When to stop treatment and move to palliative care

Kkmay
Kkmay Member Posts: 156
edited July 2020 in Stage IV/Metastatic Breast Cancer ONLY

Hi Ladies!

I’m writing on behalf of my mom who is diagnosed with stage IV TNBC on March 2020 with mets to bones and lungs. The stats below are also hers. She has been on eribulin since stage IV diagnosis which caused her a lot of issues due to high toxicity, despite lowering the dosage. Now she is diagnosed with severe pneumonia and in the ICU on a ventilator. Her MO told me that he will not treat her anymore and that the we should move to palliative care after ICU discharge. He stated that chemo at this point will cause her more harm than good. He is not considering doing a pet scan to see how eribulin affected her tumors. He also stated that her cancer back in stage three was not responding to Taxol, Carbo nor Xeloda.

I really would appreciate your opinions on this as I’m confused and stressed. I feel that she should pursue chemotherapy yet at the same time I’m scared of her taking a turn to the worse.

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  • Simone80
    Simone80 Member Posts: 988
    edited June 2020

    Sorry to hear about your mother. Have you thought about getting a second opinion? There are a few clinical trials out there for TNBC, maybe she would qualify for one of those after she gets out of ICU.


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  • Kkmay
    Kkmay Member Posts: 156
    edited June 2020

    Thank you for your reply

    Unfortunately there are no current clinical trials in our area, and mom doesn’t want to travel.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2020

    kkmay,

    Your mother is very lucky to have a daughter who is so caring. Since your mom is currently on a vent, is it anticipated that it will be removed soon? If so, I assume she will have some input into her treatments. Must a treatment decision be made now or can you wait for her to participate in decisions? If you have medical POA did you discuss ongoing medical treatment with your mom before she was intubated? I guess what I’m trying to say is that you need to take into consideration what your mother would want. Is it possible to ascertain her wishes

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  • Kkmay
    Kkmay Member Posts: 156
    edited June 2020

    Hi

    I will definitely consider her input. She is the patient. I remember asking her MO about immune therapy and he answered that she is not eligible. I didn’t understand why though.

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited June 2020

    These are all good questions. If you are her medical POA and she cannot make medical decisons at this time, maybe set up 2nd opinion now. Is there another oncology group near you that you can consult NOW on your mom's behalf? Or if she is able, to give you permission to proceed, especially while she is recovering? If it were me in the ICU, I would want to know all options and hopefully, my family would act on my behalf to get amswers.

    When you are very sick..it is easy to give up, esp if your MO has given up.

    When she was diagnosed with Stage IV, was bx tissue sent to Foundation One to see if she has actionable mutations or recommended trials? If no tissue obtained, then blood sent to Guardant 360? Was her hormomal status confirmed triple negative?

    It just seems early to give up..even if she is in ICU. Many of us have been in crisis and pulled thru to try another treatment.

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited June 2020

    P.S. When I was diagnosed with Stage IV, I was automatically on Palliative Care as there is no cure.

    My palliative care team are wonderful..helping me to establish goals, encouraging physical therapy early in diagnosis, depression management. pain mgmt when needed.

    Is her MO maybe thinking Hospice care, not Palliative care?

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  • Kkmay
    Kkmay Member Posts: 156
    edited June 2020

    Hi,

    She relapsed less than one year of her TNBC stage three diagnosis (And less than 6 months after mastectomy which lab reports confirmed TNBC) so her MO said no need to test for status again. To be honest, I'm starting to loss my confidence in this MO. The moment my mom got into ICU, he called me up and told me that it's time to give up and move to palliative care.He even brought another oncologist to assure me that this was the right decision. I felt they were pushing me. It didn’t feel right. I’m starting to question his motives, yet at the same time I’m scared of consequences.

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited June 2020

    Ask for Guardant360 blood test to check for actionable mutations. If her tumor mutation is high, she might qualify for immunotherapies which target TNBC.

    Please trust your instinct..something sounds odd.


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  • Kkmay
    Kkmay Member Posts: 156
    edited June 2020

    Thanks Sandi,

    Is this a blood test? And how long does it take to get results

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited June 2020

    It is a blood test..not sure what the turn around is. But it has been helpful for those that cannot have tissue sent to Foundation one.

    Do you have access to a breast cancer oncologist as a second opinion?

    I will pray that your mom will become stable in the ICU..that is her first hurdle. Keep her positive and hopeful as she will need that.

