So many twists in the last three months

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I am not even sure where to start this story.

I'm posting on behalf of my mom, diagnosed stage 3-C October 2012. 8 rounds chemo (A/C, taxotere) radical mastectomy, radiation, local recurrence a year later (oral chemo, more radiation) and then a recurrence in a pleural effusion (still localized, surgery followed by oral chemo, which she is still taking and will continue to take as maintenance until it stops working) --We thought we avoided lymphedema -- and honestly, with everything else that went on, life was good without it. But a few months ago, my mom's affected arm blew up.

That was the start of the issues.

I adore my mom's doctors. I have the utmost respect for them, and believe that she is being cared for very well with regard to the cancer. Since this spring, though, I'm not sure we have found the right balance to treat her whole.

After the first swelling, we met a lymphedema therapist who wrapped, ordered a sleeve and taught my mom exercises. That worked for a bit, but then there was a flare up. So we ordered a better compression sleeve, and it took 6 weeks to arrive. During that time, she spent too much time wrapped, causing muscle cording and decreased mobility. Increased levels of depression.

We have been monitoring tumor markers and they are starting to elevate. (52 a week ago; they should be under 38.)

We also got a clean CT scan, which the oncologist is treating as a gold standard. It's my understanding that the inflammation from the lymphedema can elevate the tumor marker number. So we will continue to monitor, but he picture had nothing to show.

Right now, my mom is exhausted. She can't keep her interest in anything. She goes from one malady to the next--last night she got a bout of stomach cramps that she is swearing are caused by eating sautkraut (which I fed her to get some vegetables in her). Three days before that, she got a few bug bites that she can't itch because of her arm wrapping. She's on an antibiotic to knock out what could be the start of a lung infection in her affected side (no masses/fluid, but a bit of a darkening. No doctor seems overly concerned, but with the fatigue, they figured they would give this a shot.)

I don't know what questions to ask anymore. In nearly four years, this is the first time my mom has looked this defeated. None of my tactics--nurturing, playfulness, or even my company--seem to bring her any kind of comfort. All I want to do is get her back to at least enjoying a night of television. At the moment, all she does is sleep lightly on her recliner, day and night. She'll attempt conversation, but it's clear she isn't connecting.

She's not hungry, but will eat crappy food, and hasn't the energy to walk the dog down the block, so I can't even get her into the sunshine. She's also dizzy, and we seem to have boiled that cause down to muscles in her neck being so tense from the lymphedema therapy; when the muscles get relaxed get dizziness leaves

With the scan results, I was over the moon--we are in the clear! But all I can think about now is that there is something eating at her insides and we haven't found it and don't know how to deal with it.

Or there isn't, and lymphedema sucks and is really causing this downward cycle, which, I think, would be worse.

Any words of advice? Questions to ask any doctor or therapist? I'm calling the oncologist this morning, but I'm already anticipating the 'continue the course' outcome.

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  • KBeee
    KBeee Member Posts: 5,109
    edited June 2016

    What medications is your mom on? What does her blood work look like? What stage is she? All of those things can affect it. Also, sudden onset of fatigue like that may want to be brought to the attention of her primary care doc so they can rule out things like cardiac, which may be unrelated to cancer. Depression also needs to be considered because the cancer treatments are known for causing depression.

  • Emilylaughed
    Emilylaughed Member Posts: 50
    edited June 2016

    She's currently on ibrance (has been since September 2015), Moxifloxacin (antibiotic, 6 days into a 10 day cycle), diabetes / blood pressure / cholesterol meds that have been the same for 5 years.

    A week ago they looked at her BP, Heart, Lungs, oxygen levels and all is checking out ok--She's just completely exhausted. The CT (just 2 weeks ago) showed NED.

    The oncologist is giving her another week break from the ibrance (3 weeks on/1 week off becoming 3 weeks on/2 weeks off while she finishes the antibiotic) and we'll see the oncologist on Monday. The office said that her body is trying to fight off something bacterial and is just tired from that fight, so we should let her be tired. I'm ok letting it go a few more days, but it just feels really off. I asked if she wanted to go see her PCP, but she just wants to go to the lymphedema therapists in hopes that they can get her arm unwrapped and into a sleeve. The wrapping isn't helping anything but the swelling.

  • KBeee
    KBeee Member Posts: 5,109
    edited June 2016

    Hoping she feels better soon! So glad she is NED.

  • Emilylaughed
    Emilylaughed Member Posts: 50
    edited June 2016

    Thanks, KBeee. :) I wish I felt relief over the good scans and checkups, but it seems like every time there's a good scan, she feels lousy afterwards. We've moved on to stomach/intestinal cramps last night and now returning again tonight. We chalked up last night's cramps to sauerkraut intake, but she ate very little today. Now I feel like we've got another call to make in the morning to see what's up with this, but hopefully just to her PCP. (I'm hoping it some kind of reaction to the antibiotic—that makes some sense to me.)

    It's honestly always something. June has not been a kind month. Once you have been dealing with a diagnosis for this long, it's hard to not jump to a lousy conclusion about cancer causing the issues. I think we had a total of 48 hours of feeling good over these scans. I am grateful for those hours, but sure wish they wouldn't have been followed up by a cough, lymphedema flare up, stomach cramps, bug bites—I'm grateful for every day we have together, but yeash. I like the peaceful, quiet times better than these torturous ones.

    I really appreciate your responses. It's easy to feel frustrated and alone, and sometimes you just need a moment to seek out someone to help prop you up so that you can keep everything moving in the right direction with a smile on your face...

  • Emilylaughed
    Emilylaughed Member Posts: 50
    edited June 2016

    Thanks, Marie. I think that at the end of it, we have a series of non-life-threatening issues that are adding up to be harder to fight than cancer—because it's harder to treat the whole body when she isn't on a whole-body plan. (One group's treating cancer, one is treating an infection, one is treating her swelling, and no one is treating her whole symptoms.) Everyone is doing a great job doing what they're doing, but it's all affecting the other thing.

    She called to make a PCP appointment because she still feels so crummy. We'll see what she has to say. I'm supposed to go away next week, and it's so hard to leave when she's feeling like this.

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