MMMT complications (met @ bone)

2

Comments

  • 8Cloud
    8Cloud Member Posts: 4
    edited September 2018 #22
    Dealing with Mom’s Diagnosis

    Hello everyone. I want to start by saying thank goodness for all of you because as I struggle to wrap my mind around my mom’s diagnosis  I am comforted and encouraged by your journies. You all are so brave and selfless to share your stories in an effort to help others. 

    My mom was diagnosed with MMMT in July and immediately started chemo (taxol) the first two rounds went relatively well and then she had a bad allergic reaction to the third so the started her on Carbo which did nothing but make her sick. Now she is dealing with ascites (fluid in the belly) which was drained twice but since it keeps accumulatin, she had a catheter So that we can drain daily at home. We also have to do at-home hydration because she can’t keep food down. She has lost so much weight from not being able to eat. 

    Today she had an appointment where the doctor scheduled her for a new chemo treatment starting tomorrow. I really hope this one takes. I don’t want to get discouraged even though I’m so scared. My mom is 59 and this time last year she was an energetic, vibrant lady full of life. She said she’s going to fight no matter what. I hope she keeps that fighting spirit. I’m rooting for you all. Keep fighting the good fight!

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    8Cloud said:

    Dealing with Mom’s Diagnosis

    Hello everyone. I want to start by saying thank goodness for all of you because as I struggle to wrap my mind around my mom’s diagnosis  I am comforted and encouraged by your journies. You all are so brave and selfless to share your stories in an effort to help others. 

    My mom was diagnosed with MMMT in July and immediately started chemo (taxol) the first two rounds went relatively well and then she had a bad allergic reaction to the third so the started her on Carbo which did nothing but make her sick. Now she is dealing with ascites (fluid in the belly) which was drained twice but since it keeps accumulatin, she had a catheter So that we can drain daily at home. We also have to do at-home hydration because she can’t keep food down. She has lost so much weight from not being able to eat. 

    Today she had an appointment where the doctor scheduled her for a new chemo treatment starting tomorrow. I really hope this one takes. I don’t want to get discouraged even though I’m so scared. My mom is 59 and this time last year she was an energetic, vibrant lady full of life. She said she’s going to fight no matter what. I hope she keeps that fighting spirit. I’m rooting for you all. Keep fighting the good fight!

    Our sister

    Your mom is our sister and we have welcomed her in to our fold and will be praying for her and you. Try to take one day at a time. We are all with you in spirit. 

  • janaes
    janaes Member Posts: 799 Member
    edited September 2018 #24
    8cloud welcome to our group.

    8cloud welcome to our group. Im sorry you have to be here but its a great place for sopport. Thanks for sharing your journey with us. I too hope your moms next chemo works. I was diagnosed with MMMT uterine cancer stage 2 grade 3 may of 2016. Sounds like youand your mom are doing what needs to be done. 

     

  • 8Cloud
    8Cloud Member Posts: 4
    edited September 2018 #25

    Our sister

    Your mom is our sister and we have welcomed her in to our fold and will be praying for her and you. Try to take one day at a time. We are all with you in spirit. 

    Thank you CheeseQueen

    We all know how vital support is. I need all I can get. i so appreciate your prayers and I continue to pray for all of you.

  • 8Cloud
    8Cloud Member Posts: 4
    edited September 2018 #26
    janaes said:

    8cloud welcome to our group.

    8cloud welcome to our group. Im sorry you have to be here but its a great place for sopport. Thanks for sharing your journey with us. I too hope your moms next chemo works. I was diagnosed with MMMT uterine cancer stage 2 grade 3 may of 2016. Sounds like youand your mom are doing what needs to be done. 

     

    Hang in there Janaes

    i Hope today brings you closer to healing. It just sucks that you have to go through this. What’s crazy is that I didn’t know there were grades to this Until I joined this group. No one ever told us the stage or grade of my mom’s MMMT. I feel like I really don’t want to know. What I do know is that according to the doctor the disease is such that he doesnt think it would be amenable to surgery. So with surgery off the table, im really hoping this chemo does what it needs to. she is going through so much and I feel helpless. 

