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Are there any other MMMT survivors out there?

1975goatgirl
Posts: 1
Joined: Nov 2009

I am a 34 yr old woman who was diagnosed with stage 4B uterine MMMT. Mine had metastasized to my omentum, colon, appendix and most of my pelvic and abdominal lymph nodes. I am 3.5 years in remission. I would love to hear from other survivors. I know this is a very uncommon cancer in relation to most uterine cancers. I've never talked to anyone else with it.

My email is kisses4fluffies@yahoo.com

Thank you,

Carrie

RoseyR
Posts: 464
Joined: Feb 2011

Kimberlite,

Will now try to research this trial and new drug. Have you heard promising things about it?

Rosey

RoseyR
Posts: 464
Joined: Feb 2011

Kimberlite,

Will now try to research this trial and new drug. Have you heard promising things about it?

Rosey

bkramer0412
Posts: 4
Joined: Sep 2011

I did 2 28 day cycles with this clinical trial after witch my CT should increased Lymph node activity as well as growth of the tumor in my liver and a new spot. They are now suggesting a clinical trial of Ixabepilone Phase II.
I had 9 rounds of Carboplatin and Taxol. Which shrunk the tumors and put lymph nodes into remission. But at the end of 9 the tumors were once again active so that is when I went to the Panzopanib.
Will be anxious to know how this worked for you
bkramer0412

JoAnnDK
Posts: 276
Joined: Jun 2011

Rosey, have you continued taking any of the supplements you listed above, now that you have finished chemo? If so, which ones and in which dosage?

Is your integrative medicine doctor at Penn or elsewhere?

thanks
JOANN

RoseyR
Posts: 464
Joined: Feb 2011

Dear JOANN,

Having just finished treatment (for at least a year or two, let's hope!), including three rounds of taxol/carbo, 25 external pelvic radiation treatments, and three more sessions of taxol/carbo, I continue to take the following:

ProGreens (one scoop in glass of water before breakfast)
multivitamin (Formula 950, without copper or iron), two a day
curcumin (brand is SuperBiocurcumin, highly absorbable, by Life Extension, 2 capsules with meals each day)
sylibin (derivative of milk thistle that protects liver), two a day with meals

I WOULD have continued, as well, with the following but my platelets dropped so low at end of treatment that couldn't risk any more bloodthinning supplements:

3 tsps of "Finest Pure Fish Oil" a day after meals by Pharmax
200-400 mgs a day of dry Vitamin E (vitamin E succinate)
astragalus (esp good when your neutrophils are low; helps to ward off infections; also helps chemo to be more effective),
2 capsules twice or three times a day between meals, brand is GAIA (60 caps per bottle)

All were prescribed by my integrative physician, Dr. Stephen Rosenzweig in Philadelphia.

NO way my onc would have approved; like most American oncologists, she told me "NO supplements but a multivitamin." Nine months of my own research and Rosenzweig's advice (MD from U Penn who studied in Eastern Europe afterwards for six years) persuaded me that supps ARE the way to go.

But hadn't realized, when platelets were falling, that fish ol and E tend to thin the blood a bit--so I cut back on them during my last round of chemo. (In effect, all my dietary habits--lots of green tea, blueberries each morning in oatmeal, little red meat, lots of garlic, ginger, curcumin--ALL have a blood thinning effect--equivalent to fewer platelets. According to Dr. Keith Block, thin blood is exactly what you WANT if you have cancer because "thick blood" (dense platelets) encourages metastasis. But when your platelets fell as low as mine, you risk bleeding a bit--so I recently cut out blood-thinning supps except for curcumin, which I'm convinced is essential to stopping the capacity of taxol to CAUSE metastasis.

I'm due to see my integrative doctor in ten days and recall his advising that when I'm done treatment, he wants to boost the antioxidants (C, E, etc). Am even considering intravenous Vitamin C if I can afford a few treatments, for have read of several patients of Dr. Jeanne Drisko with ovarian cancer, stage 3C, who took vitamins similar to the ones I've been taking during chemo and afterwards had a lot of intravenous C--and three years later, are NED!!! (Major studies are going on to examine the role of antioxidants during treatment for gynecological cancers but in the meantime I prefer to TRY to use them.

