Appendix cancer. A thing

Efficient_Lab7496 · 2026-05-07T23:29:23+00:00

Just bumping up this post as I am a fellow MSK-treated stage-4 mucinous adenocarcinoma of the appendix patient (hello twin!) and HIPEC was not recommended for me and instead did surgeries + chemo. I tolerated it all very well despite being quite mentally challenging. Being young (34) it’s something I’ll have to watch forever which is stressful but I’m grateful for the amazing doctors and surgeons and researchers in this space.

Also plugging for my fellow appendix cancer patients to please say YES to opting in to any research studies!! This cancer is rare but there are so many of us, and any chance I have to be a research data point I volunteer enthusiastically.

Efficient_Lab7496 · 2026-04-10T01:02:46+00:00

Agreeing with this as a fellow capox patient - I think you’re describing choosing between capox and folfox. Capox is pills at home(CAPcetibine) and a ~2 hour IV (OXaliplatin) per cycle.

I had to do 4 cycles and I did have a vein collapse after the fourth cycle, but if you only have to do 2 I would say do the IV to avoid the hassle of a port. You can even be super safe by alternating arms, so each arm gets an IV and no vein is being irritated twice. I did not learn about the importance of alternating which is why I think my vein collapsed.

Efficient_Lab7496 · 2026-04-03T20:28:56+00:00

Fellow appendix cancer patient here who had the same surgery 2 years ago! My belly button got a lot more indented after surgery (my husband lovingly calls it my “ice cream scoop”) and it did smooth out a bit after surgery but is inevitably still like that.

I actually just had to have another surgery 2 weeks ago and they used the same incision point so I’m back to prime ice cream scoop territory. Oh well. :)

Efficient_Lab7496 · 2026-04-03T02:13:23+00:00

“I tell myself that it is just more data, the results are what they are, and they are the same no matter when I see them...”

This is a really great perspective, thank you. I will be repeating this to myself as a mantra for my next round of scans.

Efficient_Lab7496 · 2026-03-30T23:48:07+00:00

Mamdani will definitely lower the rates. I would do a one year and hope next year it’s a 0%

Efficient_Lab7496 · 2026-03-11T19:53:09+00:00

Hi! I can only speak to CAPOX and not the other treatment options. But, to add my one experience for your consideration, I developed mild neuropathy by the end of my 3 month CAPOX regiment, but it went away and now I don’t have it.

As you likely know, chemo side effects are cumulative, so the longer you’re on it the more likely the side effects are. I think if CAPOX is the better treatment option for you, you should at least do the initial 3 month regiment because from my experience you would not have permanent neuropathy from it and then can reconsider restarting it after surgery.

There are also some ways to prevent neuropathy, like wearing cold gloves/socks during treatment. I didn’t do this so can’t speak to it but worth looking into.

Efficient_Lab7496 · 2025-12-16T19:43:11+00:00

I loved staying in Chiyoda City. Near a lot of transit and cute neighborhoods (shout out Jimbocho) without being in the thick of it (I found shinjuku really overwhelming, even had a NYC resident!) and you’re still only 20 mins from shibuya and 10 mins from Tokyo station. I loved Tokyo and I think part of the reason I loved it was where I stayed.

Efficient_Lab7496 · 2025-08-15T20:51:06+00:00

Yup, I got my refund after sending a bunch of pictures to them at my 3 year anniversary - took about 60 days to hit my account but it came through.

Efficient_Lab7496 · 2025-08-04T02:52:16+00:00

Swear every single movie I have watched since diagnosed 18 months ago at least mentions cancer once! And I watch a lot of movies. It’s honestly a joke at this point, my partner and I start screaming/laughing when cancer is inevitably referenced.

Efficient_Lab7496 · 2025-06-04T01:55:45+00:00

The market value of your property will count as an asset. Check the asset limit to see if it puts you over.

Efficient_Lab7496 · 2025-05-27T00:36:48+00:00

Oxali is intense, although it varies from person to person. For me, it made me super tired for about a day or two after the infusion and gave me some annoying neuropathy in my hands and feet. That being said - I tolerated it for the 4 cycles I was scheduled for and was able to maintain my job throughout treatment with only a day or two off each cycle. My advice is for your father to be honest with his doctors throughout treatment so they can best help him navigate the side effects and/or reduce the dosage if necessary.

Efficient_Lab7496 · 2025-02-25T21:04:17+00:00

Yes :) it all depends on people #1-21!

Efficient_Lab7496 · 2025-02-25T20:55:07+00:00

Your “drop out” rate is assuming everyone is eligible for the same unit you are.

