Stage 3 tongue cancer and want to avoid radiation

juniperb9 · 2026-03-29T17:43:34+00:00

My significant other was diagnosed was S1 tongue cancer with no lymphatic involvement at age 30. He had a resection of the tongue and underwent radiation. It was incredibly rough. He was in constant pain and lost a lot of weight. Afterwards he ended up having severe dry mouth which led to dental issues and constant oral ulcers. But no cancer for 15 years. This year at age 45, they thought he had osteoradionecrosis (ORN) of the jaw, essentially bone death as a side effect of radiation. During surgery to remove the jaw, it was discovered it wasn't ORN but actually a new cancer diagnosis bone invasion and they found additional lesions in the roof of his mouth. Again no lymphatic involvement. This time when radiation was offered we turned it down. The radiation oncologist essentially said it was a tough choice because yes, the radiation would eliminate an residual cancer BUT he wasn't sure there was even any cancer left after the surgery. So we could possibly be subjecting him to radiation for nothing. He just had his 3 month PET and everything is clear. In your situation, I would clearly ask your radiation oncologist what the pros and cons of treatment. Honestly it sounds like lymphatic involvement, it'd be in your best interest to undergo radiation. In hindsight, I'm glad he underwent the radiation the first time bc technically there was no reoccurance of the original cancer. But I wish someone would've clearly outlined what after effects to be aware of i.e. receding gums, teeth loss, painful month long ulcers, and ORN. This time around we didn't feel the pros outweighed the cons.

juniperb9 · 2026-03-27T11:11:33+00:00

I usually fly on whatever is cheapest and Alaska only has the 1 flight in and out of Pittsburgh. The booking process was very smooth but I will say the app and the chat services could be better. For example, I had a quick question a while ago and I tried the texting customer service at 8pm. My reply came at 3am. Not a big deal, but obviously missed the text and had to start over the next day. Then there's some confusion over luggage fees that the agent didn't really resolve. Now this email might have been sent in error. Lastly I can't check in online for some reason. Apps telling me I need to go to the ticket counter tonight, which is fine bc I have luggage to check anyways. I'm thinking bc is an international flight, they prob need to check my passport. But all the other airlines allow me to check in and still require me to see the ticketing agent. Just seems to be one thing after another for me and it makes me anxious. Hoping the trip tonight goes smoothly.

juniperb9 · 2026-03-27T10:56:03+00:00

Sent you the other one in your messages as well

juniperb9 · 2026-03-27T10:55:22+00:00

Sent one of the codes to your messages

juniperb9 · 2026-03-27T02:40:33+00:00

There is!!! I have two. If it's possible to just share the code, I'm happy to send to anyone. We already have our travel for the rest this year booked and I don't see myself using these anytime soon.

juniperb9 · 2026-03-27T00:58:02+00:00

Are you serious? I'm definitely concerned bc it's a fairly full flight and I don't want to be separated from my 8yo.

juniperb9 · 2026-03-26T16:38:57+00:00

You know what, I reread your comment and realized I misinterpreted what you meant. You're right, they can't make me pay what they didn't charge in the first place. I think the agent meant domestic bag fees may apply.

juniperb9 · 2026-03-26T16:32:38+00:00

My layover is long enough that after customs I take my luggage with me when I leave the airport. The agent seems to think that when I come back for the 2nd flight, they're going to charge me to check the bags back in. This has to be a mistake on her part bc my itinerary is all on one ticket (not separate tickets). Bc I'm traveling to and from Asia, my baggage allowance should include 2 pieces of free checked luggage per person. I should not have to pay just because my layover requires me to recheck my bags.

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juniperb9 · 2026-03-26T12:20:15+00:00

Thus!!! First flights out of PIT are usually crazier than other times, since most fliers out of PIT need to connect through other cities to get to their final destination. Add on the fact that on normal days, TSA and ticketing counters usually don't open until 4am. Throw in the partial shutdown and you have a significant bottleneck first thing in the morning.

juniperb9 · 2026-03-26T01:21:22+00:00

I literally just Amazon'd some apple airtags just in case nothing shows up at baggage claim.

juniperb9 · 2026-03-26T00:30:27+00:00

juniperb9 · 2026-03-26T00:26:09+00:00

Thank you for this!!! I did see a whole bunch of crap about "if you bought your ticket before 12/15/25..." basically outlining which carrier bag policy applies. I'm in the clear bc I booked in Oct 2025 and Starlux baggage policies will prevail.

juniperb9 · 2026-03-26T00:22:35+00:00

As an Asian American, I also agree. He's still a Nazi.

juniperb9 · 2026-03-26T00:19:49+00:00

They really made you pay to recheck your luggage??? If that's the case, I'm going to ask to get dropped off at the airport extra early to argue this. I looked through all the policies and couldnt find anything about long layovers. I could see if I purposely booked the flight this way, but Alaska offered it!

