Pain and Poor Outlook But I will fight for her! - Serous Carcinoma

tcwrw3
tcwrw3 Member Posts: 2
edited July 2018 in Uterine/Endometrial Cancer #1

Hello Everyone. I have been quietly reading for a few months now while my mom undergoes treatment for UPSC. My 59 year old mother was diagnosed June 2017 and has been undergoing treatments since she got the news.

  • May postmenopausal bleeding lead her OB to do some testing. No other symptoms
  • Biopsy and Diagnosed with UPSC July 2017 stage 1b
  • Total Hysterectomy (from my understanding no lymphnodes removed)
  • Carbo and Taxol Chemo treatments- lead to low blood counts, hospital stays, and some very bleek days. Scariest crap ever. 
  • CT scan showed cancer in lymphnode
  • Doxil chemo started. Milder in regards to side effects. Hair grew back. Less down days, except for horrible UTIs
  • Blood work before chemo showed CA 125 numbers heightend in late may 2018
  • Extreme constipation lead to hospital stay and a colostomy was performed,
  • Doctor to try Topotecan when strength is in better shape. I believe he said she was stage 3 now but i try not to consume myself in the stage/ stat game. It just makes me worry. I asked about immunotherapy like Keytruda but Doc said it doesnt work for the type of cancer she has.
  • takingcontrol58 offered some great advice on boosting her immune system but i'm having trouble getting my mom to buy in to try. 
  • Since the colostomy in early June- leg swelling, kidney infection, UTIs, side and back pain, and now vaginal bleeding.
  • Appt 7/3/2018 scheduled I will ask about Metformin and Keytruda again. 

I am trying to remain strong for my mom as she is my world but I am also quite shocked she is going through all of this when she had no symptoms at all. Ive mentioned to her cleaning up her diet, trying to get into using some herbal treatment like black seed oil and tumeric which were approved by her doctor. But everything has her sad. It just breaks my heart. 

Not sure what I am asking for here. I think I really just wonder if anyone else dealt with the vaginal bleeding and if they ever got any relief. We have a follow up appointment 7/3/2018 and I'm hoping he can help and offer a glimmer of hope. Prayers have been going up abundantly but not so certain he hears me. I am by her side and trying to remain as positive as I can. I think the bleeding has taken her over the edge. Not only did it just start out of no where, its like a constant reminder that there is an ugly bully inside of her. 

Any recommendations? Any ideas? Good questions for the doc? Anyone experienced the bleeding even after a hysterectomy a whole year later?

All in all. Thanks for the outlet you women are strong as titans. 

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Comments

  • Jairoldi
    Jairoldi Member Posts: 221 Member
    #2
    Thinking of you

    Good evening,

    I read your post earlier today but didn't respond as I couldn't answer your questions. I'm sure someone will be along soon that may have experienced what your mom is going through. I do know how unsettling it is to not have answers.I am an almost 59 year old mom and know that my daughter did not agree with all of my decisions. What I do know is that she loves me and only wants the best possible outcome. It means a lot to know that and I'm sure your mother knows that about you. We all have to take along our own paths and that's not easy on our loved ones either. May you both find your way that uplifts and encourages both of you. 

  • Armywife
    Armywife Member Posts: 451 Member
    edited July 2018 #3
    He Hears!

    My first impression upon reading this is to encourage you that your prayers are heard.  Keep praying!

    I am the same age as your mom.  I can tell you it's easy to get depressed and sad in the face of all this, and I can't even imagine with the colostomy and swelling on top of chemo and surgery.  It's been a rough year for all of  you. Does her health care team include someone (not family) with whom she can process some of this?  Or even better, does she have a pastor who could encourage and support her?

    Medically, my first question for you would be this - have you considered getting a second opinion as far as her treatment and diagnosis?  

    Blessings on you for all the research and for walking beside your mama on this journey.  My daughter lives thousands of miles away, and I miss her support.  Though she may not want to take all of your suggestions, I know she appreciates the love behind them!

  • Soup52
    Soup52 Member Posts: 908 Member
    #4
    I’m so sorry to hear that

    I’m so sorry to hear that your mom is having such a rough time. You being there for her is so important and I, sure she is greatful for it. On Keytruda- I’m no expert on this, but wonder if the drs have looked at her genetic mutations. I think that might indicate if immunotherapy could help. Also, I had a friend try Keytruda. Unfortunately it did not work and did have unpleasant side effects. Prayers for your mom and hope they find a solution for her.

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    edited July 2018 #5
    Supporting your Mon

    Your Mom May know more about her cancer and treatment/prognosis than she is sharing with you. She may not want to burden you any more.  A second opinion is likely your best option. Try to get the second opinion from a large cancer center and not a community hospital. The GYN/Onc doctor should sit down with you and your Mom and clearly articulate and explain the treatment protocol and rational. There is a thing in healthcare called informed decision making and evidenced based medicine. Your Mom’s doctor needs to know that you and your Mom would like to make an “informed decision” based on “evidence based protocols” in order to feel like your Mom is getting the best individualized treatment plan.  Your Mom’s cancer spreading is likely showing through the symptoms of lower extremity swelling and bleeding. Just being there for your Mom is a blessing to you both. Peace and light...

