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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

aochime
Posts: 1
Joined: Sep 2010

Hello,

My mom was diagnosed with MMMT stage 3 and we are very scared and not really sure what to do. My sister told me to do some research and find other women in her age group that are beating this. I read your comments and if its possible, we would like to communicate with you. You can reach me at aochime@yahoo.com

Thank you,

Anthony

janaes
Posts: 462
Joined: May 2016

Hi Anthony, I was diagnosed with MMT stage 2 Grade 3 uterine cancer back in May 2016 after my hysterectomy.  There are other women on this board who have MMT as well.  Im not full of knowledge but know this is an agressive cancer, yet Ive read other story on this board of women who have beaten this cancer.  I hope others see your post too.  If they dont you can start a new thread and i would think that would help.  You can also type MMT in the title bar at the top and it will pull up alot of threads around this cancer.  I also liked to click on peoples names when i find they have MMT and it tell more about them.  There is a lot of info about this cancer.  I also found it helpful to read up on the different cancer websites like this one. (American Cancer Society).

Janae

jinkies's picture
jinkies
Posts: 8
Joined: Sep 2016

Did you have chemo or any other treatments? I had a total hysterectomy but they did not remove lymph nodes in February 2016 and have completed 18 weeks of carbo/taxol. I cannot get my local oncolgist to prescribe anything but chemo and CTscans.

Editgrl's picture
Editgrl
Posts: 865
Joined: Jun 2015

Welcome to the board.   Sorry you had to find us, but I'm glad that you did. as there is a lot of information here.  

Did your surgeon not remove any lymph nodes at all?  Have you had a post-treatment scan?  

If you are not happy with your local oncologist, have you considered getting a second opinion?  If you don't already have them, it would be helpful to have all of the pathology and scan reports for your own records so that if you do seek a second opinion, you already have those things in hand.

How you are feeling now?

Also, you might consider starting a new thread.  This one has so many entries that it's tough to find and respond.

Again, welcome.  There are several women on this board with carcinosarcoma/mmmt, some long-term survivors.  No reason you can't be one of them!

jinkies's picture
jinkies
Posts: 8
Joined: Sep 2016

I live in a rural area and had a right ovarian tumor that was torsed 4 times and I was in a lot of pain so they had to do emergency surgery with a regular gynecologist at our local hospital. They did not remove lymph nodes because they did not see or feel any inflammation and the omentum looked good to them, so they didn't feel it had spread. It wasn't til we got the pathology report that they could see two tumors in the omentum and it was also in the washings. My oncologist sent me to Iowa city to see if his 18 week carbo/taxol treatments would be appropriate for my cancer. they suggested IP therapy with cisplatin and taxol which I agreed to anyway long story short, they botched my port it wasn't even in the right place, infiltrated chemo in my chest and infected my port all on the first visit, and I had to go back a few days later and have port removed and port site treated at our local wound center for debridement and antibiotics for infection. I never went back to Iowa City and had my 18 weeks CARBO/TAXOL done locally through my chest port. I have not had a post treatment CT scan yet because I have had so many CT's this year I am afraid of the radiation I also have BRCA2 and I don't repair my DNA so I am afraid of damaging cells and increasing my risk for cancer,and I am not sure they will be able to see the cancer on a CT because it is clear cell unless there is a large mass in there. Also my other problem is my CA125 is always normal it has never been higher than 14 even when I had my tumor, my last one was 6. I have tried several hospitals for a second opinion after chemo completed but they all say they don't have anything for me, no clinical studies available so they won't take me as a patient the last one I tried was Mayo in Rochester, Minnesota. My oncolgist doesn't want to try anything that isn't scientifically proven so he just orders CT'S and CA125. The combination clear cell and MMMT and ovarian cancer I think they don't want to touch you and they are probably waiting for a tumor to come back so they can give me more chemo and I don't feel that is the answer especially since they know my cancer tends to be platinum resistant. I have been taking supplements unknown to my doctor because he doesn't believe in them, improving my diet and exercising, but I could be doing more if I knew what. I feel you are given this devastating news from doctors and no real guidance on how to deal with it, sorry this post is so long, and thanks for the interest in my case.

Kvdyson's picture
Kvdyson
Posts: 702
Joined: Jan 2016

Jinkies, I am so sorry that you've had to go through this experience but glad that you found us. We are a very experienced group of people who are willing to share our stories and advice. If you haven't already, you may also want to try checking out the Inspire Ovarian support group. It is also very active and the people there are wonderul.

My understanding is that CA125 is not a good marker for everyone so it's not too much of a surprise that yours did not move up even with active tumors. When did your chemo treatment end? Does your oncologist consider the treatment to have been successful enough to shrink the two tumors in the omentum? Or do you need to have a second surgery to remove them? Is your oncologist a gyn-onc with experience treating MMMT or Clear Cell?

