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Topic: Caring for a relative w/ BC Mets who refuses chemo & prognosis

Forum: Caring for Someone with Stage IV or Mets —

A place where family members, caregivers, and loved ones of people having a Stage IV (metastatic) diagnosis can share, discuss, and support one another through the tough times unique to this diagnosis.

Posted on: Aug 31, 2020 04:04AM

PoppyFlower wrote:

Hi,

Been lurking and hesitating to post in fear of confirming what I suspect.

Been taking care of a relative who refuses chemo, radiation (too large of an affected area for surgery) and to know what her prognosis is after learning the devastating news that she has Stage IV BC that has spread to lungs, lymph nodes and chest wall. She has visible lesions on her chest, discoloration, swollen lymph under her neck in the center (size of a lemon), severe lymphedema on her arms, fluid in her lungs, and toughening of the skin on the chest wall. She's coughing, having trouble breathing, and the tightness around her chest is reducing her capacity to inhale. Her legs are very skinny and has no strength. Can't sleep at night or rest during the day. And I have to drain the fluid from her lungs twice a week via drainage tube Pleurx.

When I type it all out, it sounds like a miracle that she's still alive. But that's my question. I don't know how long she has since she doesn't want to know and promised me not to ask her doctor. She spent 8 days in the hospital because she had respiratory failure and was taken to the ER and that's where she was diagnosed as having Stage IV BC. The Oncologist put her on Letrozole and Ibrance 5 days ago. But she's getting worse and she's crying and doesn't know if she's going to make it.

What do I do, other than cook for her, try to make her bed more comfortable (she changes her mind 3 times a day how she wants her bed since nothing makes her comfortable,) massage her arms, and foremost, listen to her for hours and hours during the day and into the night since talking out loud seems to help her get distracted and she is less bothered by the pain and discomfort.

I feel like she's slipping away since her symptoms are getting worse daily. How do I know how much time she has? How long can she live like this? How do I convince her we should know more about her condition and the prognosis but she doesn't want to know.... :( But I have to plan my stay (I'm out of state) and figure out how to take care of her round the clock...

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Aug 31, 2020 10:20AM illimae wrote:

I’m sorry you’re dealing with all this, I can offer two this from my experience.


I’ve seen people recover from far worse issues thanks to chemo.

Chemo for me, was so much easier that I thought it would be, despite the side effects.


Good luck

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine)
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Aug 31, 2020 10:28AM Spookiesmom wrote:

Chemo isn’t a walk in the park, but it’s doable. If you have se, the MO has meds that help.

The other side says, you can lead a horse to water, but you can’t make them drink.

Good luck.

First time IDGgrade 3, stage 3. Second time, found lump myself. That made me stage 4. Dx IDC, Stage IIIA, Grade 3
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Aug 31, 2020 10:44AM PoppyFlower wrote:

@Illimae, I wish I can convince her to do chemo. I feel like it would be a last ditch effort. But she thinks she will die from chemo because her immune system is so weak. She had a friend with BA and her advice for her at the time was to avoid chemo as well. For some reason, she's so anti-chemo and her Onc is abiding by her wishes so he doesn't try to convince her either.

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Aug 31, 2020 10:51AM PoppyFlower wrote:

Spookiesmom, I feel exactly the same about the "horse" phrase. Even when she's so uncomfortable and can't breathe, she is refusing to even entertain the thought of chemo or radiation.

When she saw the MO in the hospital, he can only recommend a therapist for the Lymphadema but because of COVID, I'm not sure how feasible it would be to go to the clinic daily. What's scary is that the parts that were swollen on her chest once, are now turning into a thick and tough fibrous covering. She feels like her chest is turning into a steel plate constricting and strangling her

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Aug 31, 2020 12:38PM moth wrote:

Sorry that you find yourself in this position. I would say that I think what you're being asked to do is unfair and unreasonable - to be asked to more out of state & provide care with no idea of timelines is not ok.

Were you present in the oncologist appointments? Informed consent of starting medications such as letrozole and ibrance should include what effect it would have on her condition & what change in prognosis if her cancer responds. But they do skip details.if pt doesn't ask or says they don't want to know. If she does respond, then within a few weeks she might begin to feel quite a bit better. But generally speaking, even with those of us who use chemo, stage 4 is whackamole. We start a treatment, stay on it if it works for weeks or months, then it stops working, we move to the next drug or chemo and try again until we run out of meds or our bodies are too frail. She might last months if these medications control her mets.

I would go to the lymphedema specialist. The tightness is the tissue becoming fibrotic like tough scar tissue. It will only get worse without proper treatment. Covid is less of a risk that cancer and lymphedema IMO & if the Dr referred her, she should go.

I also think you need to be firm about your boundaries & not shirk from hard unpleasant conversations. You need to know the prognosis. As an out of state caregiver you're being put in an impossible situation without this info. She also needs to think about a DNR and signing/updating a will.

Best wishes
I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Hormonal Therapy 12/15/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/2/2021 External: Bone
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Aug 31, 2020 12:50PM ctmbsikia wrote:

Or a palliative care team. This is what she needs. They could help with the weekly draining and address the breathing issues when they come. As well as pain to make her more comfortable. Agree, yes, please before things progress any further she needs to have paperwork in order. If you panic and call 911 or take her to the ER those docs are not bound by these papers as is their ethical duty to save a life. This is why I suggest a palliative care team. They will come to her and if you are on her HIPPA papers they can share her prognosis with you as it comes. That way, when she transitions to hospice, that may be a good time to stay 24/7. So sorry to hear, best wishes.

