Uterine Carcinosarcoma, any survivors out there?

AWK said:

Good to see this!

I love reading posts from long term Thrivers like you - no matter the type of cancer!  Cheering you on!  Anne

Anne

I like your term Thriver Much better than Survivor.  It says so much more.  I'm gonna adopt it.

apoohneicie said:

Here!

I had stage IV uterine carcinosarcoma and did hysterectomy and chemo, been cancer free since June 2011! My best to your mom.

So glad your here!!!!

Did you have to go thru radiation ??? I have mmmt stage2 grade 3 they did not give me chemo ??? Just starting radiation ! I am in my mid 60's !?!? Any info would be great !! Thanks 

Cats3929 said:

So glad your here!!!!

Did you have to go thru radiation ??? I have mmmt stage2 grade 3 they did not give me chemo ??? Just starting radiation ! I am in my mid 60's !?!? Any info would be great !! Thanks 

I have Stage 2, Grade 3 UPSC

I have Stage 2, Grade 3 UPSC and my doctor hustled me into chemo the day after he installed a port.  I'm 63.  When he thought it was just endometrial cancer, he was in no hurry at all.

Good luck battling this disease!

Take care,

Eldri

Editgrl said:

Cats, another MMMT diagnosis here

I am also surprised that your doctor did not suggest chemo. Even before my hysterectomy after the biopsy when the stage was unknown, chemo was already being mentioned as frontline beause of the aggressiveness and unpredictability of this cancer. I am 2/3 of the way through chemo to be followed by radiation.  However, I think there are some other ladies here, Cleo perhaps, who underwent radiation only.  I believe she is in Australia. It seems that in other countries, chemo is not always the first choice when it comes to this particular cancer.

Chris

Chemo only no radiation

My gyn onc dr said I only needed chemo and no radiation since they removed all the femal parts and had nothing to pin pint to do radation on.  So I just had 6 rounds of Carbo taxol.  4 years later and I am still here NED. trish

txtrisha55 said:

I had the option to go into a

I had the option to go into a trial with either tbe isfosomide taxol or carbo taxol for my treatment but when I took the paperwork and read it to choose it did scare me and my family as one of the side effects of the isfosimide was death.  Why would I put a drug into my body that might kill me while trying to heal me.  I talked to my gyn onc dr and asked her opinion she said just go with the carbo taxol and do not do the clinical trail because there was no guarantee that  at I would get that treatment. So I had six carbo taxol treatments each 1 day but every 21 days and no radiation.  4 years later I am still here with no recurance. Best wishes trish

Congratulations to you trish, 4 yrs with no recurance
I was new to the site, was diagnosed with stage 3 MMMT of uterine. Had a total hysterectomy done on 9/8/2015. Currently under chemo with Isfosimide, just finished round 2. I wished I had read your post before taking chemo.

Anh11364 said:

Congratulations to you trish, 4 yrs with no recurance
I was new to the site, was diagnosed with stage 3 MMMT of uterine. Had a total hysterectomy done on 9/8/2015. Currently under chemo with Isfosimide, just finished round 2. I wished I had read your post before taking chemo.

Ahn, please don't be too hard

Ahn, please don't be too hard on yourself.  I think, "if I knew then what I knew now...." How are you doing??

Loan Nguyen said:

My mom just got diagnosed- Stage IIIC Uterine Carcinosarcoma

Hello everyone,

My mom, 67, was recently diagnosed in March 2016 with Uterine Carcinosarcoma Stage IIIC that spread to two pelvic lymph nodes.  She had an immediate total hysterectomy, also her ovaries, tubes, and cervix removed.  Healed well after surgery!  She's starting chemotherapy this week- Taxol & Carboplatin.  4 rounds total, with pelvic radiation sandwiched between.  My younger brother has Down's Syndrome, and I am ready to fight alongside my mother to beat this cancer.  She's in high spirits to fight as well.

Ladies, any tips of preventing/reducing chemo side effects?  Any tips you wish you knew at the beginning of treatment?  How to keep her positive during bad days?

THANK YOU!  Keep fighting, ladies!

 

Loan

Sorry about your mom. But glad you found us. There is a ton of information on this site.

One in particular you might find helpful is the thread called 'Ladies Going Through Chemo'.  Several of us documented our chemo journey during this past year.  Lots of tips on side effects and prevention.

If you have the time, please read through as many of the topics as possible. And, please feel free to ask anything. Someone most likely will have an answer.  I hope your mom is able to get through the chemo and radiation with minimal side effects!

Love and Hugs,

Cindi

Loan Nguyen said:

My mom just got diagnosed- Stage IIIC Uterine Carcinosarcoma

Hello everyone,

My mom, 67, was recently diagnosed in March 2016 with Uterine Carcinosarcoma Stage IIIC that spread to two pelvic lymph nodes.  She had an immediate total hysterectomy, also her ovaries, tubes, and cervix removed.  Healed well after surgery!  She's starting chemotherapy this week- Taxol & Carboplatin.  4 rounds total, with pelvic radiation sandwiched between.  My younger brother has Down's Syndrome, and I am ready to fight alongside my mother to beat this cancer.  She's in high spirits to fight as well.