Please refresh my memory on your own diagnosis. And do you leave near Phila? If so, and would like to meet for lunch sometime, let me know. Did nine months of my own research on rare uterine cancers because I have great medical leave where I work. During recovery from hysterectomy and subsequent treatment I read, read, read. And kept notes.

Warmly,
Rosey

RoseyR
Posts: 464
Joined: Feb 2011

Dear JOANN,

Having just finished treatment (for at least a year or two, let's hope!), including three rounds of taxol/carbo, 25 external pelvic radiation treatments, and three more sessions of taxol/carbo, I continue to take the following:

ProGreens (one scoop in glass of water before breakfast)
multivitamin (Formula 950, without copper or iron), two a day
curcumin (brand is SuperBiocurcumin, highly absorbable, by Life Extension, 2 capsules with meals each day)
sylibin (derivative of milk thistle that protects liver), two a day with meals

I WOULD have continued, as well, with the following but my platelets dropped so low at end of treatment that couldn't risk any more bloodthinning supplements:

3 tsps of "Finest Pure Fish Oil" a day after meals by Pharmax
200-400 mgs a day of dry Vitamin E (vitamin E succinate)
astragalus (esp good when your neutrophils are low; helps to ward off infections; also helps chemo to be more effective),
2 capsules twice or three times a day between meals, brand is GAIA (60 caps per bottle)

All were prescribed by my integrative physician, Dr. Stephen Rosenzweig in Philadelphia.

NO way my onc would have approved; like most American oncologists, she told me "NO supplements but a multivitamin." Nine months of my own research and Rosenzweig's advice (MD from U Penn who studied in Eastern Europe afterwards for six years) persuaded me that supps ARE the way to go.

But hadn't realized, when platelets were falling, that fish ol and E tend to thin the blood a bit--so I cut back on them during my last round of chemo. (In effect, all my dietary habits--lots of green tea, blueberries each morning in oatmeal, little red meat, lots of garlic, ginger, curcumin--ALL have a blood thinning effect--equivalent to fewer platelets. According to Dr. Keith Block, thin blood is exactly what you WANT if you have cancer because "thick blood" (dense platelets) encourages metastasis. But when your platelets fell as low as mine, you risk bleeding a bit--so I recently cut out blood-thinning supps except for curcumin, which I'm convinced is essential to stopping the capacity of taxol to CAUSE metastasis.

I'm due to see my integrative doctor in ten days and recall his advising that when I'm done treatment, he wants to boost the antioxidants (C, E, etc). Am even considering intravenous Vitamin C if I can afford a few treatments, for have read of several patients of Dr. Jeanne Drisko with ovarian cancer, stage 3C, who took vitamins similar to the ones I've been taking during chemo and afterwards had a lot of intravenous C--and three years later, are NED!!! (Major studies are going on to examine the role of antioxidants during treatment for gynecological cancers but in the meantime I prefer to TRY to use them.

Please refresh my memory on your own diagnosis. And do you leave near Phila? If so, and would like to meet for lunch sometime, let me know. Did nine months of my own research on rare uterine cancers because I have great medical leave where I work. During recovery from hysterectomy and subsequent treatment I read, read, read. And kept notes.

Warmly,
Rosey

JoAnnDK
Posts: 276
Joined: Jun 2011

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?

RoseyR
Posts: 464
Joined: Feb 2011

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

RoseyR
Posts: 464
Joined: Feb 2011

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

RoseyR
Posts: 464
Joined: Feb 2011

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

RoseyR
Posts: 464
Joined: Feb 2011

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

kimberlite
Posts: 5
Joined: Aug 2011

sorry it didn't work for you.
howlong ago did you use this drug and at what hospital?
thanks
eric

bkramer0412
Posts: 4
Joined: Sep 2011

I was on the drug for two twenty eight day cycles. I had no side effects. However my rumors became more active. I was in phase 2 of the clinical trial at Dr Sharma's office in Hinsdale, IL. I begin a new clinical trial the 28th of September. Barb

