My Mother has UPSC uterine cancer - Scared

jen36
jen36 Member Posts: 10
in Uterine/Endometrial Cancer #1
Hi All,

My mother was diagnosed with stage 3 UPSC in Jan. 2012. Tonight, I am in her hospital room wondering if she will make it through the night. She went through 3 rounds of carbo/taxol and it did nothing...cancer still progressed. They gave her a treatment of doxorubicin a few weeks ago, and I believe that's what has just about killed her. She has kidney dysfunction, blood clots in both legs (and possibly still in lungs), her body from the waist down is extremely bloated, she has ascites (abdomen is very distended) full of fluid. They drained 4 liters of fluid out of her stomach a few days ago.

She's called my sister and I to be by her side as if she won't make it much longer. I feel so lost and confused about this. Just a few months ago she was very much alive and vibrant. I stayed with her during the hysterectomy in January and was so hopeful that the chemo would work. but it seems it made things worse.

I really just wanted to talk about this. I'm the older sibling and I'm supposed to be the strong one...everyone keeps saying. So, I guess I'm not allowed to show real emotion so I can be "strong".

My mother is african-american btw. I don't think there are any black women on this board with upsc. Black women have the poorest prognosis also. So, if there's anyone out there who has had success with this type of cancer and stage, please let me know.

Comments

  • debrajo
    debrajo Member Posts: 1,095 Member
    #2
    Really sorry about your mama...how old is she? I have UPSC also, was diagnosed at 1a, grade 3(I think...long story). Does she have any other serious medical problems? You come here, to this board, to show emotion, fear, anger, anything you want if you think it will help. Have they done radiation? Even though my was less serious than your mama's I had six rounds of taxol and carboplatin and five rounds of internal radiation. I don't know about the African-American ladies on this board...some of us don;t put up pictures. but I was told that Jewish women and African women SEEM to have a slightly higher case of UPSC that other women. Stop paying attention to "everyone"! If we all didn;t cry sometimes we'd all blow up! Be as strong as you can for your mama and be good to yourself. Wishing you and yours peace and confort and a better report the next time we hear from you. Best, debrajo
  • jen36
    jen36 Member Posts: 10
    #3
    debrajo said:

    Really sorry about your mama...how old is she? I have UPSC also, was diagnosed at 1a, grade 3(I think...long story). Does she have any other serious medical problems? You come here, to this board, to show emotion, fear, anger, anything you want if you think it will help. Have they done radiation? Even though my was less serious than your mama's I had six rounds of taxol and carboplatin and five rounds of internal radiation. I don't know about the African-American ladies on this board...some of us don;t put up pictures. but I was told that Jewish women and African women SEEM to have a slightly higher case of UPSC that other women. Stop paying attention to "everyone"! If we all didn;t cry sometimes we'd all blow up! Be as strong as you can for your mama and be good to yourself. Wishing you and yours peace and confort and a better report the next time we hear from you. Best, debrajo

    My mom is 67. Her birthday
    My mom is 67. Her birthday is next month. She was in a study using herceptin in addition to carbo/taxol. However, they checked her CA125 and it appeared that the chemo wasn't doing anything so they took her out of the study and gave doxorubicin...which must be one of the harshest most toxic ones out there. They said they wouldn't give radiation. I think she's too weak and has too many existing health problems now.

    She was in a hospital in her home state last week. They had written her off. Told my sister and I that we should have a family meeting to talk about the end of life. They talked to us with the worst attitude. Keep in mind, my sister is a doctor. We had her doctor there discharge her and drove her 4 hours to my sister's town. So, now she is getting better care. However, I feel like something went wrong somewhere and now that the damage has been done, it seems like everything is falling apart with her.
  • paris11
    paris11 Member Posts: 159
    #4
    jen36 said:

    My mom is 67. Her birthday
    My mom is 67. Her birthday is next month. She was in a study using herceptin in addition to carbo/taxol. However, they checked her CA125 and it appeared that the chemo wasn't doing anything so they took her out of the study and gave doxorubicin...which must be one of the harshest most toxic ones out there. They said they wouldn't give radiation. I think she's too weak and has too many existing health problems now.

    She was in a hospital in her home state last week. They had written her off. Told my sister and I that we should have a family meeting to talk about the end of life. They talked to us with the worst attitude. Keep in mind, my sister is a doctor. We had her doctor there discharge her and drove her 4 hours to my sister's town. So, now she is getting better care. However, I feel like something went wrong somewhere and now that the damage has been done, it seems like everything is falling apart with her.