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    8Cloud said:

    Hang in there Janaes

    i Hope today brings you closer to healing. It just sucks that you have to go through this. What’s crazy is that I didn’t know there were grades to this Until I joined this group. No one ever told us the stage or grade of my mom’s MMMT. I feel like I really don’t want to know. What I do know is that according to the doctor the disease is such that he doesnt think it would be amenable to surgery. So with surgery off the table, im really hoping this chemo does what it needs to. she is going through so much and I feel helpless. 

    8Cloud

    8Cloud, You are a blessing in your Mother’s life no matter what. She needs your optimism and encouragement in small and quite ways as she fights her cancer. 

    Please know I am keeping you and your Mother in my prayers dear one....

    You need to remember to take care of yourself in order to help and care for your Mom. It is so hard to be the daughter when you also have to be the advocate and caretaker. 

    I also took care of my Mom when she had uterine cancer which she did not survive. Please remember there is always hope despite the survival predictions. 

    Peace and grace, 

    Lori

  • 8Cloud
    8Cloud Member Posts: 4
    edited September 2018 #28

    8Cloud

    8Cloud, You are a blessing in your Mother’s life no matter what. She needs your optimism and encouragement in small and quite ways as she fights her cancer. 

    Please know I am keeping you and your Mother in my prayers dear one....

    You need to remember to take care of yourself in order to help and care for your Mom. It is so hard to be the daughter when you also have to be the advocate and caretaker. 

    I also took care of my Mom when she had uterine cancer which she did not survive. Please remember there is always hope despite the survival predictions. 

    Peace and grace, 

    Lori

    Darling Lori

    Im so very sorry for your loss. You’re amazing to reach out to others as you grieve. I’m sitting in my mom’s hospital room watching her struggle and my heart is breaking apart. I don’t want to eat because she can’t eat. My brain knows I have to take care of myself but my Emotions are focused on her. I have no appetite. My stomach is in knots. This has become one big waiting game. This chemo feels like our Hail Mary half-court shot. It truly is in God’s hands. 

    Thank you so much for your Prayers and kind words. It is getting me through this difficult night 

  • pato58
    pato58 Member Posts: 120 Member
    Hello 8Cloud,

    You really are a loving and compassionate daughter.
    Your mom and you are in my thoughts and prayers.
    Take care!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,351 Member
    edited September 2018 #30
    8Cloud, my heart breaks for

    8Cloud, my heart breaks for you.  Your mother certainly raised a loving daughter.  Don't hesitate to be her advocate when she can't be one for herself.  

  • derMaus
    derMaus Member Posts: 558 Member
    8Cloud said:

    Hang in there Janaes

    i Hope today brings you closer to healing. It just sucks that you have to go through this. What’s crazy is that I didn’t know there were grades to this Until I joined this group. No one ever told us the stage or grade of my mom’s MMMT. I feel like I really don’t want to know. What I do know is that according to the doctor the disease is such that he doesnt think it would be amenable to surgery. So with surgery off the table, im really hoping this chemo does what it needs to. she is going through so much and I feel helpless. 

    Hi 8Cloud,

    Hi 8Cloud,

    I'm a Grade 3 (undifferentiated) and Stage IIIC myself. I've had a lot of treatments - and an entirely new type of cancer - since my diagnosis in November 2016 but I'm here, on immunotherapy, and feeling pretty good. Your mother is down but far from out, so hang in there. You are in my prayers. 

  • ConnieSW
    ConnieSW Member Posts: 1,676 Member

    8Cloud, my heart breaks for

    8Cloud, my heart breaks for you.  Your mother certainly raised a loving daughter.  Don't hesitate to be her advocate when she can't be one for herself.  

    Hi 8Cloud

    i hope things are better for your mom. Please tell her she has a lot of women she doesn't know rooting for her. 

  • Shawnhrsn
    Shawnhrsn Member Posts: 6
    edited October 2018 #33
    Thanks for this

    You are all so wonderful for taking the time to post and encourage many. My mom received the MMMT diagnosis Monday. We made an appointment at the cancer treatment center in Zion, Il.