bkramer0412
Posts: 4
Joined: Sep 2011

I was on the drug for two twenty eight day cycles. I had no side effects. However my tumors became more active. I was in phase 2 of the clinical trial at Dr Sharma's office in Hinsdale, IL. I was on the drug August and July of 2011. I begin a new clinical trial the 28th of September. Barb

kimberlite
Posts: 5
Joined: Aug 2011

sorry it didn't work for you.
howlong ago did you use this drug and at what hospital?
thanks
eric

madcoast
Posts: 9
Joined: Apr 2011

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

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Madcoast,

Thanks for the info and glad you are NED. You signed off "NED without chemo and proud" - however Avastin is on my list of chemotherapy agents. I'm confused. Mary Ann

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

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.

RoseyR
Posts: 464
Joined: Feb 2011

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

california_artist
Posts: 850
Joined: Jan 2009

I've read of the correlation between root canals and cancer. amalgam fillings are also of grave cause for concern. Better fewer teeth than mostly dead, eh?

Like your style of writing.

claudia

madcoast
Posts: 9
Joined: Apr 2011

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's picture
daisy366
Posts: 1493
Joined: Mar 2009

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.

madcoast
Posts: 9
Joined: Apr 2011

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.

madcoast
Posts: 9
Joined: Apr 2011

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.

madcoast
Posts: 9
Joined: Apr 2011

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.

madcoast
Posts: 9
Joined: Apr 2011

your statement re avastin is true: it does not damage healthy cells....
when the folks at Mass General suggested avastin< i jumped at that option

RoseyR
Posts: 464
Joined: Feb 2011

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

RoseyR
Posts: 464
Joined: Feb 2011

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

RoseyR
Posts: 464
Joined: Feb 2011

Dear "Madcoast,"

Haven't seen you on the boards for some time so hope you are still well.

In the meantime, some of us would love to know who your environmental doctor is as he/she seems to have made such great suggestions.

Am also amazed that you did "three to four hours a day of infrared sauna" as I've read elsewhere, and often, that one hour is the max any of us should do. Am having a hard time FINDING an infrared sauna even in center city Philadelpia.

Best,
Rosey

RoseyR
Posts: 464
Joined: Feb 2011

Dear "Madcoast,"

Haven't seen you on the boards for some time so hope you are still well.

In the meantime, some of us would love to know who your environmental doctor is as he/she seems to have made such great suggestions.

Am also amazed that you did "three to four hours a day of infrared sauna" as I've read elsewhere, and often, that one hour is the max any of us should do. Am having a hard time FINDING an infrared sauna even in center city Philadelpia.

Best,
Rosey

RoseyR
Posts: 464
Joined: Feb 2011

Dear "Madcoast,"

Haven't seen you on the boards for some time so hope you are still well.

In the meantime, some of us would love to know who your environmental doctor is as he/she seems to have made such great suggestions.

Am also amazed that you did "three to four hours a day of infrared sauna" as I've read elsewhere, and often, that one hour is the max any of us should do. Am having a hard time FINDING an infrared sauna even in center city Philadelpia.

Best,
Rosey

ghee56
Posts: 3
Joined: Oct 2011

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.

RoseyR
Posts: 464
Joined: Feb 2011

Dear Ghee 56,

Scrolling bac through these messages was so impressed to see you're still well nearly eight years (is that RIGHT?) after diagnosis.

Wow!

Where were you treated, I wonder?

And on the whole, what kind of diet have you been on for past five years? (Just the basics--are you vegetarian? do you eat any dairy or meat? no sugar, I assume.)

And what kind of exercise have you been doing per week or day?

I think your answers would be helpful to all of us coping with this diagnosis!

Appreciatively,
Rosey

RoseyR
Posts: 464
Joined: Feb 2011

Dear Ghee 56,

Scrolling bac through these messages was so impressed to see you're still well nearly eight years (is that RIGHT?) after diagnosis.

Wow!

Where were you treated, I wonder?

