Stage IV Lung Cancer, NSCLC Adenocarcinoma, Ketruda & Dementia

[Deb J]

Hi, Thank you for letting me join this group. My husband was diagnosed with Stage IV Adenocarcinoma in October.  This has really been a whirlwind!  He has fluid on his lung and I drain it at home.  He had mild dementia before he began treatments, but it seems to be getting worse.  I am wondering if anyone else has had the same experience as we are.  His oncologist seems to be ready to stop treatments and put him on hospice due to the dementia.  I had always heard that oncologists always have another plan...they always have another treatment.  He has not re scanned my husband to see if the Keytruda is working.  I am reluctant to stop treatments...he has only had 2! I am caring for him in our home,  by myself.  I am wondering if this is because of his age?  I am really at a loss.  The doctor wants us to come in tomorrow and talk.   Any advice is appreciated!  Thank you!  Deb 

[BridgetO]

Hi Deb and welcome. I'm sorry to hear about your husband's diagnoses. I see why you call this a whirlwind. I've never been in a situation like yours. The nearest iwas when my mom was having ongoing chemo every 3 weeks for metastatic breast cancer. She had neuropathy that was causing her tobcome disablee and she could no longer walk and she was beginning to lose the use of her hands. I lived hundreds of miles away, so was not her caregiver, though I was her health care power of attorney. She didn't have dementia prior to treatment, but after months of this chemo, she was getting increasingly mentally foggy. She was still making her own decisions and when she decided to discontinue her chemo against her oncologists advice, I supported her decision. So in a way it's the reverse of your situation.

How able is your husband to understand his situation and to espress what he wants? If he is able to do so, even though he has some mental impairment, If it were me, I'd be inclined to support him in what he wants, so long as it makes some sense and seems to be consistent with his values before he had dementia. If he is too impaired, then I'd want to know whether, before he became imparied, he'd expressed any wishes about end of life care and use that to guide decisionmaking. 

Does he have a neurologist and/or primary care doctor who can weigh in on the decision?  Personally, I don't think it's reasonable to deny treatment simply because of age or a diagnosis of dementia. If a person is in too poor of health to tolerate treatment, that's a different consideration.  

If your husband wants to continue treatment or if you think that's what he'd choose and it seems reasonable to you, but and the oncologist resists that, you could seek a second opinion.

This is a hard situation you and your husband are in. There may be  no "one right answe" but rather a number of reasonable paths. I wish you all the best.  

Bridget O

[LouT]

Deb,

I'm so sorry to hear about your husband's condition.  The dementia is a real complication to any kind of medical treatment.  My wife is in late stage dementia and I can tell you that many medications, procedures and other medical items that work well on normal people often have deleterious effects on those with dementia.  One reason is that the involvement of the nervous system complicates reactions to the medicines, regardless of what they are.  Also, as the brain damage progresses the bodies functions are not what you could normally expect.  I can't say with certainty what your doctor is thinking, but perhaps you should ask him why he is recommending this path of treatment (hospice).  By now you likely spent time with your doctor and hopefully you got the answers you were looking for.  My prayers are with you and your husband.  I understand what you live with everyday.

Lou

[Judy M2]

Deb, I am also sorry about your husband's lung cancer complicated by dementia. I have first-hand experience with both. My sister-in-law had dementia and terminal pancreatic cancer. Her diagnosis was too late for treatment and she wouldn't have understood what was happening to her if she had undergone treatments. 

Adding to Lou's comment, it may also be that some dementia sufferers aren't able to sit for infusions, cooperate with the nurses or tolerate side effects.

However, I've also had the experience with a loved one being pushed into hospice care. The hospital insisted that my father (98 at the time) enter hospice and they would not discharge him back to his assisted living facility. Clearly they did not want to treat him anymore. Fast forward and he has been under hospice care for more than a year and actually improved. 

I hope you get the answers you're looking for. Your role is very difficult and I wish you continued strength during these trying days.