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decision point: caregiver husband needs advice

pc1
Posts: 2
Joined: Jan 2012

quick background: My 52 year old wife was diagnosed July 2010 w/ inoperable stage 3b nsclc. May 2011 mets to brain (gammaknife to arrest..back on Dex) Dec 2011 mets to cspine vertebrae (raditaion and still on Dex). She's been on Decadron 8mg/day for months.
last 3 weeks have been crazy psychosis. Haldol proscribed for calming her down. began gentle tapering steroids 3 days ago, now massive leg pain. Oxycodone not helping pain much today, and she can't sit still. wide ranging symptoms now: shakes, vision(can't read), mobility, weithg gain, sleeplessness, attention span, pain.

She's strong, but losing her personality. Quality of life low to say the least.

Not sure when to bring in Hospice, as she is also still on Alimta treatments, which may have to end if we go to comfort care only.

any advice? We're struggling here...
thanks
-pat

dennycee
Posts: 643
Joined: Mar 2011

Many of the symptoms you describe we experienced with my mom before her brain mets were discovered. It is possible that she has new brain mets. Call her onco and give him full description of behaviors and problems. My onco is very good about after hours calls maybe hers is too. Give him a call tonight, there may be a relation between beginning the taper 3 days ago and psychosis of last 3 days. II is hard to be a caregiver and have to make these decisions. You may want to make an appt with the social worker so you can vent your frustrations. She may need a stronger medication like phentanyl.

I have dealt with this disease issue from both sides and, frankly, I think it is much harder to make decisions from caregiver side. My heart goes out to both of you.

Edit: I have never used avastin but it does have some serious side effects that can affect the brain according to their website, call her doc tonight. And an FYI, when she developed a mets her status changed to stage 4.

pc1
Posts: 2
Joined: Jan 2012

thanks so much for your advice, I have contacted her primary onco, and pain mgmt is now better w/ addtl oxy dosage.
I was being overly brief in my original post, I understand she entered stage 4 last May when the brain met happened. when she was in hospital 2 weeks ago - due to onset of the (I hate using the word) 'psychosis', a brain MRI revealed no new mets, and slight decrease in size of the old lesions, that's why they think it's the Decadron that's causing her psychological distress, and her pain.
for now, Haldol and Oxycodone are our course, hoping steroid reduction will obviate need for either sometime soon.
thanks again,
-p

ColoradoDani's picture
ColoradoDani
Posts: 65
Joined: Sep 2011

I'm glad you seem to be getting things figured out with regards to meds. I know how hard it is to figure all of that out.

This past year was pretty awful with regards to lung cancer. My husband was diagnosed and ultimately staged at 3B. He is currently NED and just got back from a great day of skiing (though he says he felt that scar tissue in his lungs at the high elevation). His mother was diagnosed with stage 4 lung cancer about 6 weeks later. She passed away in October. It was as peaceful of a passing as one can have in these situations. Of course, I was extremely worried about my poor husband and how much a person can handle at once, but he handled his mother's degeneration quite well, largely due to the presence of hospice.

Hospice was called in for my mother-in-law fairly soon after her diagnosis even though she still had a a high quality of life. Initially, the nurse and aide came once every couple of weeks just to check in, then it progressed to full-on care by the end and they were at the house many hours a day. So, if you're wondering if you should call hospice, it might be worth doing a consultation to see what they think and what services they could offer now (if any) and then later as your wife progresses. They truly were great--they told our family what to expect and what signs to look for. The whole family, not just my mother-in-law, took great comfort in their services...I assume services are fairly similar across the country, but I could totally be wrong about that.

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

My husband was diagnosed with Stage IV NSCLC with mets all along his aorta on 3/3/11. When he refused to go to the doctors in May the doctor called the hospice team and put him right on it. I did however do some consultation with them first to see what happens, what is offered and the like.

As my husband was always stubborn to begin with, he accept the nurses when they came but only wanted me to touch him. But they were a great help for me being the caregiver.

I pray for you and your family.

God Bless,
~Kelly
wife of Mark RIP 11/14/11 NSCLC with mets

ColoradoDani's picture
ColoradoDani
Posts: 65
Joined: Sep 2011

repeated post

ColoradoDani's picture
ColoradoDani
Posts: 65
Joined: Sep 2011

I'm glad you seem to be getting things figured out with regards to meds. I know how hard it is to figure all of that out.

This past year was pretty awful with regards to lung cancer. My husband was diagnosed and ultimately staged at 3B. He is currently NED and just got back from a great day of skiing (though he says he felt that scar tissue in his lungs at the high elevation). His mother was diagnosed with stage 4 lung cancer about 6 weeks later. She passed away in October. It was as peaceful of a passing as one can have in these situations. Of course, I was extremely worried about my poor husband and how much a person can handle at once, but he handled his mother's degeneration quite well, largely due to the presence of hospice.

Hospice was called in for my mother-in-law fairly soon after her diagnosis even though she still had a a high quality of life. Initially, the nurse and aide came once every couple of weeks just to check in, then it progressed to full-on care by the end and they were at the house many hours a day. So, if you're wondering if you should call hospice, it might be worth doing a consultation to see what they think and what services they could offer now (if any) and then later as your wife progresses. They truly were great--they told our family what to expect and what signs to look for. The whole family, not just my mother-in-law, took great comfort in their services...I assume services are fairly similar across the country, but I could totally be wrong about that.

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