Are there any other MMMT survivors out there?

dlustrous1 said:

MMMT
I'm replying to the latest comment since this blog has continued for so long. I am currently 59 years old and will celebrate my 60th birthday in July. I never thought I'd see 55 years old!
I was diagnosed with MMMT (I've never heard this accronym before!) 3C in March 2006. I had 6 rounds of chemo and 30 doses of 8 fields of radiation each time and 3 internal doses of radiation. I was given until the end of the year (2006) to live. This March will be 5 years since my initial surgery/treatment. DO NOT EVER GIVE UP!!!! I was sure my life was over but I've lived through the birth of 4 additional grandchildren, travel to Europe, Hawaii and many other places. I read all of the horror stories on-line - thinking my life was over. But no one really knows, do they? So, continue to grab all the life you can!!!!!
Prayers and best wishes to all of you!!!
Diane

would like to get your email
Hello dlustrous1.....your story sounds so much like mine. I would like to communicate with you directly. Could you send me an email at sue.remington@comcast.net

Here is my story.
Hi, my name is Sue, I am 57 and I am new to the group. I started spotting Nov 18, 2010. It was brown and not very much. I thought I had over lifted when pitching hay to the horses. However, the next day the toilet was a bright red. On November 22, 2010 I had an ultra sound and an 8 cm tumor setting above my vagina and to the right was discovered. My CA125 level was at 239 and they suspected colon cancer or some type of gyn cancer or both. A Dec 22 date was set for surgery. I left to go back East to help my daughter get thru finals and ended up in the emergency ward Dec 6th because the tumor had wrapped itself around the right ureter and was causing severe hydronephrosis. I had surgery Dec 11, 2010 and was diagnosed with mullerian ovarian cancer stage 3c. This was a shock to me since I had a complete hysterectomy almost 8 years prior and was told I never had to worry about cervical, uterine or ovarian cancer. My cancer was due to an ovarian remnant. 2 out of 24 lymph nodes were positive for cancer. They removed my omentum and it was negative. The tumor had adhered itself to the right ureter, my bladder and all thru my intestines. The doctor scraped and washed those areas. The washings were positive for cancer. Dec 29th was my first chemo treatment of carboplatin/Toxil. After my first round, my CA125 level dropped to 14. After the second treatment it dropped to 10. I have a doctor’s appointment on March 1st.
I see where so many women received radiation as well as the chemo therapy. Articles seem to indicate a higher success rate. Is there a reason why some doctors administer radiation and others do not? Does anyone have a similar case as mine that has received radiation?
Back in Sept/Oct 2010, I went on a 21 day fast of water and a glass of orange juice each day. One of many things I prayed for was that the Lord would make me healthy. After the fast, but before the bleeding started, the Lord asked me if I was willing to part with my hair. It was blond, healthy and past my waist. I told the Lord yes not really understanding why He would ask that of me. Less than 2 months later my hair was gone from the chemo treatments.
When I finally got to return home to Colorado on January 7, 2011, I did as James 5:14-15 directed me to do and went directly to my church for prayer. I know that the Lord has written this into my story and I have peace knowing that He has my life under control. However things turn out I am in a win situation. My husband of 38 years is having a hard time and I would appreciate prayer for him. I tell him I am a daughter of the Most High and that the Lord loves me more than anyone else could. I know the Lord has my best interest at heart. I would love to see my kids graduate from college someday. I would love to see my grandbabies and tell them how awesome God is and how much I love them. I feel so privileged to even exist. I am believing in a miracle as to my healing. For truly our conditions lie in His hands. Hope and faith are an amazing thing. Meeting Jesus and our Heavenly Father someday will be the greatest day of my life! Right now I am treasuring each day here.
I am so thankful this website exists. It brings hope. We as prayer warriors have much work to do and I will be praying for all of you.
Much love to all,
Sue

What Have You Done to Gain Remission?


Dear Carrie,

Congratulations on your long remission. You could help many of us by letting us know what traditional treatments (or diet, or alternative treatments) helped you to gain this remission.

Appreciatively,
RoseyR

dlustrous1 said:

MMMT
I'm replying to the latest comment since this blog has continued for so long. I am currently 59 years old and will celebrate my 60th birthday in July. I never thought I'd see 55 years old!
I was diagnosed with MMMT (I've never heard this accronym before!) 3C in March 2006. I had 6 rounds of chemo and 30 doses of 8 fields of radiation each time and 3 internal doses of radiation. I was given until the end of the year (2006) to live. This March will be 5 years since my initial surgery/treatment. DO NOT EVER GIVE UP!!!! I was sure my life was over but I've lived through the birth of 4 additional grandchildren, travel to Europe, Hawaii and many other places. I read all of the horror stories on-line - thinking my life was over. But no one really knows, do they? So, continue to grab all the life you can!!!!!
Prayers and best wishes to all of you!!!
Diane

Can You Tell Us a Bit about Your Treatment?

