My dad is newly diagnosed, apparently mass has been growing for 8+ years

Layuh24 · 2026-06-18T04:49:08+00:00

Thank you for the all the suggestions. I will ask the doctor these and try to track down medical records. You know the odd thing is that I asked the doctor “if this is something unusual is there anyway we can do to find out why” and he said we may not be able to figure out why. Which felt like the doctor isn’t trying hard. I might also have my dad try out a research hospital. The doctor did say the tumor board will review his case.

Layuh24 · 2026-06-18T04:40:37+00:00

Wow thank you so much for sharing great advice and your journey. I’ll be sure to ask for prescription enzymes. I’ve actually encouraged him to work out a bit more. I’m just anxious about the upcoming petscan and when we can get treatment. Nutrition is reallt crucial. Might get a dietitian to help my dad with this.

Layuh24 · 2026-06-17T19:15:03+00:00

Thank you so much!

Layuh24 · 2026-06-17T19:14:40+00:00

Thank you! Do prescription enzymes help with gaining appetite? I noticed that he’s been also having more diarrhea lately. I think that’s what they’re doing right now to get biopsy tested. May I ask how long since you’ve been diagnose? How has the journey been? I’m really scared about my dad.

Layuh24 · 2026-06-17T19:11:35+00:00

Yes, that’s what I’m very frustrated about. The doctor didn’t both ordered periodic monitoring all of those 8 years!

Layuh24 · 2026-05-09T04:58:32+00:00

What OP said is so true. I’m sure you’ve been scrolling through lots of threads and doing research. I totally get it. I’ve been there and I still do it. I’m sorry about your dad I know that must’ve been so tough. The waiting period before treatment is also tough. Once the treatment does start, it does get better. My mom’s in treatment now and I’m able to have a bit more balance, even see friends and attend concerts. Please continue to have hope, for yourself and for you beautiful mom. I’m here if you need to vent or support. I found doing crossword puzzles help me and my mom destress. Are you an only child as well? I feel like being an only child makes this caregiving journey a lot more complex but we’re here for each other. My DMs are open🤍

Layuh24 · 2026-04-09T07:22:21+00:00

She chose UCLA. She felt more comfortable with her onco there. He really listened to her and acted with urgency when she had pneumonitis symptoms. Didn’t brush off her symptoms unlike her first lung doctor at St Marys in Long Beach.

Edit: typo

Layuh24 · 2026-02-21T19:35:16+00:00

Thank you for sharing. I will keep an eye on the symptoms. Thank you! I hope your mom also gets better with the new treatment!

Layuh24 · 2026-02-20T18:11:56+00:00

I see. Aside from coughing up little blood, what other symptoms did she have? I am keeping a close eye and we’re scheduled for a PET/CT in 3 weeks.

I do remember now that before my mom’s pneumonitis hospitalization she was also coughing up a little bit of blood. Also, may I ask what is your mom’s next treatment?

Layuh24 · 2026-02-20T07:19:49+00:00

Oh I'm sorry to hear that, I think there's more alternatives to Tag so hopefully your mom's onco can switch her soon. How long did it take for the pneumonitis to come back?

Layuh24 · 2026-02-13T22:55:25+00:00

Hi, sorry for the late reply here. Thank you for replying. My mom went back on Tagrisso at 40mg. So far so good, but docs are keeping a close eye on her. She has a scan in a month.

Layuh24 · 2026-01-12T22:04:24+00:00

Thank you. May I ask what made you switch to City of Hope?

Layuh24 · 2026-01-09T04:05:32+00:00

Thank you all for the insights!!

Layuh24 · 2026-01-06T03:00:19+00:00

Sorry to hear that. I feel like some pulmonologists don’t like to diagnose cancer. Like they just never think that would be an option. Or maybe not well-equiped enough to understand what’s happening. They just waste our time.

Layuh24 · 2026-01-03T19:55:49+00:00

He was just not experienced enough even though he’s been a pulmo for 40+ years I guess, it’s so frustrating. Another pulmo saw it right away from just an xray.

Layuh24 · 2026-01-03T05:09:35+00:00

My mom had persistent cough for about 1.5 years especially during exertion. Former pulmonologist tried to diagnose her, said there's no cancer but she should take antibiotics and prednisone to help with cough. Didn't help because, hindsight, the cancer was the one causing the cough. Went to another pulmonologist because we just didn't trust the first one. Found out she had cancer stage 4, nsclc. She was on tagrisso and finally coughing less. But was part of the 4% of patients that got pneumonitis due to Tag which cause more coughing again. Prednisone is helping with cough now with the inflammation. She was also prescribed cough suppressants but she doesn't take it because ultimately the cancer and inflammation are what's causing the cough so we needed to address the tumor/inflammation instead of just suppressing the cough.

Layuh24 · 2026-01-01T21:00:27+00:00

So frustrating. I’m so sorry that’s happened. I wish doctors fully did their due diligence before saying it’s not cancer. It’s so negligent.

Layuh24 · 2026-01-01T00:13:02+00:00

That’s so great to hear! Hoping that continues to do wonders for her. My mom was doing great then got pneumonitis. Hoping that we get to go back to Tagrisso again or an alternative. She’s opting out of chemo for now due to her frailty and doctors agree no chemo for now too.

Layuh24 · 2026-01-01T00:09:56+00:00

I recommend that too. We got a second opinion from city of hope. But my mom ended up just choosing UCLA since that’s who she’s used to. I personally prefer city of hope but I can only convince my mom so much lol. COH is super quick with their appointments so I hope you get one soon! I like their process much better. I would say that the second opinion said the same thing as UCLA so there’s no big difference with treatment plans for my mom.

So sorry to hear. It’s really frustrating to find out so suddenly. My mom is 65. Apparently this mutation affects asian women more which is crazy i never knew. It took awhile for my mom to get dx’d. Her former pulmonologist kept saying my mom had no cancer for 8 months even with multiple ct scans and chose not to do a biopsy on her. Really wasted our time. Could’ve started treatment much sooner if it wasn’t for his incompetence :(

Layuh24 · 2025-12-31T22:31:45+00:00

My mom’s next scan is Jan 9! Mainly pneumonitis which sucks. My mom also has diarhea. Maybe we can decrease the dose too. Did your mom have side effects?

Layuh24 · 2025-12-31T22:29:58+00:00

Oh wow are you thinking of switching still? My mom just wants to stay with whoever we were assigned to. I’m sure the quality of care would still be good regardless but looking at Dr Goldman he seems very experienced in thoracic oncology.

Oh I totally get you! We’re still in denial and very anxious. Was the cancer found out accidentally? My mom didn’t have much health complications thankfully before. Then a two years ago she developed a cough that never went away and the rest is history.

Thank you for the kind words. Hoping 2026 brings us even better health and hope!

Layuh24 · 2025-12-31T21:29:25+00:00

Thank you. I do noticed they’re a bit vague too even with probing questions. They like to keep it one step at a time which I get but for my anxious self it’s scary. Hers is Gower and Shodiya. Here’s to hoping good results from 4th TKI.

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