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/30/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/10/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Aug 31, 2020 02:36PM - edited Aug 31, 2020 02:44PM by Olma61

She is afraid of dying from chemo but she isn't afraid to allow herself to die this way?

It's hard to give tough talk to a relative or friend in this level of denial but it is something you could try if you feel able.

If the doctor offered chemo and radiation then chances are it is going to at the very least, help her be more comfortable than she is now.

Also they do not give the “strongest“ chemo with the worst side effects to people in Stage IV especially someone in her condition.

Ibrance plus letrozole may or may not start to reverse what is happening to her now, but it surely would take more than five days to see results.

the chemo and rads would be more effective and quicker to at least alleviate some of her symptoms.

The choice is hers ultimately of course.

Sorry you are going through this, she is lucky to have you there to care for her


ps, I agree with going ahead with the lymphedema appointments. COVID is the least of her worries and besides that, the medical facilities have been taking precautions to keep patients safe.

All of us in Stage IV have continued our treatments throughout the COVID crisis because we have to.

Again, wish you the best with what’s ahead for both of you.

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/30/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/30/2019 External: Bone
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Aug 31, 2020 03:28PM illimae wrote:

Poppy, I would have considered myself anti-chemo too before cancer, as I thought was like I see on TV but that hasn’t been my experience at all. I felt so generally good that I wondered if it even worked but it did. I was so confused by not feeling terrible and being in pain, that I started a tread here called “does anyone else feel like they don’t have cancer?” And yes, there were more like me, now I’m quite a bit younger (45), so it might not be as easy but it might not be so bad either. Just some thoughts.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine)
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Aug 31, 2020 03:59PM PoppyFlower wrote:

Moth,

I appreciate your honest opinion. I know she knows to prepare all papers and documents in order. What's amazing, for now, is her mental clarity. So she's strong willed and has all the mental constitution. But, I'm scared that when she wakes up one morning, she won't be able to think clearly and won't let me take care of her the best way possible for her. And due to COVID, I can't even accompany her to the doctor's appointment. I'll drive her there but won't be able to even enter the building. The same goes for Lymphedema therapy...I don't think she can have regular therapy sessions due to covid.

Cancer is hard but COVID is making it so much harder to care for her.

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Aug 31, 2020 04:01PM PoppyFlower wrote:

I'll look into a Palliative team. I believe her MO's office mentioned some service. I could do the drainage, no problem. But it's the adema that's turning into fibrotic mass that's concerning me more than anything else since that requires regular lymphatic drainage and massage therapy from a specialist....

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Aug 31, 2020 04:04PM PoppyFlower wrote:

Olma,

I will mention chemo after her MO appt tomorrow. I don't know what he's going to say to her but I'm not sure if she knows all the details about chemo and radiation. She might have watched too many YouTube videos that are against chemo. Damn Google and YouTube!!

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Aug 31, 2020 04:05PM PoppyFlower wrote:

illimae,

Wow. That's great to know! I'll definitely mention that to her! She just have this idea in her head that chemo kills. :(

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Aug 31, 2020 04:58PM moth wrote:

Cancer kills. Stage 4 is terminal cancer. There's no cure.

Chemo and other treatments buy us time. Chemo is a life preserver for me. I'm thankful every day to have this treatment available, for however long it works.

Make sure she knows that some chemo is an oral tablet you take at home. IV chemo is in a clinic but it's just part of a day. They manage the side effects pretty well now. I've been on chemo since March. I was very sick from my liver & lung mets in spring but now I feel really well. I'm busy, play with my dog, took a long walk this morning, cooked lunch. Will be cleaning the kitchen and want to wash a couple windows later. I'm going camping at the end of September. Being on chemo doesn't necessarily mean lying around being sick all the time. We get tired more often, need to rest more but we live.

Btw, my cancer center has also banned support people due to covid but they make a lot of exceptions. You might be able to get in esp if she says she's having difficulty remembering what the Dr says. Also she has a right to get copies of her medical records. The oncologist summaries are usually detailed and extensive.
I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Hormonal Therapy 12/15/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/2/2021 External: Bone
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Sep 1, 2020 12:44AM PoppyFlower wrote:

Moth,

You're inspiring. I wish she was as half brave as you. I think she's scared, weak, and depressed. And I don't blame her. So, I want to be as supportive as I can, as long as I can.

I will tell her to get the records but I think she might disagree since it'll have all the brutal info about her cancer. But I'll ask.

Thanks so much and God bless you! You're going to enjoy everything life gives you and more!

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Sep 1, 2020 12:51AM PoppyFlower wrote:

Jana,

Oh my goodness. Not only did you go through so much taking care of your MIL, but reading your health history, you are going through so much yourself! I am so sorry. And thank you for sharing your experience with your MIL. I think that's how it's going to happen with us too...when it happens.

While my situation is in a limbo, not knowing, I do admire those who can make end of life decisions so bravely and unequivocally, I don't know if I could do that. I said earlier that she is not brave but scared but in some ways, she IS being brave in sticking to her wishes even though she's in pain.

I pray that your treatments work and you can enjoy everything you do!

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