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Good News/Bad News


Linda661

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First the good news! CT scan shows a 30% reduction in the large tumour that is causing mom to have her collapsed lung -- I thought that sounded good, considering she has only had 6 chemo treatments so far. 6 more are scheduled and 6-8 weeks of radiation will start shortly and will overlap the chemo a bit, by design. Lung hasn't reinflated yet, but it's too early to expect that.

The bad news is that the onc. still doesn't want to address the behavior issue, even with facility nurses notes to support what she is doing!!!! Even the facility is materially noticing her increasing confusion and they believe she is also depressed and needs more attention paid to that as well (she is on antidepressant medication already). The onc just said "let's not make too much out of this" (or something similiar to that) yesterday and didn't even pursue with one question about it. I am floored.

She did it to me again yesterday after chemo: and anything will set her off. We have some transportation issues to resolve right now and when she said I could bring her car to the facility and she could drive, all I said was I don't think you can be driving quite yet (something like that and she can't yet) and she got mad and said I was belittling her...there was more, but that's enough. It's like walking on eggshells...it's like she thinks everyone is out to get her and all I could do yesterday was get her back to the facility and say "mom, get some rest and I'll see you tomorrow." All she says is "don't bother." She sees me as being mad and angry at her during these "anger outbursts" -- that floors me too. Makes it impossible to hold a conversation at all. It depends on what day it is as to who is out to get her: Sunday, it was the cancer center, but luckily she kept her appointment yesterday.

I swear there's something about the chemo that just makes it worse as this has happened every chemo day, right after chemo. The effects are building too. Onc. said it's not the sodium/calcium levels either -- those are great.

Oh well, one day at a time: right now, I am just glad she isn't home as I don't know how I would cope with this 24/7, unsupported by her doctor. If anything, I really appreciated having "independent eyes" of other professional staff seeing this stuff so at least I know that I am not "making it up" and can perhaps get access to community resources to help her with this somehow: the social worker thinks that's a smart move on my part too. A new mental health assessment at the facility will happen soon: I couldn't easily do that if it were just her and me at home dealing with this.

Linda

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Linda,

Is your Mother getting a Steriod treatment with her chemo ? (most people do).

It can cause major mood fluctuations, and is attributted with rage and anger outburts.

Sometimes they can either lower the dose, or if they can't at the very least you can rest assurred in the reason for the changes in behavior....Joe

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Joe is right on...are they giving her Dexamethasone/Decadron with the chemo? It is a steroid that is often used along with chemo to help with side effects. It is also used for inflammation from tumors...my mom was on it for four months and never had any side effects. yet, there are MANY, MANY people here who have witnessed terrible outbreaks and mental confusion from it --- Look into it -- it could explain a lot of the issues.

Good Luck...and be so thankful for the scan results. I am hopeful they will get the mental/behavioral stuff under control.

Holly

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At our hospital they have a department of "psycho oncology" that deals with many issues related to emotional/behavioral issues that accompany cancer. For us it's one more "benefit" of dealing with a large treatment center... and they are specializing in the very things you're describing, especially side effects and interactions of various drugs and making adjustments in dosages. Worth looking into... sometimes the clinical docs are so caught up in the physical body that the mental part is relegated to low priority. For families, the emotional part is just as important!I have also heard that "antidepressants" sometimes can have almost an opposite effect... check out her symptoms with the experts! Good luck! Sandy

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I have to agree with Joe and Holly, Decadron makes me a mad woman! I have chemo on Fridays, and on Saturday mornings I feel like the Incredible Hulk -- so much rage and anger! Usually I take a couple of Benadryl to knock myself out, but not before I take advantage of the surge of energy that also comes with the Decadron -- I clean house like a banshee then. I take half the "normal" dose of intravenous Decadron during chemo and do not follow it up with any Decadron pills at home. My onc says my white cells and energy level suffer from the lack of Decadron, but I prefer that to the risk of killing my husband during one of my bursts of anger.

Hope you can find some combination that works for your mother. Your both in my prayers.

Trish

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Linda,

I'm sorry this is so rough for you right now! I know Mom and I struggled a bit at first. She was floored/ depressed by the diagnosis, as was I. She was upset at losing her independence. I was going crazy trying to do everything for her--found out she didn't want me doing everything for her. It ended up making her feel bad for taking me away from my own family, and I was upset because I felt like she didn't appreciate all I was doing.

Steroids were involed in these days, as was a lack of sleep on all parts and a great deal of fear. We tried to get an antidepressant for mom, but it wreaked havoc with her kidneys and system. We worked it out, and I am closer to my mom than ever.

I pray you will be able to find a solution as well. This disease hits us so hard on so many levels. it stinks!

Let us know how it is going.

:) Kelly

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Thank you so much for all of your input. I have talked with the pharmacy so far and decadron is not present (at least in her meds by mouth), but in reading all the side effects and such of everything she is taking (10 are new since this all started), there are several that can contribute to anger and rage....only Advair is supposed to have a steroid component, so far.....I have yet to find out whether decadron happens at chemo sessions, but it probably does -- you guys haven't missed a trick yet. I think I do have a "meds soup" going here that needs adjustments -- her primary doc is due to see her any day now and is supposed to contact me on some other issues as well: that's my next window of opportunity, given that the onc. hasn't been the most helpful with me so far (you'd think he would have twigged instantly to what I have been seeing and not brushed me off instantly twice if it's as common as everyone is saying).

I already know she is sensitive to the Benadryl she gets during chemo: it doesn't knock her out at all, in fact it irritates her. They did at some point cut the dose of that down during chemo and it did help. All of this (especially if I find decadron then) also explains why I see the anger thing after EVERY chemo session, since day 1. The rest of her meds mix helps explain why I see hit and miss problems between sessions including panic, anger, etc......makes it hard to sift out what is "normal" for what she is going through, versus what is drug-induced.

I also now have a mental health professional involved as well to help me help mom better (and help me too, quite frankly). Mom doesn't know when she's angry and she's exhibiting memory lapses and confusion which is worsening over time; some days it scares her that I say she is doing this and she doesn't want to talk about that, other days (when she's mad) she figures I am her worst enemy and am setting her up. I am hopeful that the mental health professional can also help me get the attention of the doctors on this meds thing if I bomb out again on my own -- if nothing else, we are gonna need that kind of support when she ever does come home if no doc wants to do anything meaningful with this.

Thanks again for your help! I don't know what I would do if I hadn't found you guys!!

Linda

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