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MMMT

madhura
Posts: 21
Joined: Aug 2010

Hi all,
Firstly i want to say a million thanks to all the lovely people on this website - which i referred to at every stage of my mum';s diagnosis and treatment.

My mum was diagnosed with uterine carcinosarcome (MMMT) in late May. She has a total hysterectomy in early June. Oncosurgeons were very happy that it was stage 1A - in fact he went to the extent of saying - No further treatment. We were quite happy. The medical oncologist called us for follow-up after 3 weeks. After about 10 days after surgery, my mum started feeling breathless and pain in the back. The breathlessless increased a lot, hence we consulted the oncologist and found out that she had pleural effusion - cancer had spread to her lungs. I was very disappointed(though no one including my mum would have guessed that from my face). I very much had and have the hope and faith that whatever it is - it's going to be cured.

CT scan confirmed the spread. She has had 3 cycles of chemo (carbo-taxol) soon after and yesterday we got the report. There is marked improvement in the status and the oncologist seemed very happy. He has advised 3 more cycles and a scan after that.

I am being very positive and I am sure that the next scan will give even better results. I wanted to post this as I know that there will be others on this forum who will pray for my mum's recovery and give me words of encouragement.

The main concern I have now is that she gets pain in her bones - back and shoulders, sometimes chest. While i think this is a side-effect of chemo, and the oncologist also thinks that this is because of the chest drain that was inserted to remove fluids a month ago. I am wondering if we should get a bone scan done. Please let me know your views.

nempark
Posts: 683
Joined: Apr 2010

Hi Madhura: So sorry to hear about mom. This is the first time I have come in contact with someone else who had the exact same cancer as I did. I was diagnosed in October 2009 and had surgery in November. Previous Gyn told me that I would not need any further treatment. But my Gyn/surgeon did all the tests over and after a total hyst including omentum ovaries lymph nodes and the works told me that to be on the safe side he would recommend 6 sessions of chemo. Last chemo was in March. I am now 6 months in remission. I am surprised that your mom's doc did not recommend chemo in the first place, because this is a very aggressive and rare cancer. Anyway, I am sure that the chemo will work and she will have a speedy recovery. The pains I am sure is from the side effects of the chemo. Do not forget that mom had a very major operation and even though it is very common these days it is still a very serious operation and can take a toll on the body, not forgetting the shock she must have suffered after her diagnosis. I have been taking a lot of herbs and also having a mixed berry drink every day. I use a lot of ginger, tumeric, lemons and tons of fruits. Please keep in touch and let us know how mom is doing. I would really appreciate this because I do not have much correspondence with much people who have this same type of cancer. I will keep mom in my prayers and I hope you do take care of yourself also. Looking forward to hearing from you. I send you and mom much comfort. june

madhura
Posts: 21
Joined: Aug 2010

Thanks June for your kind words.

Well done for going through the chemos - I am glad that you are in remission after the chemos and will pray that you remain so forever.

Thanks for the diet suggestions, I will implement them too for my mum. She was having wheatgrass juice for a while now but has stopped due to nausea. Apart from the regular diet, the doc has recommended 2 eggs daily along with a fistful of dry fruits! It's quite a lot for her but that's bcoz she's lost >10kgs post operation.

I will be in touch.

Wishing you good health!

madhura

nempark
Posts: 683
Joined: Apr 2010

I couldn't sleep so I was browsing the board. I was given a recipe from one of the lovely ladies on the Board for a lemon drink. I blend a lemon (peel it) with a piece of ginger the size of the lemon and about a tablespoon of olive oil with a teaspoon of tumeric and a touch of blackpepper with three cups of water blend it as smooth as possible. I drank this every day and from what I heard it is a great antioxidant. I also blend ginger and set it in a bottle and use the liquid to make my tea (japanese green tea is the best). Absolutely no sugar for mum, cancer feeds on sugar also milk. There is no limit to these concoctions. Guess what I did not lose a pound of my appetite. LOL. Keep up your spirits my love and try as much as possible to accept the situation and learn how best you can make mum comfortable and happy. These are the trials we have to face in life and God has given us the ability to endure. Please again, take care of your self also. I send you big hugs and give mum a hug for me. by the way how old is mum. I am 60 and feels very young. Tell her also to expect to lose her hair, but as soon as she finishes her chemo, it will start growing in a couple of weeks and she will be truly amazed. All the best for you and mum. June

madhura
Posts: 21
Joined: Aug 2010

It sounds yum! I will surely try it for mum.
Mum turned 61 this August itself. We had celebrated her 60th last year and had never imagined things will change so much within a year.
I am the only child, I have a 17 month old daughter and she is my mum's biggest motivation to recover and get back to normal.