    My Prayers
    Hi Jen,

    My prayers are with you and your Mom and your family.

    Love,

    Connie
  • Cindy Bear
    Cindy Bear Member Posts: 569
    #5
    Hi Jen
    I am so sorry to hear about your Mom. Just wanted to say I will be keeping her and you in my thoughts and prayers. I am sure other ladies will chime in soon. As far as strength goes, You'll find the strength you and your sister need to get through, no matter what happens. As a good friend told me one time, "You never know how strong you are, until you have to be"
    Big hugs,
    Cindy
  • jen36
    jen36 Member Posts: 10
    #6
    Cindy Bear said:

    Hi Jen
    I am so sorry to hear about your Mom. Just wanted to say I will be keeping her and you in my thoughts and prayers. I am sure other ladies will chime in soon. As far as strength goes, You'll find the strength you and your sister need to get through, no matter what happens. As a good friend told me one time, "You never know how strong you are, until you have to be"
    Big hugs,
    Cindy

    Thanks for all of the
    Thanks for all of the prayers and well wishes. I feel like I'm on a roller coaster ride. You never know what's going to happen day-to-day. I'm realizing more and more just how strong I am.
  • jazzy1
    jazzy1 Member Posts: 1,379
    #7
    jen36 said:

    Thanks for all of the
    Thanks for all of the prayers and well wishes. I feel like I'm on a roller coaster ride. You never know what's going to happen day-to-day. I'm realizing more and more just how strong I am.

    Life!
    Who told any of this path in life would be easy. In fact,God didn't write a book on how our life would pan out, therefore, we have to roll with the punches. In some instances like yours, the punches are very strong and non-stop.

    So saddened to read of all your dear mom is going thru. If I only had a magic wand to make it go away, I really would, but don't my friend. Be there for your mom and advocate all the way. There is always hope, as you need to hang onto that word daily.

    Keep asking for other options as all it takes is a new option for treatment and your mom could be up and running again.

    Your mom is so lucky to have her family right next to her during her tough times. Without family the journey is so difficult.

    Peace be with you and I'll keep you all in my prayers!!
    Jan
  • light42day
    light42day Member Posts: 62 Member
    #8
    jazzy1 said:

    Life!
    Who told any of this path in life would be easy. In fact,God didn't write a book on how our life would pan out, therefore, we have to roll with the punches. In some instances like yours, the punches are very strong and non-stop.

    So saddened to read of all your dear mom is going thru. If I only had a magic wand to make it go away, I really would, but don't my friend. Be there for your mom and advocate all the way. There is always hope, as you need to hang onto that word daily.

    Keep asking for other options as all it takes is a new option for treatment and your mom could be up and running again.

    Your mom is so lucky to have her family right next to her during her tough times. Without family the journey is so difficult.

    Peace be with you and I'll keep you all in my prayers!!
    Jan

    Will pray for you and your Mom
    Jen,
    I'm really sorry for what you and your Mom (and all of your family) are going through. There's always hope as long as there's life. I think that only God knows when our time on earth is over. I'm glad she's in a hospital where she's getting better care now. That's really important. I'll keep all of you in my prayers!
    Peg
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #9
    light42day said:

    Will pray for you and your Mom
    Jen,
    I'm really sorry for what you and your Mom (and all of your family) are going through. There's always hope as long as there's life. I think that only God knows when our time on earth is over. I'm glad she's in a hospital where she's getting better care now. That's really important. I'll keep all of you in my prayers!
    Peg

    jen
    Hi Jen,

    First of all, I am so sorry about your mother. There's no way to prepare for this type of news. I have upsc also since age 61 - now 3.5 years and 2 recurrences later. It's a nasty thing to have.

    If you are near Boston I would recommend seeing Tom Tam for Tong Ren therapy, a Chinese energy healing practitioner. They also offer FREE group sessions available via teleconference. You just call in - there are directions online at tongrenstation.com. I believe in this energy healing and have friends that have experienced healing and seen first hand miraculous things happen. I am going there in July.

    The book Getting Well Again by O. Carl Simonton also may help - he is MD that worked with end stage cancer patients and the book teaching guided meditation techniques. Maybe your mom would be willing to do this and she can - even from her bed.

