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MMMT Uterine Cancer

magicpam's picture
magicpam
Posts: 4
Joined: Mar 2019
magicpam's picture
magicpam
Posts: 4
Joined: Mar 2019

Hi all, I am new to this forum. I was diagnosed with MMMT Uterine Cancer in early November 2018. I had a total hysterectomy on November 29, 2018, removing the uterus, ovaries, fallopian tubes, cervix, and sentinel lymph nodes. Some microscopic tumour cells were found in the left ovary, so was staged at 3A, because none was found in the lymph nodes. I went on vacation in December and unfortunately caught a cold/flu from someone on the plane which delayed my first round of chemo. In the 2 weeks I had, I did a lot of research online and was scared of chemo and radiation, and turned to natural therapies instead. I even went to Sanoviv, a wonderful medical centre in Rosarito, Mexico for 2 weeks of their medical program with some cancer therapies thrown in. My doctor there, Armonia Rodriguez, told me to get a PET scan when I returned home, which I did. Unfortunately, 3 suspicious spots were found, one on the edge of my liver on a lymph node 1.3 cm, One on the anterior peritoneal wall, lower left quadrant 1.1. cm, and one in the sigmoid colon, pre-sacral, no size mentioned. I have been to 3 gyn-oncologists for consultations. I have Kaiser insurance now but that will change when I can no longer work full time. The City of Hope in Duarte, California was the most positive response of any of the doctors I have encountered. I am sure I will undergo Carboplatin/Taxol as soon as my insurance allows, but am concerned from all the "studies" I have found on the internet. Reading some of your stories here has been so helpful to me to have some hope. I have been preparing for my death in terms of checking on my life insurance policy, etc. I am a very healthy 66 years old woman, otherwise, and this cancer seems to me to be caused by 15 years of using Estradiol and Progesterone. I was given estradiol by my doctor, thinking all this time it was bioidentical. Any tips or helpful suggestions are welcomed. Thank you all for contributing your thoughts and experiences.

pinky104
Posts: 574
Joined: Feb 2013

I have to say that for 66 years old, you look awfully darn good!  It will be a shame for you to lose all that beautiful red hair when the tasol does its thing.  I have UPSC, which was originally diagnosed at stage IVb in 2010.  I had carboplatin and taxol for my first 6 rounds of treatment, and I have to say they did more for me than any treatments I've had since.  I had a 7 year remission (and it had started out in the uterus, both ovaries, the omentum, and the small intestine).  In 2017, it decided to come back and wrap itself around my ascending colon, and was also in the peritoneum, retroperitoneum, and rectum. It was also in a muscle in my abdomen, approaching the periosteum of the hip.  Surgery got most of it, and chemo (Gemzar, Carbopplain (which I became allergic to) and then Cisaplatin, which replaced the Carboplatin) seemed to have taken care of the rest.  Nothing showed up in the scans after chemo.  However, it's back again, and apparently never went completely away in the abdominal muscles.  It's also moved on to the transverse colon now.  I started chemo a week and a half ago, this time with Gemzar and Cisplatin again, with the addition of a biologic, Avastin.  The chemo is harder on me this time than it ever was before.  I really had a relatively easy couple of runs with chemo up until this time.

I had a co-worker whose husband was scared of chemo and also went some place in New Mexico.  He only lived a month or two after doing that. I don't have a clue where he went, but I cringe whenever I hear about someone going to New Mexico for treatment now.  He may have been dying anyway, but whomever saw him there certainly didn't prolong his life any.  At least the doctor you saw recommended getting a scan when you got home.  

My half sister had cancer about 15 years ago.  She lived out in San Jose, California, and tried to get Kaiser insurance approval for testing she needed for pains in her legs.  They denied her until it was too late to do anything about it. It turned out she had lymphoma and she passed away a couple of months after learning of her diagnosis.  I personally have excellent coverage thru Medicare and AARP United Healthcare.  I have a Medigap plan. Although my plan F is being eliminated next year, if you can afford to get another one of their Medigap plans, I highly recommend it.  I currently have no copays thru plan F.  The only copays I have are for my drug plan and i have Aetna for that.

I realize I am generalizing way too much about things that happened years ago that may have no relationship whatsever to what is happening with you.  I guess I'm being silly.

I wish you luck with everything.    

MAbound
Posts: 871
Joined: Jun 2016

Your story and experiences matter Pinky. Even if it doesn't necessicarily apply to some, it does to others and no matter how often you and others who post repeat themselves it helps because Lord knows the search engine for this place often doesn't!

zsazsa1
Posts: 344
Joined: Oct 2018

I'm so sorry for what you are going through, Pam.  I have just finished Carbo/Taxol.  I can tell you that for me, it was much less horrible than what I had anticipated.  It was tolerable.  I'm sure you've found the recent thread where some of us gave advice regarding how we got through chemo.

