adenocarcinoma IIIB, or IV?

[Lyfe]

 Four years ago my dad was found a 'nodule' in his right/upper lobe, and had a VATS to cut off that 'nodule'. The doctors decided that 'nodule' was not a tumor during the operation, so they did not cut the whole lobe. He was a long-time smoker, and we felt lucky then. 

He was diagnosed lung cancer IIIB (PET-CT) in 2021 February in a revisit. No symptom, just a follow-up. This time, they found a tumor in the same right lung, upper lobe, and several in lymph node in the left lung (3A zone?). He had a VATS lobectomy for the right/upper lobe immediately. They confirmed lung adenocarcinoma. Unfortunately, they did not find any useful gene mutations, and he is insensitive to PD-L1. 

Few days ago he finished his first chemo. He had serious hypersensitivity to one of the chemicals, Nedaplatin.  Other than slight stomach upset he was fine since the first chemo, until 3-4 days later he starts to have nausea and fatigue.   I just looked at his reports. They suspect something at the adrenal glands based on the CT scan taken right before his chemo. My understanding is he may be in stage IV? 

Is there anything I can do to help him live better with chemo treatment, and to improve his mental health? I would also appreciate your thoughts on the adrenal glands nodules. Thank you.

PS: he is in China. All the diagnoses and treatments were done in China.

[LexieCat]

Yes, IF he has a metastasis to the adrenal glands, he would be Stage IV. I wouldn't worry too much about whether he's Stage IIIb or Stage IV, if that's the only spot where it's metastasized to. I'm Stage IV due to a VERY tiny met to my sacrum. My doctor explained that is what's considered "oligometastatic"--where the spread is to only a very few spots. The treatment offered is similar, though Stage IV is considered incurable (doctors don't like to use the word "cure" with lung cancer, anyway, and many people with Stage IV disease do very well over the long term). 

One of the things most helpful to MY mental health is being a member of this group. Are there any lung cancer support groups where he lives? I found it encouraging to talk to others with similar diagnoses who are doing well and also able to exchange tips and suggestions for coping with treatment.

Here's some info about chemotherapy in general: https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/chemotherapy. Everyone responds in a different way--different side effects and different response in the cancer. Not every chemotherapy drug is appropriate for every person. 

One thought would be to connect him with a palliative care specialist. They can help relieve symptoms related to side effects from chemo or other treatment.

Edited March 22, 2021 by LexieCat
Forgot link to chemo info

[Joycecotton]

You may want to have your dad or the caregiver in China consider joining a similar support group like Lungevity Forum so they are more freely to share and exchange the side effect with other peers. In some big groups, there are more than 500 active members and discuss different lung cancer related topics on a daily basis. With someone he could talk to, it might also help improve the mental health. There are many different kinds of such groups available through WeChat. 

Joyce

[Lyfe]

Thank you Joycecotton. Do you think he would benefit from discussing with his peers, or it would be better for him not to be overwhelmed by all kinds of discussion/information? 

[LexieCat]

I think that's a personality issue, more than anything else. I love hearing about what's going on with others, even if their cancer and treatment isn't the same as mine. It makes me feel less alone and increases my understanding of my own disease. It helps to de-mystify things like treatments and test results. Other people don't want to hear/think about cancer--even their own. 

I'd discuss it with him and encourage him to give it a try. It might help if it's something online where you could participate, too, and maybe help him keep his perspective. If he absolutely hates the idea, or tries it and it's not helpful, then I wouldn't push it. People ARE different, and there's no need to add to his stress by insisting it's something he has to do.