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Advanced NSCLC: What to expect when treatments fail


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Hello, my name is Christine. In Nov 2016, my Mom was diagnosed w/ Stage IV metastatic adenocarcinoma NSCLC (primary: right lung, spread to both adrenal glands, brain & right proximal tibia).  She had surgery to remove the tumor in her right tibia, which they filled with bone cement to stabilize the bone. She has completed whole brain radiation, radiation to the right tibia, 2 rounds of chemo: Paraplatin (Carboplatin), Alimta (Pemetrexed) & Avastin (Bevacizumab) & 6 Opdivo (Nivolumab) treatments. The chemo & Opdivo were both unsuccessful. Since her last scans 3 months ago, the cancer is spreading/growing in the bones (spine, hip, both tibia, left fibula, & sacrum) in her lung, adrenal glands (lung tumor & adrenals mets doubled) & possible spot on the liver. The good news is the WBR radiation helped, out of the 13 mets only 1 is left.  It seems as her cancer is receptive to radiation but not chemo or immunotherapy. The remaining treatment options are becoming scarce. The Oncologist offered 3 options: 1- Do nothing. See her once a month, if possible treat pain/issues as they arise. The Oncologist estimates life expectancy to be 3-6 months.  2- Chemo: Docetaxel 1x every 3wks. 3- Chemo: Gemcitabine 1x every week for 3 weeks per month. Estimated life expectancy for both chemo options is 6-12 months. However, based off her chemo history her QOL will be severely impacted.  My Moms primary goal is quality of life & has chosen to treat issues as they arise. Tomorrow, her 72nd birthday,  she will have her 1st of 5 radiation treatments to mets in her right tibia & fibula b/c they are causing severe pain.  

Sorry for the excessive details, I'm emotional, confused & scared. My main objective in writing tonight is to ask the tough question, what generally happens when treatment is basically stopped.  I know everyones situation is different, so there wont be a cookie cutter answer. I'm looking for honest, straight forward, even blunt info as to what we are facing as this disease keeps spreading. 

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Christine,

Honest, straightforward and blunt, that's me!

Normally folks when exhausting curative treatment choose hospice care coupled with palliative treatment to eliminate pain. That is what I will do should my cancer recur and prove unmanageable. 

The objective of hospice care is to allow one to spend quality time with friends and family while avoiding pain and discomfort. Side effects are minimal to non existent. Hospice also assists family members in coping with the situation. 

We all die. I don't want to pass connected to tubes and suffering wretched side effects from curative treatments with little probability of success. I'd ask your mom's oncologist to recommend a good in-home hospice care provider. 

Stay the course. 

Tom

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Tom, 

Thanks so much for your reply, information & honesty. 

Like you, my Mom doesn't want to pass connected to tubes & suffering. I will ask the oncologist for a good in-home hospice care provider. 

I have one more question, I'm hoping you can help with. I hope I am not being out of line or disrespectful by asking this, as that is definitely not my intent. Do you know or can you point me in the direction to some info regarding what we are facing in the upcoming months. I completely understand the gravity of the situation, I just want to know (if possible) what to expect as the disease progresses. We are blessed that, when she is up for it, my Mom can still go for walks, go to the store, cook a meal....pretty much she is virtually fully functioning. I know this isn't always going to be the case & am hoping for, if possible, some insight as to what is coming. 

Thanks again for your information & your time. I wish you many blessings & strength throughout your fight with this terrible disease.

Many thanks,

Christine 

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Christina,

I can only give you a general answer as to what to expect. Lung cancer at late stage becomes invasive. It can effect other organs and as organ efficiency wanes, symptoms start to show. These could include jaundice as a liver symptom or bladder control problems in the event the urinary tract is involved. Invasion of bones is likely and pain is the result. This is controlled by palliative radiation and strong pain medications. 

Since everyone's disease progression is different, the hospice care will differ. I know the objective of hospice is to make the journey as comfortable as possible. It is not to impede normal activity; it is to allow and assist normal activity for as long as possible. 

I did some hospice investigation when it looked like that was my path 13 years ago. My oncologist recommended the hospice organization and I went to their place of business and listened to their care procedures. I was impressed that, unlike a hospital admission, there were few rules. If I wanted to go for a stroll, there was no permission requirement, but a common sense procedure of ensuring my care giver or hospice nurse of my location. A text message was all that was required. If I was feeling pain, pain medication was dispensed. No waiting for doctor's approval. 

Kindness seemed to be the governing condition of hospice treatment. 

I think a good next step would be to ask your oncologist to recommend a in-home hospice care organization and visit them and discuss the process. 

Stay the course.

Tom

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