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Hospice or treatment?

Posted by artistrose @artistrose, Jan 29 9:45am

I have Adenocarcinoma lung cancer with mets to 4-5 areas of liver and to the pancreas. I’m looking at this as a death sentence. Leaning towards hospice and not treatment. Waiting for 1st oncology appt! From what I’ve read, chemo does little for liver cancer. Immunotherapy seems to set off pancreatitis, which I already have and I’m on low-fat diet as pancreatic attacks aren’t fun. Maybe radiation is possible but I’m also not into torturing myself with side effects to delay the inevitable. I’m on the verge of calling in my own hospice referral. Or wait for oncologist ?who I’m sure will urge some type of treatment. I’m just not sure its realistic given my Mets status. Anyone with liver and pancreas mets with thoughts?

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artistrose | @artistrose | Mar 16 6:07pm
In reply to @lls8000 "@artistrose, I'm glad that your biomarker results came back! I was off-line for a bit, so..." + (show)
Profile picture for Lisa, Volunteer Mentor @lls8000

@artistrose, I'm glad that your biomarker results came back! I was off-line for a bit, so I'm just catching up. You'll find the right balance in treatments, holistic, diet, etc. It can be overwhelming. It's great that you are involving palliative care right away, I love that idea.
“When Breathe Becomes Air,” by Paul Kalanithi is one of my favorites. I read it once a year at my diagnosis anniversary for the first few years. It can be too sobering for some people, but I love that it addresses the realities of the disease.
When will you have scans again? CT and Brain MRI?

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@lls8000 Thanks for responding. I hope you’re well and had a nice break. Today I scheduled my 2nd Brain MRI for end of April. I had a 2nd Pet Scan a few weeks ago but prior to starting treatment. I think oncologist said scans every 2-3 months. I met with palliative counselor today and with palliative doctor tomorrow. Next week towards end have 2nd chemo cycle start.
Question: did you continue maintenance chemo while on your targeted therapy, and if so, for how long? Just curious.

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mamajite | @mamajite | Mar 16 6:32pm
In reply to @lls8000 "@artistrose, I'm glad that your biomarker results came back! I was off-line for a bit, so..." + (show)
Profile picture for Lisa, Volunteer Mentor @lls8000

@artistrose, I'm glad that your biomarker results came back! I was off-line for a bit, so I'm just catching up. You'll find the right balance in treatments, holistic, diet, etc. It can be overwhelming. It's great that you are involving palliative care right away, I love that idea.
“When Breathe Becomes Air,” by Paul Kalanithi is one of my favorites. I read it once a year at my diagnosis anniversary for the first few years. It can be too sobering for some people, but I love that it addresses the realities of the disease.
When will you have scans again? CT and Brain MRI?

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@lls8000 everything ok with you? I hope you were off line for something fun or relaxing.

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mgamga2003 | @mgamga2003 | Mar 16 8:29pm
In reply to @lls8000 "@mgamga2003 , This recurring shortness of breath (SOB) has to be frustrating. It sounds like you've..." + (show)
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@mgamga2003 , This recurring shortness of breath (SOB) has to be frustrating. It sounds like you've talked with your pulmonologist several times about this and tried some alternatives to the prednisone. Do they know what's causing the SOB? Is this related to the previous immunotherapy treatments?

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@lls8000
Thank you for the reply
I believe the immunotherapy (and radiation) treatments (which ended in early 2025) exacerbated and has compounded the COPD and resultant recurring SOB.
But I will follow up with my pulmonologist again.

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Lisa, Volunteer Mentor | @lls8000 | Mar 17 3:55pm
In reply to @mamajite "@lls8000 everything ok with you? I hope you were off line for something fun or relaxing." + (show)
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@lls8000 everything ok with you? I hope you were off line for something fun or relaxing.

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@mamajite, Yes!, I'm good. I was doing a little late-winter traveling. In search of sun away from the mid-west cold and clouds. I found it and enjoyed my time away. 🙂
It's so nice to come back and see these discussions continuing and thriving. This is such a helpful group!

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Mentor
Lisa, Volunteer Mentor | @lls8000 | Mar 17 4:13pm
In reply to @artistrose "@lls8000 Thanks for responding. I hope you’re well and had a nice break. Today I scheduled..." + (show)
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@lls8000 Thanks for responding. I hope you’re well and had a nice break. Today I scheduled my 2nd Brain MRI for end of April. I had a 2nd Pet Scan a few weeks ago but prior to starting treatment. I think oncologist said scans every 2-3 months. I met with palliative counselor today and with palliative doctor tomorrow. Next week towards end have 2nd chemo cycle start.
Question: did you continue maintenance chemo while on your targeted therapy, and if so, for how long? Just curious.

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@artistrose, Thanks! I'm hoping that your second chemo cycle is well tolerated. Your doctor can certainly add more info, but I believe the studies that showed improvement with the combined chemo and Tagrisso for stage IV EGFR are fairly recent (FLAURA2). It's great to know that you are getting the most recent recommendations that are right for your specific cancer.