And on the whole, what kind of diet have you been on for past five years? (Just the basics--are you vegetarian? do you eat any dairy or meat? no sugar, I assume.)

And what kind of exercise have you been doing per week or day?

I think your answers would be helpful to all of us coping with this diagnosis!

Appreciatively,
Rosey

RoseyR
Posts: 464
Joined: Feb 2011

Dear Ghee 56,

Scrolling bac through these messages was so impressed to see you're still well seven years (is that RIGHT?) after diagnosis.

Wow!

Where were you treated, I wonder?

And what kind of diet have you been on for past five years? (Just the basics--are you vegetarian? do you eat any dairy or meat? no sugar, I assume.)

And what kind of exercise have you been doing per week or day?

I think your answers would be helpful to all of us coping with this diagnosis!

Appreciatively,
Rosey

VOD3
Posts: 1
Joined: Feb 2012

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

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

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

Sasha413
Posts: 1
Joined: Jun 2012

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.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Welcome!! Sorry to read about your mom's diagnosis, but know the group of women on this site are very helpful...we're a team!!!

I was 53 years when diagnosed with MMMT at stage 3C, having gone to 1 lymph node, but no where else...yeah! Tell me has your mom had hysterectomy as to how they know it's MMMT...found anywhere else? This is generally how they stage us, using pathology.

Might I suggest looking for a doctor who's knowledgeable with this type cancer, vs looking at a hospital. Have no clue about MD Anderson but if you found it to be best place for this cancer, now search for the best doc --- want an OB oncologist. What type doc does your mom have today?

You'll receive some other good responses from the gals, so hang on.

Best to you and your mom.....

Hugs,
Jan

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Oopsie....button gone wild!

RoseyR
Posts: 464
Joined: Feb 2011

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

RoseyR
Posts: 464
Joined: Feb 2011

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

RoseyR
Posts: 464
Joined: Feb 2011

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

Clouth
Posts: 10
Joined: Jul 2012

Hi Rosey and everyone,
My mom got diagnosed with carcinosarcoma last week. Her pet scan showed it confined to the uterus, but we won't know the stage until after surgery as you all know. I did search online and, wow, depressing. Good to see happier stories here.

She is 77 and otherwise in pretty good health. I am her primary caregiver. I am 42 with 3 kids ages 12, 10, and 7 . She wii probably move in with us now. I am nervous about everything. I have my moments of calm and panic. She usually panics but has been so brave so far, I am so proud of her.

We are going to dr. Baruta at mass general. He is the director of the gyn- onc dept. He seems good, I hope so.

Hope to get in touch with some of you! I did sign up at the yahoo group too. I am an Internet researcher for better or worse, but will have to limit it because it is too much. I am grateful and hopeful though that my mom will not get online with this!

kris

Clouth
Posts: 10
Joined: Jul 2012

Hi Rosey and everyone,
My mom got diagnosed with carcinosarcoma last week. Her pet scan showed it confined to the uterus, but we won't know the stage until after surgery as you all know. I did search online and, wow, depressing. Good to see happier stories here.

She is 77 and otherwise in pretty good health. I am her primary caregiver. I am 42 with 3 kids ages 12, 10, and 7 . She wii probably move in with us now. I am nervous about everything. I have my moments of calm and panic. She usually panics but has been so brave so far, I am so proud of her.

We are going to dr. Baruta at mass general. He is the director of the gyn- onc dept. He seems good, I hope so.

Hope to get in touch with some of you! I did sign up at the yahoo group too. I am an Internet researcher for better or worse, but will have to limit it because it is too much. I am grateful and hopeful though that my mom will not get online with this!

kris

JMoses
Posts: 7
Joined: May 2012

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

Clouth
Posts: 10
Joined: Jul 2012

I added you... Can't figure out how to email though. My email is clouth@gmail.com.

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

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

Best regards

Clouth
Posts: 10
Joined: Jul 2012

Yes on 7/23. It is stage 3c1. It was in 2 lymph nodes and about 90% through the uterine wall. Clean washings. She starts carbo taxol tomorrow!

Thanks for asking. :)

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

Keep us posted, please.

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