    I can only offer my prayers and best wishes to you and your mom and everyone. Please allow yourself to grieve - you are not required to be "strong". I remember how I felt when my dad was nearing end of life and NO ONE was honest with me except my friend who was a nurse. Doctor's are trained to heal and when they can't I think they get "off kilter".

    Hugs and prayers to you. Mary Ann
  • jen36
    jen36 Member Posts: 10
    #10
    daisy366 said:

    jen
    Hi Jen,

    First of all, I am so sorry about your mother. There's no way to prepare for this type of news. I have upsc also since age 61 - now 3.5 years and 2 recurrences later. It's a nasty thing to have.

    If you are near Boston I would recommend seeing Tom Tam for Tong Ren therapy, a Chinese energy healing practitioner. They also offer FREE group sessions available via teleconference. You just call in - there are directions online at tongrenstation.com. I believe in this energy healing and have friends that have experienced healing and seen first hand miraculous things happen. I am going there in July.

    The book Getting Well Again by O. Carl Simonton also may help - he is MD that worked with end stage cancer patients and the book teaching guided meditation techniques. Maybe your mom would be willing to do this and she can - even from her bed.

    I can only offer my prayers and best wishes to you and your mom and everyone. Please allow yourself to grieve - you are not required to be "strong". I remember how I felt when my dad was nearing end of life and NO ONE was honest with me except my friend who was a nurse. Doctor's are trained to heal and when they can't I think they get "off kilter".

    Hugs and prayers to you. Mary Ann

    Thanks Mary Ann. Were in
    Thanks Mary Ann. Were in Virginia, but I will try to get her to do the group session. Thanks for the prayers as well.
  • Royce1
    Royce1 Member Posts: 24 Member
    #11
    I Understand
    Hello Jen,

    First of all let me offer my condelences to you and your family for the loss of your Mom. I am African American and my Mom has UPSC also. She is stage 1A and found out about her diagnosis back in December. I have been searching since December for other African American women who suffer from this rare disease because like you stated, we have the worse pronosis. My Mom has Chronic Kidney Disease and acquired two small blood clots in her lung too. We seem to have a lot in common, it's unfortunate it's in these circumstances. Your Mom was lucky to have a caring daughter like you. May the Lord continue to comfort your heart.
  • jen36
    jen36 Member Posts: 10
    #12
    Royce1 said:

    I Understand
    Hello Jen,

    First of all let me offer my condelences to you and your family for the loss of your Mom. I am African American and my Mom has UPSC also. She is stage 1A and found out about her diagnosis back in December. I have been searching since December for other African American women who suffer from this rare disease because like you stated, we have the worse pronosis. My Mom has Chronic Kidney Disease and acquired two small blood clots in her lung too. We seem to have a lot in common, it's unfortunate it's in these circumstances. Your Mom was lucky to have a caring daughter like you. May the Lord continue to comfort your heart.

    Thank You Royce1
    I am praying for your mother. It sounds like her cancer was caught early. I am learning now that my Mom may have had her symptoms for a while before she told anyone. It breaks my heart. Honestly, I am really having trouble trying to cope with her being gone. It's so hard.

    But, I want to be here to support everyone in their struggle. My prayers are with everyone affected by this disease.

    Please keep in touch with me Royce.
  • Royce1
    Royce1 Member Posts: 24 Member
    #13
    jen36 said:

    Thank You Royce1
    I am praying for your mother. It sounds like her cancer was caught early. I am learning now that my Mom may have had her symptoms for a while before she told anyone. It breaks my heart. Honestly, I am really having trouble trying to cope with her being gone. It's so hard.

    But, I want to be here to support everyone in their struggle. My prayers are with everyone affected by this disease.

    Please keep in touch with me Royce.

    Hey Jen!
    Thanks so much for your prayers for my Mom! She is finished with her chemo and her oncologist wants her to see a radiation oncologist. She had an appointment last week and cancelled it because she said, "I just sick of doctors!" I know I can't force her to go, but I would like for her to at least consult with a radiation oncologist just to see what he recoommends. Anyway, I hope all is well with you. I know it's hard with the loss of your Mom. I'm an only child, so I can just imagine. Lean on your family for strength and your faith. May the Lord continue to comfort your heart! We'll keep in touch! I think we need to be advocates for our Moms and get the word out to family members and friends about this terrible disease, most people have never even heard of it!

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