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mamajite | @mamajite | Mar 17 9:16pm
In reply to @lls8000 "@mamajite, Yes!, I'm good. I was doing a little late-winter traveling. In search of sun away..." + (show)
Profile picture for Lisa, Volunteer Mentor @lls8000

@mamajite, Yes!, I'm good. I was doing a little late-winter traveling. In search of sun away from the mid-west cold and clouds. I found it and enjoyed my time away. 🙂
It's so nice to come back and see these discussions continuing and thriving. This is such a helpful group!

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@lls8000 delighted to hear it!

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freitag | @freitag | Mar 20 12:50pm
In reply to @colleenyoung "@artistrose, you've gotten some excellent tips from fellow members living with lung cancer. I'd like to..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@artistrose, you've gotten some excellent tips from fellow members living with lung cancer. I'd like to join the huddle and offer a couple of things to consider as you prepare for upcoming appointment with the oncologist.

First learn about palliative care vs hospice. They are related but different. Hospice is care at the end of life. Palliative care is available to you at any time after diagnosis. It is sometimes called symptom management care or comfort care. Palliative teams help keep you comfortable and keep the pain well managed and symptoms under control. These symptoms may be as a result of treatment side effects or, should you chose not to have treatment, as the disease progresses. Palliatice care can be offered along with treatment.

See this helpful diagram:
- Palliative care vs hospice care: What's the difference? https://connect.mayoclinic.org/blog/take-charge-healthy-aging/newsfeed-post/paliative-care-vs-hospice-care-whats-the-difference/

To the list that @mamajite suggested you start, I would add:
- Can I get a referral to palliative care?

As @lls8000 suggested, learn about the treatment options and their risks and benefits for YOU. Once you learn about potential side effects, you can decide whether these may be side effects you are willing to try to tolerate or if they would not be acceptable for your definition of quality of life.

So, to get you started I would questions like:
- What treatment options are available for me?
- What are the possible side effects?
- How long would you expect this treatment to extend life?
- How long will I be on treatment?
- If the side effects are too much, can I stop treatment? Or take a treatment holiday?
- Is the cancer in my liver and pancreas, cancer that has spread from my lungs? Will the same treatment help reduce the cancer cells everywhere?
- Would you recommend palliative care?

Now I have a question for you, @artistrose. What questions would you add? 🙂

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@colleenyoung
Thank you for this informative and valuable reply. It is a great road map for a person facing choices. Some people feel it is all (fight like heck til their last dying breath) or nothing (no treatment whatsoever), not realizing the road may wend its way through many options.
And each person has their personal definition of quality of life.

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jmg1 | @jmg1 | Jun 12 11:49am

I have metastatic LMS… Started 5 yrs ago in the IVC metastasize to the lungs bones, pancreas, and liver. Had the two surgeries and many radiation treatments and for the last two months, I have tried chemo, which was a nightmare. I look at quality of life and feel that there isn’t any treatment that can give me anything but more days of side effects And it just is just putting off the inevitable….so I’ve decided to work with hospice in home. This is a very personal choice to everyone that has this situation. I’m looking at many options, including MAID in Vermont.
Initially, I decided to take six Weeks off of chemo just so that I could clear my head and make a good decision.
One can always return to chemo but doubt if that’s gonna happen for me.
Best of luck to you… It can be a tough decision.
June

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artistrose | @artistrose | Jun 12 12:57pm
In reply to @jmg1 "I have metastatic LMS… Started 5 yrs ago in the IVC metastasize to the lungs bones,..." + (show)
Profile picture for jmg1 @jmg1

I have metastatic LMS… Started 5 yrs ago in the IVC metastasize to the lungs bones, pancreas, and liver. Had the two surgeries and many radiation treatments and for the last two months, I have tried chemo, which was a nightmare. I look at quality of life and feel that there isn’t any treatment that can give me anything but more days of side effects And it just is just putting off the inevitable….so I’ve decided to work with hospice in home. This is a very personal choice to everyone that has this situation. I’m looking at many options, including MAID in Vermont.
Initially, I decided to take six Weeks off of chemo just so that I could clear my head and make a good decision.
One can always return to chemo but doubt if that’s gonna happen for me.
Best of luck to you… It can be a tough decision.
June

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@jmg1 My situation that I originally posted has changed a lot. I found out I have a gene mutation, L858R exon 21, and I started a treatment for that in February. I’ve done 3 cycles of combo chemo and had to stop due to Gai issues and just got diagnosed with EPI. I agree that chemo is awful. My recent scans were really good with a lot of shrinkage. I’m just 6 months in and you’re five years in so undoubtably you’ve been through the mill. Quality of life is very important to me and I have a palliative care doctor who helps me with that. I understand what you are saying and wish you well in your decisions. Each one of us has to decide what’s best for us.

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