Are there any other MMMT survivors out there?

Sasha413 said:

Best treatment
Our family just found out last Friday that my mom has MMMT, she is 55yrs old. All I heard was it's an aggressive cancer and panicked.
Finding this site, with woman in similar cases and still fighting and keeping strong is so much help to us all. I will keep track of her progress and update information as best I can.
Also, wanted to know where is the best place to get this rare cancer treated? I've heard MD Anderson Cancer Center in TX have treated more patients with this particular diagnosis than anywhere else in USA. Please post for hospital recommendations. Thank you.

Sasha413 said:

Best treatment
Our family just found out last Friday that my mom has MMMT, she is 55yrs old. All I heard was it's an aggressive cancer and panicked.
Finding this site, with woman in similar cases and still fighting and keeping strong is so much help to us all. I will keep track of her progress and update information as best I can.
Also, wanted to know where is the best place to get this rare cancer treated? I've heard MD Anderson Cancer Center in TX have treated more patients with this particular diagnosis than anywhere else in USA. Please post for hospital recommendations. Thank you.

RoseyR said:

Foods that you LIMIT?


Diane,

Scrolling back through these posts, saw this message again. You say you "havn't limited what I eat other than those I mentioned before."

Can you let us know what foods you've limited? (I can't find the answer in prior posts and your long remission from this cancer i'm sure inspires many. So we'd love to know what foods you've limited. I assume you can't eat raw fruits and vegetables now?

Thanks,
Rosey

madcoast said:

Living with and 'surviving' MMMT
i was diagnosed with stage IIIa uterine carcinosarcoma after an hysterectomy in Jan 2009: I was 59, in good health with healthy habits and no previous serious illness.

Although my pelvic wash was positive and deep endometrial invasion but my lymph nodes were clean. My surgeon recommended intensive chemo cocktail and full pelvic radiation. But the metaphor of 'waging war on cancer' did not resonate at all with me. A month later, I traveled from Charleston SC where I live to Boston. Went to Dana Farber, had my pathology re read and had a consult: the next day, i did a group consult at Mass General where I heard a suggested treatment plan that i was willing to try as well as the name of an oncologist at the medical university down the street from my house.

At the advice of my environmental doctor, I began taking turmeric and other anti inflammatories (cancer is inflammation), upped my dosage of CoQ10, EFAs,A,D,E and several chelators and L Glutathione (all folks with cancer have low levels) and LDN (google LDN: it is the secret to success and costs only $20 per month). I had all my dental amalgams replaced with ceramic fillings and I pulled out my root canals.

Four months later after I had healed sufficiently, I began 6 treatments of Avastin, nothing else. My oncologist does not believe in scans, just physical exams (in front of a group of medical residents)--which is good because there is a growing body of data to suggest that frequent scans just facilitate distant metatasis.

In the fall/winter of 10, I had a 'local recurrence' in the upper vaginal area: my oncologist thought it was pre existing (before the surgery) and just had 'matured' enough to be visually seen by my oncologist although the radiologist was impressed that he had even seen it. I did consent to 6 sessions of brachytherapy radiation although I had very severe side effects.

And during the winter of 11, I did a 4 week intensive bio detox program which consisted of oxygen and IV therapy for 2 hours every day, 120 ounces of alkaline water, more chelators, and 3-4 hours a day of infrared sauna. I also was walking or exercising 40-60 minutes a day.

I do green drinks, take lots of supplements, dramatically limit my intakes of sugars(no corn syrup at all), eat lots of colorful fruits and vegetables, exercise and stretch regularly (check out www. stretchingusa.com)....as well as maintain a very full professional schedule.
I have invested alot of time of learning about 'how to live successfully with cancer (cause we all have it even if it is much less active at any one time)...and discovering what makes good cells go bad...and reducing those things that stimulate good cells going bad.

There is alot of very creative approaches coming out of the EU and China. And the US protocols have not significantly advanced in the last 50 years.

My original oncologist threatened me and told me that I would be dead within a year if I did not do exactly as he said. And it has been nearly 3 years with no evidence of metatasis.

NED without chemo and proud of it

madcoast said:

Living with and 'surviving' MMMT
i was diagnosed with stage IIIa uterine carcinosarcoma after an hysterectomy in Jan 2009: I was 59, in good health with healthy habits and no previous serious illness.

