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Best Mom in the world Newly Diagnosed with carcinosarcoma of the uterus ( MMMT)

JMoses
Posts: 7
Joined: May 2012

My Mom is 70 years old and perfectly healthy until about a month ago. She experienced what she thought was the start of a kidney infection then progressed to sharp stabbing pains in her left side, lower abdomen and kidney area. After a urinalysis and then work up including CT of the abdomen a week or 2 later, her internist found a large uterine mass with significant lymph node involvement (several up to 4cm). She was told to see a gynocologist right away, luckily we were able to get her seen within a few days. Within a week after that, Mother's Day 2012 we were admitting her for urgent surgery due to the pain. Our new gynoncologist (having just met him less than 1 week prior) removed a 8 cm mass, radical hysterectomy, appendix, multiple lymph nodes. He told us it was stage III and that it was rare. Now, Post surgery her abdominal wounds are healing nicely; she is slated for chemo June 19th. I am reading these posts and thankful for the the American Cancer Society and all of the survivors - dlustrous1, jazzy1, roseyr, susanna23 and many more I am sure. I just kept saying to myself I want to talk to the survivors. I want to find out how others have beat this; see Mom can beat this MMMT crap. We live in Michigan. Our doctor is Douglas Pugmire at Karamonos Cancer Institute/Crittenton Hospital. We have faith and hope for a good outcome after the first phase of 6 months with chemo. I am not sure what chemo so I will post again. Keep my super mom, Sara in your prayers. Thank you J

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

JMoses,

Sorry to read about your mom's diagnosis and know you've come to a great place for guidance. As you noted, quite a few of us are fighting the same type cancer as your mom, MMMT. Yes it's very, very aggressive, but I can tell you I'm stage 3C, 3 years NED (no evidence of disease) and still here. All I can tell you, follow a great OB oncologist advice and if you don't feel it's what you're looking for, don't hesitate...get a second opinion. This cancer we have to fight hard and fast....as I had 6 rounds carboplatin/taxol combination, plus sandwiched in middle 33 rounds of external pelvic radiation (my cancer only found in 1 lymph node in pelvic area).

With your mom having good health to start, that will give her strength to endure the treatments, as what my oncologist told me. There's not a lot of updated research on this type cancer, so when you look at statistics they're doom & gloom. What we all have learned to do, fight the fight as if this were our last effort in life.

Is her doc following the CA125 tumor marker? Mine started at pre-cancer diagnosis all the way thru treatments and today post treatments. This marker can be followed with me as was well over 500 and after each treatment consistently came down and after to today in same range 4-6. Many can't follow as it might start at 12 pre treatments and not make much of a change. Ask her doc about this CA125 as could possibly be another guide for her.

The best thing you can do for your mom, be there for her...if not in person during chemo sessions, call her and visit...let her know you're pulling for her all the way and don't ever give up. Life is precious and if we can keep the patient positive and strong that's half the battle. Positive attitude plays a huge role in getting thru this disease and as a patient it's even more difficult to keep on a smiling face.

FYI I'm on another message board for this cancer and you'd be amazed how many women are seeing no recurrences and 4, 5 and 6 years NED. Keep the faith and know you and your precious mom are in my prayers.

CANCER IS NOT A SENTENCE, IT'S A WORD!!
Jan

JMoses
Posts: 7
Joined: May 2012

Jan,
Thanks for the encouraging words. My mom's CA125 was 15 prior to surgery and drawn just a couple of weeks pre-cancer diagnosis. Please share the other message board info. I would like to keep as connected as possible. Thanks for sharing your treatment plan; it is hard to find information on who is the best at treating this since it is so rare.
This week we are trying to manage post surgical pain, constipation, diarrhea and possible side effects of pain medication/ trying to rule out potential hospital acquired infection. Its hard trying to stay on top of things. My mom doesn't like to "pop pills" for everything...what other choices do you have to stay on top of things.
Best regards,
J

JMoses
Posts: 7
Joined: May 2012

oops duplicate

RoseyR
Posts: 464
Joined: Feb 2011

I too had diagnosis of uterine carcinosarcoma (stage IB) and two years after diagnosis and six rounds of chemo (taxol and carboplatin) plus 25 external pelvic radiation sessions, am feeling GREAT. This doesn't mean I won't have a recurrence with the next year; it just means that since finising all treatment last August, I've been fine.