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

I'm so sorry this has happened to you. Thank goodness the doctor in Mexico encouraged you to get the pet scan. You will learn a lot reading old posts here so my advice to you is not to start writing your obituary yet. You have gotten several opinions so now just plow through. 

cmb's picture
cmb
Posts: 377
Joined: Jan 2018

Welcome to the site, although I'm sorry for reason that brought you here. I have MMMT (uterine carcinosarcoma) also. I know how shocking it can be to hear that you not only have cancer, but a rare and aggressive kind.

I was diagnosed in November 2016, followed by surgery, chemo and external radiation. I was staged as IIIB. You can read the details of my treatment by clicking on my user name under my picture. You'll read that I had four different chemo drugs as part of my front-line treatment. This was planned from the beginning, although most women have 6 cycles of Paclitaxel and Carboplatin.

I only regret not keeping my hands and feet cold during chemo as I was left with mild neuropathy in my feet. You can search older messages here about the "icing" methods other women have used. Otherwise, I have no residual effects from the chemo or external radiation.

It's good that you had the PET scan so that your doctor(s) can plan the right course of treatment. And seeking multiple opinions is always a good idea when dealing with a more rare cancer type.

While there are only a few women with MMMT who are actively posting on the uterine board right now, there are many women who have other, equally aggressive forms of uterine cancer such as UPSC and clear cell. Treatment for these grade 3 cancers tends to be similar, so many of the posts on this site will be helpful to you as well.

There is a Yahoo group that is specifically for MMMT. Unfortunately there isn't a lot of activity on that site right now. But you can search and read older messages. You need to send a request to join the site at: https://groups.yahoo.com/neo/groups/UterineMMMT/info

While the statistics you read online can be discouraging, it's important to know that there are long-term survivors of MMMT, especially as new treatments become available.

mlshep
Posts: 6
Joined: Mar 2019

 

New

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

CheeseQueen57's picture
CheeseQueen57
Posts: 814
Joined: Feb 2016

My doctor didn’t suggest until I reoccurred. My insurance did not pay for it. Aetna. But they do have a payment plan if your insurance won’t pay. I appealed to the highest levels but Aetna would not pay. 

mlshep
Posts: 6
Joined: Mar 2019

CheeseQueen57, thanks for your response, I also have Aetna insurance, and didn’t think they would pay for the treatment. So, did you end up getting their treatment?

Primary

CheeseQueen57's picture
CheeseQueen57
Posts: 814
Joined: Feb 2016

I got the testing because we all assumed my insurance would pay. You might want to call Aetna and specifically ask if they cover it. They might have changed their policy. I had the test in 2017. There was nothing actionable that showed up from the tumor testing at that time but that is changing every day. Plus tumors change. It might be wise to wait until you have a reoccurrence (which hopefully never happens for you) to worry about this type of testing. I wish you continued good health. 

Jairoldi's picture
Jairoldi
Posts: 214
Joined: May 2017

My Dr. Also recommended testing at recurrence, if it recurs, as the tumor could change. I had a different genetic test that would only cost $500 if the insurance wouldn't pay.

cmb's picture
cmb
Posts: 377
Joined: Jan 2018

My tumor was tested for Lynch Syndrome as part of my hysterectomy. I didn't know this test was being done until I got the post-surgery pathology report that showed a mutation indicating that I may have Lynch. I then had genetic testing to determine if this mutation was caused by my inheriting the mutation for Lynch or if it was a spontaneous mutation in the tumor itself.

It turns out that I do have Lynch Syndrome. Although both my parents had cancer, neither fit the typical "profile" for Lynch Syndrome. My mother had cervical cancer (not considered a hereditary cancer) and my father's colon cancer wasn't diagnosed until he was in his 80s – long after the usual age at diagnosis for Lynch.

My insurer did initially refuse to cover the cost of the genetic testing to confirm that I had Lynch since I didn't meet the "usual" family history criteria. However, I appealed and they finally agreed to pay.

I was not tested for any other mutations/indicators besides Lynch. I have not recurred so far, but if I did, I would ask to have genomic testing on the tumor.

magicpam's picture
magicpam
Posts: 4
Joined: Mar 2019

Thank you, ladies, for your responses. I had a little password trouble logging on, so didn't try again for a while. I started Chemotherapy May 1, 2019 Carboplatin/Taxol at CTCA (Cancer Treatment Centers of America) in Goodyear, AZ. I live in Los Angeles so fly there every 3 weeks, CTCA pays for my flight. It isn't as bad as I expected, side effects so far have been minimal, the worst being joint pain. I have had 2 treatment thus far. I now take CBD oil for pain, along with "releaf balm", also rub frankincense & myrrh essential oil on my abdomen at night.  My original diagnosis came in November, 2018 and had the total hysterecomy Nov. 29, 2018. I went to a natural clinic in Mexico called Sanoviv for 2 weeks, but the PET scan in March 2019 showed 3 small (1 cm) spots in my liver, sigmoid colon and peritoneal lining. A CT scan in May, 2019 showed one of the spots doubled, but didn't mention the other 2 spots. There isn't much current info out there to give me hope. I was hoping this site would have some others who have survived longer than 2 years with this rare and aggressive cancer. I am fortunate that CTCA has a Naturopath, Nutritionist,Chiropractor and Acupuncturist available to help me stay as healthy as possible during treatment. 