Diane,

You are in inspiration! Can you tell us whether you had your six rounds of chemo as a "sandwich" with radiation inbetween or sequentially, with radiation afterwards? And did you take any other measures of your own (nutritional or otherwise) to bolster your survival?

Thanks so much,

Rosey R.

kriscan said:

Treatment update
I thought I would share with everyone that I have now completed my treatment regimen. I had my surgery in July, my chemo treatments during August - October, my external radiation treatments started in October and continued all of November, and I just finished my third and final internal radiation treatment on December 29th. I was fortunate and experienced minimal side effects. Chemo caused me to lose my hair and I had some minor nausea, my radiation treatments played a little havoc with my bowels, and, naturally, there was some fatigue. However, I continued to work during my treatments and only missed days when I felt I could not perform my job responsibilities adequately.

I am starting 2011 with my treatments behind me but now I feel like I am on watch. I am scheduled to have my first set of scans by mid January and I have multiple follow up appointments already set. I confess that this part is going to be a little difficult for me. The waiting to see if the treatments worked will cause me some anxious moments I think. I tend to be a positive person and I am feeling good, but I never felt bad before my diagnosis either.

I am going to try to focus on living my life as normally and productively as I can since this is what I can control. I have a wonderful family which includes three children who I am fortunate enough to be close to and involved with despite the fact that they are 20, 18, & 15 (all ages when kids tend to distance themselves from parents). I am also fortunate with respect to my job because it is more than work to me,it is a mission. I work as a domestic violence, legal advocate & counselor and have been blessed to meet,help & serve many courageous, wonderful women doing my "job" and I hope to continue in my efforts for a long time to come.

I see every day what women can accomplish under very difficult and stressful circumstances with belief in themselves and a solid support system. The inspiration they give and the courage they demonstrate will continue to help me as I help them. Kris

Glad to Hear--and just a few questions

Dear Kris,

Congratulations on finishing so much treatment and having good news on your recent scans.

As I will be treated where you were, would like to know how MUCH "havoc" your radiation has created with your intestines.
(Need to decide whether to have just brachy or add IMRT full-pelvic to the regimen. Am a bit afraid of the full pelvic (scheduled for April and May) because need to go back to work in September. (How bad or frequent is your diahrrhea? Can you still eat whole grains and cooked vegetables? Do you have any hip pain? Neuropathy in hands or feet?)

Thank you so much,
Rosey

kriscan said:

Radiation Intestinal Side Effects
Hi Rosey,

My intestinal side effect of diarrhea began during week 2 of my external radiation treatments and continued for the duration of my radiation treatments. I did alter my diet to exclude most foods we are usually encouraged to eat (fruits, vegetables, whole grains). The diarrhea ocurred daily and several times a day while I was undergoing treatment (despite the modified diet) and continued for a short period of time after my treatments had concluded. I was instructed to utilize immodium in an effort to combat the diarrhea but this would cause me to become constipated which was very uncomfortable. I persevered and developed my on coping skills, especially when I was at work. I did find different foods minimized the number of occurrences in a day which was helpful in my effort to keep working during treatments.

About a month after my treatments concluded, the diarrhea was gone and I had resumed a normal diet again. I did not experience any hip pain or neuropathy. I consider myself lucky that this was the only difficulty I had. Of course I did not venture far from home when I was experiencing all this fun and when I did go some place, knowing the location and accessibility of the bathroom was of utmost importance!


I hope this information is helpful to you. Let me know what you decide to do and how your treatments progress. Good Luck!
Kris

Thanks for the Information

Kris,

Thanks so much; it's encouraging.

One final question: did you have IMRT or EBRT as your full pelvic radiation?

And I assume you had a final round, after radiation, of taxol/carbo?

Rosely

RoseyR said:

Can You Tell Us a Bit about Your Treatment?

Diane,

You are in inspiration! Can you tell us whether you had your six rounds of chemo as a "sandwich" with radiation inbetween or sequentially, with radiation afterwards? And did you take any other measures of your own (nutritional or otherwise) to bolster your survival?

Thanks so much,

Rosey R.

