Trying to Catch my Breath

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Cafelovr
Cafelovr Member Posts: 1,534
edited November 2016 in Stage IV/Metastatic Breast Cancer ONLY

Do you know what is worse than having MBC? Being the daughter of a MBC patient. I know it's confusing sometimes when I post because both my mom and I have it. HER2+++ for me...NED since May 2010. Highly ER+ for Yaya with mets throughout.

She's had progression throughout her liver and a suspicious spot on her uterus. She'll start her 5th chemo, Xeloda, this weekend. It is so hard not to be able to do anything for her! I can't ease her pain, ease her fear, or make it better. Ugh!! Sorry...just ranting and feeling sorry...

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  • lalady1
    lalady1 Member Posts: 618
    edited September 2016

    Hi Linda - congrats on being NED - that gives many of us hope. Madame X may help your mom a lot - it's very powerful against liver mets, so let's hope she's on this for a long time. Did Ibrance fail her? What are you taking now? it's fine to rant with your BC sisters. (())

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited September 2016

    Linda,

    I don't know why, but it is harder to see someone close to us with cancer or any serious illness than it is to have it ourselves. It doesn't make any sense at all, does it! My DH and I were both diagnosed with cancer last year, and I shed more tears about his illness than my own. Perhaps it is because we, as human beings, have the innate desire to nurture, heal, comfort, and help others. It is difficult to feel so helpless. It makes us feel that we are failing to fulfill our responsibility to protect someone we love.

    I admire you for your strength and for the loving care you are giving to your mother. Caregivers are never given all the credit they deserve. It is hard to stay strong during all the ups and downs that come with a serious illness. You have it twice as hard as most since you also have MBC yourself. Although you think that you are not able to do anything for your mom, you are doing the most important things of all. You are there for her, and you love her. No one can do more than that.

    I don't know if you believe in the power of prayer, but if it is okay with you, I will pray for you and your mom.

    (((Hugs))) from, Lynne

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited September 2016

    Linda, I can relate!

    When I was diagnosed 3 1/2 years ago I recall thinking, thank goodness my daughters, mom or sisters don't have cancer. Then in November 2015 my mom got dx with a sarcoma in her thigh muscle. She's had radiation and surgery but I felt sick about her dx. I still do. So I can relate to the feeling of helplessness and despair.

    Prayers for you both.

    Amy

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  • PattyPeppermint
    PattyPeppermint Member Posts: 11,162
    edited September 2016

    rant on. My mom died of BC Mets before my stage vi dx but she was so upset during my initial dx. Kept blaming herself. Looks like you have your hands full. Praying X works great for your mom. I've been on it only since July 1 and its been easy on me. First time in three years that I don't have constant debilitating pain. I haven't had a scan but no doubt it's working. Glad you are Ned.
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  • Cafelovr
    Cafelovr Member Posts: 1,534
    edited September 2016

    My mom blames herself too. She was the first one in our family to have cancer (that I know of). Both of us, along with my sister who had a BMX due to abnormal cells, are all BRCA-. I want to follow up with my MO about newer genetic testing.

    Lynne,I am religious and try to find a reason for the mysteries of cancer. If my mom didn't have cancer, I would have never had a mammogram. If I didn't have cancer, I would have never been a mentor and met you fine ladies and gentlemen! Hopefully by the time my DD is 18, there will be new techniques for discovery. We didn't have 3D mammograms when I was diagnosed.

    My mom did fail Ibrance. It kept her stable for a while, but the last scan was the pits. Her WBC and RBC are tanking. She goes the 27th for labs, and will start Madame X then.

    Patty, your post definitely gave me hope and I will share that with my mom. She so scared of the side effects! The Affinitor and Aromasin did a number on her that I don't think she recovered from when she started the Ibrance.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2016

    Cafe,

    Your mother did NOT fail Ibrance. Ibrance failed her. Failed me as well. For a drug that was touted as the "second coming," the results in the general population has not been as impressive as the early studies had indicated.

    I have found Xeloda to a TON easier than Ibrance which was very difficult for me. Of course, your mother's response might be totally different.