Ladies, any tips of preventing/reducing chemo side effects?  Any tips you wish you knew at the beginning of treatment?  How to keep her positive during bad days?

THANK YOU!  Keep fighting, ladies!

 

Welcome, Loan

Hi Loan, so sorry to hear of your mom's diagnosis but glad to hear that she is doing well. I'm also being treated for uterine carcinosarcoma with the sandwich method. My chemo meds are different than the ones that she will be receiving but in general, I would recommend staying hydrated, eating lots of protein and keep moving. Walking helped me bounce back from both the surgery and the treatments. Miralax twice a day helped with the constipation.

I get a Neulasta shot after each round of chemo. That shot can cause bone pain since it helps your body build up white blood cells so I take a Claritin (yes, the allergy medicine - I don't know why it helps) during treatments. The first time I took the shot I had such intense pain in my jaw that I had to take some of the pain meds that were leftover from the surgery. It never got that bad again afterwards.

You didn't specify whether the radiation treatment will be external or internal? Mine was external. Taking probiotics helped keep the diarrhea associated with the treatment at bay. When it did kick-in a few times, Imodium AD was able to control it quickly.

It sounds like your mom has a great attitude already! Just remind her that beating this monster is a marathon and not a sprint. There will be good days and bad days but she can do this! We are all rooting for her!

Wishing you all strength and good health,
Kim

Surgery: TAH & BSO, 14 lymph nodes excised, 10.5 cm - Sept 2015; 47 years old
Dx: Uterine carcinosarcoma (MMMT) Stage 1b, Grade 3 - Sept 2015
Frontline: Chemo (Taxol-day 1 & Ifosfamide/Mesna-days 1-3) - 6 rounds - Dec 2015 - June 2016
Radiation - external, 28 treatments, completed Mar 2016

 

nfisher26 said:

could you share the

could you share the supplements that you suggested my mom is going to be starting chemo same mix as everyone else for clear cell stage 3. found in her groin lymph nodes. thank you

This is an old thread and

RoseyR is seldom on this board anymore as she is healthy and doing well as of last August.  You might search some of her posts from that time for more info. The following is from one of her posts and I hope she doesn't mind me sharing it.  There were subsequent ones that went into more detail as well.  You can search for more posts from her or you might try sending her an email through this site for more info.

I can tell you that I did use ProGreens, Glutamine, Vitamin D, and Melatonin during chemo and had few major side effects.

From RoseyR's post:

What I'd advise your mom is to see an INTEGRATIVE doctors before chemo who will presribe things to protect her against it: 

I was prescribed the following:

fish oil (Finest Pure Fish Oil by Pharmax), 4 tsps a day after meals. 

ProGreens (one scoop in glass of water before breakfast); protects intestines! 

Glutamine (one tsp in glass of water three times a day before meals).  start the day before chemo and continue first two days OF chemo; prevents neuropathy and joint pain as well as mouth sores.

AHCC (a mushroom extract routinely prescribed for all chemo patients in Japan).  Take two three times a day between meals.  Can be expensive; Protocols for Life was the brand I was asked to get; there ARE cheaper versions, however.

Melatonin (work gradually up to 20 mgs a night before bedtime), helps chemo to work better and abets sleep.

Sylibien (one capsule a day with a meal), protects the liver.  Increase to two a day after chemo is finished and then restore antioxidants as well.  

 

carcinosarcoma

Hi I was diagnosed with carcinosarcoma of the uterus stage 3c in October 2011. Spread was to the pelvic and para aortic lymphnodes. I had a radical hysterectomy and removal of all pelvic and para aortic lymph nodes. I had taxol and carboplatin 6 rounds with a further surgery to vagina lump (non malignant which grew during chemo!!!) after 3rd round. (I suffered sever side effects from chemo) Immediatly followed by 30 extended external field radiation and 3 internal brachytherapy. I suffered severe effects of radiotherapy treatment, total obstruction of small intestine 2 months after completing treatment complicated by multiple pulmonary emboli so surgery was delayed 8 months for removal of small intestine. I was fed intravenously for 2 years with a Hickmann Line. I suffer short bowel syndrome, pelvic radiation disease, regular bleeding from my bowel and bladder, peripheral neuropathy, lymphodema in my leg from toes to pelvic and constant lethargy. I had been on Actiq and fentanyl for 3 years for pain but now stopped that with severe withdrawal symptoms. I use hyperbaric oxygen therapy now. I basically had all treatment thrown at me as I was not expected to survive.

I am still cancer free but the cost has been immense. Not many of us survive this disease and there seems to be little current research in this field. Does anyone know of any current research or results?