Uterine Carcinosarcoma, any survivors out there?

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  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
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    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.

  • Editgrl
    Editgrl Member Posts: 903 Member
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    Here!

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

    I love hearing this

    As a Stage III uterine carcinosarcoma thriver still in treatment, your story gives me so much confidence and strength.  Way to go!  

  • Cats3929
    Cats3929 Member Posts: 1
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    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 

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
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    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 

    Cats, I'm surprised that you did not receive

    chemo for a grade 3 - i.e., aggressive cancer. Did your doc suggest it?

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
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    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
    Editgrl Member Posts: 903 Member
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    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 

    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

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
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    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

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
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    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

    I wondered about that

    My doctor recommended the six rounds of chemo with "possible radiation."  I wondered what he was going radiate - LOL!  All my lady parts are gone and the CT scan showed no other tumors.  Maybe he's waiting to see IF a tumor develops he can go after it??

    I hope I'm you in four years!!!  You are my inspiration!!

    Take care,

    Eldri

  • Anh11364
    Anh11364 Member Posts: 3
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    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
    Anh11364 Member Posts: 3
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    Here!

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

    Here, thumb up for you

    Thumb up for you! Continu the good work,

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,447 Member
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    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
    Loan Nguyen Member Posts: 1
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    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!

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
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    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

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
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    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!

     

    I'm so sorry about your

    I'm so sorry about your mother but she is lucky to have you fighting along side her.  Chemo side effects are varied.  There are some women on this board who just sailed through it while others had severe side effects.  There is a lot of information on this board which can help your mom get through this.

    Keep us updated - we all care!

    Love,

    Eldri

  • Kvdyson
    Kvdyson Member Posts: 790 Member
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    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
    nfisher26 Member Posts: 2
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    RoseyR said:

    Sorry to Hear

    Clare,

    If your mother is being treated with taxol and carboplatin, you might scroll through any of my comments (all by Rosey R, made between November, 2011 and now) about supplements that might help to prevent PN (peripheral neuropathy) and other side effects of this chemo regimen.

    Let us know what treatment has been prescribed for her.

    Wish I had all my comments in one place but am pretty tired right now and have to sign off after hours on the computer. I also just made some comments about what I ATE while on chemo; it's the first new topic on the discussion board. Also commented on how to make turmeric and curcumin (which your mom should take!) more effective.

    May have more time to write more later.

    Best,
    Rosey R

    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

  • Editgrl
    Editgrl Member Posts: 903 Member
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    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.  

     

  • TexasTillie
    TexasTillie Member Posts: 1
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    cathyK said:

    any survivors out there
    hello
    I was diagnosed with stage 4b grade 3 endometrial cancer total historectomy in june, then in july got chemo, cisplatin andromisn and taxol given every 3 weeks, 2 days of chemo
    no radiation. ended chemo end of october, first 3 month exam is no cancer detected. I have spent a long time trying to find long term or even short term survivors with this stage of endometrial cancer and also have not found any , so guess I will try to be on here, saying Im still here , still around.
    how is your mum feeling now?
    cathy

    serous carcinoma

    Cathy,

       Let me know how you are.

    TexasTillie

  • Actiquser
    Actiquser Member Posts: 3
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    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?

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
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    Actiquser said:

    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?

    You are

    a most amazing woman.  I can't imagine not being overwhelmed by what have gone through and are going through.  My hat is off to you and i welcome you to this group.