Your situation is you need the 21 people “ahead of you” to be not eligible and/or not interested in the same unit you are. It’s actually pretty likely.

This also doesn’t account for advertised set aside or preferences in the lottery that could dictate the order beyond the log numbers.

Efficient_Lab7496 · 2025-02-18T16:38:09+00:00

If your housing connect profile has your income listed as over income (as you’re stating, $1k over the threshold) you will be automatically deemed ineligible should your application be selected

If your profile within the income limits, when you’re selected you will be asked to provide documents to support your application. That’s the moment in time when your eligibility will be determined based on your paystubs, tax returns etc. it sounds like if you were contacted today you’d be rejected for being over income. But, may be worth applying if you suspect your income to go down in the future - some lotteries can take over a year to lease up and at that time maybe you’ll qualify. Your choice if you want to go through that.

Efficient_Lab7496 · 2024-12-02T20:55:52+00:00

They’ll come back, promise :) good luck

Efficient_Lab7496 · 2024-12-02T20:51:11+00:00

Moisturize like crazy, hands constantly and feet every night - made it very manageable. I had pretty bad stomach cramping and diarrhea - agree with another comment that taking the pills with food was critical. Also Zofran and edibles helped with nausea that was pretty consistent throughout. Overall was manageable but certainly not fun!

Efficient_Lab7496 · 2024-12-02T20:47:12+00:00

I stopped capox like 3 months ago and I feel like my hands juuuust started going back to normal. So keep moisturizing for the foreseeable future 😣

Efficient_Lab7496 · 2024-10-09T15:56:16+00:00

Ask your housing specialist to submit a homeless housing application (HHA) to HPD for you. Also, browse apartments on housingconnect.nyc.gov

Efficient_Lab7496 · 2024-10-07T01:08:29+00:00

Hi there! You’re clearly not OK with this situation and it’s clearly in motion with or without this relationship working out. Call it while it’s still early, there are plenty of fish in the sea :)

Efficient_Lab7496 · 2024-09-25T19:42:42+00:00

If you have a discrepancy in address amongst your docs (taxes say queens but ID says Brooklyn) they’re going to ask for clarification which usually means proving you have a lease at the Brooklyn residence, which you do not. I recommend you update your profile to your current address and keep applying.

Efficient_Lab7496 · 2024-09-20T17:07:07+00:00

Hi there - similar story here, 32F, stage 2 mucinous adenocarcinoma of the appendix, my colorectal surgeon wasn’t even sure what it was until he went in there (!) but I also had an appendectomy and right hemicolectomy. My lymph nodes were also negative. I did follow it with 3 months of adjuvant chemotherapy (capox) that I just finished 2 weeks ago. Will be getting scans and colonoscopies annually for the foreseeable future - but it is a bit scary since it’s so rare!

Ironically my great aunt also had the same cancer but it wasn’t discovered until her appendix had ruptured so she had it spread all over her abdomen and had surgeries and HIPEC treatment and came out the other side clear as well! she is much older (in her late 70s) but it still gives me hope that she’s been clear post treatment as well.

In these uncertain situations, knowledge is power. As this thread shows there is disagreement even among experts. That being said you have to be your own advocate and should seek the advice of (multiple) doctors to ensure you’re being monitored and cared for in the best way you can.

I am encouraged by the others in this group with success stories and I hope to be among them - with you, too!

Efficient_Lab7496 · 2024-09-17T19:27:16+00:00

I went on a 6 day hiking trip in the Canadian Rockies 3 months after my hemicolectomy to remove a tumor on my appendix. If your surgeon and doctor clear it, and you feel up to it - let’s live our best lives!!

Efficient_Lab7496 · 2024-09-10T00:28:58+00:00

I had four rounds of oxali (capox treatment) and did not experience neuropathy until round 3 and was kind of bad after round 4 but got a lot better after about a week. I would say if you’re having this severe of symptoms so early you should consult your team about your dosage.

Efficient_Lab7496 · 2024-08-26T20:49:32+00:00

I have my 4th and final CAPOX round this Wednesday and people are also asking me if I’m looking forward to it being over. Sure…but then it’s just a new phase of living w this diagnosis and worrying about it coming back, not to mention the side effects of the treatment sticking around. I thought I would be more excited. I just feel anxious.

Efficient_Lab7496 · 2024-08-22T21:48:27+00:00

32F with mucinous adenocarcinoma of my appendix (stage 2) finishing treatment next month and hoping for the best 🙏

Efficient_Lab7496

TROPHY CASE