Mum has lost almost all her hair and I admire her as she isn't a bit conscious about it. She is a doctor herself which I am not sure is good or bad in these circumstances.

I think we will be consulting her onco-surgeon tomorrow as the back pain is getting unbearable even with a pain patch and pain-killer tablets.

I hope you get some good sleep now and wake up to a fresh morning!

P.S. 60 is very young!

Love,
madhura

nempark
Posts: 683
Joined: Apr 2010

Hi. I did get a really good sleep. Of course, I took a pill and had five hours not too bad. Why do I have the feeling that you are Indian. My mom was Indian from Guyana South America. I am so sorry about mom's pains. I think the Hyst can cause those pains. I have been taking motrin and sometimes it helps. Don't forget the green tea and if possible let mom see a herbalist. They work. Before you know it her hair will grow back, that is the least of our problems right now. Is there a dad? I know how mom feels about her grandchild, I have older one and I was more devasted for them more than myself. Mom is going to be fine. I send you much love and comfort. Let mom know there are other out there and we are rooting for her. Soon she will look back and see how brave she really is. June

madhura
Posts: 21
Joined: Aug 2010

Thanks June. Guess what - mum will be having the lemon-ginger juice frm today.
I have lost my dad so it's pretty much me and my hubby to care for my mum. We have other relatives who do help out however it is different.

Yes, I am an Indian. Back to India from London where we lived for 5 years. So glad we moved back last year.

Lots of luv.

sue K
Posts: 18
Joined: Apr 2010

Hi Madhura
I had the same as your mum - MMMT or uterine carcinosarcoma. I had a total hysterectomy last June to remove a large tumour. The pathology results showed that it was MMMT. The cancer was at stage 1c, and I then had chemotherapy- carbo and taxol, followed by radiotherapy. I finished these treatments last October. Since then I have been suffering a lot of joint and bone pain, but so far ct scans have shown that my cancer has not spread. However, I have recently been suffering more pain in my back and my oncologist has suggested I have an MRI scan to check things out. I am waiting for an appointment for this scan.
I was interested in June's suggestions for recipes and may try them out.
I hope your mum improves- she is lucky to have a caring daughter, as I know because family support is so very important.
God bless you all
Sue

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

I too have MMMT, but don't dwell on it as really didn't know what it was until someone here mentioned that yes it's aggressive....just handle it the best we can.

I too had chemo and radiation as completed mine July '09 and been NED since. I've found to be so much stiffer in joints as do lots of exercising and as much stretching with yoga as I can fit in per day. I've had constant pain in my lower back and my oncologist has assured me not cancer. Turn out after a few docs looked at me and heard my pain issues told me YOU HAVE ARTHRITIS. Great I'm officially old!!!!!

Visiting my radiology OB this coming month as we'll get some test to see what's going on. If you read in other areas of this site you'll find so much of our aches and pains are after affects from chemo and radiation. Radiation in pelvic area just dries up our joints, which is most of the pain.

Also, you'll read in various postings about nutritional supplements and good anti-inflammatory foods which help our pain. Luckily mine is getting better as found the jumping and pounding from running was my culprit....boohoo! Stopping running is like taking my facial products away...horrifying!! But...pain is much less so well worth it.

Hang in there, life is good~
Jan

Christina1001
Posts: 9
Joined: Sep 2016

i stumbled upon this convo while researching my mothers diagnosis. It has spread. We are scared and we don't know what to expect.  Anyone?

brissance's picture
brissance
Posts: 192
Joined: May 2016

Lots in that question.  Many have recurrences and spreading and live long lives.  The disease can become like a chronic disease, similar to a disease like diabetes.  The down side is they often continue treatment and monitoring for the rest of their lives but there is a rest of their life.  It is not necessarily a death sentence.  Get more info as to where it has spread and what the suggested treatment will be.  Some of the ladies here are very knowledgeable in this area. They are dealing with the issue as we speak.  So I understand the initial panic, each of us have been there during this journey.  But recurrence and spread are a stage of the disease and so often can be treated.  Have faith.  I am sure one of the ladies will be able to give you more and better info.  God bless. Patty

 

Christina1001
Posts: 9
Joined: Sep 2016

There is "activity" in nodes, peritoneal areas of abdomen and pelvis, right common iliac... Ureter.  She will be starting chemo on Tuesday. The meds will be Ifosfamide and Paclitaxel. 3 days a weeks, then off for 3 weeks.  3 rounds total.  Any information or experience would be so greatly appreciated! 