    I am on palliative care..it is not the same as hospice care. Please write down your questions and ask for answers. It is your mom. Fight for her.

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited June 2020

    I am going to edt and send you links to read re TNBC, stage IV treatments.

    Search Triple negative treatments in BCO under Stage IV.

    Here is a start.

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

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


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  • Kkmay
    Kkmay Member Posts: 156
    edited June 2020

    Thank you so much Sandi

    Yes she has access to other oncologists in the same center. It's very difficult for my mom to go to other centers because of long distances.

    I really felt that the two oncologists were ganging up on me.

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited June 2020

    Your mom should have her PDL/PDL1 tested.

    Hoping triple neg folks will respond and help you.

    Meanwhile, my thoughts are with you while your mom is in the ICU.


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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited June 2020

    Kkmay, I agree with Sandi, it is typical to offer TNBC immunotherapy-chemo comb, it may be that they consider her too close to death to withstand it, but there are people who have been almost at death's door and gotten into an immuno trial with profoundly good results-it's not the typical thing, but it has happened and more than once

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  • Kkmay
    Kkmay Member Posts: 156
    edited June 2020

    Thank you ladies for your input.

    Please if you know any good TNBC oncologists I can consult via mail or email, please send me a private message.

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited June 2020

    Kkmay, I am sorry that your mom is having such a difficult time. There have been people on these boards who have stopped active treatment and found an improvement in their quality of life. That being said, I do agree with others here who suggested a second opinion. I realize that your mom does not want to travel. I want to let you know that some large cancer centers will participate in patient appointments for second opinions online or by phone. This was being done even before COVID, and I am sure it is more common now. I believethat Dana Farber does it, and I am sure other large centers do, too. You could call one or more to find out. They could then set up an appointment. You would have to forward all records and scans they request. Your mom would probably have to participate in the call or virtual appointment. Hopefully, you can have that review, and the doctor will provide you with a second opinion. Your mom’s current MO should not have any objections to that plan. All MOs should welcome and even encourage such a review by another physician.

    I hope you mom is out of ICU soon. I am sure she appreciates all the support and love you are providing.

    Hugs and prayers from, Lynne

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  • Kkmay
    Kkmay Member Posts: 156
    edited June 2020

    Thank you ladies so much! I will contact Dana Farber and Lee Motif

    I've asked my mom's MO for medical reports for second opinions, and imagine he was pissed! His behavior is so unprofessional. I've innocently asked him to be as detailed as possible in the report and he replied “you don't tell me how to write medical reports I write everything as it is without omission or addition" WTH!

    Since mom has been in the ICU his behavior completely changed. It's like he wants to avoid responsibility or something. Now I'm questioning his decisions all along :(

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited June 2020

    Hi Khnay, is your mom's pneumomia improving? Is she stable? Have they done any labs to see if the chemo she was on previously has had any impact? Scans?

    I am going to assume her cancer treatment was stopped when she was admitted to ICU?

    You are so right to get that 2nd opinion. Would the 2nd opinion MO request those records on your (your mom's) behalf? Can you ask what you can do to expidite getting her seen quickly, even if a teleconference into her ICU room initially?

    Push the boundaries..this is your mom.

    Also, you might want to ask Medical Record Dept to see if your mom's info is an electronically stored record. This info can be shared electronically to other institutions, esp scans/reports. We have Care Everywhere where I live.


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  • Kkmay
    Kkmay Member Posts: 156
    edited June 2020

    Hi Sandi,

    The ICU doctors say that things are stable so far, but they didn’t mention improvement. A chest CT scan will be performed today to assess that. However, they mentioned that her WBC count has gone down, and they are now almost within normal range. PCT is also normal. However, she is still highly dependent on the ventilator. Hopefully things will get better soon. It’s really hard as I can’t visit her (hospital policies COVID-19) or hear her voice. I miss her a lot.

    She hasn’t received any chemo or treatment since her admission three weeks ago. She was admitted because she had high fever, high PCT, and excessive sweating (i.e. infection). Tested negative for COVID-19 and was put on antibiotics immediately. She was actually getting better and ready to go home and suddenly relapsed and went straight to the ICU one week ago. I think she might have caught something from the hospital. Due to COVID-19, no one is allowed in the ICU so I can’t do a teleconference. Only patients are allowed in the hospital. I call daily and nurses update me.

    When I met her MO he was adamant on not performing scan to assess Erbulin (no idea why), and they can’t perform them now as she is on a ventilator and in a critical condition.