Question!
I had the chemo treatment first and then followed with the radiation, external and internal. I try and eat well, but with the radiation scarring, I have bouts of intestinal blockage so fresh fruits and vegetables, seeds, nuts and all of the good fiber foods we should be eating are a no no for me. In all honesty, I never thought I would still be around so eating is one of my pleasures and I haven't limited what I eat other than those I mentioned before. I am going to have a PET scan since I have just hit my 5-year "birthday" and truly, am scared to death. I don't think the fear ever diminishes. I wish you luck with everything...life is precious. Remember to enjoy each day...blessings to you and yours...

tundraotter said:

I'm so glad to find this
I'm so glad to find this site and feel like part of a "community" with this rare form of cancer. At my annual physical in February I told my doc I had some hip pain. To her credit, she quickly ordered the right tests and within a couple of weeks I was diagnosed with Stage IV MMMT ovarian cancer. PET scan showed a lesion on the hip bone, but also lymph node spread to lung and a handful of abdominal sites. CA-125 was 850, went up to 1350 right before first chemo. After 3 chemo doses, it's down to 250 and new PET scan shows the hypermetabolic activity has stopped. Most spots have shrunk to half their size, except the ovarian mass which is still 10 cm. Prescribed another 3 doses of chemo (Taxol and Carboplatinum) to hopefully knock down the mets before surgery. So far, able to work which has been invaluable in terms of sanity, as well as of course, health insurance. Eager to hear from others and share this battle together!!

By the way, I'm 49 years old
By the way, I'm 49 years old and thought my lack of periods and slight pelvic discomfort was just the onset of menopause. We need more publicity to encourage early detection!!

My mom
I am inspired by reading all of your comments! Three weeks ago, my 68 year old mom was admitted to the hospital with a distended belly, and having not eaten for a week. Initial CAT scan revealed masses in her abdomen. This was initially thought to be peritoneal cancer. After an eight and a half hour surgery and removal of her peritoneum, omentum, spleen, part of the left diaphram, colon, rectum, and total radical hysterectomy, the tests revealed a stage 3c MMMT Ovarian Cancer. She is slowly recovering from the surgery, and has been transferred to a rehabilitation center as she has been in the hospital for almost a month. This comes as a complete shock to the whole family. I wish I could be there, but live 300 miles away.

I don't know how to handle the news, my dad is always positive, yet everything I read is just the opposite. Is there anyone out there with this kind of involvement? How are you doing?

Thank you for your support!

nsm524 said:

My mom
I am inspired by reading all of your comments! Three weeks ago, my 68 year old mom was admitted to the hospital with a distended belly, and having not eaten for a week. Initial CAT scan revealed masses in her abdomen. This was initially thought to be peritoneal cancer. After an eight and a half hour surgery and removal of her peritoneum, omentum, spleen, part of the left diaphram, colon, rectum, and total radical hysterectomy, the tests revealed a stage 3c MMMT Ovarian Cancer. She is slowly recovering from the surgery, and has been transferred to a rehabilitation center as she has been in the hospital for almost a month. This comes as a complete shock to the whole family. I wish I could be there, but live 300 miles away.

I don't know how to handle the news, my dad is always positive, yet everything I read is just the opposite. Is there anyone out there with this kind of involvement? How are you doing?

Thank you for your support!

Offering Some Support


Dear NSM424,

So sorry to hear of your mom's diagnosis.

Yes, MMMT (now known more commonly as "carcinosarcoma") is a very aggressive cancer but there ARE some patients who, even diagnosed at stage 3, are still alive four to five years later.

Scroll back to read comments by "Dilustrous," for example, who was diagnosed with srage 3C in 2006, given about a year to live yet five years later is still doing fine.

Try to be sure your mom is getting treated at a major cancer center, advise her to stop eating sugar as much as possible, and look into dietary recommendations in books by James Quillen and Michael Murray, major nutritionists who know a lot about cancer and nutrition. A very optimistic book called Anti-Cancer will also help with diet. Its author, a psychiatrist adn scientist, managed to keep even a lethal brain cancer at bay for nearly twenty years (although he has finally had a recurrence after all that time) through nutritional vigilance.

Best,
Rosey

kimberlite said:

mmmt with rhabvdoid cells
In November 2009 my wife noticed spotting and went to her ob/gyn. She was 68 at the time.
she was diagnosed by biopsy with uterine cancer..

She was referred to Mt Sinai Hospital and met with the head of the oncology gynacology department.

in early December she has surgery and her uteris , ovaries and about 12 lymph nodes removed.