 

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

I am an 8 year survivor of MMMT uterine cancer.   Diagnosis of Stage III C1 MMMT (carcinoma sarcoma 1A tumor in Uterus,  2 microscopic cells 1 lymph node) High Grade 3 cancer  so upgraded to stage 3c1.  Dr. Jayanthi Lea, a gynecologic oncologist at the Harold C. Simmons Comprehensive Cancer Center on the North Campus of UT Southwestern Medical Center., Dallas, TX.  Wonderful doctor then and now.  had a total abdominal hysterectomy with the uterus, tubes, ovaries, cervix removed including the Omentum.  Chemotherapy treatment with Carboplatin / Paclitaxel on May 6, for 6 treatments every 21 days.  Last one was 22 Aug 2011.  No Radiation.  I still go to see Dr Lea every year.  I have not had a recurrance (yet).  So it is doable to survive more than 2 years.  Wishing all the good luck on your journey.  Sorry you had to find us but glad you did.  This is a great group of ladies on this site.  trish

cmb's picture
cmb
Posts: 377
Joined: Jan 2018

While I don't consider myself a "long-term" MMMT survivor as yet since I was only diagnosed in November, 2016 (although I'm still NED), there are long-term survivors on this site and the Yahoo Group site that I mentioned in an earlier post above. One of the members on this site, txtrisha55, just posted an update at https://csn.cancer.org/node/319789, She has never recurred since her original treatment almost eight years ago.

An even more remarkable story is from a member I've mentioned in earlier posts, but her story bears repeating. You may want to read the profile of apoohneicie at https://csn.cancer.org/user/232818. She was diagnosed just before turning 31 with stage IV uterine carcinosarcoma (MMMT). Survival prospects for Stage IV patients with this cancer have historically been very grim.

However, she persevered with the treatment her doctors prescribed. And while she doesn't post to this site or the MMMT Yahoo site any longer, she is still alive at 42 and doing well. You can see her earlier posts on Twitter at https://twitter.com/apoohneicie and her later posts at https://twitter.com/morphisa.

From participating in this site and the Yahoo group, I've also learned that some women can survive many years with their cancer being treated as a type of chronic disease, changing chemo drugs or using one or more targeted therapies as their bodies develop a resistance to one type of treatment. One woman on the Yahoo site survived almost 10 years after her stage IVB MMMT diagnosis. She was never NED, but was on various forms of chemo and other therapies after her diagnosis. She mentioned once that she had been on eight or nine different regimens. Except for the few months of her initial treatment, she continued to work and lead her life as fully as she was able.

And new therapies can be game changers for certain women. My mother struggled with cervical cancer for several years, undergoing a variety of chemo drugs and surgeries. Then her doctor tried a newly approved chemo drug, which put her in remission for the remainder of her life. Sometimes we just need to persevere until something new comes along.

Ladyhawkrobin's picture
Ladyhawkrobin
Posts: 1
Joined: Jun 2019

It's wonderful to hear of at least a few long term survivors. I'm almost 50, and have had my hysterectomy, in which they also removed my appendix and part of my bladder on the outside, as well as the involved lymph node on my left side. I start chemo in a few days with Gemzar and Tax...whatever it is. My first grandbaby is 4 mos. and there will be more one day. I'm so afraid and accepting the diagnosis of Stage 4a has not been easy. I will never look at survival rates again, and will fight for all I'm worth. Would love to share stories and make friends to go through this with. This is my first post.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2593
Joined: Mar 2013

Ladyhawkrobin, love your attitude.  Please don't hesitate to let us know if you have questions or ever need to vent.  

Thank you, cmb.  We all need to hear those stories.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

Welcome Ladyhawkrobin. So sorry you need to be here but glad you found us. You are among a bunch of ladies that truly understand what you are going through. Please feel free to ask us anything. Someone has most likely been there, done that. There are a couple of older threads that you may find helpful.....  'Ladies going through chemo' and 'Let's talk about radiation'. I am one of several back in 2015 that documented our experience as we progressed through the treatments. There is hope! You will find out that you are incredibly strong and will get through this. 

Love and Hugs,

Cindi

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

Grandchildren are a highly motivational factor in giving everything you've got to fighting your way through this. Although my cancer was diagnosed earlier than yours, I wondered if I'd be around to watch mine grow up. It's been over 7 years now and they are 15 and almost 11. Although they don't live nearby, I've enjoyed every minute I've spent with them and hope I am giving them memories only a grandparent can give. i wish the same for you. Cuddle that 4 month old every chance you get. There is something therapeutic about holding a baby. 

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Ladyjawkeobin welcome to our group . We know it’s a tough place to be, but we are all here for you! Hug that grand baby and prayers that you can keep that beautiful spirit.

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

i see neither of you have signed on for awhile. Hope things are going well

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