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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

nempark
Posts: 596
Joined: Apr 2010

Hi guys: Please write and let us know how you are doing in treatment. Be well everyone. J

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jazzy1
Posts: 1387
Joined: Mar 2010

I had my follow-up with my radiation oncol today. All is well with me as had my last treatment July /09. I did ask him again about my aggressive type cancer (MMMT) and he explained it has a lot of the same features (??) as ovarian, but is truly uterine. He told me yes it can move around to other body parts/organs, but so many other cancrs will also do the same. No one knows...

My take -- do our part in healing our insides out with proper foods, vitamins, exercise and mind-altering exercises. All of this we have control of, but not the cancer.

So great to read about many of us with this same cancer, are many years out from treatments.

Go have a great day ladies....and keep fighting -- we can win!!
Jan

nempark
Posts: 596
Joined: Apr 2010

Thank you Jan, you sound like such a positive lady. Continue being an asset to this board. Love June

nempark
Posts: 596
Joined: Apr 2010

Thank you Jan, you sound like such a positive lady. Continue being an asset to this board. Love June

nempark
Posts: 596
Joined: Apr 2010

j

biz.is@juno.com
Posts: 1
Joined: Oct 2010

Hi,
I am a 52-year-old athlete that was diagnosed with ovarian cancer stage 4 MMMT in November 2009. That was almost a year ago, and after surgery, immediate chemo, and lots of exercise, supplements, sugar-free eating, tons of water, prayers, and good attitude.....i recurred pretty quickly. So disappointing! But as Jazzy1 said, I think if I had not tried so hard to get back to my normally healthy self, I wouldn't now be so strong and ready to fight again as I start my second chemotherapy. I still bike and hike, garden and work, and never felt better. Hard to believe I actually had more tumors growing all this time that I thought I was in remission. My oncologist said 10 years ago these heavy-duty meds weren't even available, so I'm tickled to be alive. "Chemo is our friend," I keep quoting, even though it is killing me; so that I can keep living! Wow what a rare disease, isn't it! How in the world did any of us end up with this?

nempark
Posts: 596
Joined: Apr 2010

Hope you are doing alright. June

kriscan
Posts: 5
Joined: Sep 2010

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

Susanna23
Posts: 66
Joined: Dec 2010

Hi Kris
Well done on finishing your treatments! You are a stage ahead of me - I start my chemo on Tuesday. It's encouraging to learn of your ezperience of treatments - that you continued to work and live normally as far as possible. That's what I will try to do as well. Good luck with your tests as they come up - please let us know how you get on
Take care
Susan

kriscan
Posts: 5
Joined: Sep 2010

Hi Susan,

I guess you are undergoing your chemo treatments now. I hope all is going well and you are experiencing minimal side effects. I am recovering from all the side effects I experienced during chemo and radiation. My hair is back and, apparently, I am in style with my very short hair since the pixie cuts have become the style of choice for many celebs lately.

I just had my first set of pet scans last week and the results are in: I got the all clear!!! I had a couple of anxious days waitng for the results but what a relief when the doctor told me there was no sign of cancer. Of course there will be many more scans to look forward to but that is the goal isn't it? To be able to keep looking and moving forward.

I am back to my full work schedule and I have returned to my volunteer work as well. I still combat the fatigue now and then but, overall, life is good. I hope your treatments go well and I look forward to hearing about your experience.

Keep smiling!
Kristine

RoseyR
Posts: 464
Joined: Feb 2011

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
Posts: 5
Joined: Sep 2010

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

RoseyR
Posts: 464
Joined: Feb 2011

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

kriscan
Posts: 5
Joined: Sep 2010

Hi Rose,

My pelvic radiation was IMRT followed by the brachytherapy. My radiation was not sandwiched by my chemo. I had all my rounds of chemo up front and my chemo drug combination was ifosfamide/taxol. I did not have the taxol/carbo combination.

