How to help a patient

Options
Belluan
Belluan Member Posts: 2
edited July 2016 in Stage IV/Metastatic Breast Cancer ONLY

Hello to all, I am new here and daughter-in-law of a cancer patient. Angela was diagnosed with breast cancer in 2009. She had the tumor removed, began chemo and radiation and was in the clear for about 3-4 years. She was not taking her hormone treatment, which I have no idea if it makes any difference, when she was diagnosed with metastatic cancer in the spine and pelvis (2013). A few weeks ago she was in excruciating pain, she was admitted to the hospital where they found she had two fractures in her pelvis related to the quality of her bones due to the cancer. By the way she is 72 years old. They did radiation for which she now has reached the maximum and cannot do any more sessions for the next 5 years! She has been out of the hospital for 3 weeks now and she is at home with us. She walks a few steps a day but she's in a lot of agony, mostly to smoke a cigarette (!!!!). She is on an opiate patch and abstral (another opiate pain killer). She cannot go on chemo because she needs to heal. I wonder. Will she get any better? Its very hard for my family. We love her dearly and we do not know how to help her, at the least psychologically. A physiotherapist who came to the house said to us that the pain will never go away but she has to keep on getting up, and it may only reduce. She said that if she stays in bed too long she will have no strength to get up and she will only deteriorate. I try to be as uplifting as possible but in all honesty I am not. What do you tell a person in so much pain? How can we know if the cancer isn't spreading in the meantime? Can we be hopeful? I thank you all for taking the time to read this message and I hope to hear from someone who may have been in the same place as we are. I wish to all of you good health. Luan

· Share on FacebookShare on Twitter

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited June 2016

    Just bumping so our helpful members can weigh in!


    · Share on FacebookShare on Twitter
  • Tina2
    Tina2 Member Posts: 2,943
    edited June 2016

    Luan, you may be able to find the people who are "in the same place" as you are in the Caregivers' /Family Forum in "Support and Community Connections." Try there.

    Tina

    · Share on FacebookShare on Twitter
  • txmom
    txmom Member Posts: 306
    edited June 2016

    Hi, I read your post and I can tell how much you love your mother-in -law so I just wanted to respond.  I know it's very tough in the beginning.  There are some things you might want to know so you can gather good information for her.  What type of breast cancer does she have?  Is it hormone receptive? It's HER2 status?  It's grade?  People will be able to give you better guidance with this information.  It is possible to get better.  I had a fractured hip last year and with treatment, it healed and I have no pain but I am younger and everyone responds differently to treatment.  Her Dr. will make a treatment plan for her once she is healed and you will feel much better once something is in place.  It took 2 months for my team to get something in place for me.  I cried everyday worrying that it was spreading.  I think I cried everyday for about 4 months.  If she is having difficulty maybe try an anti-depressant or anti-anxiety drug.  Let me know if you have more questions or if I can help you.  Love to you.

    · Share on FacebookShare on Twitter
  • zarovka
    zarovka Member Posts: 3,607
    edited June 2016

    I've been there with deteriorating parents. The body needs to move for certain basic functions to occur. We inherited our lymphatic system from the squid, which will die if it is unable to swim. You have to manage the pain so she can move around before you even think about treating the cancer. These days, she has a lot of options for treating the cancer if she can maintain her basic health.

    >Z<

    · Share on FacebookShare on Twitter
  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited June 2016

    I am sorry to hear of Angela's pain. While you try to be upbeat, it's okay to acknowledge to your MIL at its hard to see her in pain but that you are there for her. Sometimes when people are in pain, they just need to know you support them.

    I am thinking distraction may help. Not while she's up, but when she's lounging. Really, even tho the situation is so serious, see if your MIL would watch some entertaining tv, whether it's Andy Griffith reruns or Americas got Talent or some good movies or a series show on Netfix she can get absorbed in. Does she have an iPad? So simple to use and there are fun games to help take the mind off of troubles. The first year after my diagnosis, I played Plants Versus Zombies for three months straight any chance I could get, allowing myself the addiction as a way to cope! I was in my early 50s at the time. Now I like words with friends.

