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56, stage IV adenocarcinoma - what to expect

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I've been lurking in these forums for a few weeks now and am just now getting the courage to post something. I'm sorry this will be lengthy. 

My father in law was just diagnosed with stage 4 adenocarcinoma. Just six/seven weeks ago he started complaining of pain in his neck and hip. A few weeks passed and he could hardly walk. Within four weeks he lost 30 pounds (was only 150 pounds to begin with). He was VERY stubborn but we were eventually able to drag him to the ER.

Since he has been in the hospital we learned that he has mets all through his bones (spine, skull, shoulders, hips, rib-cage, femur), adrenal glands (both kidneys), muscles, and of course his nodes. No brain mets, but they weren't able to complete an MRI, just the CT. His calcium levels were very high, but brought down with the IV. He has a large mass in his right upper lobe, and one resting between his throat and his spine. His C2 and T7 both have pathological fractures, and C2 looks like it is literally in pieces on his CT scan. Obviously he can't turn his neck, and actually dislocated both shoulders while adjusting himself on the bed. He can only sit straight up and isn't allowed to lie down on his back due to excruciating pain and the chances he will completely break his neck/back.

We have been informed that there is no cure, only palliative care. He has the option to do radiation on his spine and/or go home with hospice. He will be living with me and my husband until he passes.

I suppose I'm just wondering what to expect. The doctors have not been clear about his life expectancy. Since he has been in the hospital (two whole weeks now) his muscles and fat have wasted away, his shoulders are dislocated, he sleeps nearly all day long, and seems like he goes in and out of being coherent. Even when he is awake and alert his words often do not make sense, and he has started complaining of double vision. Often he cannot remember conversations he's had with the doctors, or even his family. His palliative care doctor does not think he is capable of making decisions any longer.

Yesterday they took him completely off the IV and the nurses don't seem to check on him as much. Apparently this is because his IV's continue to leak and "fall out", but I'm not sure if this is common.

I just feel so confused. NSCLC supposedly spreads slowly but it seems like he's falling apart fast. The doctors will not tell me what to expect. I'm wondering if anyone here has a similar story. I haven't read many so far and it's hard not to feel completely lost. Even many doctors say they haven't seen lung cancer progress into the muscle so they can't offer much perspective.

Any responses appreciated. I'm sorry for the length and any typos. 

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Hi, bly, and welcome.

I'm so sorry to hear about your FIL.  Lung cancer can be slow growing, but it can get very far advanced before symptoms appear that cause someone to go to the hospital.  You definitely want palliative care for him, and I'd suggest talking to someone from hospice.  The folks I know who have used hospice found it to be a godsend, making it much easier for the patient to remain at home with their loved ones.  

I think it's always tricky to try to predict how long someone will live, but it sounds as if the cancer is so advanced that it won't be very long.  What's most important is for him to be as comfortable as possible.  

One other suggestion--it might be good to discuss an advance directive with him--without one, medical personnel sometimes are compelled to use CPR and other measures to resuscitate and prolong life, which he may not want.  Many people prefer to simply be allowed to die when the time comes.  An advance directive has to be done while he is still competent, so you shouldn't put off the conversation for too long.

I hope you remember to take care of yourself and your husband at this time, too.  This sort of thing takes a toll on family.

Teri

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36 minutes ago, LexieCat said:

Hi, bly, and welcome.

I'm so sorry to hear about your FIL.  Lung cancer can be slow growing, but it can get very far advanced before symptoms appear that cause someone to go to the hospital.  You definitely want palliative care for him, and I'd suggest talking to someone from hospice.  The folks I know who have used hospice found it to be a godsend, making it much easier for the patient to remain at home with their loved ones.  

I think it's always tricky to try to predict how long someone will live, but it sounds as if the cancer is so advanced that it won't be very long.  What's most important is for him to be as comfortable as possible.  

One other suggestion--it might be good to discuss an advance directive with him--without one, medical personnel sometimes are compelled to use CPR and other measures to resuscitate and prolong life, which he may not want.  Many people prefer to simply be allowed to die when the time comes.  An advance directive has to be done while he is still competent, so you shouldn't put off the conversation for too long.

I hope you remember to take care of yourself and your husband at this time, too.  This sort of thing takes a toll on family.

Teri

Teri,

thank you so much for your kind and honest response. the DNR has been a great topic of conversation, and he has been adamant that he wants to be resuscitated. my husband, the doctors, and I have spent a great deal of time explaining to him what that will really mean for him. he's still very much in denial about how terminal this is and believes he is going back to work in a few weeks.

as it stands my husband and I have POA but want to respect his wishes even if we don't agree with them. this has been so difficult.

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I'm also sorry to hear about your father-in-law. I concur with what Teri said about everything. In making a decision about spinal radiation, It's important to know what the goal of it is. My mom had breast cancer metastic to her spine and radiation gave her a lot of relief  from pain. Her cancer hadn't spread as much as your F-I-L's has, though. You might ask the palliative care doc what he could expect from radiation.

 I agree with Teri that this takes a real toll on the family. It's a real struggle to try to carry out someone's wishes whan they are different from your own sense of what's best. Do take care of yourself and know that a lot of us have been through similar things with loved ones, although it's never really the same. Let us know how we can support you.

Bridget O

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Yeah, it sounds like he is having trouble accepting what's happening.  I watched my mother die of metastatic breast cancer 30-some years ago, and she was put on a ventilator after surgery for a stress fracture, and she lingered for a few months that way.  It was much harder, back then, to discontinue treatment even when the patient wanted it.  

Does the hospital have a social worker or counselor who could maybe help him process some of this stuff?

Hang in there, and keep posting here.  We have a great group of people here on the forums and it's a terrific place for support.

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Bly,

i don’t have any suggestions beyond those offered by Teri and Bridget.  I endorse their view. You face an uncertain path over unknowable terrain. 

I pray for peace for your family and wisdom for you and your husband. 

Stay the course.

Tom

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