  • janaes
    janaes Member Posts: 799 Member
    Shawnhrsn,  welcome to our

    Shawnhrsn,  welcome to our forum. As we say im sorry you have to be here but am glad you found support. This is a great place to find that.  Two and a half years a go i found this place and found much love and support. I was diagnosed with MMMt uterine cancer stage 2 grade 3. I have been done with treatments in november it will be two years. I wish your mom the best as you guys go forward.

  • Shawnhrsn
    Shawnhrsn Member Posts: 6
    edited October 2018 #35
    Thank you

    Thank you Janaes for the well-wishes. It means alot

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    Shawnhrsn Mom’s newly diagnosed

    I am sorry you are having to deal with all that is to come with your Mom’s diagnosis. Just having an appointment at a cancer center starts the journey to fighting this awful disease. 

    There are so many daughters of mothers who have some type of uterine cancer... It reminds us all that cancer strikes families and not just the individual in so many common ways. 

    As I reminded 8Cloud, please try to take care of yourself so you can help your Mom. You are under more stress than you may realize. Remind yourself that you are strong and resilient and try to stay focus on dealing with one day at a time. 

    Lori 

  • SandyD
    SandyD Member Posts: 130
    MMMT resource and hope

    Hi wynterpeak,

    I was also diagnosed with uterine MMMT (also called carcinosarcoma). I was fortunate to be diagnosed with an early stage although still had to deal with a recurrence which was treated. I am now NED and it's been 3 years since my initial diagnosis. I want to let you know about the MMMT Facebook group. It is quite large (now at about 700 members). It is open to family members as well as MMMT patients. The group has been maintaining statistics over the time the group has been in existence and there are members, including those with stage 3 or 4, who are long term survivors (10 years or more). Because of the size of the group it is a good place to go to learn about different treatments and followup care since there are women who have experience with a wide range of treatments. Hoping for the best for you and your mother. 

  • Shawnhrsn
    Shawnhrsn Member Posts: 6
    SandyD said:

    MMMT resource and hope

    Hi wynterpeak,

    I was also diagnosed with uterine MMMT (also called carcinosarcoma). I was fortunate to be diagnosed with an early stage although still had to deal with a recurrence which was treated. I am now NED and it's been 3 years since my initial diagnosis. I want to let you know about the MMMT Facebook group. It is quite large (now at about 700 members). It is open to family members as well as MMMT patients. The group has been maintaining statistics over the time the group has been in existence and there are members, including those with stage 3 or 4, who are long term survivors (10 years or more). Because of the size of the group it is a good place to go to learn about different treatments and followup care since there are women who have experience with a wide range of treatments. Hoping for the best for you and your mother. 

    Thank you

    Thank you for telling us about the Facebook group! Survivors of 10 years or more! Wow! My mom had a hysterectomy yesterday. It was contained in the uterus. We are awaiting the pathology reports to see if what type of treatment is suggested.

  • wynterpeak
    wynterpeak Member Posts: 12
    edited October 2018 #39
    hey everyone. 

    hey everyone. 

    today i received confirmation (well, basically that looking at MRI scans) that it's bone mets, in a spot on the spine. the doctor has restated a year's time left for her and has mentioned giving up on chemo and making the most of her time left because in her words "stage 4 cancer is incurable".  i don't know what to think 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,351 Member
    Wynterpeak, I am sorry to

    Wynterpeak, I am sorry to hear this news.  Has your mother been told and what is it she wants to do?  

  • wynterpeak
    wynterpeak Member Posts: 12

    Wynterpeak, I am sorry to

    Wynterpeak, I am sorry to hear this news.  Has your mother been told and what is it she wants to do?  

    heya, 

    heya, 

     

    my mother took the news extremely badly (we just got it this morning). she has been crying a lot and i genuinely don't think she's capable of making any plans for the near future. 

    another thing we were told is that right now, at least, she is responding very well to the chemo treatments so far. so having the doctor talk about giving up just because it's "no cure in sight" just feels wrong. if it will prolong her life, i am going to discuss continuation of treatment