schedule and came out after six rounds of chemo with no evidence of disease.

Last year, seven years later, I had a bad recurrence.  My chemo was different the second time around.  I got the carboplatin again but my oncologist switched the taxol to gemzar.  The gemzar knocked me for a loop.  After the first round of chemo, I was so fatigued I spent a whole day on the sofa.  I reported this at my next visit, so my oncologist decided I needed a smaller dose of gemzar.  He said that gemzar generally causes this side effect much sooner than the taxol does.  My blood levels were generally worse on gemzar all the way through.  I had chemo more often the second time,  then one week off.  A couple of times, I had to wait an extra week to continue because my blood counts were too low (both red and white blood cells). I could've caught an infection, so I wasn't supposed to go out in crowds or be near sick people.  But I got through it and again came out with no evidence of disease.  I did have an allergic reaction to carboplatin on my next to last round, and I had to switch to cisplatin, which gave me no trouble. I again had to have a transfusion of blood part way through, two units this time.  The ironic thing was that my blood counts were lower the second time around, but after the first round of chemo for my second cancer, I didn't feel as short of breath as I had with my first cancer.

The worst thing about chemo for me was losing my hair.  I lost it all less than two weeks of getting my first dose of carboplatin and taxol.  With my cancer recurrence, the change to gemzar meant that I didn't lose all my hair, but a lot fell out.  I was left with a third to a half of my hair, I'd say.  I wore wigs both times, which I found very uncomfortable during the summer weather (both cancers were found about the same time of year).  I also tried scarves, but they would be caught by the wind and fly up in back, exposing the back of my scalp. 

By the way, for my recurrence, I got my anti-nausea med (Emend) in IV form as the pills had gone way up in cost.  I was able to get the IV covered by Medicare part B. 

I hope this information helps.  There are probably as many different reactions to chemo as there are people on this site, some good, some bad.  A lot of people choose to have a Neulasta shot to keep their white blood cell count in order.  I skipped that as I knew someone who'd had a problem with it.  Many people have had bone pain from Neulasta, and a lot of women recommend taking Claritin to help with that. Maybe others will chime in on exactly when to take it, as I think it's before the shot is given on the same day, but I don't recall for certain. 

One thing I noticed is that I was given meds before my chemo was started each time I had chemo, including a steroid and Benadryl.  I usually felt like I'd had a drink or two after I had them. 

Usually, people feel a let-down and fatigue three days after chemo when the steroids start to wear off.  It's normal.

 

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