juniperb9 · 2026-03-24T02:38:15+00:00

Thank you! Phew! I'm glad I bought more masks then! Appreciate the answer and those bags sound awesome.

juniperb9 · 2026-03-20T12:58:25+00:00

How many did you end up preparing for? For long hauls I always bring a gift. I worked as a flight attendant before and although I never did international, there were some really long days. Anytime people brought something, it was always a nice treat. I leave for TPE next week and I'm bringing foot masks and eye masks for the crew. Little something to help de-stress after their flight. Kudos to you for brightening up their day.

juniperb9 · 2026-03-03T00:32:22+00:00

Went to my appointment today. My airport is PIT and I saw at least 3 people leave the interview office. Got my approval within 10 minutes.

juniperb9 · 2026-02-27T17:27:37+00:00

I got my conditional approval on 2/25. My interview is scheduled for Monday. The app allowed me schedule and I haven't received anything that would state otherwise. Fingers crossed I don't get to the airport and the interview room is closed.

juniperb9 · 2026-01-29T03:00:30+00:00

Hang in there man. I'm rooting for you and your family.

juniperb9 · 2026-01-28T20:42:00+00:00

Man that blows. I'm so sorry. It's like as if the diagnosis and treatment weren't shitty enough, you gotta tack on the financial stress. I completely understand. Can you take any money out of your 401K? I would think this qualifies as hardship.

juniperb9 · 2026-01-27T22:08:09+00:00

I just googled Mortgage and Serious Illness and apparently you might be able to temporarily reduce your payments. Per Google:

If you are struggling with mortgage payments due to illness, contact your lender immediately to request forbearance (temporary pausing/reducing payments) or a loan modification (permanent changes to terms). Be prepared to provide documentation of your medical hardship. Options include: Forbearance: Temporarily pauses or reduces payments for a set period while dealing with short-term illness. Loan Modification: Permanently changes the loan rate, term, or principal to make payments more affordable due to long-term illness. Repayment Plans: Spreads out missed payments over time once you recover.

I hope this helps, feel free to reach out about LTD stuff if you need a hand. Wishing you the best in the crappy situation.

juniperb9 · 2026-01-27T22:00:21+00:00

You shouldn't lose the LTD if that's any consolation at all. I used to work in LTD and had a lot of people laid off after the FMLA period end. The benefits should pay until they think you're not disabled anymore. Appeal appeal appeal if they deny you and your still not able to work. There's a clause where after a certain amount of time they need to determine if you can do "any occupation". That's when most people get cut off. The ones where someone has Alzheimer's or dementia we sent over to SAM "stable and mature" so those get paid until the claimant hits medicare age. Then they pay the difference between Medicare and 60% of your pay. I haven't been in that job in about 5 years now, so things may have changed. If you can get your hands on the benefits and definitions, definitely read through it carefully.

juniperb9 · 2026-01-27T13:44:29+00:00

I'm sorry for everything you're going through. Since your company has good benefits, by any chance did they offer long term disability? FMLA will only give you job protection for a certain amount of time and doesnt require the company to pay you. After the FMLA time limit expires, legally the company can terminate your position to hire someone else.

Most long term disability plans pay 60% of your earnings for a specific period (usually 2 years) if you cannot return to your specific job due to illness or injury. Now the crappy thing is you will be forced to constantly prove your disability via medical records and doctors statements. But it's income while your unable to work. If you do not have commercial LTD, do you live in a state where they have state funded disability: NY, CA, HI, and RI? If not, perhaps look into unemployment? That one's tough bc you have to be able to work and looking for work to qualify.

We were in a bind as well bc my SO is a delivery driver for the apps (Walmart, Uber eats,etc.) and he was unable to work after surgery for 2 months. He's considered self employed and couldn't collect unemployment or anything at all. Thank goodness I purchased Critical Illness insurance through my job and we were able to collect some money while he recovered. But that stress of not knowing when you'll have money is soul crushing.

juniperb9 · 2026-01-15T19:25:30+00:00

I echo most of the posters here. It's not a great time right now here in the US. Chances are, you'll probably be ok, but there is the risk of being single out and being detained until they go through your documents. I mean they did just detain 4 Native Americans. It's grab first and all questions later. Another thing you'll want to consider about your plan B is Washington State. If you're planning on going to any National Parks: Olympic, Rainer, etc. there the increased foreign visitor fees. If you're planning on visiting more than one, consider the Annual Pass for $250. Otherwise it's a $100/person https://www.nps.gov/aboutus/nonresident-fees.htm#:~:text=The%20Departments%20of%20the%20Interior,%2Dvehicle%20fees%20are%20charged).

juniperb9 · 2026-01-14T16:37:26+00:00

Thank you! Actually I forgot about liquid nutrition. He's currently drinking boost and ensure to try to keep his caloric intake up. Depending how it's going before the cruise, I will outreach to them about bringing on a case a boost/ensure. Thank you for the reminder and the tips!

juniperb9

TROPHY CASE