MMMT Recurrence

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Linda1234
Linda1234 Member Posts: 11
edited February 2015 in Uterine/Endometrial Cancer #1

My Mom was diagnosed with MMMT in Oct 2014 following a laporoscopic robotic hysterectomy that morcellated (and possibly spread) the tumor. After aggressive treatment of 33 rounds of external/internal radiation and 6 rounds of chemotherapy, she had been clear for 2 years. However, over the last month she had been extremely fatigued (which is not her!) and her stomach was extended. She also had stomach pains. Her one year PET Scan was scheduled in March but she moved it up a month due to these symptoms. Today we found out the CT-PET Scan shows the tumor has returned. We are located in Southeast Florida, and hope the doctors here will make the best decisions to treat this very rare and aggressive cancer. Mom thought we had dealt with this and could move on, but always looking over her shoulder. Has anyone else out there had such a recurrence? The doctors say it will likely be chemo and surgery to remove the mass. Does anyone know of what type of chemo or other treatment has proven most effective to treat recurrence? Thank you to those that have been NED for years for all advice to deal with this!

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  • Ro10
    Ro10 Member Posts: 1,561 Member
    #2
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    Linda I am sorry about your Mom's recurrence

    Linda I am not sure if the October 2014 is correct that is above,  or if it should be 2013 since you signed on in Jan 2013.  If it has been more than 6 months since your Mom finished treatment they may use the same chemo she was initially on.  

    But if  it has been less than 6 months since your Mom finished her treatment the doctor will change the chemo your Mom will receive.   Some of the next drugs have been Doxil, Gemzar, and Avastin.  Your Mom's doctor will be able to tell you which drug she will be on.  

    I hope her surgery goes well and the new chemo works for her.  You and your Mom will be added to my prayers.   Take it a day at a time.  In peace and caring.

     

  • It happened to Me
    It happened to Me Member Posts: 206 Member
    #3
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    So Sorry to hear of the recurrence

    I am hoping that this can be treated quickly and the doctors will find the right chemo..  I'm sorry to hear your mom had the morcellation.  I've been reading some stuff on it.  I have UPSC Stage IIIa Grade 3, so it's a rare and aggressive cancer as well.  I hope that you and your mom can stay optimisitic.  This is a great group of ladies.  I hope more with MMMT can help you with your questions. 

    We will be praying.

  • Linda1234
    Linda1234 Member Posts: 11
    #4
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    It happened to Me said:

    So Sorry to hear of the recurrence

    I am hoping that this can be treated quickly and the doctors will find the right chemo..  I'm sorry to hear your mom had the morcellation.  I've been reading some stuff on it.  I have UPSC Stage IIIa Grade 3, so it's a rare and aggressive cancer as well.  I hope that you and your mom can stay optimisitic.  This is a great group of ladies.  I hope more with MMMT can help you with your questions. 

    We will be praying.

    Correction

    Thank you both for your advice and prayers. You pointed out the date. I was incorrect with 2014. Mom was diagnosed in Oct 2012, treated with radiation Dec 2012 and chemo (carbo/taxol) until May 2013. So it has been about 1year, 9 months since finishing treatment. Does that change the advice? Thank you SO much!!

  • Ro10
    Ro10 Member Posts: 1,561 Member
    #5
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    Linda1234 said:

    Correction

    Thank you both for your advice and prayers. You pointed out the date. I was incorrect with 2014. Mom was diagnosed in Oct 2012, treated with radiation Dec 2012 and chemo (carbo/taxol) until May 2013. So it has been about 1year, 9 months since finishing treatment. Does that change the advice? Thank you SO much!!

    Linda

    they will probably go back to the taxol/ carbo since it has been more than 6 months since she completed  her treatment.  At least that is what my gyn/ onocologist recommends.  I Hope it works for her again.  Take of yourself, too.  In peace and caring.

  • Linda1234
    Linda1234 Member Posts: 11
    #6
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    Ro10 said:

    Linda

    they will probably go back to the taxol/ carbo since it has been more than 6 months since she completed  her treatment.  At least that is what my gyn/ onocologist recommends.  I Hope it works for her again.  Take of yourself, too.  In peace and caring.

    Same chemo protocol

    Thank you. They need to surgically remove the tumor, which is 16cm, so hopefully they are able to do that first. Then they will likely have to start chemo, but it could be reverse order. I really appreciate your response. What was your recurrence like? How long have you been NED?

  • Ro10
    Ro10 Member Posts: 1,561 Member
    #7
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    Linda1234 said:

    Same chemo protocol

    Thank you. They need to surgically remove the tumor, which is 16cm, so hopefully they are able to do that first. Then they will likely have to start chemo, but it could be reverse order. I really appreciate your response. What was your recurrence like? How long have you been NED?

