Uterine Carcinosarcoma (MMMT) - CA Medical Professionals/Resources

Hi TeamYolie, I'm sorry to hear of your mother's diagnosis. I was diagnosed with stage 1b uterine carcinosarcoma in September 2015. After surgery, my frontiine chemo was 6 rounds of Ifosfamide/Mesna/Taxol with 28 external radiation treatments sandwiched between the 3rd and 4th round of chemo. My status has been NED (no evidence of disease) since the end of treatment at the end of May 2016.

Regarding current research, you may want to check out the GCS Project at www.gcsproject.org. It's based out of Mass. General Hospital in Boston. A lot of what you read on the internet (including from the GCS project) can be pretty negative. I encourage you to remain hopeful. There are many survivors out there! If you haven't found it yet, there is also a very active Facebook group for those with MMMT.

Good luck to your mother (and you). Keep us posted on how she is doing. Kim

Hi Team Yolie,

"Personal entertainer"!! I'm laughing over here! I am sorry about the circumstances that brought you to this site, but know that you will find a lot of knowledge, experience and encouragement among the women on this site.

I am 55 (like your mom) and was diagnosed with stage 3 MMMT 4 years ago. I am in the SF Bay Area, and consulted with Huyen Q. Pham MD, who is in Los Angeles and is associated with USC. He has some experience with MMMT/carcinosarcoma and he was wonderful with me. I did not go to his office, but he looked at my labs and spoke with me by phone a couple of times.

Wishing you the best,

jane

I don't have any experience with bowel obstructions, personally. However, I believe there are a few older threads that deal with that topic so you may want to search for those key words. 

In regards to your question about treatment, I ended up getting a total of three opinions on my diagnosis before starting treatment. During the delay, my gyn-onc (Dr. Hector Arango, Clearwater, FL) had a piece of the tumor sent to a company called Helomics to have it tested against an array of different chemo meds. Ifosfamide/Taxol was the one that was most effective (at least, in the petri dish) so that is the combo that was used for front-line (along with external radiation).

There are many who choose to go to a large cancer center for treatment. I could have gone to Moffitt Cancer Center but chose to stay with my local gyn-onc since he is compassionate, has experience treating MMMT and had an infusion room right in his office. 

Of course, everyone must make the treatment decisions that are right for them. I have no regrets about my choices and thank my lucky stars everyday for Dr. Arango and his first-rate oncology nurses. I wish you good luck in helping your mother put together the best treatment team that she can assemble!

I am in Dallas , TX.  I was diagnosed with stage 3c1 MMMT in April 2011. I went to see Dr Lea at UT SOUTHWESTERN. I had 6 carbo/ taxal chemo treatments only. I had no radiation.  I am still here Aug will be 6 years. So far no recurrance.  I  cannot give tips on what diet because I did not chane anything. I lost 30 lbs during chemo but gained it back after. I do not exercise regularly.  I am 61 this year in July. I do take supplements such as tumerric/curcumin, which I l3arned n here helps fight cancer, I do not k ow if it is working but 6 years later I am still here. I have been taking it everyday once I got through with chemo. I take 3 -500mg in the am and 3 in pm.  I credit UTSW cancer center which is a National Cancer Institute recognized hospital in North Texas and Dr. Janythia Lea, my dr.  She was great and I know that she does do consulting on cases.  She is an associate professor at UTSW.  It is a teaching hospital.  Wishing you and your mom the best in this journey.

TeamYolie,

Since you're in San Diego, you may want to look at USC, UCLA or City of Hope for a second opinion. Hoag in Newport Beach also has a large gynecological cancer unit that is well regarded. 

bluedaisy said:

What does MMMT stand for?

What does MMMT stand for?

It is also called Carcinosarcoma of the uterus (also known as malignant mixed Mullerian tumor, MMMT) is a highly aggressive form of uterine cancer.

DrienneB said:

Hi Team Yollie!

Hi Team Yolie,

"Personal entertainer"!! I'm laughing over here! I am sorry about the circumstances that brought you to this site, but know that you will find a lot of knowledge, experience and encouragement among the women on this site.

I am 55 (like your mom) and was diagnosed with stage 3 MMMT 4 years ago. I am in the SF Bay Area, and consulted with Huyen Q. Pham MD, who is in Los Angeles and is associated with USC. He has some experience with MMMT/carcinosarcoma and he was wonderful with me. I did not go to his office, but he looked at my labs and spoke with me by phone a couple of times.

Wishing you the best,

jane

 

Hi DrienneB:

I also live in the SF bay area and am looking for another opinion.  I was referred to a doctor in UCSD but just haven't made the appointment yet.  Can you tell me a little about your experience in arranging for the consultation?  Did you need to provide a "medical packet" of information before he would agree to talk with you?  Did he provide you with new information or just confirm that he thought your oncologist was doing what he would do?  when you say "some experience" is he someone who specializes in MMMT or cancer in general?  Thank you for your help.

KC

I just noticed No Time posted this link back in June. Sorry, I need to read further back before jumping in to comment!