Besides Mayo in Rochester, have you tried contacting any of the other large cancer centers like MD Anderson, Memorial Sloan Kettering or Dana Farber? I received a second opion from Moffitt after I was disagnosed with uterine MMMT in Sept 2015. They came back with a completely different diagnosis so I ended up getting a third from Mass General/Harvard which ultimately agreed with the first. I had surgery and front-line treatment and have been NED since June 2016.

There are so many new types of treatments but most won't even consider you until front-line has failed. Unfortunately, you may need to get another CT scan to prove that it did fail before they will consider you as a candidate. It is completely a personal decision, of course, but since you already know that you have cancer, it may be worth the risk of one more scan in order to help determine next steps?

Regardless of what you decide, please know that we are here for you and will support you in whatever way we can. Wishing you strength and peace, Kim

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jinkies
Posts: 8
Joined: Sep 2016

My treatment ended 8/4/2016, they took the omentum out when they did the hysterectomy in February and then that is when they found the tumors on it under the microscope. My doctor is a oncologist/hematologist and has not had a mullerian clear cell patient since it is so rare that is why he sent me to Iowa City for a second opinion and they were awful there. I was hoping my doctor would let me get a MRI instead of a CT but he is insisting on a CT even though my insurance was ok with it. He is assuming the chemo worked until we get verification it didn't. Each CT is the equivalent of 100 chest xrays and that scares me because of the BRCA 2 gene my body doesn't repair damaged cells and it sets you up potentially for more cancer. I have not tried calling MD Anderson yet because it will be out of network for my insurance and it is so far away, I live in Illinois. Do you think I will have to get a CT to go any further? I was thinking of trying the Block center in Skokie it will be all out of network but closer to my home. They don't make it easy for you to be a survivor that is for sure. What treatments have you had that worked and do you take supplements or a special routine. I would love to hear your story,

Soup52's picture
Soup52
Posts: 555
Joined: Jan 2016

junkies, where in Illinois do you live? I live in the Peoria area and have a gynecologist oncologist at the cancer center there. He is Salvador LoCoco and is really great.

janaes
Posts: 462
Joined: May 2016

Jinkies,  as i read you post i was thinking about where i am at.  A little behind you.  I have one more chemo left to do which is next thursday.  I have some of the same fears you have.  I am having some back pain that got worse since my hysterectomy and hasnt gotten better so i went and saw my GP and she wants to do a MRI but im thinking of waiting until i talk to my oncoligist because since im close to the end of chemo i wanted to know if he was going to do some sort of scan after.  I didnt want to do too many scans because two of my doctors have said that the radiation that was given me 23 years ago for a different cancer was the cause of my current cancer.  Ive done some research and also know that having no pregnancies also is a risk factor for uterine cancer.  My two kids are adopted and didnt ever get pregnant so i feel that had something to do with me getting uterine cancer also.   I dont know what my doctor thinks yet (i am hoping to find out tuesday) but i do feel if he is okay with it, that some sort of scan would be benifitional for me just so i know. Anyways I hope you find the answers you need as you go forward with your journey. I hope you find a doctor you will like. 

Janae

Editgrl's picture
Editgrl
Posts: 865
Joined: Jun 2015

Janae, if you're scared of radiation, the MRI is actually a better choice because it does not use radiation to generate the images, unlike CT or PET scans.

janaes
Posts: 462
Joined: May 2016

Thank you so much for your reply Editgrl.  I remember telling my GP on monday that i wanted to use the least amount of radiation as possible because two of my doctors told me that is what caused my cancer.  I think it was at the very least because of one other reason as well since i have done some research.  Anyways maybe that is why she chose to do an MRI not a CT scan. I hope so. 

jinkies's picture
jinkies
Posts: 8
Joined: Sep 2016

MRI'S are perfectly safe they use no radiation they use magnets and have no side effects so you can have that done with no worries it is th CT'S that expose you so much radiation so avoid them if at all costs if you can. One CT exposes you to the amount of radiation of 100  chest xrays. I would do the MRI and have it done of your pelvic region and you don't have to wait till the end of treatment your so close to the end it is not going to make a difference and that way you can avoid the after chemo CT  that oncologist tend to order. I have read those risk factors also but I got to tell you I don't think the pregnancy thing is that big of a risk factor I had my first daughter at 20 and my other 2kids at 28 and 30 and here I am with cancer. I do know that radiation is proven to damage cells and cause cancer and your doctor is probably right about that. My mother had uterine cancer and she had 6 kids so there you go. Thank you for reaching out and keep me updated. Sally

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jinkies
Posts: 8
Joined: Sep 2016

I live in the sterling/rock falls area so I am about an hour and half away from Peoria. What cancer center do you go to. I never thought I would find someone so close that has this rare cancer cell type.