Hope all goes well.
Kris

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marti968
Posts: 31
Joined: Apr 2013

Oh you are so positive.  I am trying to be.  I always have been but now have lots of down days.  I live alone and my friends have left for the summer for cooler spots like Colorado where I used to go with my former husband.  I wonder if I should try to stay alone or should I move into an Independent Living Facility for this.  I sold my home a few years ago and live with my two little Bluemoom Yorkies.  The "Pooper" I have posted is Lacey.  I lost her 3 yrs ago and when my 93 old friend passed away I "inhereted" the two Yorkies.  It helps to have them here.  They will not leave my side.  They are used to me since they had play dates with my Lacey so they know my smell and thier smell must be all over.  Here for less than 2 minutes they stopped crying and wanted to play. They seem to greave for Carol at times but otherwise they do fine.  I tuly love the fur-kids.  So I haveto servive so that these two fur-kids do not loose another non-fur-mommy, LOL!  Seems rough to get these treatments done and the side effects.

b-bowen
Posts: 1
Joined: Nov 2010

My wife (72) was told she has stage 4 MMMT in June 2010. We went to Sloan in NY. Was very disappointed with DR. and response. There is a women DR.there that knows something about MMMT. We saw the wrong DR.Veach, He did no special test, did not return my e-mails and it took over a month to get his report.

We went to Hillman Cancer Center (11/18/10) in Pittsburgh, DR. Edwards has seen over 70 MMMT case. Very knowledgeable My wife had a complete hysterectomy in 1977. She had a 6 cm growth removed on 8/24/10. and it is coming back already. She is suppose to go back Dec 7 to be opened up and the have the Chemo wash. Then 6 months of Chemo after that.

Wish you the best of luck and God be with you.

Bud

nempark
Posts: 596
Joined: Apr 2010

Where is the growth? Did she have chemo for the growth when they removed it? Okay, I am sure you are now in better hands. Some of these Docs are only interested in seeing as much patients in one day in order to make $$$$ so they don't take the time to really take care of you. I am glad that you immediately found a really good Doc. I am strongly thinking of seeing another doc just for a second opinion. I was dx in 2009, total hyst. All is well to date. Please keep in touch especially since this is a rare cancer, I would like to get updates. May our Great God be with you at this time and give you the strength and wisdom to deal with this dreaded disease. June.

AndyCN
Posts: 2
Joined: Aug 2010

My mom has been on Avastin and it did help for a while. Now she's on some other drug due to resistence / toxity.

She still has 2 big masses in tummy and mets in lungs.

Our doc will continue with some other chemo drug next week, but other docs who i go for 2nd opinion are giving up.

for those ladies on this site who have very late stage / recurrance ladies and is in remission now - can i know what drug you used? did you do surgery? how long did it take for the tumor to grow again (if unfortunately it came back) after surgery?

nempark
Posts: 596
Joined: Apr 2010

So sorry, I do not have much information for you, because I was stage 1a and had a total hyst. These cancers are very aggressive and you never know when it will show up its ugly face. Please do not give up with mom, tell them to try everything they have. Maybe
someone else on the board will be able to give you some good advice. My prayers are with you and mom. Keep up the good work. J.

Susanna23
Posts: 66
Joined: Dec 2010

Hello everyone
I had written confirmation today that I have a uterine carcinosarcoma Stage 1a, after meeting with a second consultant last week to discuss further treatment. I had total hysterectomy with lymph node dissection and washings on November 10 - lymph nodes and washings clear and tumour very small. Till last week, I assumed it was a grade 3 adenocarcinoma because all my consulations - from endometrial biopsy onwards - said grade 3 and adenocarcinoma is the most common type. I was told last week - now confirmed - that the possibility of distant recurrence is around 30% and I can either opt for follow up or 6 rounds of carboplatin and taxol but there is no guarantee that the latter will improve my chances as trials have not been done (but the consultant hinted to me that her feeling was that it might halve the chances of recurrence but she has been careful to say that there is no level 1 evidence of this). I have signed up to the chemo! I've recovered better than I thought from the surgery - thought I had put it all behind me (apart from being warned that grade 3 is 'unpredictable') Till I saw the second doctor (my surgeon having said chemo might be helpful) I thought the only way ahead was to try to get onto the PORTEC-3 trial which would have given radiotherapy plus or minus the chemo. But I am not eligible for that, and apparently I don't need the radiotherapy at present (they would do it for a local recurrence). My internet research on this has made very dismal reading - as some of you have said. It's making me start to re-think lots of things. I am 60 and I was hoping to carry on working till I am 65 (I am a freelance journalist) - now I am wondering, do I retire early, call in the pension? Set my affairs in order? (of course, they should already be in order!)
I am based in London, UK. I noticed one lady on this forum is in Scotland. Are we the only two people in the UK with this? I have nothing but praise for the way I've been treated thus far - I don't blame anyone for not picking up the carcinosarcoma Dx straight off.
Take care and happy Christmas. Hope to hear from some of you in due course.
Sue

