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Uterine Carcinosarcoma (MMMT) - CA Medical Professionals/Resources

TeamYolie
Posts: 2
Joined: May 2017

Hello,

My mother (54) was diagnosed with stage IV uterine carcinosarcoma in February and has since had a debulking surgery and is receiving ifos/taxol chemotherapy currently. I have recently been aware of how rare and aggressive this disease really is, and if possible, I'd like to contact as many experts as possible for additional opinions. We are based in San Diego, but would like to know what resources or doctors you may recommend that can hopefully assist us. We have access to a gyn oncologist, but I would like to engage with other oncologists, medical researchers if possible. 

Additionally, if you just have good stories or news to tell regarding your situation and a positive outcome from MMMT, I would be happy to learn from you. Please post or feel free to reach out to me. I recently graduated and quit my job to be full-time caretaker, researcher, and personal entertainer for my mom so I am happy to talk to anyyone and explore all resources and contacts. 

Thanks so much!

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

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

janaes
Posts: 783
Joined: May 2016

Hi, I too was diagnosed with  MMT uterine cancer stage 2 grade 3 back in May of 2016.  Im still here and I am glad.  This kind of cancer is uncommon but there are many on this board with this cancer.  There is also a MMT yahoo group that could be helpful. I wish you two the best as you go forward.

Janae

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

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

 

Kcosta617
Posts: 4
Joined: Dec 2017

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

TeamYolie
Posts: 2
Joined: May 2017

Hi Kvdyson, Janaes, and Drienne — thank you for your responses. I’m very happy to read these hopeful notes and so happy to hear you have all had success in battling this disease.

I’ve requested to join the Yahoo group and have just found the Facebook group :) I also had the opportunity to speak with the GCS Project founder, who gave me great advice. 

My gameplan right now is just outreach, outreach, outreach, so if you may know of anyone additional I may contact, I would be so happy to do so. I’ve just requested all of her medical records so I intend to send these out to research hospitals around the US, hoping this will help us. For those with success putting together an all-star treatment team, I’d like to ask if you have any tips: Was it mainly driven by personal research and cold calling? Did your oncologist send these referrals on your behalf? Any particular medical research facilities you reached out to give quick/reliable response times?

Secondly, I'm writing this post the hospital currently as we fear my mom has a bowel obstruction which may delay her treatment plans. Anyone familiar with this problem?

Thank you so much.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

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!

 

janaes
Posts: 783
Joined: May 2016

This was my experience.  I had conflickting responses to my diagnosis after surgery.  One doctor told me I just needed Bracytherapy the other told me I would need chemo and bracytherapy.  Because of the confusion i had my second doctor set up a tomor board to have them look at my cancer.  I ended up doing to a third doctor who and asked for copies of my pathology report and went in to see him with a ton of questions and got my answers.  This support group made a big difference in my desision also.  The wonderful ladies here led me to other sourses and shared with me their experience and knowledge that helped me make my desion to do chomo.  I didnt want to do it but when the desion was made i knew i had to do it.  I now know that i did what i felt right about and dont regret my desision either.  Take the time you guys need to make the desion that is right for the two of you.  Your mother gets to live with the desision and taking that time will help.  It did for me anyways.

txtrisha55's picture
txtrisha55
Posts: 685
Joined: Apr 2011

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.

bluedaisy
Posts: 3
Joined: Jun 2017

What does MMMT stand for?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2616
Joined: Mar 2013

Dear bluedaisy, briefly MMMT stands for Malignant Mixed Mullerian Tumor, but I think this link we tell a lot mor than I could.  

http://gcsproject.org/10-facts-about-mmmt-cancer/

 

txtrisha55's picture
txtrisha55
Posts: 685
Joined: Apr 2011

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

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

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. 

Kcosta617
Posts: 4
Joined: Dec 2017

I'm happy to hear the good news and hopefulness in your posts.  My cancer has metastasized to my bones and I am back in treatment.  Although I trust my oncologist, I know I need to reach out to other medical professionals who have specific experience with this rare form of cancer so I appreciate the specific referrals.  Best wishes to all of you.

 

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Try these folks. Although my cancer isn't MMMT, I get a lot of good information off of their site. http://gcsproject.org/the-gcs-project/

 

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

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

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