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Feeling helpless and hopeless about my dad’s situation


lovingdaughter44

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Hi all,

For background, my dad (65) was diagnosed with stage IV NSCLC (mets to bones and lymph nodes) back in April (7 months ago). He started the standard cocktail of chemo and then switched to immunotherapy (Keytruda) once his biomarkers came back and his PDLs qualified him. His scans showed in late July that the immunotherapy seemed to be working—the primary tumor in his right lung had shrunk and there was no growth elsewhere. But then his next scans a couple of cycles later showed growth in the primary tumor but his oncologist was unsure whether it was the cancer growing or an infection. Fast forward to his last scans in November and it was confirmed more growth in the primary tumor and in the lymph nodes in his neck, armpits, etc. His oncologist took him off immunotherapy and suggested he enroll in the “one and only available clinical trial” available to him but he was sorted into the control group (odds were 50/50) and received the standard of care (docatexal) three weeks ago. He has gone down hill so quickly and is now on hospice as of Sunday. 
 

I feel completely helpless, hopeless, and alone and I guess am looking for any sort of suggestions of how I can best help and support my dad. On the one hand, I cannot stand to watch him suffer. He eats no more than 200 calories a day due to 24/7 nausea that has consumed his life for the past few months, has lost a scary amount of weight, is now on oxygen, etc. His oncologist has tried absolutely everything for his nausea and nothing seems to work. On the other hand, I cannot stand the thought of losing him, and while I am losing hope, I just cannot wrap my head around this being the end. Any guidance, suggestions of what I can do to help, etc. would be so useful at this juncture. 

Best, 

A loving daughter 

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Loving Daughter,

There was a time in my treatment history when we investigated hospice options. My 4th line treatment was not working. We were despondent. I was comforted knowing I would be pain free and my wife would have assistance taking care of me. I recalled being told that morphine administered orally would control nausea. You might ask the hospice staff about that remedy. 

I wish I had suggestions for you. I am a man of faith and relied on faith to sustain me during treatment. Perhaps that avenue is available. I would try and spend as much time with your dad as possible. Remind him of the good times. Try to get him to tell you stories of his childhood.  You might help him contact distant family members and use the FaceTime feature of the phone to allow him to see folks.

I know this is a time of tremendous sadness but remember your dad is still with you. Relish every moment.

Stay the course.

Tom 

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This is not the same thing, but I watched my 99 year old father decline for the last 5 months of his nearly 2 years under hospice care. It is hospice's job to make your dad comfortable. Morphine is the standard comfort drug, but there are other options.

Toward the end, my father was unable to swallow, and in his final days a decision was made among the care home administrator, hospice nurse and social worker and me to heavily sedate him and withhold all food and water. This was a merciful way to let him go. 

This is a really difficult time, but I hope you can share some precious moments with your dad. 

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  • 3 weeks later...

A friend who has lived with Stage 4 lung cancer for 16+ years was on death's door last year, literally. The last chemo treatment he had could kill him or it could change things for the better. Well, he's still here. 

I'm wondering if a second opinion with a specialist in the type of biomarker he has would yield more options at this point. 

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