If you send me your home email by emailing me at the upper left of our site here (send to RoseyR), Icould attach a letter I sent to a friend's aunt who was facing chemo and very fearful about it. I tell her what my integrative doctor prescribed during chemo to mitigate the effects.

I hope it gives you some ideas on how to approach treatment with less fear; not everyone has horrible side effects. (I did lose my hair but beyond that, had virtually no visible side effects throughout all treatment: no nausea or even fatigue. My blood counts did fall low after fourth round of chemo but gradually bounced back.

Feel free to contact me via email (RoseyR) if you have furthr questions.

Best,
Rosey

Susanna23
Posts: 66
Joined: Dec 2010

Dear JMoses and Mum Sara
Thank you for reading my posts about MMMT.
I was diagnosed with uterine carcinosarcoma Stage 1a in November 2010 (after initial pathology revealed a grade 3 cancer). I had total hysterectomy, removal of many lymph nodes and analysis of washings. My oncologist offered six rounds of carboplatin and taxol beginning January 2011 so it's around a year since that finished. I didn't have any side effects from chemo save for hair loss and restless legs. I have been feeling fine ever since
Like Jan and Rosey, I'm interested in nutrition and psychological approaches. I will never be able to prove that it has helped me beat the cancer (and it's only a year, officially! lots of checkups to come) but I have felt very well.
But Sara is probably focusing now on how to get through chemo - long-term plans can be deferred. During chemo I drank lots of water with pomegranate/cranberry/lemon - I wanted to take supplements but hospital pharmacist advised not to (because there is some evidence it interferes with chemo). I ate what I fancied and I made sure to take a walk every day - after a couple of treatments I resumed swimming twice a week. Even though I opted for chemo before I'd even left my consultant's room (she gave me a couple of weeks to decide) I was dreading it...but I think they do manage it well these days with supplementary meds given on the day and after - I worked all the way through treatments - only thing I changed was not to go out much on days when I knew blood counts would be low, so as to avoid infection (which can escalate). I took my temperature every morning and wrote it down (also crossed off the day cos I found it helpful to have a 'countdown' to last treatment!)
Hope this helps - please do get in touch if you have any more questions. Btw I am based in London - this site has been so helpful, not least because I have found treatment for this is similar around the world.
Best regards
Susan

JMoses
Posts: 7
Joined: May 2012

My Mom asked for Hospice on Saturday following her kidney stent replacement Thursday ( a very horrible day for her); the only thing keeping her alive (we later learned). Tuesday, my Dad and brother and I went to meet with her doctor to learn of the CT results. The cancer spread to her liver and re-occurred (maybe never left) in her lymph nodes in her abdomen, around colon and around her kidney's. She went peacefully with family by her side on Wed 10/24/12. I am so very sad. Hugs, jules ( I hope not to visit this site again - peace and prayers to you all!)

debrajo's picture
debrajo
Posts: 790
Joined: Sep 2011

I am so very sorry for your loss, dear! I'm from the Uterine board, but check in here to see what is going on. I know you will miss her all the days of your life, but let it be a good memory of your mother's courage and strenth that brings a smile to your face. Please don't come here for a "need", but do come here to say hi once in a while! Peace and comfort to you and all the family, Best, Debrajo

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

So sorry for the loss of your sweet Mother. "All mothers die too young!"

May happy memories comfort you. With sympathy and prayers for you all, Mary Ann

txtrisha55's picture
txtrisha55
Posts: 426
Joined: Apr 2011

The passing away of a parent and your Mother at that can be a tramatic event. My mother passed over 20 years ago. I still miss her. May your memories and family and friend surrond you with support at this time. Praying that God holds you all in his arms during this time. trisha

ConnieSW's picture
ConnieSW
Posts: 621
Joined: Jun 2012

Jules, I am so sorry. Thankyou for letting us know. I am glad that your mom was able to make her own decisions at the end and it was peaceful. I think that, and having our loved ones with us, is what we all want most. Our births are witnessed and I think it's nice if our leaving can be, too. May your memories comfort you.

Connie

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