nempark
Posts: 596
Joined: Apr 2010

Hi Susanna sorry you had to join us. i am also 60 years and was dx in Nov 2009. Stage 1a grade 3. Total hyst and 6 sessions of chemo. No radiation. It does make you look at life differently. I am no longer working and I really don't care to go back, but I do miss the working life. The internet preaches doom and gloom so I would stay away from that. I hope you managing to cope and don't let this disease rule your life. You are the best judge whether you should continue to work or not. Believe it I still have not gotten my affairs in order (laugh). Anyway, I wish you all the best and pray that our Great Creator give you the wisdom in order to make the right decisions. Chat with you later! J.

Susanna23
Posts: 66
Joined: Dec 2010

Dear June
Thanks very much for replying to my post. I hope you had a good Christmas! Have you seen the MMMT group on yahoo? I have joined that also - got a couple of replies from ladies suggesting that the chemo is the way to go. I have the kidney function test this morning and hope to get a start date this week (we have a number of bank holidays in the UK around this time and really everything is not back to normal until Jan 4).
What vitamins do you take? I am on vitamin D3. I agree with the berry juices, green tea etc - did you get any specific nutritional advice from someone or did you do your own research?
Take care
Sue

dlustrous1
Posts: 2
Joined: Jan 2011

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

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jazzy1
Posts: 1387
Joined: Mar 2010

You're such an inspiration that we can endure, even when statistics have us in the ground way too soon. I live my life very optimistically and believe my higher power will allow me to enjoy a wonderful and long life.

I completed my treatments (for MMMT) July '09 and have been NED since....knocking on wood now!! I think so much of this is truly luck. My only way of control is with how I now take care of my body thru exercise, organic/whole foods and lots of laughing and positive thoughts.

Good luck to you and hope you're NED for another 20 years!
Jan

nempark
Posts: 596
Joined: Apr 2010

Thanks for the encouragement!!! Diane you are doing great, you are cured. Jan, I always read your posts, keep up the good work. Let's all continue to be NED. I am so sorry to hear about our dear friend Linda, but I don't want to start worrying because I know she will come up with a great plan!!! Love to all. June

sue.remington
Posts: 2
Joined: Feb 2011

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

nempark
Posts: 596
Joined: Apr 2010

Sue I am fascinated by your story. When I was sick, my husband became sick shortly after so keep an eye him. Off course, you are going to see your kids graduate from college and you will certainly see your grands. You seem to be quite a spiritual person and that means a lot. I do know the scripture you mentioned “Let him call the older men of the congregation to him, and let them pray over him, greasing him with oil in the name of Jehovah. And the prayer of faith will make the indisposed one well, and Jehovah will raise him up.” (this scripture I though was specifically for wrong doers, in order for them to come back to God, please explain) What has peeked my curiosity though is "how did the Lord communicate with you about losing your hair and what if you had replied negatively, I wonder what would have happened. Off course faith and prayers and hope are amazing. Please let me know what your religion is. My sincerest best for you and your husband. Speedy recovery and Good health to you both. J.

RoseyR
Posts: 464
Joined: Feb 2011

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.

dlustrous1
Posts: 2
Joined: Jan 2011

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...

RoseyR
Posts: 464
Joined: Feb 2011

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

carefreeinaz
Posts: 1
Joined: Jun 2012

Sincere thanks to you & all who contribute to this board.

My mother-in-law (77) was just diagnosed with MMMT 3a. She underwent a complete hysterectomy approx. 6 weeks ago. They found a large tumor in the uterus & cancer in one ovary, lymph nodes clean. Unknown at this time if the ovarian cancer was a spread or second primary. (I do not understand how they can determine stage without determining this first?)

Any case, chemotherapy has been recommended. They have given her a choice of a series of Carboplatin or series of Carboplatin plus Paclitaxel. I believe she is leaning towards Carboplatin only. She will start next week. She is scared to death (and so are we).