    Lori

  • Little Annie
    Little Annie Member Posts: 28 Member
    #6
    Herceptin

    My wife had some spotting,  D&C showed UPSC,  after hysterectomy, determined to be stage 3A with overies involved, 6 cycles of taxol and carboplatin, 27 radiation treatments.   So she just had her first treatment of Herceptin.....so my only thought to you is....have your tumor tested for over expression of HER2/neu to see if Herceptin treatment is right for you.

  • ezbitz
    ezbitz Member Posts: 4
    #7
    Myn niece's docs are

    Myn niece's docs are suggesting this to her; she can't keep her food down and constipated. 

    She is a 4b and it seems like the recurrence is causing all this.   i am scared shitless for her. 

    But like you I am determined to fight for her as well.  If a colostomy is what it would need then so be it. 

    I will include you and your family in my prayers.  

  • Littleone22
    Littleone22 Member Posts: 10
    edited July 2018 #8
    First I’m so sorry you’re

    First I’m so sorry you’re going through this.  It is really hard  to watch someone you love go through this. 

    Your story of sound so similar to what my mother-in-law is going through with a few differences. She has stage 4 UPSC. She has had the same treatments and almost the same complications including a colostomy. She developed severe constipation issues and a bowel blockage After 2 abdominal surgeries related to the cancer and many rounds of internal radiation. When she Couldn’t keep her food down and then developed a fistula on top of it and was leaking stool through her private parts they Had no choice but to do a colostomy.  Now that we are a few months out from that  it has improved her quality of life As she is no longer constantly in the hospital with her bowel blockage issues. She still has other issues including constant UTIs and kidney issues  

    Regarding treatments, she is currently on Keytruda. Only two months so we don’t know if it’s working yet. It is not approved for her type of cancer But the doctor was able to get it from the drug company through compassionate use program. She has stage four and all of the treatments have failed. We also looked into herceptin but her tumor gene testing (by foundation one) didn’t show it was an option. She also tried Avastin but it didn’t work for her (you might look into those options). Some here have also had luck with Metformin but her oncologist Wasn’t willing to try that one.  

    I hope that she is feeling better soon and that you find a treatment that works for her. 

    Hang in there! 

     

     

  • pinky104
    pinky104 Member Posts: 574 Member
    edited July 2018 #9
    UTI's

    I'm a stage IVb UPSC, eight years out from my original surgery and one year out from my second one for a recurrence.  I didn't have the bleeding since the surgery, but I did have a lot of UTI's.  I had a cystoscopy during my first chemos in 2010 to make sure I didn't have an unusual opening between the urethra and the vagina or the rectum, and I didn't.  I got a lot of UTI's during chemo, which I think was probably because my white blood cell count was down from my chemo, which was Carboplatin and Taxol.  The white blood cells couldn't fight off the infections as there weren't enough of them to do it.

    A couple of years ago, my urologist recommended I try taking D-Mannose for my recurrent UTI's, 2 grams a day, as it helps the bladder flush out infections.  I bought some online and they didn't work for me.  However, after that, I bought D-Mannose with Cranberry at GNC, and that's been working pretty well.  If I feel an infection coming on, I pop a couple of extra pills, and they work.  I take 2 500 mg. capsules in the morning and 2 more at night.  These might be worth a try for her.  I'm sure she feels rotten all the time from these.

  • Armywife
    Armywife Member Posts: 451 Member
    #10
    tcwrw3 said:

    My mom earned her wings on

    My mom earned her wings on July 21, 2018. She had a stroke and after a few scans the cancer had already taken over. She was such a fighter and I thank God for her love. I miss her so bad it aches. I pray all of you have much success in your journeys and that you kick this cancers butt! 

     

    i created a website to honor her if you would like to view it www.celebratingcelesta.com

     

     

     

     

     

    Hugs to you

    Thank you for letting us know.  Praying for you right now as you miss her.  

  • cmb
    cmb Member Posts: 1,001 Member
    #11
    tcwrw3 said:

    My mom earned her wings on

    My mom earned her wings on July 21, 2018. She had a stroke and after a few scans the cancer had already taken over. She was such a fighter and I thank God for her love. I miss her so bad it aches. I pray all of you have much success in your journeys and that you kick this cancers butt! 

     

    i created a website to honor her if you would like to view it www.celebratingcelesta.com

     

     

     

     

     

    Deepest Sympathy

    I'm so sorry to hear of your mother's passing. Your previous post showed how important and special your mother was in your life. My condolences go out to you and your family.