 

Thank you

Christina1001
Posts: 9
Joined: Sep 2016

There is "activity" in nodes, peritoneal areas of abdomen and pelvis, right common iliac... Ureter.  She will be starting chemo on Tuesday. The meds will be Ifosfamide and Paclitaxel. 3 days a weeks, then off for 3 weeks.  3 rounds total.  Any information or experience would be so greatly appreciated! 

 

Thank you

armyjjg8790's picture
armyjjg8790
Posts: 2
Joined: Jul 2016

Are there any survivors 5years or more? I've just started this journey.  Diagnosis, March 1, of this year.  I've had a total hysterectomy with lymph nodes, some were positive. 93%uterus was cancerous, cervix and pelvic were affected. I was staged with Caecinosarcoma ,stage 3C1, grade 3. I have successfully finished six rounds of chemo and gained 14 pounds. I will be going through radiation soon. I'm so afraid about a recurrence which both my oncologist have told be would most likely happen with me.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Armyjjg8790, yes, there are posters here who have MMMT and are 5-year survivors. There are also some on the Facebook and Yahoo MMMT groups. Congrats to you on completing front-line treatment. Don't worry about the weight gain at this time. That can be dealt with once you have reached NED. At this time, just stay focused on eating well so that your body can heal from treatment and fight off any recurrence. Please consider starting a new post if you have any questions or would like to share your journey with us. We hope that we can help support you! Wishing you strength and peace, Kim

janaes
Posts: 800
Joined: May 2016

Christina, Im sorry to hear about your mom. I too was diagnosed with carsinosarcoma (MMT)  back in May of this year.  Yes I was scared too. I didnt want it to be true.  I did not want to have to do chemo at all.  I had done it before  20 years earlier and didnt want to do it again.  After finding this board i wasnt feeling so alone and was able to finally come to terms with it.  It was hard though.  It is okay to have your feelings but make sure you find a place to share them.  I find hope in knowing that others have gotten to a point where there was no evidence of desease.  One lady just shared that she was 5 years NED and it gave me hope.  I am currently doing chemo I wll be on my last one in two weeks.   

With hope that all this turns out grat for you guys, Janae

Christina1001
Posts: 9
Joined: Sep 2016

thank you for your response ❤️ Hope all turns out well for you too!!

janaes
Posts: 800
Joined: May 2016

Sorry i meant great not grat.

Christina1001
Posts: 9
Joined: Sep 2016

We know the diagnosis isn't good... praying for for A miracle.  Does anyone know of any other support resources? Or is there anything you may have done that you found helpful?  She starts her second go at chemo Tuesday.  This time it's more intense. I just want to know what I'm looking at... The unknown is the worst part.  I just wish there were answers... Thanks to everyone 

janaes
Posts: 800
Joined: May 2016

There are other women on this board that have MMT that know more than I do.  It might be helpful for you to start a new thread.  Just title it MMT and say you need answers. It think that might help because it will be easier to find for them.  I remember I Had to do that.  I will be praying for you as you go through this hard time.  There is also an Yahoo MMT support group.

https://groups.yahoo.com/neo/groups/UterineMMMT/info

Hope that helps

Janae

Christina1001
Posts: 9
Joined: Sep 2016

thanks I took your advice and started a new thread.  Really appr your help!

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

specific to carcinosarcoma.    https://groups.yahoo.com/neo/groups/UterineMMMT/info

https://www.facebook.com/groups/carcinosarcoma/

At least one of the ladies here with carcinosarcoma also had ilfosfamide and taxol as her frontline chemo.  Hopefully, she will be along soon.  However, one thing I do know is that Mesna is often used in conjunction with ilfosfamide to protect the bladder.  Is your mom getting that as well?  If not, that's something you may want to ask your doctor about.

I was diagnosed with carcinosarcoma Stage IIIC a little over a year ago.  I went through 6 rounds of carboplatin and taxol and 3 rounds of brachytherapy.  I am currently NED.  

A woman on this board recommended the book "Anti-Cancer"  by David Servan-Schreiber to me shortly after my diagnosis.  I found it very helpful and have used many things recommended in the book as guidelines regarding diet, lifestyle, etc.  It gave me a chance to be in control of some things, when so many things about this disease are out of our control.

Hang in there and don't give up hope.  Dealing with this disease truly is a marathon and not a sprint; we are all in this for the long haul.

Christina1001
Posts: 9
Joined: Sep 2016

thanks so much for your response 

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