How can we help her thru chemo, help retain her strength, by way of diet, supplements, etc.? Any suggestions/information appreciated. We are all in a bit of a tizzy right now.

This board brought us hope. Bless you all.

Jackie

RoseyR
Posts: 464
Joined: Feb 2011

Jackie,

Am a survivor of MMMT so far (stage iB, diagnosed two years ago). Would love to send you some advice on how to get through chemo with minimal side effects. If you send me your email address via CSN email (upper left of this screen), I will respond.

Best,
Rosey

parkmom
Posts: 1
Joined: Oct 2012

Could you send me some info on how you got through the chemo and what you did for treatment? There are many questions and we are trying to help mom as much as possible. Don't know which oncologist to see and such. We are debating between Virginia Piper in Minneapolis, MN and Rochester Mayo, also in Minnesota.
thanks for any help you can send me.
Parkmom

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marti968
Posts: 31
Joined: Apr 2013

I am not puter savy and clicked on what I thought what would produce a way to give you my E-Mail.  I guess it sis not work.  Please E-Mail me at wer70@cox.net.  I know nothing at all and no one is calling me. I just can't seem to get the strenghth to go to the Hospital and talk to someone there at the 2nd floor. 

kehoops
Posts: 4
Joined: Nov 2005

There are many survivors at the yahoo support group for this rare beast. Please join us at:

http://groups.yahoo.com/group/UterineMMMT/

Best wishes

RoseyR
Posts: 464
Joined: Feb 2011

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

tundraotter
Posts: 2
Joined: May 2011

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!!

tundraotter
Posts: 2
Joined: May 2011

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!!

Vbudafly8j7
Posts: 2
Joined: May 2011

My mom was just diagnosed with MMMT... She is 49 as well. She is coming here to vegas soon.. it's just so hard because I do not have all of her diagnosis on me and I do know she had a full hystorectomy, and is at Stage 3 1 or something and the cancer had spread to her lymphnodes. I wish I could be with her, but am happy she is coming to Las Vegas soon. Please help me on bringing more awareness to people!

http://www.facebook.com/pages/MMMT-Cancer/149687828435913?v=wall

or find on facebook MMMT Cancer
Velvette Buckley

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marti968
Posts: 31
Joined: Apr 2013

My GYN Doc told me that there is no warning since the things that happen usually are symptoms for other things. It does not show up in the yearly tests of course.

RoseyR
Posts: 464
Joined: Feb 2011

Dear Tundraotter,

Just want you to know that at the major cancer center where I'm being treated (MMMT), my radiological oncologist reports that they have several patients who are doing "very well" with even this aggressive cancer, so don't give up hope.

Have you seen the posts by Dilustrous? She too was diagnosed at an advanced stage yet is still alive after five years.

Hope youre getting treatment at a great center. Just try to enjoy every day as much as you can while feeling OK.

Love,
Rosey

nsm524
Posts: 1
Joined: Jun 2011

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!

RoseyR
Posts: 464
Joined: Feb 2011

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
Posts: 5
Joined: Aug 2011

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

RoseyR
Posts: 464
Joined: Feb 2011

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

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

Dear RoseyR

So you never lost your hair from chemo? Good for you! Any idea which supplement helped you not go bald? I would love to know.

thanks,

Carolen

RoseyR
Posts: 464
Joined: Feb 2011

Carolen,

Sorry: side effects to me meant nausea, flulike symptoms, mouth sores, peripheral neuropathy, and fatigue.
I had none of those.

But I did lose my hair after the second round of carbo-taxol. (Curiously haven't lost any more of it after round 5 and 6, however; it's now half an inch long and my last treatment was two weeks ago.)

I am so unconcerned about hair loss that I neglected to mention it as a "side effect."

Sorry,

Rosey

RoseyR
Posts: 464
Joined: Feb 2011

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

kimberlite
Posts: 5
Joined: Aug 2011

Has anyone heard of the phase 2 clinical trial of this drug
at Colorodo State or Sloan Kettering?
thanks
Kimberlite

kimberlite
Posts: 5
Joined: Aug 2011

Has anyone heard of the phase 2 clinical trial of this drug
at Colorodo State or Sloan Kettering?
thanks
Kimberlite

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