Are there any other MMMT survivors out there?

anissaroelle said:

Hi. I'm 31 years old and last

Hi. I'm 31 years old and last March, I was diagnosed with mmmt. I finished my chemotherapy last July. And I just had a ct scan to check status of tumors. I'm hoping it will joy recur again.  I seem to be one of the youngest to get this kind of tumor, I'm not sure. But I'm reading through all the messages and I can see that there is hope. Thanks.

Sorry you had to join this group and at such a young age.  I look forward to sharing years and years and years of NED with you.

It happened to Me said:

Welcome Anissaroelle

I have been so amazed at how young women are at time of diagnosis.  I'm sorry you have cancer but am very glad that you have joined.  This is a great group who have a wealth of information and this is a very loving, caring group.  You can share anything, good, bad, frustrations, joys etc.  This is one big family to get plenty of cyber hugs.

Jeanette

I would love to see more updates on some of these older posts.  Are there survivors out there still from 2010 and such years?  My mom was diagnosed last September of 2013 and we lost her in July 2014.  She refused more chemo after 7 treatments, she had a lot of pain and since the CA125 were rising again, she got very disappointed, as well as the tumors coming back and many side effects, including diarrhea for months and rapid weight loss.  She was always so strong and never took medications for anything, that I think her body went haywire with it all.  In April or so I noticed a huge change in her spirit when all doctors were telling her to get her affairs together, since her numbers didn't look good and she refused the chemo.  Radiation was not an option since it was Stage IV.  It was all so fast and confusing, we all live in different cities with young children and only one of my sisters was able to travel to take care of her, the rest of us went on long weekends but not longer, since she lived in Canada.  While this was shocking and we can't believe she's gone already, the ascites in her abdomen are what sped the death process.  She ended up skinny as a skeleton when she was a happily voluptous woman always, so that was shocking, to see her deteriorate so fast.  Anyone else go through something similar?  All of you who are still in remission or alive, prayers go out to you all and may you live as long as you hope.  Love and peace!

Grade 3/4 MMT 2007 as posted previously.  I did have 20+ lymph glands removed and have left leg lymphedema but am inclined to think that assisted the NED. 

anissaroelle said:

Hi. I'm 31 years old and last

Hi. I'm 31 years old and last March, I was diagnosed with mmmt. I finished my chemotherapy last July. And I just had a ct scan to check status of tumors. I'm hoping it will joy recur again.  I seem to be one of the youngest to get this kind of tumor, I'm not sure. But I'm reading through all the messages and I can see that there is hope. Thanks.

Although I was 62 at diagnosis, not 31, I urge you to look at my post below and take heart and comfort and hope that you may survivie far longer than you imagined with this disease.

At your age, your immune system is STRONGER than those of us who are sisty!

I would also urge you to read the positive and upbeat book called "Atni-Cancer," by Dr. David S. Scherieber, which is fabulous on how to create an anti-cancer diet.

YOu want to lowe estrogen leels in your body in any way possible, too, so I would Toogle "natural aromatase inhhibiors" to see what foods naturally suppress the excessive strogen that ofen feeds cancers such as MMMT.

Also look into LDN (low-dose naltrexone), which is quite inexpensive; if ou can find an "integrative doctor" in your area, you can get him or her to prescribe it for you at a dose of 4.5 milligrams per nigh: one pill before bedtime.

BE sure that your vitamin D blood level is at least 40 to 50.  If lower, TAKE liquiid form of Vitamin D, 6,000 IU a day until bollod test shows you are up to 50.

I would also read the books "Anti-Cancer" by Dr. dAvid Sergeant Screiber and "KNoeck-OUt" by Suzanne Somers.

I would eat as many vegetables as possible, sepcially crucifers, stir-fried in olive oil or coconut oil, and take curcumin (500 mg three times a dya).  

Gluten-free oatmeal and berries are good for breakfast--rr omelettes with vegigies and herbs.  

A glass or two of red wie from SPAIN can't hurt you as long as you have it with dinner: full of resveratrol, and latest research shows that Spanish red wine lowers estrogen in our bloodstream: always a good thing!

And try to reduce stress of any kind: relax and enjoy life.  It will enhance your hormones and survival.

Love

RoseyR

Songflower said:

Your Search
Could you spell out MMMT. I don't think most of usknow what that means.

Diane

Malignant Mixed Müllerian Tumors  I am still here after 3 years. Marti in AZ USA 

RoseyR said:

DIAGOSED IN 2010 AND STILL WELL AND ALIVE

To provide hope to all diangosed with MMMT (uterine carcinosarcoma), I was diagnosed at age 62 with Stage IB uterine carcinosarcoma in Sepeember, 2010 and after six rouns of taxol/carboplatin and 25 pelvic radiatio sessions at U Penn. am astill alive and feeling very well with no sign of recurrence.

