Mixed Maligant Mullerian Tumour

I've seen it discussed there.

Radiation is undergoing currently. Chemotherapy suggested from next week. 6 course. 

She is stage 1A. 

Fully worried... Hope this is curable. 

cmb said:

Check out the Uterine Board

There are a number of women, myself included, who have MMMT cancer. We typically post on the Uterine board of this site. You may want to search for MMMT or uterine carcinosarcoma on that board to read about the experiences of others with this type of cancer.

Many doctors are now recommending treating this cancer with radiation and chemo since it is very agressive and can come back in the future, even for those with Stage 1A. Hopefully your mother's treatment, plus the surgery, will prevent a recurrence. 

If you'd like, please post how your mother is doing on the Uterine site and if you have any questions about her treatment or side effects. There are also other women with equally agressive cancers who have had the same type of treatment as your mother and we're happy to share what we've learned along the way.

It's very kind of you to take time to encourage and help many. My mom was diagnosed Tuesday.

Have faith said:

Anyone else?

Hi, 

I’m not from the US but I believe hope and positivity have no boundary. My mother,48, was diagnosed with what we thought was endometrial cancer in Feb, 2018. It was last year on this date that she underwent a radical hysterectomy. Being overweight , diabetic  and hypertensive , the surgery was tricky. However her recovery was almost miraculouS. The doctors were happy and as were we. Yet, when the histopath report returned, it was diagnosed as stage 4B of MMT. We had first been advised sandwich therapy of chemo and radio but ended having only six cycles of carboplatin and paclitaxel. Then in July post chemo mom got better and in a PET scan in Sept, she had only one active lymph, which we weren’t sure was malignant. Then in October end, mom started having immense bloating And discomfort.  When we had a CT and a biopsy, it turned out to be ascites and the tumour was back, more aggressively this time, in the omentum. We started a new line of chemo. However 20 days back mom felt an extremely sharp pain in the stomach in the middle of the night. We immediately got to the hospital.  Mom was admitted for 15 days but she has since then stopped feeling hungry. Her food intake is at present down to just about a cup of soup a day. The chemo, which was working well till 20 days back, also had to be postponeD. Internet is often a bad place to look but I found so many stories of women who have defied all laws and emerged survivorS. At this point, that’s all I’m looking for. Knowing others have overcome this gives me the belief that we can overcome it too

I'm so sorry for what your mother has gone through. As she has unfortunately found, uterine carcinosarcoma (MMMT) is an aggressive, unpredictable cancer. And while Paclitaxel/Carboplatin are often used as the first chemo treatment, these drugs do not work in every woman's case.

I'm not sure from your message if your mother's current health crisis was precipitated by the cancer itself or resulted from a reaction to the new chemotherapy drugs she was given. The other drugs given for MMMT are often much harsher on the system than Paclitaxel/Carboplatin. I had both Paclitaxel/Carboplatin, followed by Ifosfamide/Mensa/ Doxorubicin during my front-line treatment. While I didn't feel too bad with Paclitaxel/Carboplatin, I was really affected by the Ifosfamide/Mensa/ Doxorubicin. At first I didn't think I could continue with that treatment, until the doctor and nurses gave me some more supportive medications and fluids to get me through those three months.

Since your mother was diagnosed with MMMT at a younger age than usual for this type of cancer, has she undergone any genomic or genetic testing? There are targeted therapies, including immunotherapy, that may be helpful if she has the type(s) of genes targeted by one of these therapies.

https://www.cancer.gov/about-cancer/treatment/types/targeted-therapies/targeted-therapies-fact-sheet

After my surgery I learned that I have one of the genetic mutations that is responsive to immunotherapy, should my cancer return. But it's important to recognize that these targeted therapies have their own side effects too.

I'm personally only aware of one long-term Stage IVb survivor, but that doesn't mean that there aren't others. I've only been involved with these types of forums since my diagnosis in 2016. And not everyone posts on these types of forums and if they do initially, they don't always continue to post once they are in remission. But regardless of others' success or failures, your mother is a statistic of one, as one of the ladies on the uterine board used to say.

Have faith said:

Dear Cmb

Dear Cmb

Thank you so much. You are absolutely right. I did look up immunotherapy and discussed it with the doctors too. it really helped. 

If you don’t mind me asking, during your second line of chemo, how bad was the week after? Did you also experience untimely constipation and other issues with bowel, flatulence and pain in the stomach. My mother has just had her third chemo and we are on day five todaY. She is experiencing pain in the abdomen and back and constipation too. We are worried it doesn’t turn into something like last time where she had to be admitted for 15 days and completely went on IV.

Thanks

Have faith,

The second set of chemo drugs (Ifosfamide/Mensa/ Doxorubicin) were given to me over three days (Tuesday-Thursday) in the hospital so that the medical staff could make sure I didn't develop any kidney problems from the Ifosfamide. I actually felt fine while I was hospital because they gave me plenty of fluids and steroids. I then gave myself a Neulasta shot on Friday when I was home.

I didn't have the pain that some women have experienced with Neulasta, but I woke up feeling horrible on the Saturday after my first inpatient treatment. I've never had constipation – diarrhea is always my downfall and it was definitely bad during this period.

But the worst was the feeling of extreme fatigue. It wasn't a sleepy sort of tiredness – rather it was a paralyzing lethargy. I could barely stand for more than a few minutes. I had no interest in food and had to force myself to eat. I honestly didn't think I go continue this treatment another three times. This horrible feeling lasted until I had to drag myself into the oncology center for my weekly blood tests the following Tuesday. It was apparent there how debilitated I was and the oncology nurse immediately hooked me up to have some antiemetics and fluids. This did help a lot.

I probably should have gone to the cancer emergency center at my hospital when I felt so bad. But I kept thinking I'd feel better the next day, which didn't happen. However, after learning how I had reacted the first time to the new chemo drugs, the doctor changed up the supportive medicine on the last day of the treatment and had me take some steroids through the weekend. I also went into the oncology center for fluids and antiemetics a couple of times during the week following the inpatient treatment.

It was still tough to get through the next three treatments, but I never felt as bad as I did the first time. I did need a blood transfusion one time in the hospital when my hemoglobin level dropped, but I was able to finish my treatments as originally scheduled and with no delays.

I was feeling generally okay about a month after chemo ended. I did choose to have pelvic radiation too, but that didn't start until about 3 months after chemo ended. The CT scan after chemo didn't show any sign of cancer, but I decided to be proactive and have the radiation done as a preventative measure.

I hope the doctors can devise the right kind of post-treatment support for your mother so that her side effects don't get worse.

If you read posts on the Uterine board, you will find stories of women with Stage !VB cancer who have survived quite a few years beyond their initial diagnosis. None of the current Stage !VB posters have MMMT, but several have equally aggressive grade 3 cancers like UPSC or clear cell. One member actively posting right now, pinky104, is on her second recurrence, but she went 7 years until the first recurrence.

With the newer therapies now available, it is possible for late stage cancer to be treated as a chronic condition in ways that didn't exist years ago.