    I do not know if Angela's bed or where she stays during the day can be in a room with a big window where she can see the outdoors, maybe make her surroundings more pleasant.

    No one can say how your MIL will deal with mbc. It helps to take it a day at a time. Just be present, without projecting yourselves into some unknown future. Many prayers for both of you.


    · Share on FacebookShare on Twitter
  • Belluan
    Belluan Member Posts: 2
    edited July 2016

    Hello everybody,

    Thank you so much for all your messages. I am afraid I cannot answer txmom with the details of the disease. All I know, I have shared in my initial post. I wish I knew more... I wish doctors knew more. So here's a small update. She's been on this drug since released from the hospital called Lyrica. It has something to do with "fogging" the pain receptors in the brain. When we had a urinary tract infection last week, due to the catheter, an the family doctor who knows little about her cancer found that the drug is too strong and perhaps not helpful. He suggested we stop it. We took the liberty with my MIL to stop it. Those three days were awful. The pain was extremely strong again. We called her oncologist and he sent us the physiotherapist who saw in how much agony she was in. We obviously went back on Lyrica and things got better. However, my understanding is that this drug simply covers the pain! I am now understanding that she is not getting better in the hip. The drugs are soothing her but there's not much improvement from the radiation. I could be wrong. Who knows. Now she's describing extreme pain behind her knees. Someone asked about antidepressants; she's been taking Lexotanil for years, she is taking them as she feels. The other day she confided in me that she's had thousands of panic attacks in her life time with a throbbing pain in her chest. To end this update I will say that I take each day at a time. Thank you all for reading my thread. Luan


    · Share on FacebookShare on Twitter
  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited July 2016

    Bell, I'm sorry to learn of your MILs pain. Regarding that she's been taking an antidepressant: being on something for "years" doesn't mean it's working, There are so so so many new medicines to treat depression that may be more effective, there are meds that work better when taken in combination with each other. The panic attacks are something that may be better treated with antianxiety meds. I take a daily antianxiety medicine and it gave me my life back. It may really be worth your MILs time to revisit the issue of dealing with anxiety/panic/depression. Best wishes to both of you.

    · Share on FacebookShare on Twitter
  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited July 2016

    Hi Belluan,

    I hesitate to jump in with advice, yet a couple of things occur to me.

    It sounds like your MIL's medical management could use some fine tuning.

    She has an unresolved UTI causing pain - can that get cleared up with a different regimen? Is the catheter causing or worsening the UTI? Can she be weaned off of it?

    It's nice that the Lyrica relieves the pain, but that's just masking the underlying problem by treating one symptom.

    I take Lyrica (half a 50 mg capsule at bedtime) for nerve pain along with other drugs for cancer-related pain.

    It was prescribed by my palliative care doctor who is now my hospice doctor.

    Belluan, can you advocate to see a palliative care specialist who specializes in pain control to work out a pain management program, since she has so many different pain-causing issues and some can't be resolved by treatment for the underlying problems (I think UTIs can be resolved, cancer, maybe not so much)?

    https://getpalliativecare.org

    Also, is there a psychologist, social worker or chaplain at her cancer center or in her community (a minister, priest or trusted other) who can listen and support her other needs? She may need meds, but a loving, listening ear can go a long way toward easing suffering. You shouldn't be her only confidante, since it sounds like you're her primary medical advocate.

    Belluan, you're in a tough situation. Your MIL does have some limited options for improving quality of life, but it sounds like her medical team isn't working together on her behalf. Yet.

    I hope you find the necessary help you need. A good place to start might be to ask the visiting physiotherapist for referrals for pain management and seeking resolution of the UTI.

    healing regards, Stephanie

    · Share on FacebookShare on Twitter

Categories