After biopsy they found mmmt cancer with rhabdoid cells in 95 percent of her uteris and 7 lymph nodes, Stage 3

In January She then went through 6 rounds of chemo each lasting 24 hours for 4 days each of taxol and isofosomide,plus a number of preventative drugs. the on the 5th day she received an injection ( iforgot the name) it increases her white blood cells very painful and costs $4500- for the one injection, thank god for medicare.

in July she finished her Chemo and had another pet scan, more lymph nodes were hot. she then went through 25 rounds of radiation and internal radion, the new type of focused radiation. 4 months later her pet scan was clean. that was about march 2011.
We were so happy it was clean.

Unfortunately last week after 5 months later there are now 5 new lymph nodes that are hot and something on her bladder.

She is beside herself as she does not want to lose her hair again and suffer tyhrough chemo this time of taxol and carbol(sp).

anyone had this experience? Any suggesdtion?
Thanks
Kimberlite

My Suggestions

Dear Kimberlite,

Am so sorry to hear of your wife's diagnosis and ordeal.

Would like to offer a hint of hope here: and that is that taxol and carboplatin should be an EASIER chemo regime than the one she last had. (My own onc told me that ifosamide is definitely "harder on you" than carboplatin and taxol.)

I myself have had five rounds of carbo/taxol and so far--I am not exaggerating--NO side effects.

Of course your wife has already been a bit debilitated by a prior chemo regimen so I won't pretend that may not play some role in her response to upcoming treatment. (But I too, by the way, had 25 external radiation treatments of my pelvis after the first three rounds of chemo--and still had no side effects from the fourth and fifth rounds of chemo.)

If it's fear of her chemo that's the main problem right now, here's what I'd recommend.

If she can see an integrative doctor who will prescribe a few supplements for her, your med insurance will pay for office visits
if not for the supplements.

What my integrative doctor prescribed during treatment with taxol/carbo were the following--all availalbe online, by the way.

1) glutamine (a white powdery amino acid), inexpensive
one teaspoon, three times a day, in a glass of water before meals. Start a day before chemo and continue first three days OF chemo. Helps to prevent neuropathy in hands and feet and protects intestines from the chemo

2) fish oil (two to three teaspoons a day AFTER meals) (best brand "Finest Fish Oil by Pharmax)
Helps to protect the intestines and prevent appetite loss. This brand has NO fishy flavor at all! Orange is in it to prevent that.
Research also shows that fish oil helps the taxol to work more effectively!

3) ProGreens (comes in a jar, refrigerate after opening)
Take one scoop each morning before breakfast in a glass of water. Don't let the green color deceive you; it does not taste bad at all. Not good, but not bad! And it's a powerhouse of protective ingredients that fortifies your system against the assaults of chemo. Helps to prevent that horrible constipation most experience during chemo and protects intestines.
If your wife can't eat a lot of green vegetables during chemo, this supplement will supply her with all the nutrients she needs that come from greens!

4) Two multivitamins a day (one, twice a day with meals) - brand, "Nutrient 950" (contains no copper or iron which many researchers believe promote metastasis). Available online and not too expensive. Once she's done chemo and treatment, take two, three times a day.

5) AHCC (two capsules three times a day or three twice a day) brand Protocols for Life.
This is a mushroom extract given to nearly all chemo patients in Japan. Helps soften the effects of chemo and bolsters your killer T-cells (the ones that attack cancer). Problem: it IS expensive: eighty dollars a bottle, and at this dosage, you'd need three bottles a month. You could lower dose to four a day to ease the expense. If you dont take AHCC, you could try Maitake D fraction (half as expensive).

6) Optional: 200 to 400 mgs of vitamin E succinate a day (esp if you fear or are develoopoing numbness or tingling in the extremities).

With just these supplements, I went through five rounds of carbo/taxol with nearly NO side effects: no vomiting, not even nausea, no numbness or tingling in hands and feet, no mouth sores, not even much fatigue.

Finally: While on taxol your wife MUST, in my opinion, take curcumin. Best brand is probably Life Extension's Bio Super Curcumin. She should take two capsules a day WITH meals. Why essential? To prevent an inflammatory response to taxol and to help taxol to work better. There's been some rsearch from Dr. Aggarwal, of MD Anderson about the danger that taxol may, while very good at eliminating any current tumors, may "spread" a few microscopic cells throughout the body; curcumin, his research shows, has been shown to prevent that from happening.

Finally: Please refer to my post under "best books read" near the top of the subject index; I"ve just listed some that were most valuable.

And do take some heart: there HAVE been patients even with Stage IIIC cancer of your wife's sort that have survived far longer than predicted.

Best,
Rosey