    Good luck to you both,

    *susan*

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited September 2016

    It sucks. I remember when my dad was diagnosed with stomach cancer. We had treatment once at the same time.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited October 2016

    Just when I am feeling especially sorry for myself I read about someone who has it way harder than me. I don't know how you cope Linda, but thank God he gave you a break by being NED so you could help your Mom. She is so lucky to have you and there are so many women here who have done wonderfully on Xeloda. We will all be thinking of you and your Mom.

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  • Cafelovr
    Cafelovr Member Posts: 1,534
    edited November 2016

    Just an update! I personally don't think Madame X is working. Bilirubin and Alkaline Phosphatase is too high and Albumin is too low. Fluid in her abdomen came back cancerous. I'm just waiting for the Onc to start having the talk. This sucks!

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  • Kandy
    Kandy Member Posts: 1,461
    edited November 2016

    Oh Linda, I'm so sorry, you are right, this sucks. I do hope something works for her soon. Prayers for you and your family.

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  • Shutterbug73
    Shutterbug73 Member Posts: 791
    edited November 2016

    I'm so sorry Cafelovr. It certainly sucks now matter how you look at it. My best to you and your mother, I will be keeping you both in my thoughts. I hope her doctors find something that works soon.

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  • PattyPeppermint
    PattyPeppermint Member Posts: 11,162
    edited November 2016

    sorry to read this news. Hoping Mo has so something else lined up. My prayers are with you both

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited November 2016

    Hi Linda J.,

    Caught your request by chance, but may have something useful for you.

    Once someone has symptoms of abdominal mets (or even before), I highly recommend bookmarking and reading and writing to the peritoneal carcinomatosis community here!

    We also call ourselves the belly mets sisters and some of us have been dealing with associated symptoms, including fluid in the abdomen, for a long time.

    Right now, several of us are in ominous situations, but the radiance of support, information and loving kindness/caring there is palpable. We won't let your mother and you fall through the cracks. Plus, we can offer very direct advice in the fairly unknown and scary situation.

    Am sending a warm, healing light-filled hugs for you, Stephanie

    BTW, most members started with lobular, I started with ductal, so there is terrific insight into dealing with lobular there.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited November 2016

    Cafe, so sorry to hear this news. I too hope they get her going on something new that works magic. Take care...

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  • pajim
    pajim Member Posts: 2,785
    edited November 2016

    Linda, I'm so sorry. I hope the oncologist has an arrow or two up his/her sleeve. I remember your mother as a very lovely lady, and hope they can find a chemo that treats her well.

    Pam

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited November 2016

    I'm sorry to hear this. I hope they'll try another treatment and you don't get the talk just yet.

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited November 2016

    Cafelovr, somehow I hadn't realized that your mother was also diagnosed wth mbc. It is hard enough to be the patient, much less the daughter and caregiver of a loved one with mets.

    I was wondering whether your mother might consider chemo sensitivity testing?

    If the tumor is biopsy-able or if there is malignant ascites or pleural effusion, perhaps it might be worthwhile to consider sending a sample off for chemo sensitivity testing.It would be tested against different chemotherapy drugs - and combinations thereof - to see what it may be susceptible to, and what it may be resistant to.This is still considered controversial and many doctors are not convinced of its value.Furthermore, it might not be covered by insurance.However, several people have indicated that it has helped them and that it was superior to the hit-or-miss approach to chemo that is used today.If you are interested, two viable places are Rational Therapeutics http://www.rationaltherapeutics.com/and Weisenthal.http://weisenthalcancer.com/Home.html Dr. Weisenthal has been doing this since the 1990s, so he has extensive experience.

    Here's a link to a meta-analysis study that concluded there's a two-fold overall tumor response for a chemo assay-guided therapy versus standard of care therapy, and that patients who received assay-guided therapy compared to those who received standard of care or physician's choice had a significantly higher 1-year survival rate http://meetinglibrary.asco.org/content/118466-132

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  • stagefree
    stagefree Member Posts: 2,780
    edited November 2016

    Dear Linda,

    Huge hugs sister,

    Ebru

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  • Cafelovr
    Cafelovr Member Posts: 1,534
    edited November 2016

    Thanks everybody! I'm just waiting for November 22, her next appt. She starts Round 4 of Madame X today.

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