Soup52's picture
Soup52
Posts: 555
Joined: Jan 2016

It is the Illinois cancer care center right in Peoria, Il on route 91. If you have been to the shops at Grand Prairie, it is on the same road. My doctor is originally from Texas and is in high demand. He is the one my gynechologist recommended and referred me to. The center is independent and not associated with any particular hospital, so maybe it would fit in your insurance plan.

Kvdyson's picture
Kvdyson
Posts: 702
Joined: Jan 2016

Hi Jinkies, I'm not sure about you having to get a CT to go further but if it is required, then your doctors should be willing to go over all the risks/rewards with you so that you can make an informed decision.

As for me, I was diagnosed with stage 1b, grade 3, uterine MMMT in September 2015. Surgery was TAH & BSO, 14 lymph nodes excised, 10.5 cm tumor removed. My treatment was 6 rounds of chemo (Ifex/Mesna/Taxol) with 28 external radiation treatments "sandwiched" between the 3rd and 4th rounds of chemo. 

I finished treatment at the end of May 2016 and have been NED since June 2016. Side effects of treatment were minimal and easily managed. My gyn-onc had sent a piece of the tumor out for testing with various chemo meds and the Ifex/Taxol combo was most effective in the petri dish so that is why he went that route with me. The test is called ChemoFx by a company called Helomics.

Besides calcium + vitamin D, I don't take any supplements or eat any special diet. I exercise daily and try to keep a healthy BMI but other than that, I've given up on thinking that I have any control whatsoever over how my cells divide. This is my second cancer diagnosis (the first was malignant melanoma). I have no family history of cancer (except for my mom who smoked and died from lung cancer). I have an appointment with a genetic counselor in November and am hoping that that sheds some light on my predicament.

nempark
Posts: 683
Joined: Apr 2010

Please let us know how you are doing. June

Angelasmom2
Posts: 146
Joined: Jul 2010

My daughter had cancer surgery July 8th on her 38th birthday. The lab report on the tissue after the surgery was undifferentiated/endometrioid. Is that anything like what you are talking about? The cancer was 3c.

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jazzy1
Posts: 1385
Joined: Mar 2010

Don't think that is same as what your daughter shows on her pathology.

MMMT -- malignant mixed mullerian tumor. This is what mine shows with carcinosarcoma in parenthesis. My doc told me yes it's aggressive, but a lot of other cancers are too and people are dong quite well. Honestly, I don't think about it as do what I can with my eating, exercise and vitamins. Don't have time to worry as enjoying life, but great to read about many others who are long time survivors....go girls!!!

Jan

AndyCN
Posts: 2
Joined: Aug 2010

my mom was diagnosed MMMT 1B Feb this year. Reoccurrance was discovered in June and now the tumor has grown very big. She did one round of Ifosfamide and Taxol 2 weeks ago but it's not working out. Wondering if anyone else is in similar situation and knows if any other drug might work?

Was searching online and looks like Avastin may help treat MMMT... Any info is appreciated..

nempark
Posts: 683
Joined: Apr 2010

Hi:Andy I was diagnosed in October 2009 with MMMT Stage 1a. I had total hyst and six sessions of carb/taxol. In remission. I have been using a lot of green tea, ginger, lemons, tumeric and black pepper and also lots of berry juices.I am so sorry that mom had a reocurrence. I am sure the Docs will recommend something that will work for her. May God bless you and mom and help you guys to make wise decisions. Please keep us informed.

dtrmnd2live
Posts: 4
Joined: Sep 2010

Had a Radical hyst, nodes removed and washing on July 23, my 60th birthday. Path results were Stage 1a MMMT no node involvement, negative washings. My surgical oncologist and Radiation oncologist do not agree on treatment. Going for a second opinion to Sloan in NYC next week. I was told that Chemo did nothing for this cancer, but after visiting this site I am thinking otherwise. Had a bad day yesterday after going to the internet and looking up my cancer. My daughter found this site, and I have been encouraged by some of the stories. Would love to hear from you and others. D

nempark
Posts: 683
Joined: Apr 2010

I just wrote you my entire journey but lost it. So I am too tired to write it over again. Real quick, DO NOT GO ON THE INTERNET!!!! I will write you soon. If you would like, because I know how devastated you are you can call me at 201-488-3297 I was there exactly where you are right now. I know how you and your family are feeling. Be well.

sandy_b
Posts: 1
Joined: Jun 2010

Aloha dtrmnd2live! I was diagnosed with 3b MMMT on St. Patrick's Day, 2010. Complete hysterectomy the day after that, and Chemo started on 26 Apr 2010 - for 6 treatments (three weeks apart) which was completed on 23 Aug 2010. I am 51 yrs old. This is a wonderful site, as it makes me feel less alone.

