Liver Mets and cirrhosis (and xeloda too)

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FactoryGirlYogi84
FactoryGirlYogi84 Member Posts: 18
edited May 2016 in Stage IV/Metastatic Breast Cancer ONLY

Hi,

I posted this in the caregiver section but my mom asked me to share it here too. (I'm more computer literate than she is, but I share stuff from here with her.) Here is my original post:

My mom was diagnosed with breast cancer several years ago. She did the surgery but never got to do any chemo/radiation because she lost her health insurance. Approximately 2-3 years ago, she got her health insurance back and started seeing an oncologist again only to find that she had bone mets and CLL (a form of leukemia). She started treatments (arumidex, then tamoxifen, fluvestrant then after that). Then when those didn't work, she started on chemo. First it was gemzar, then taxol.

Her oncologist recently changed her to xeloda upon finding that the liver now has signs of cancer. This week she ended up in the hospital due to fluid rentention in her abdomen and they drained 4L out. Her liver is still inflammed, and she can't get passed the nausea.

The Drs at the hospital said he shows signs of cirrhosis (the oncologist isn't answering our questions very well) but I know the xeloda can be hard on the liver. The hospital docs felt the chemo should be changed but her regular oncologist said no.

But now the nausea is getting so bad she can't keep anything down to even try the xeloda. She has zofran, compazine, and another med she has tried and none are working. Is there something else she can try?

My mom's 52 years old and I feel like I am just sitting around watching her die. She kept me out of the loop for a long time, but since it's gotten worse, I'm now actively involved in her treatment. I'm looking for any help I can get

Also, are there other chemotherapies that she could try outside of the xeloda? If so, what are they? Just want to get some ideas for when I talk to her less than helpfuloncologist.

Any help would be appreciated

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

    Hi Factory Girl Yogi,

    What a painful place for both your mother and you! I am sorry that you are both suffering this, though glad to hear that your mother is including you more now. You can help her a lot just by being together in peace. And I'm glad you are reaching out to bco members too.

    I don't have any suggestions for what chemo your mother might try next, I would hope that her oncologist has a workable plan for her. She's on her third chemo after three anti-hormonal drugs failed her. From what I've read, heard and seen, there are many treatments still left to try, but if each fails quickly, the chance of remission or even holding the cancer in check goes down.

    It's possible that her oncologist chose a less toxic drug, Xeloda, because her liver is too involved to handle a more toxic chemotherapy drug. There is hope that it will ease her symptoms and give her a better quality-of-life.

    I hope others will write in about other cancer treatment options and that you'll check the liver mets topic, maybe posting there too:

    https://community.breastcancer.org/forum/8/topics/...

    And there's this topic for those of us with cancer in the belly, including that fluid, ascites:

    https://community.breastcancer.org/forum/8/topics/...


    Dear yogini, I do have liver mets and the ascites fluid. After having the fluid drained at the hospital and having it return, I was able to get an indwelling drain implanted into my belly, so I can drain safely at home, on my own, not in the hospital and at risk for infection. I've been doing this for over 8 months, which is a very long time.

    Unless treatments can quell the cancer causing the ascites, then your mom is in a serious situation and possibly facing death soon.

    Also, the nausea and vomiting are seriously depleting and it sounds like they are giving her the heavy drugs for it.

    Perhaps they can also give her IV fluids and nutrition?

    If you haven't consulted the hospital's palliative care team (aka symptom relief team or pain relief team), I encourage you to involve them too. My palliative care doctors have done a good job managing my symptoms, improving my quality-of-life.

    Wish I had more encouraging news for achieving treatment response, but I think that right now your mom needs symptom relief, so she can return to treatment, if that's her wish.

    Namaste, Stephanie

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  • PurpleMinion
    PurpleMinion Member Posts: 165
    edited May 2016

    FactoryGirl,

    I too am sorry about your mom's situation.

    I don't have any advice on chemotherapy drugs, that would be better given by an oncologist for sure. Speaking of which, have you and your mom considered getting a second opinion from another oncologist who might communicate better with you?

