Help on what to expect for lung cancer caregiver

@environmom
I haven’t walked the path you are on but unless I’ve misunderstand your situation/need, if I were you, I think I would go back to the doc who sent your mom to the disengaged oncologist and explain that your mom needs someone to engage with her - with an objective of helping her manage side effects, diet, symptoms, etc. I would explain that she (and you) are drifting here and you both need help. Ask him/her - Who is that?

Welcome to this wonderful and terribly helpful, supportive, site. We have some awesome mentors and I’m positive one will pick this message thread up and offer their wisdom. In the meantime, I’m Pam and I had a lobe of my lung removed 7 months ago for stage 1 Adenocarcinoma. So I know a bit of what your mom is dealing with.

Sending good JuJu to you and your Mom.

Hi Pam, thank you. I will try that.
The problem is that mom doesn’t want to know. I live with her, have never dealt with this cancer, and maybe I don’t want to know either. But I kind of need to. I can message or call her doctor but they will put in on her “Past visits” file and she will be upset. That’s why I came here, to get an idea of what others are going through. For instance, she is always cold, which I understand is typical, but sometimes she gets hot even if the house is a bit chilly. And now she has gout in her foot, never had that before. She did message her doctor about that, waiting to hear back.
I’m sorry to hear you’re going through it too. Hope all goes well for you.
Sending positive energy,
Laurie

Just to confirm I understand, she has a stage 4 adenocarcinoma, which means they did some kind of pathology. Was that done via a biopsy or biopsies? And when you say it is slowly growing does that mean more lesions are showing up on her PET scans? Or that the primary lesion is increasing in size? I’m trying to consider how one would know what may be causing her temperature regulation issues.

Sorry, my initial post is not very clear. She had pleural fluid biopsied. There were a couple small masses on her right lung. Also one in a rib. It has not been found in other places, but now there is something on the left lung.
They considered it stage IV due to the pleural fluid. For the most part the original masses are slowly growing, but this last scan showed something on the left lung. All lymph nodes are normal.

I admit to not knowing much about the exclusionary criteri for different treatment options. But I know we have several people on this site who are taking Keytruda. It being holidays, let’s give a few time to get back into their routine of checking in. We may find that your Mom’s current symptoms are associated with keytruda- and they know some approaches to mitigating them. I will go copy their handle here …
@colleencolleenyoung - Could you recommend some members who could support this new member ?

@merpreb could you suggest some resources for @environmom ?

My name is Jennifer. I am a nurse and still know little about cancer. I have stage 3b adenocarcinoma. This website provides information on your moms type and stage of lung cancer. There is also Google-I have found a wealth of knowledge about drug treatment and symptoms.
Prayers for you and your mom 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻

My brother who is in Pennsylvania also has stage IV adenocarcinoma. He is on maintenance chemo of 2 drugs and Keytruda. He is doing better as far as pain. He will get scanned in January. Chemo for myself has some side effects. Headache and tiredness. He too has that and no appetite. I would Google or Web MD information. ☺️

I know a couple of people on Keytruda who had some of your mentioned side effects. I wouldn’t assume anything though. I think keeping log of the side effects and sharing with the oncologist is key. Also, there is no harm in getting a second opinion and her current oncologist should not be offended by that, but rather, be helpful to you in working through that. I take a targeted therapy drug, and have shared all of my side effects via my patient portal and have had great responsiveness from my care team in addressing them. Some are more concerning than others. I do try not to use Google etc because there is broad information that isn’t unique to your mother there. Her care team is the best resource. Also, ask about palliative care. That is meant to help manage side effects. It isn’t hospice or end of life care as most people think of it. Hope you get the answers you need. Take care.

@environmom - Laurie- Hello, it's nice to meet you. It's very, very difficult as a daughter when a parent is extremely ill. I don't know if any of us are prepared However, I think that your mom has given you help in the form of hints. She doesn't want to know about or do anything about her cancer. I'm afraid that you will have to accept this.

At this point, I think that going forward is your best bet and not lamenting what could have been. That's a guilt trip that you don't need or want. No matter how you see this, your mom has chosen not to help herself. I believe that your job is to help make her as comfortable as possible. When you take her to the doctor, ask him what kinds of things will help her remain comfortable. The symptoms that you state are common both to her medication and her lack of nutrition. Her symptoms, as her disease continues to spread, will increase.

I agree with @dragonspark about using Google to find information about her condition. I would, however, use it to look up word definitions, etc. I also agree with looking into palliative care. You would do this through her doctor's office. And a second opinion, unless your mother objects, might be worthwhile.

As the cancer continues to spread, it will affect her appetite. You can't force her to eat. Will she drink a protein smoothie?

You have been extremely honest about how your mother feels about her future. Have you asked her what she wants as far as her care?

Another group that I would recommend for you is the caregiver's group.

Many conversations might answer your questions.

Watching your mom right know must be heartbreaking. I understand this. I was a caregiver for my mom who had another illness. Until this sort of situation happens, no one knows what to expect. Each person is different and each person's illnesses affect them differently.

Laurie- I can tell you are doing your best and might feel at wit's end. Some other basic things you can do is make sure that her legal papers have been drawn up. Does she have a will? Are you on her bank accounts as a co-signer?

How else can I help?