Although my pelvic wash was positive and deep endometrial invasion but my lymph nodes were clean. My surgeon recommended intensive chemo cocktail and full pelvic radiation. But the metaphor of 'waging war on cancer' did not resonate at all with me. A month later, I traveled from Charleston SC where I live to Boston. Went to Dana Farber, had my pathology re read and had a consult: the next day, i did a group consult at Mass General where I heard a suggested treatment plan that i was willing to try as well as the name of an oncologist at the medical university down the street from my house.

At the advice of my environmental doctor, I began taking turmeric and other anti inflammatories (cancer is inflammation), upped my dosage of CoQ10, EFAs,A,D,E and several chelators and L Glutathione (all folks with cancer have low levels) and LDN (google LDN: it is the secret to success and costs only $20 per month). I had all my dental amalgams replaced with ceramic fillings and I pulled out my root canals.

Four months later after I had healed sufficiently, I began 6 treatments of Avastin, nothing else. My oncologist does not believe in scans, just physical exams (in front of a group of medical residents)--which is good because there is a growing body of data to suggest that frequent scans just facilitate distant metatasis.

In the fall/winter of 10, I had a 'local recurrence' in the upper vaginal area: my oncologist thought it was pre existing (before the surgery) and just had 'matured' enough to be visually seen by my oncologist although the radiologist was impressed that he had even seen it. I did consent to 6 sessions of brachytherapy radiation although I had very severe side effects.

And during the winter of 11, I did a 4 week intensive bio detox program which consisted of oxygen and IV therapy for 2 hours every day, 120 ounces of alkaline water, more chelators, and 3-4 hours a day of infrared sauna. I also was walking or exercising 40-60 minutes a day.

I do green drinks, take lots of supplements, dramatically limit my intakes of sugars(no corn syrup at all), eat lots of colorful fruits and vegetables, exercise and stretch regularly (check out www. stretchingusa.com)....as well as maintain a very full professional schedule.
I have invested alot of time of learning about 'how to live successfully with cancer (cause we all have it even if it is much less active at any one time)...and discovering what makes good cells go bad...and reducing those things that stimulate good cells going bad.

There is alot of very creative approaches coming out of the EU and China. And the US protocols have not significantly advanced in the last 50 years.

My original oncologist threatened me and told me that I would be dead within a year if I did not do exactly as he said. And it has been nearly 3 years with no evidence of metatasis.

NED without chemo and proud of it

RoseyR said:

Treatment Centers

Dear Sasha,

Yes MD Anderson is a premiere place for treatment. Other good centers include Sloan Kettering, Johns Hopkins, and Massachusetts General--although if I could choose where to be treated (after surgery), it would the Keith Block Center in Illinois, right outside Chicago. If you read his book Life Against Cancer, you will see what advanced forms of chemo he uses and how holistic the treatment is. I often wonder if CTCA (Cancer Treatment Centers of America) would be a good option given their own holistic approach to treatment, with a team of doctors working together on treatment, supplements, nutrition, and the emotional aspects of the disease.

I would also recommend finding a good "integrative" doctor (an M.D. who knows how to treat cancer holistically and how to use supplements to make treatment less painful and perhaps more effective. I have sent my own prescribed protocol for supplements during taxol/carboplatin to a few others; if you're interested, let me know by emailing me at the top left of our site and I'll be happy to share with you. (I am one year out of treatment and feeling great after 6 rounds of chemo and 25 pelvic radiation sessions. Other than losing my hair, I had no side effects from treatment although my blood counts did fall after the fourth round of chemo, causing one delayed treatment. But no nausea, no loss of appetite, no aches or pains, no neuropathy, not even fatigue during treatment--although I was a bit tired when it was all over as my hemoglobin was low.

Best,
Rosey

JMoses said:

support
Kris,
My 70 year old mother was diagnosed this past Mother's day. I just sent you a message to add me as a friend. I posted here almost immediately. I can give you more details off line.
Julia

Fayard said:

Did your mom had her
Did your mom had her surgery?
What was the outcome? stage, grade?

Best regards

Fayard said:

Keep us posted, please.

Keep us posted, please.

Ok.

ghee56 said:

mmmt survivors
I was diagnosed with 1c MMMT in March 2004. Had a complete hysterectomy and internal plus external radiation. Still here. Watch my diet and excercise daily. Still worry...lots of small scares, but hanging in there. Would love to hear from other long term survivors. All of you out there...keep at it. I did get a diet from a book called What to Eat when You Have Cancer....stuck to this for the first 18 months after...think it helped.