Are there any other MMMT survivors out there?

JoAnnDK said:

thin blood
Rosey.......Only having blood work done every three months (after treatment is over), how does one know if one's blood is thick or thin?

Thin versus thick blood
JoAnn,

The impression I have from Keith Block's book (Life Over Cancer) is that the higher one's platelet count, the thicker the blood; the lower the platelet count, the thinner the blood. Obviously one doesn't want counts so low (under 100) that one will easily bleed--but neither does one want very high platelet counts.

Unless I've misread Block, that was my impression.

Best,
Rosey

JoAnnDK said:

thin blood
Rosey.......Only having blood work done every three months (after treatment is over), how does one know if one's blood is thick or thin?

Thin versus thick blood
JoAnn,

The impression I have from Keith Block's book (Life Over Cancer) is that the higher one's platelet count, the thicker the blood; the lower the platelet count, the thinner the blood. Obviously one doesn't want counts so low (under 100) that one will easily bleed--but neither does one want very high platelet counts.

Unless I've misread Block, that was my impression.

Best,
Rosey

carolenk said:

Avastin is not like the typical chemo
I think when someone uses the term "chemo," it is in reference to the anti-metabolic agents that damage healthy cells along with malignant cells.

Avastin is a monoclonal antibody that falls in the category of "targeted biological therapy." It is an anti-neoangiogenesis agent (supposed to stop the growth of new blood vessels that feed cancer).

I wouldn't consider Avastin to be "chemotherapy" just because it is used to treat cancer.

Impressed by your Decisions


Carolenk,

Read carefully your sequence of chosen treatments since diagnosis of IIIB in 2009; clearly, you've done well.

And should I have a recurrence of my own Stage IB MMMT (60% myometrial invasion but 20 clear pelvic lymph nodes and clear margins) diagnosed a year ago, am not sure I will go the traditional chemo/rad route--for many of the reasons you cite.

In fact, am considering starting intravenous C ASAP--for it's been a month since my last chemo. Used my summer off as a college instructor to pursue some research and saw fascinating studies done by Jeanne Drisko (U of Kansas) re two women with, get this, stage IIIC ovarian cancer who didn't follow oncs' instructions--and DID take antioxidants during chemo, notably Co-Q 10, C, E succinate, carotenes--and AFTER treatment refused further 'consolidation chemo" in favor of intravenous C.

Three years later, they were both NED!

Granted, I don't know whether their cancers were MMMT, or serous, or papillary, but stage IIIC ovarian cancers are rarely NED after three years regardless of what treatment one has chosen. Moreover, I've found that there are affinities between some forms of uterine and ovarian cancers. (As you likely know, there is MMMT of the ovary, not merely the uterus.)

Am sorry to hear your vaginal brachyterapy sessions (six are a LOT) were so hard on you. Indeed, my own radiological onc--although she at first thought I'd have both external and internal radiation treatment--restricted it to external for two reasons:
"Your tumor wasn't that close to your cervix"; "I've designed the external radiation to target your vaginal vault in addition to other targets"; and "I'm finding more and more that vaginal brachytherapy is too toxic for many of my patients." (This is at a center termed by ACS "one of the top ten in America," by the way.) However, should I have a recurrence in vaginal vault, I'll of course blame her for changing her mind on the treatment!

A vital QUESTION: How expensive were your intravenous treatments? How often did you have them? And for how long a period? (I have great med benefits but as you know, they won't cover intravenous C.)

Finally: I had four teeth extracted right before chemo: two, wisdom teeth but two others that happened, coincidentally, to be molars with prior root canals: chronic sources of inflammation. Felt curiously better, more energetic, within a DAY of these extractions and am thinking of sking my dentist to pull any other molar that had a root canal.


Best,
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

Sorry, I got your name wrong in my response!

Dear Madcoast,

Just sent you a response thanking your for this narrative but somehow (chemo brain?), I addressed it "Carolenk" instead of "Madcoast."

Hope you'll see it and respond, nonetheless.

Sorry,
Rosey

carolenk said:

Avastin is not like the typical chemo
I think when someone uses the term "chemo," it is in reference to the anti-metabolic agents that damage healthy cells along with malignant cells.

Avastin is a monoclonal antibody that falls in the category of "targeted biological therapy." It is an anti-neoangiogenesis agent (supposed to stop the growth of new blood vessels that feed cancer).

I wouldn't consider Avastin to be "chemotherapy" just because it is used to treat cancer.

For accuracy sake....
Avastin, in my research IS CONSIDERED chemotherapy. There are many TYPES of chemotherapy. Avastin is a newer targeted therapy, a monoclonal antibody.

I'm not trying to be argumentative but we need to be accurate here.

RoseyR said:

Impressed by your Decisions


Carolenk,

Read carefully your sequence of chosen treatments since diagnosis of IIIB in 2009; clearly, you've done well.

