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Charweaver47 – Please see this post regarding uterine carcinosarcoma (MMMT)

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

Your new post was to a very old, very long thread. I've started this new topic for you so that others can see it and respond more easily.

I was diagnosed with Stage 3B carcinosarcoma (MMMT) in 2016. You can read about my cancer experience by clicking on my username under my profile photo.

Since MMMT is a rare form of uterine cancer, there aren't a lot of women with it here at the moment. But the treatment protocol is similar to other grade 3 uterine cancers like UPSC or clear cell.

Here is a link to a MMMT discussion that occurred right before you joined this board and covers several issues:

https://csn.cancer.org/node/322409

And as I commented in that discussion, there is also a Facebook page for those with MMMT at https://www.facebook.com/groups/carcinosarcoma which I believe is quite active.

I hope this gives you an easier starting point than the old thread.

Please let us know if you have questions or comments about upcoming treatments or post-treatment matters.

LouDy22's picture
LouDy22
Posts: 25
Joined: Apr 2021

Mom is presumptive stage 4b , she just finished her 3rd neoadjuvant chemotherapy and is in great spirits and feels 100x better amd back to playing tennis and working out so we are hoping the chemo did its job to shrink the tumor because before the chemo she couldn't even walk , she will be scanned on July 6 and praying to god the tumor shrunk enough for her surgery , our Dr is optimistic and also said to ignore the internet and that everybody's body is different and even though being cured is out of the question our hope is long term remission , I will keep you posted with this rare , aggressive cancer but there is always hope 

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

Thanks for the update about your mother. I hope that her scan next week shows good results, but it's great to hear that she's feeling so much better regardless. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Thanks for the update LouDy22. Sounds like your Mom is responding to the chemo. Wonderful! And, you sound so much better now too! You are right, there is hope. Looking forward to hearing about her scan next week!

Love and Hugs,

Cindi

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2913
Joined: Mar 2013

Thank you for stopping back and letting us know, Lou!

Prayers for her and the whole family.

LouDy22's picture
LouDy22
Posts: 25
Joined: Apr 2021

i don't understand, mom is about 3 weeks past her third chemo session and has been handling it so well and we were very excited for her , I get off the phone with her after my daily morning checkup and she says she feels like she got run over by a truck , flu like symptoms , chills and extreme body aches , is this normal with chemo ? Is it that the cancer is not responding ? I can't even focus at work today because it pains me to see my mom in such discomfort, I am an only child and I am a very emotional guy lol I even cry during Disney movies 

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

I hope your mom has called the doctor with her symptoms. You mentioned that she had been playing tennis, working out, etc. Is it possible that she picked up a bug from someone else during this time? Our resistance is much lower during chemo, so catching an infection can hit us harder than it might normally.

ConnieSW
Posts: 1576
Joined: Jun 2012

I hope your mom is doing better. Give her our best wishes and update us when you can..

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RainbowRita
Posts: 51
Joined: May 2021

I felt like that about a week after my third round of chemo. Ended up at the ED and got admitted as they were concerned I was getting septic. Ran a bunch of tests and decided it was a combination of side effects from the chemo (low BP, fast heartrate) and dehydration. Bloodwork showed no signs of infection. I had something similar when I started chemo again a few weeks ago. But that one wasn't as bad, no fever this time around and wasn't as shaky. Mostly dizzy and light-headed. So could just be that, or she could also have have an infection brewing. Anytime there is a fever it should be checked out and if she was experiencing chills, she could have also have had a fever. Hopefully she is doing OK now.

LouDy22's picture
LouDy22
Posts: 25
Joined: Apr 2021

It's with a broken heart to say that moms checkup after her 3 chemos did not go well and she has been sent to UNCW for a second opinion , the primary tumor has shrunk by more then half but now there has been spread and she now needs a stent in her bladder, I don't know what else to say

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

So sorry to hear about the setback.   Sending hugs.

Molly110
Posts: 192
Joined: Oct 2019

I am so very sorry. What a comfort it must be to her to have such a wonderful, loving son.

 

Molly

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

So sorry to hear this LouDy. I'm hopeful the second opinion will bring you a new plan. Please let us know what you find out when you are up to posting again.

Love and Hugs,

Cindi

LouDy22's picture
LouDy22
Posts: 25
Joined: Apr 2021

Just dropped dad off for his AAA surgery , got off the phone with chapel hill and I am at moms oncologist now making sure they fax everything over NOW , she has an appointment today for pain management and tomorrow for her compressed urethra , she can't go to the bathroom and she's in so much pain , I still can't believe her dr said there's nothing more they can do

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

I'm very sorry to hear this latest news. Several women here had to have a ureteral stent. While they can be bothersome, it should help relieve some of the pain she's experiencing. I hope the stent and other methods her doctors can use will get her pain under control right away.

This is such as trying period for you and your family having to deal with your father's surgery and your mother's condition at the same time. Your love and care of your parents is so important to them right now.

Maxster
Posts: 89
Joined: Apr 2020

Hello LouDy22, I am saddened to hear about your mom.  It is wonderful that you can be of such support for her right now.  Remember to take care of yourself a bit too.

ConnieSW
Posts: 1576
Joined: Jun 2012

Please know I have been thinking about you and your mom and hope things are going as well as they can. 

LouDy22's picture
LouDy22
Posts: 25
Joined: Apr 2021

I still can't believe my mom went from working out , riding bikes and playing tennis and chasing my kids around the yard just 3 weeks ago to a frail , hunch back always tired and in pain old lady , she had stent put in and that went well , now we are just waiting for our second opinion at chapel hill scheduled for thursday

alicia2020
Posts: 162
Joined: Sep 2020

I haven't commented here before because I don't have as much knowledge specific to your mother's situation as many of our friends here. I do want to offer by love and support. I'm so sorry all of you are having to go through this. Your parents are very lucky to have you.

I was primary caregiver for the last 14 months of my father's life as he died a little every day from Alzheimer's. Very tragic. I was teaching at the time and my friends knew what we were enduring, and once someone said to me, "OMG! I can't believe you're here today! Why aren't you at home taking care of yourself??" I said, (with a smile) "Are you kidding me? Being here is like being on vacation!" My point is....I've been where you are and it's a lot of really bad things...exhaustion, desperation, and excruciating sadness, just to name a few. Many evenings I laid on my bed by myself and cried. You must try to take care of yourself, also. I saw a counselor and she helped me a lot. Try to do things to maintain your health. Maybe try to perceive work as a place to give yourself some emotional relief. Allow the distraction to give you an emotional break!

And I'll say this.....you may be thinking you would love to have some siblings that might be able to help. Histirically, one child is the responsible one and the others skate on by, living their lives as if nothing is happening. I can't tell you how many times I wished I didn't have them. All they did was anger & upset me and generally made it all worse! You might just be better off making all the decisions and doing the work by yourself.

And every day I am able to know that I did the best I could. I was there for him. I did the right thing. I fought like the devil for the best medical care. I spoke for him when he couldn't do it for himself. Please allow the knowledge of these things about yourself and your efforts to comfort you. Everyday for the rest of your life you will be glad you did what you're doing now.

Love and prayers to you and your parents,

Alicia

 

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