  • tcwrw3
    tcwrw3 Member Posts: 2
    edited July 2018 #12
    My mom earned her wings on

    My mom earned her wings on July 21, 2018. She had a stroke and after a few scans the cancer had already taken over. She was such a fighter and I thank God for her love. I miss her so bad it aches. I pray all of you have much success in your journeys and that you kick this cancers butt! 

     

    i created a website to honor her if you would like to view it www.celebratingcelesta.com

     

     

     

     

     

  • derMaus
    derMaus Member Posts: 558 Member
    #13
    tcwrw3 said:

    My mom earned her wings on

    My mom earned her wings on July 21, 2018. She had a stroke and after a few scans the cancer had already taken over. She was such a fighter and I thank God for her love. I miss her so bad it aches. I pray all of you have much success in your journeys and that you kick this cancers butt! 

     

    i created a website to honor her if you would like to view it www.celebratingcelesta.com

     

     

     

     

     

    Blessings to you and your

    Blessings to you and your mother, and thank you for letting us know. You're in my prayers. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,515 Member
    #14
    tcwrw3 said:

    My mom earned her wings on

    My mom earned her wings on July 21, 2018. She had a stroke and after a few scans the cancer had already taken over. She was such a fighter and I thank God for her love. I miss her so bad it aches. I pray all of you have much success in your journeys and that you kick this cancers butt! 

     

    i created a website to honor her if you would like to view it www.celebratingcelesta.com

     

     

     

     

     

    tcwrw3, I am so sorry to hear

    tcwrw3, I am so sorry to hear about the loss of your mom.  What a BEAUTIFUL tribute you made for your mom on that website!  Please be kind to yourself and don't forget that living life (as is the battle with the beast) - "It takes courage.."

    May God welcome her with open arms, and may He be with you and your family in this difficult time.

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #15
    tcwrw3 said:

    My mom earned her wings on

    My mom earned her wings on July 21, 2018. She had a stroke and after a few scans the cancer had already taken over. She was such a fighter and I thank God for her love. I miss her so bad it aches. I pray all of you have much success in your journeys and that you kick this cancers butt! 

     

    i created a website to honor her if you would like to view it www.celebratingcelesta.com

     

     

     

     

     

    I am so sorry!  As a UPSC

    I am so sorry!  As a UPSC "survivor" I know how vicious this cancer is. I'm glad she is out of pain but sorry you no longer have her in your life.  You sound like a wonderful daughter!

    Love,

    Eldri

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
    #16
    tcwrw3

    I am so sorry for the loss of your mom. She is in good hands now, in heaven.

    As I say to my husband all the time regarding everything,  we have to
    remember that "God is in charge."  We can never forget that.

    Takingcontrol58

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #17
    Sorry for your loss

    What a beautiful tribute to a phenomenal woman!  Cancer sucks!  May God wrap his loving arms around you and your family in this time of tremendous loss. I’m so sorry. 

  • Harmony09
    Harmony09 Member Posts: 79
    #18
    Thinking of You

    I am so very sorry for your loss. The tribute website you did for your mom is glorious! I too hope you can feel God's loving arms around you during this difficult time. I will keep your family in my prayers. May the peace that surpasses all understanding envelop y'all.

    Sincerely. 

    Stacey

  • rcdeman
    rcdeman Member Posts: 263 Member
    edited August 2018 #19
    tcwrw3 said:

    My mom earned her wings on

    My mom earned her wings on July 21, 2018. She had a stroke and after a few scans the cancer had already taken over. She was such a fighter and I thank God for her love. I miss her so bad it aches. I pray all of you have much success in your journeys and that you kick this cancers butt! 

     

    i created a website to honor her if you would like to view it www.celebratingcelesta.com

     

     

     

     

     

    So sad... I'm so sorry about

    So sad... I'm so sorry about your mom. Praying for your and your family as you go through this difficult and painful time. Just remember that she is no longer in pain and suffering and that she is with Christ. My father also had a stroke in the midst of uncurable stage 4 liver cancer, and it's the most horrible thing having to watch a loved one's deteriorating health.

    May the Lord embrace you and your family,
    Rebecca

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    #20
    tcwrw3 said:

    My mom earned her wings on

    My mom earned her wings on July 21, 2018. She had a stroke and after a few scans the cancer had already taken over. She was such a fighter and I thank God for her love. I miss her so bad it aches. I pray all of you have much success in your journeys and that you kick this cancers butt! 

     

    i created a website to honor her if you would like to view it www.celebratingcelesta.com

     

     

     

     

     

    The tribute to your Mom was

    The tribute to your Mom was beautiful.  So sorry for your and your family's loss.  May you all find comfort in the memories of the good times and know that the ladies here are praying for the family.  May God watch over you all. trish

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    #21
    Deepest Sympathy to you and your family

    I am saddened to hear of your Mom’s passing. She fought the cancer as best as anyone could.  Pllease take care of yourself. Your Mom lives on in the hearts of those who loved her. 

    With deepest sympathy, 

    Lori

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