When my hysterectomy was done, they said it didn't spread to my lymphnodes, but there was something near my colon. My Gyn/Oncologist said this type of cancer used to be treated with strictly radiation, then they went for radiation & chemotherapy, and found that chemo worked better than radiation. For the most part, my Chemo treatments were manageable, the fatigue, nausea and loss of appetite became my worst challenges. Treatment was deferred twice because of low blood counts.

I went for my follow-up on 10 Sept 2010 - blood counts are still low, CT scan will follow sometime this month, then my oncologist tells me he is referring me to a Radiology Oncologist for a 'Consultation'. Silly me, thought I could get away with only chemo. I am told that the worst is over (the chemo), but we'll see. My Oncologist said that getting the radiation will not extend my life expectancy, that there will still be a five year window so I am wondering why should I get the radiation.

At any rate, please get your second opinion and do what is best for you. You mention your daughter - I believe since she found this site and has shared it with you, she will be great support for you.

Above all else, HANG IN THERE...they say this is a rare cancer, but there are so many of us out here. I tell myself that since I have something that is so 'rare', I should be special enough to beat this.

caregiveria
Posts: 2
Joined: Sep 2010

My wife has been figthing this for 3 years, she first had stage 3c uterine cancer and had a total hysto. Spelling will not be good so please bare with me. The cancer was 50% thru here urterus and the washing was full of cancer and a lymphnode or two were bad. Then after chemo and radation. Then just prior to here 3 year mark after several months of extreme pain she had a 6-8 cm (grapefruit size) tumor up by her kidney and IVA (arota vein) that was removed with only some sand grane sized pieces on the arota as the DR said it could not be removed. She had 4 rounds of Iflex/something else in the hospital for 4-5 days at a time. She is now getting ready to do 25-28 rounds of radation. They said this time the tumor was mmmt and serious but very treatable. Most of what I read does not sound good but she is a fighter.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

I am so sorry to hear about your wife, but I am glad that you found this site. Wonderful women here who are so supportive and so willing to share their experiences and ideas!

It sounds like your wife has been through a lot and am praying that her radiation is just what she needs to knock off those cancer cells! The radiation is not so bad....I had 28 rounds and did find that as the weeks wore on my fatigue was more intense. Also, some GI disturbance but let the radiologist or the nurse know if there are any problems and they can order something to make this better.

Please keep us posted on how she is doing....and am glad to hear she is a fighter. That will go a long way on her road to recovery!

Karen

DrienneB's picture
DrienneB
Posts: 181
Joined: Aug 2013

Hi Sandy,

How are you doing? I hope you're THRIVING!!

I'm new to this, but a few months ago (year 2013) was the age that you were when you were diagnosed. I was 51 (this past April)  and am now 52, and also staged at 3B. After my hysterectomy, it was known that my tumor had almost fully invaded the myemetrial tissue layer and I also had a pelvic washing that was positive for cancer cells. Clear CT scans and visible lymph node action. I'm just finishing my carbo/taxol regime and am also considering radiation. My doctors are 2 "for" and 2 "against" radiation. LOL! I'm wondering what you decided about that!

Thanks,

jane

kriscan
Posts: 5
Joined: Sep 2010

I have also been recently diagnosed with MMMT. I am 46 and had my hysterectomy/oophorectemy on 7/8/10. Post surgery,I was diagnosed with Stage II carcinosarcoma, my pelvic lymph nodes that were checked all came back negative but my pelvic washings were positive for some atypical cells. My gynocological/oncologist surgeon, my radiation oncologist, & my medical oncologist consulted each other and their associates at Unniversity of Penn Oncology and their recommended treatment for me has been 4 rounds of Chemo (ifosfamide & taxol) to be followed by 5 weeks of external, pelvic radiation and ending with 3 internal radiation treatments.

I too went to the internet for information and was not happy with what I found there. I confronted my doctors with what I found and they stated much of the internet info is old and has been limited by the rarity of this type of cancer. My doctors have been encouraging and have insisted that the treatment plan they have designed for me is to prevent recurrence and to cure me. I have just completed my 3rd round of chemo and I have been very fortunate that I have experiencecd minimal side effects and have been able to continue a, more or less, normal routine of family life and work between my treatments.

I hope some of this information is helpful. Like you, I am just starting this battle with cancer and I too, am looking for all the allies and ammunition I can get to win. Kris

nempark
Posts: 683
Joined: Apr 2010

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

jazzy1's picture
jazzy1
Posts: 1385
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: 683
Joined: Apr 2010

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

nempark
Posts: 683
Joined: Apr 2010

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

nempark
Posts: 683
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: 683
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: 471
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: 471
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

marti968's picture
marti968
Posts: 37
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: 683
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: 683
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: 683
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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