For two years AFTER diagnosis, I was quite careful with my diet--avoiding sugar or artificial seeeteners of any kind, eating only organic meat and cheese, avoidng pasteuriized dairy products, and taking 500 mgs of curcumin three times a day with meals plus 6,000 IU of vitamin D a day.  I also was on LDN (low-dose naltrexone) for the past two years  (taking 4 milligrams a day, one pill each night before bedtime).  I also have taken 20 milligrams of melatonin before bed for the past three years.   Two years ago, consulting with a naturopath named Nasha Winters in Durango, Coloardo, I was also put on a gluten-free diet although I had never had any digestive problems; she insisted that modern wheat products (as well as rye, oats, barley) create inflammmation in the intestines, diveting the immune system form attaching the random cancer cells that after age 50, we ALL have floating about.  Gluten, in short, compromises th immune ystem.

I cannot be sure I am NED because I have refused CT scans since finiishing treatment.  They wanted me to do them eveyr three months but my research showed that frequent CT scans danage the very DNA we need to fight our cancers.  I decided, for better or worse, that I would not scan until, and unless, I were having serious symptoms.  Today, four years since treatment eneded, and nearly five years since diagnosis, I am feeling very  very well and working full time at age 68.

If nothing else, I hope this gives hope to all of you diagnosed with MMMT cancer (uterine carcinosarcoma).

I would also read the books ANti-Cancer by Dr. S. Schreiber and "KnoekOUt" by Suzanne Somers.

Love to ALL!

Rosey R

 

So good to see you still here RoseyR.  I am well into my 3rd year. I had bladder and kidney now left lower lung involment.  I trust my Oncologist and credit him after God for saving my life.  I still see him every 3 months and we discuss the CAT Scan or the PET Scan.  I am fortunate enough to be able to talk to him on his level and I think questions really helps you to help yourself. Marti in AZ

ConnieBH said:

I would love to see more

I would love to see more updates on some of these older posts.  Are there survivors out there still from 2010 and such years?  My mom was diagnosed last September of 2013 and we lost her in July 2014.  She refused more chemo after 7 treatments, she had a lot of pain and since the CA125 were rising again, she got very disappointed, as well as the tumors coming back and many side effects, including diarrhea for months and rapid weight loss.  She was always so strong and never took medications for anything, that I think her body went haywire with it all.  In April or so I noticed a huge change in her spirit when all doctors were telling her to get her affairs together, since her numbers didn't look good and she refused the chemo.  Radiation was not an option since it was Stage IV.  It was all so fast and confusing, we all live in different cities with young children and only one of my sisters was able to travel to take care of her, the rest of us went on long weekends but not longer, since she lived in Canada.  While this was shocking and we can't believe she's gone already, the ascites in her abdomen are what sped the death process.  She ended up skinny as a skeleton when she was a happily voluptous woman always, so that was shocking, to see her deteriorate so fast.  Anyone else go through something similar?  All of you who are still in remission or alive, prayers go out to you all and may you live as long as you hope.  Love and peace!

I was stage 4 also.  Now I am cancer free as fafr as the machines can tell. 

marti968 said:

MMMT meaning

Malignant Mixed Müllerian Tumors  I am still here after 3 years. Marti in AZ USA 

Hello Marty, 

I am so happy to see your posts again. I wanted to ado you did decide to go with treatment ?

my mother 51 years of age is recently diagnosed with mmmt of ovary stage 3c. Its very rare and we are hell scared. She got her debulking surgery done 3 weeks back and we are meeting an oncologist tomorrow morning. Any survivors of this cancer around?

Hilajoan said:

No chemo, no radiation? for Carcinosarcoma/MMMT
I had full hysterectomy in November (2011) and have had no radiation or Chemo - from what I've read I might just as well not! I feel fit as a fiddle - even though I had breast cancer and a mastectomy in March last year (also 2011). The two cancers are unrelated - fortunately. I am in London, England. Hope our doctors and oncs know as much as those in the USA - they should do - they can all read and write! No-one seems to be able to agree on the likelihood of recurrence of the Carcinosarcoma/MMMT. So why should I put myself through the trauma of Chemo and radiation, with probable lasting ill effects when there may be no need, or possibly no effect on the likelihood of prolonging my life. Any views? Joan

i was just diagnosed with carcinosarcoma after less than a month of symptoms. everything has happened so fast.in 2006 i had stage 3 colon cancer and went through radiation and chemo with good results until now. i am scheduled to see specialist on monday to figure out how to progress. i really dont want to use chemo again. anybody out there not get it? they said theyll have to stage it with surgery and will do a total hysterectomy and part of omentum. i am pretty scared.