    Linda

    I have never been NED.  As soon as I go off chemo my CA-125 begins to rise.  So that means the Cancer is growing slowly.  Then the observation begins.  With my recurrences I have never felt any different.  The CAT scan shows an increase in size of usually multiple lymph nodes.  When the get a certain size I begin chemo again.   But I never feel any different before I start chemo.

    does your Mom have a surgery date yet.  

  • Linda1234
    Linda1234 Member Posts: 11
    #8
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    No surgery date yet. The radiologist who read the scan said it should be soon, but the gynecologic oncologist is out of town for a week. So we're waiting to see him.

     

    Though you're not NED, I'm glad they are able to keep it under control. Same chemo protocol each time? When were you first diagnosed, how many years have they been keeping it at bay?

  • Ro10
    Ro10 Member Posts: 1,561 Member
    #9
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    Linda1234 said:

    No surgery date yet. The radiologist who read the scan said it should be soon, but the gynecologic oncologist is out of town for a week. So we're waiting to see him.

     

    Though you're not NED, I'm glad they are able to keep it under control. Same chemo protocol each time? When were you first diagnosed, how many years have they been keeping it at bay?

    Linda

    I was diagnosed in 1/09 with UPSC stage 3-C.  Initially had taxol/ Carboplatin and 28 radiation treatments.  First recurrence had 3 taxol/ carbo treatments.  Had severe reaction to carbo and switched to taxol/ cisplatin for 4 more doses.  Second recurrence had 6 more taxol/ cisplatin treatments.  Third recurrence had 10 SBRT ( stereotactic body radiation treatments......like cyber knife) to a lymph node near trachea.  The intense radiation did shrink that lymph node, but unfortunately a lymph node in my abdomen is getting larger so there will be more taxol/ cisplatin in the future.  

    No chemo since 5/12.  I have bee on Aromasin since 7/12.  It has slowed the Cancer growth.

  • AWK
    AWK Member Posts: 364 Member
    #10
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    Sending prayers and hugs

    I was diagnosed in April 2013 with UPSC Stage IIIC, second opinion had me at Stage IVa.  Like Ro, I have never been NED.  I have six rounds of Carbo/taxol following my surgery (all ladies parts and pelvic lymph nodes).  Then 28 topical radiation and three brachytherapy.  Five mets were found at my first three month checkup all spread out, inoperable and irradiatable.  They could only biopsy one safely.  Then three rounds of Doxil, more progression and am now being treated with Avastin every three weeks.  My disease is considered stable at this point.  Although the doctors continue to look for clinical trials we all agree that I will stay on the Avastin as long as possible since it keeps me stable (For now).  The goal is to make my cancer, like others, more like a chronic disease that I can live with.  And live I do!  I work fifty plus hours per week, ride horses, walk my dogs and make new memories with my friends and family.  I feel well although a little tired.  I have learned many things from my cancer and one is to live more fully which I do.

    keeping you and your mom in my prayers Anne

  • Teamkelly
    Teamkelly Member Posts: 63
    #11
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    Linda,

    Linda, I am so sorry to hear about your mom this is a devastating illness. My sister-in-law was diagnosed with carcinoma sarcoma (MMMT) in September 2012. She was stage III C and had surgery and carbotaxol as her treatment. She was cancer free for a year and then had a recurrence in her brain she had several tumors that were treated first with surgery and second with the cyber knife.

    Five months later she had another recurrence she has tumors in her lungs and one in her stomach she was then treated ifosamide and I think another chemo drug. With in a very short period of time she had another recurrence of this horrible disease, her doctor told her there was nothing else he could do.  She has been going to a clinic in Santa Monica, CA for the last 8 months. They use one thing and when it quits working they try something else. She just found out it is in her brain again and will have CyberKnife next week to try to eliminate those again, she is also on her 2nd experimental treatment for the tumors in her lungs and stomach, those tumors had shrunk but now are growing again.

    Linda one thing the doctors at this clinic have told her is that there is no cure for carcinomasarcoma, they will help her fight as long as she wants to fight but it is only to control the cancer, not to cure it.

    i wish you and your Mom the best, Kelly is a very unusual person with a strong will to live and a high pain threshold, she still works out between treatments when she is not sick and never complains about anything. Kelly is a very strong Christian and has accepted that this is her cross to bear and gives God all the glory. I am sorry I don't have more encouragement for you, but I have walked this journey with her from the time she was diagnosed and I have done endless hours of research and I will tell you anybody who says they can cure this disease is not telling the truth.

    i am enclosing the name of the clinic Kelly goes to, her insurance does cover this, I believe ther is something similar in Tennessee, she sees Dr. Chalaw (sp).  http://sarcomaoncology.com/

    God bless you,

    Nicki

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