    As for nausea, a couple of drugs that have been helpful to me are Emend and Kytril. I got no relief from Zofran and in fact suffered terrible headaches while taking that. Compazine works as a breakthrough med for me but the side effects (dizziness and fatigue) make me use that sparingly.

    Wishing you and your mom the very best and I will be checking in here for updates. I am sure more people will be along to chime in, the boards can be quiet on weekends.

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  • FactoryGirlYogi84
    FactoryGirlYogi84 Member Posts: 18
    edited May 2016

    PurpleMinion and LongTerm Stephanie, thank you so much for your help.

    Stephanie, I am going to get in touch with her doctor (be it the family doctor or her oncologist) and discuss some options with them. I am looking at this holistically, and am open to any ideas to help her. My mom feels like she is being a sissy about this and is trying to eat more. Some cut up chicken breast stayed down and I was thrilled.

    And PurpleMinion I am going to inquire about those other nausea meds for her. If I can get her eating she can maybe give the xeloda a chance to do its work.

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  • zarovka
    zarovka Member Posts: 3,607
    edited May 2016

    Cannabis oil has helped me with nausea. I had gotten used to the nausea and wasn't going to do anything about it. I tried cannabis oil because of sleeping issues, but it helped most with the nausea. What a wonderful thing a healthy appetite is.

    Your mom sounds a like a very strong woman who has never needed much help in her life. This has to be a tough. Hang in there both of you.

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  • FactoryGirlYogi84
    FactoryGirlYogi84 Member Posts: 18
    edited May 2016

    zarkova

    Cannabis oil is the one thing I would love for her to try. I feel like it would help stimulate her appetite and help with nausea. If I knew where to get it, I would definitely be getting her some.


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

    Good morning, dear Yogini,

    I'm glad you visited the liver mets topic and found hope there!

    I didn't mean to suggest that your mother is on her deathbed, just that she needs to stabilize and regain enough health to accept treatment for cancer(s) (you mentioned CLL, but not whether she's in treatment for it). Otherwise, she may be on her deathbed.

    At the hospital, they are used to handling medical emergencies like your mother's - the nausea, vomiting and any associated dehydration, weight loss, malnutrition and inability to eat or take oral medications. Palliative care should be able to help, since she has so many poorly managed symptoms now.

    But I realized that my response to you was unfair.

    Unfair to both of you, because I didn't paint a rosy picture of a good outcome for your mom. It can happen, there are just many steps between now and then.

    Unfair to you, yogini, because I don't know if the oncologists and other doctors can talk with you. Can you be your mom's agent or can she give a signed or verbal release, so you can? Is she married or partnered and does she have other offspring who want to participate in medical problem-solving for/with her? How will you work together on behalf of your mother's wants and needs?

    And I was unfair to your mother, because I didn't ask - what does she want now? What has she wanted in the past? Can you help her get what SHE wants, not what you want for her?

    You may want her to live a lot longer, but she may feel about finished with cancer and life. That might be because she's sick and in hospital now or because she sees/feels how her body has changed. She may need your encouragement to keep trying. Or your acceptance of her feelings. Or maybe your acceptance of her wish to let go. It's hard for sick people sort this out for ourselves and hard for loved ones to sort, understand, accept our confusion and mixed messages.

    Also, you may want her to try various clinical trials or complementary and alternative treatments like the CBD oil, but if she's shown no interest or engagement in them so far, then a last ditch "Hail Mary Pass", may only distract and cause discord at a time when you can focus instead on being together, healing, getting well and out of hospital.

    Does your mother trust her oncologist? Do you want to drive a wedge between them? How do you delicately suggest that your mother is vomiting everything, including the prescribed Xeloda? How do you ask why the oncologist chose that instead of something else and what else might work to achieve your mother's desired results?

    It's Monday morning here and I imagine your mom's oncologist has or will make morning rounds to visit your mother. If you are there, I hope you can find a way to get clear with your mother about what she wants now...and to represent her needs, even if they break your heart.

    Dear yogini, here's a prayer that's helped me many times, "As we move forward from here, may we always move from darkness to light, from darkness to light and from fear of death to love of life and to freedom."

    Sending many blessings, Stephanie

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