I have stage 4 lung cancer: Anyone considered no treatment?

I had six or eight Keytruda infusions. I had two months of really miserable gastro-intestinal issues and had to stop infusions.
I am pleased that I did have the infusions. Those six to eight months may have done a lot of good. There really is no way of telling.

Thx for your reply.
Husband has bad GI issues too but doable with probiotics, fiber, stool softener, and the reverse as necessary. Is ok for 1.5 wks before starts all over again.

How long are you off Keytruda? Thx

I was diagnosed with lung cancer in 2020. Before knowing much about my situation, I knew I would be approaching treatment as a means to have a good life, but not necessarily a long life. I've known people who have struggled mightily to beat cancer with whatever means available to them, and sometimes that can be agonizing & miserable, yet worth it to them. I admire them and respect their choices. But I am not them.

I had a lobectomy back then. I had an adrenal gland removed two years later followed shortly thereafter by one radiation treatment on my brain for a couple lesions. Next week we are revisiting those lesions with three sessions of radiation.

I had little pain and quick recovery from both of the surgeries. There are no negative effects on my brain that I can relate to the radiation. My mind is not what it was, but I'm 74, probably have long COVID, a few brain injuries decades ago and Parkinson's is beginning to look possible. I mentioned my Keytruda experience in another response.

My outlook regarding treatments is that I will give them a try as long as it doesn't sound as if they will be too painful or too debilitating. I can always stop. So far it has been easy for me. I'm fortunate as I know these same treatments aren't easy for everyone.

You could have years of golf ahead of you with only the occasional down time for treatments.

such a journey for you and yours we just have to keep moving forward

I'm so sorry to hear about your Mom's problems with Keytruda! The suggestion of a second opinion is a very good one. My husband had lung cancer. They gave him Keytruda and he almost died from it. The cancer doctor didn't do anything to help except get mad when my husband refused to get anymore Keytruda treatments. He was approved for 6 more months of them. Keytruda treatments cost $25,000 per infusion! Our primary care doctor got my husband to the right specialist and he was OK. We changed cancer doctors.

Talk to God about your Mom's situation. He is there for you and your Mom. Just talk to him like he's your best friend and he is! It's good that you are there for your Mom. She's lucky to have you at this time.
I will say a prayer for both of you.
PML

Thinking of you @vwbug, I'm just checking in to see how you are doing. How are you feeling? How did the discussion go with your doctor?

Hello Lisa: Sorry, I just saw this message. I have stage IV non-small cell lung cancer. Adenomcarcinoma. I went through chemotherapy and radiation initially and for a recurrence about two years later (carboplatin, alimta, and avastin) and then was diagnosed and treated for prostate cancer in the middle of the lung cancer. I have been treatment-free for about 26 months. I also pursued acupuncture and high-dose vitamin C in conjunction with these standard treatments.

This may sound controversial, but I think there is something akin to a “skill” in surviving cancer, especially stage IV cancer, and most especially involving stage IV lung cancer.

In short, the doctors need to do their thing, but the patient’s mindset is also extremely important. That mindset involves getting second opinions (never an easy thing to do), becoming a citizen-scientist of sorts (knowing your disease as well as you can), and cultivating the will to live. These things, among many others, are done “in parallel to” medical treatments, and are usually fairly within one’s control. One cannot just delegate survival to the doctors.

Stage IV lung cancer is considered in the medical literature as one of the deadliest and most commonly diagnosed cancers on earth. It requires a fully engaged patient on many different fronts. It requires the most and best from the patient if survival is the goal.

I don’t claim to know all the answers, but am more than willing to discuss this with my fellow travelers for anybody seeking feedback.

@paulseyferth, There are too many of us with multiple cancers. None of us want to be experts at this, but we find ourselves navigating a world that we never wanted to be a part of. I attend an in-person group of stage IV patients that have all lived beyond what was initially expected. The knowledge shared and connections made have been comforting.
I'm glad you are doing well and figured out how to truly live with stage IV cancer.

These are encouraging responses. I’m a super healthy and active 58 year old recently diagnosed with stage IV lung cancer on New Year’s. I just found out I have another new primary cancer of the esophagus (GIST tumor). I agree with folks saying our outlook and positivity are critical. I’m a newbie and looking forward to encouraging engagement from this group.

If I may ask what other lung cancer support groups for have you found helpful? I’m finally over the shock of the diagnosis and think I’m ready for a support group. I know my husband is.

Thank you all 💕