    Unfortunately, a signed medical report by her MO must be provided for second opinions. At this point, I’m really worried that he might commit forgery on my mom report omitting things or not being detailed enough in order to prove he’s right in stopping treatment. I don’t know it might just beme overthinking. I have all tests, PET scans, MRIs, ultrasound and tumor blocks ready. I’m only waiting for his report.

    I’m going to meet with the hospital manager to expedite the whole process.


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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited June 2020

    Good job!

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  • KBL
    KBL Member Posts: 2,521
    edited June 2020

    He sounds extremely unprofessional. When I first went to my oncologist, he told me I should get a second opinion if I wanted one and that he had absolutely no ego and no problem with it. That should be how all oncologists feel.

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  • Kkmay
    Kkmay Member Posts: 156
    edited July 2020

    Hi Ladies,

    Unfortunately, my mom lost her battle with breast cancer a few days a go. She passed away in the ICU. Her blood pressure got too low and her lungs were collapsing from cancer and infection in addition to sepsis. We are all heart-broken and overwhelmed. I thought she will be alive for at least a couple more months.

    I want to sincerely thank everyone in this community. You were all very helpful, supportive, thoughtful and informative thorough out this journey.

    I want to say something for those worried but not yet diagnosed. Please please please get mammograms and all the necessary tests as soon as possible. Trust your instincts. My mom ignored her lump for six months because of her phobia of doctors. By the time she was diagnosed the lump wad about 7 cm. She wasn’t thinking rationally. She would probably be alive now if had checked her lump early. Please take good care of yourselves for your sake and for your loved ones sake.

    God bless you all.

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  • Iwrite
    Iwrite Member Posts: 870
    edited July 2020

    kkmay,

    Sending you my deepest sympathy on the loss of your Mom. You did everything in your power to help her receive the best care!

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited July 2020

    KKmay I am so sorry for your loss. We can all see that you loved your Mom so much.

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  • Trishyla
    Trishyla Member Posts: 1,005
    edited July 2020

    I'm so sorry for your loss, Kkmay. Your mother had to know how much you loved her and how hard you fought to help her.

    Be well.

    Trish

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited July 2020

    Kkmay, I am sad for you. You tried so hard to get the answers and treatment so your mom could have more time.

    You stood up for your mom, asked the appropriate questions and trusted your instincts to push for answers.

    My hope was that you were allowed to visit your mom in the ICU. Be gentle to yourself, she would want that.

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited July 2020

    Kkmay, I am sorry for the loss of your mother. I know that pain must be overwhelming to you right now. You did everything you could. I wish you peace and comfort during this difficult time.

    Even during this painful period, you are thinking of others by reminding people to have mammograms and not ignore symptoms. You are a special person.

    Hugs and prayers from, Lynne


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  • DaughterOfStageIV
    DaughterOfStageIV Member Posts: 49
    edited July 2020

    I am so sorry. I also just recently lost my mom to this horrible disease on July 1st. My mom had it for 8 years though (the second time), and 25 years from first diagnosis when she was 42, but they end came on so suddenly without any warning and we had notime to prepare. It’s very upsetting and devastating. We were also not allowed in the hospital- nothing worse. I did sneak in a few times as I couldn’t take the separation. What a horrible loss, so very sorry.

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  • Kkmay
    Kkmay Member Posts: 156
    edited July 2020

    Hi all,

    Thank you so much for your much needed kind words in this difficult time. I miss my mom a lot. I can't stand the idea that she won't be a part of my milestones in life. It's unbelievable how two years ago, she was perfectly healthy, and now she is dead because of breast cancer. I never ever thought this would happen to her this fast.

    Covide-19 made hospital visits almost impossible, but two days before she was gone, the doctors allowed me in the ICU for five minutes to say goodbye, although I was in complete denial about the whole situation and she was completely sedated. I think she moved her lips a little when I talked to her, or this could just be my imagination. I don’t know if she could here me, but I talked to her. I told her how luch I love her and that I miss her a lot

    She was getting better before her admission to the ICU, we were two days away from discharge. We were discussing our plans when we get home. She suddenly got worse and started deteriorating.

    After mom's death I started cleaning and arranging the house obsessively. I think it is a coping mechanism. It makes me feel better, and most importantly in control.

    I hope she’s in a better place now.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited July 2020

    KKmay, in a sense, she will be a part of all your milestones because she is a part of you. and you honor her.

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