And should I have a recurrence of my own Stage IB MMMT (60% myometrial invasion but 20 clear pelvic lymph nodes and clear margins) diagnosed a year ago, am not sure I will go the traditional chemo/rad route--for many of the reasons you cite.

In fact, am considering starting intravenous C ASAP--for it's been a month since my last chemo. Used my summer off as a college instructor to pursue some research and saw fascinating studies done by Jeanne Drisko (U of Kansas) re two women with, get this, stage IIIC ovarian cancer who didn't follow oncs' instructions--and DID take antioxidants during chemo, notably Co-Q 10, C, E succinate, carotenes--and AFTER treatment refused further 'consolidation chemo" in favor of intravenous C.

Three years later, they were both NED!

Granted, I don't know whether their cancers were MMMT, or serous, or papillary, but stage IIIC ovarian cancers are rarely NED after three years regardless of what treatment one has chosen. Moreover, I've found that there are affinities between some forms of uterine and ovarian cancers. (As you likely know, there is MMMT of the ovary, not merely the uterus.)

Am sorry to hear your vaginal brachyterapy sessions (six are a LOT) were so hard on you. Indeed, my own radiological onc--although she at first thought I'd have both external and internal radiation treatment--restricted it to external for two reasons:
"Your tumor wasn't that close to your cervix"; "I've designed the external radiation to target your vaginal vault in addition to other targets"; and "I'm finding more and more that vaginal brachytherapy is too toxic for many of my patients." (This is at a center termed by ACS "one of the top ten in America," by the way.) However, should I have a recurrence in vaginal vault, I'll of course blame her for changing her mind on the treatment!

A vital QUESTION: How expensive were your intravenous treatments? How often did you have them? And for how long a period? (I have great med benefits but as you know, they won't cover intravenous C.)

Finally: I had four teeth extracted right before chemo: two, wisdom teeth but two others that happened, coincidentally, to be molars with prior root canals: chronic sources of inflammation. Felt curiously better, more energetic, within a DAY of these extractions and am thinking of sking my dentist to pull any other molar that had a root canal.


Best,
Rosey

alternative approaches and costs
when i first started the intensive bio detox program (for a month), i did intravenous L Gluthathione, Alpha Lipoic Acid, and vitamin C (and others) twice a week (taking a total of 2 hours for the infusions). I know return every 2-3 weeks for a day: IVs, oxygen therapy (have actually been considering doing time in a hyperbaric chamber) and 2-3 hours of infrared sauna. The IVs were about $120 a pop
I have a great health insurance policy but it does not pay for anything that does not benefit big pharma (dont get me started on that one)...so it only paid for a wee bit of the bio detox...and a very wee bit of amalgam removal and root canal removals.
If you have an enlightened dentist, you should also ask about 'peridontal legiments' that were left behind if you had pulled wisdom teeth earlier in life. Most dentists just yank the tooth and dont remove that ligament which attaches the tooth to your blood stream...so they are often left to rot at the bottom of the healed over cavity...providing a lovely and continuing cesspool for inflammation. Cancer is inflammation...thats why curcumin (turmeric) works so well...along with other anti inflammation approaches.

I have felt quite a bit of hubris over attaching the 'proud of no chemo' statement...but everything about the cancer industry is so bullish on expensive treatments with limited effectiveness.

If we were in germany or switzerland....our chemo would be custom designed based on both our personal DNA as well as the cancer cell DNA....and then administered while you were in a hyperthermic chamber...since that superheat would cause the cancer cells to agitate and thus the chemo agent would go more directly to those cells and not over your whole body. This specialized approach is just now coming to the US, twenty years later.

daisy366 said:

For accuracy sake....
Avastin, in my research IS CONSIDERED chemotherapy. There are many TYPES of chemotherapy. Avastin is a newer targeted therapy, a monoclonal antibody.

I'm not trying to be argumentative but we need to be accurate here.

avastin
yes...technically avastin is 'chemotherapy'...but as someone else pointed out, it does not kill healthy cells as traditional chemotherapies do so well. And as until quite recently, it was not used except as a last resort...when all the other chemotherapies had ceased to 'work'.
One of the benefits that my onc at the Medical school said about me taking it first...was that he gets to write a paper about 'side effects' that are not exacerbated by a body already ravaged by traditional chemo.

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.

VOD3 said:

Treatment
Hello my mother n law is was diagnosed with MMMT she had a hysterectomy but she has it now outside her uterus... Her Oncologist said it was untreatable but going by what I have read on this forum. Chemo looks to be an option. she had 2 scans in august which showed a growth and then blackening. they then took a scan in Novemeber and it was clearly visible in half her stomach. she was only told 3rd January it does not look good. I am sorry for asking but its hard getting answers on a rare cancer. I am happy you have overcome this cancer too .. regards
Van

Van....
What has been done for your mother-in-law to this point? You mention scans but not what she has gone through to treat it.

Cindy

CindyGSD said:

Van....
What has been done for your mother-in-law to this point? You mention scans but not what she has gone through to treat it.

Cindy

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.