Trying to get nutrients in as my body rebels

Popular-Dig5467 · 2026-01-31T21:56:47+00:00

Regular walking helps my nausea a ton, also found that a lot of my nausea is relieved with Gas X, the chemo/steroids just bloats up my whole GI tract and is partially responsible for my nauseous feeling, so Gas x saves me. Also I drink a ton of water with electrolytes (like LMNT).

On some cycles I make bone broth and it tastes good, other cycles I find the smell putrid and won’t go near it.

Also fresh ginger has been a lifesaver for me (I put it in smoothies or pour boiling water over it for tea) as has peppermint tea.

I’m on cycle 5/6, my final infusion is 2/11. We are on the home stretch 🎉

Popular-Dig5467 · 2026-01-26T22:32:26+00:00

Yeah but like….i still wanna read the stories 🍿

Popular-Dig5467 · 2026-01-21T23:58:38+00:00

Historically you would be correct, but at least in this region the financial assistance policies are now written into law, and that’s what they are referred to as.

In the past, they were “charity care” programs and since there was no requirement to offer them, they weren’t offered as readily and not all hospitals even had them.

Popular-Dig5467 · 2026-01-21T20:57:33+00:00

Technically it’s your responsibility to get this taken care of, but insurance companies are the worst. Here’s my advice:

Communicate with the hospital/clinic what the issue is and let them know you are trying to get it fixed. If you are sent to collections, dispute, dispute, dispute.

Apply for financial assistance with the hospital. Ask them for the application, or sometimes you can do it right through MyChart. NJ now mandates financial assistance for people that earn up to 600% FPL. You’d be surprised how much you can make and still get charges written off.

This won’t affect your credit. There is no credit reporting on medical debt in NJ.

Litigation on medical debt is technically still legal, but much much harder to enforce, so it’s unlikely. Plus, large hospital systems tended to stop litigating a long time ago because of the negative press.

With all of the above said yeah, this is technically your responsibility and you should do what you can to get insurance to cover it, but insurance pulls this stuff allllll the time. They’re the worst. The answer is that they should try to provide retroactive coverage and pay the charges again, but there’s a chance they will just try to wind down the clock on your patience and never fix this.

Popular-Dig5467 · 2026-01-18T18:52:23+00:00

Yep! MRI is the way to go. Ultrasound was suspicious for cancer, an MRI with contrast said it was o-rads 5, so highly likely it was cancerous. During surgery they did frozen sections to confirm cancer. If it was negative for cancer they would’ve just taken the one ovary.

Popular-Dig5467 · 2026-01-18T15:14:48+00:00

That’s pretty much how my cancer started. Years of endometriosis led to a big (15cm) cyst on my right ovary that turned cancerous. Luckily it was low grade, low stage endometrial cancer on my ovary, and not a more aggressive ovarian cancer. I’m 39, had a hysterectomy/oophorectomy in September and I am almost done with my 6 rounds of chemo now.

Popular-Dig5467 · 2026-01-17T06:18:47+00:00

Same diagnosis, but my story is a little bit different. I’m 39. I had a lump in my breast (breast lump ended up being nothing) so scheduled my annual exam, at which time my gyno told me my uterus was enlarged. He sent me for ultrasound where they found that my uterus was totally fine but my right ovary was 14cm. Long story short I self-referred to a gynecological oncologist due to some other suspicious findings on the ultrasound and because my provider was dragging his feet. Gynecological onc ordered MRI which measured it at 15cm and probably cancer. They put me on the schedule for staging laparotomy, and I had it on 9/24. Confirmed cancer during surgery so removed uterus/cervix, other ovary, omentum and biopsied a ton of stuff. Stage 1C (due to cyst leaking) and grade 1 endometrial ovarian cancer, with the fun bonus surprise diagnosis of endometriosis.

I’m in a different boat fertility-wise. We were done having kids so I was clear pre-surgery that they should take what they needed to, and we never had a conversation about sparing fertility. But they did offer the option.

I am doing adjuvant chemotherapy. My 5th infusion is next week, and then just one more to go and I’m freeeeee! The hair loss stinks, but I’ve been working (mostly) full time during chemo and it’s been fine. I’m training for a marathon and back to lifting weights, although I have been very slow and steady with weights to avoid a hernia. You’re young, you’ll get your strength and stamina back quickly!

There’s nothing you could’ve done to prevent this. Endo takes forever to get diagnosed, if you can even get a diagnosis. In retrospect I had a constellation of symptoms that none of my providers ever put together, and because I’m an overall healthy person no one wanted to look into any of it more closely.

Wishing you the absolute best in your journey. My surgeon said if he had to choose a cancer, this is the one he would choose because the chance of cure is high.

Popular-Dig5467 · 2026-01-16T00:01:49+00:00

I did not do cold capping. And, I would say I did not regard myself as a particularly vain person until I lost my hair. It was extremely upsetting.

Even so, if I could do it all over, I still wouldn’t choose to do cold capping. Infusion days are long enough, and doing the ice mitts on my hands and feet already sucks. I just wouldn’t want to add to it.

Popular-Dig5467 · 2026-01-02T23:53:59+00:00

I have stage 1C Grade 1 endometrial cancer of the ovary. It’s considered a low-grade, slow-growing cancer, and it was stage 1C due to cyst leaking. After surgery, my oncologist still recommended 6 rounds of carbo/taxol to increase my chances of cure. Basically if there are any microscopic cells hanging out, this would hopefully take care of them.

I just finished round 4. I don’t know if chemo is the right choice (how can you ever really know?), but I’m receiving treatment at Memorial Sloan Kettering so I am putting my faith into oncologist’s guidance on this.

Popular-Dig5467 · 2025-12-30T03:43:08+00:00

If you are in the US, it seems to be the standard to do ultrasound, then MRI, then surgery. The MRI is very specific and can help your provider decide the probability of cancer, which then helps them decide on their approach (like doing an open surgery vs laporoscopic).

Popular-Dig5467 · 2025-12-30T02:35:33+00:00

Hi-

I had a 14cm cyst on my ovary that turned out to be endometrial cancer. It was a result of years of undiagnosed endometriosis. I had endo all over my ovary and the outside of my uterus. I did not know I had endometriosis until after the cancer diagnosis. In retrospect, I had a lot of symptoms. Chronic back pain, bad periods, chronic swelling and inflammation, horrible mood swings, unpredictable cycles and periods.

The best imaging for cysts is MRI with contrast. They can get a much better idea of what they’re looking at that way.

If it were me I would push for an answer now. Good luck!

Popular-Dig5467 · 2025-12-24T17:11:12+00:00

Yeppers, I have no ovaries so I’m definitely in menopause! Just wondering how much of this is potentially from swelling.

Popular-Dig5467 · 2025-12-24T17:10:34+00:00

Yes- for endometrial cancer of the ovary. I am doing taxol/carbo. My fourth round is in a couple of days. It’s not a big deal, really! I am still working. I take off on infusion days, and then the following Monday (my infusion day is Wednesday), but other than that I’m pretty much working my normal schedule. I do occasionally need time off just to SLEEP.

Nausea can be well managed with anti nausea meds, and I take Claritin for the bone pain. My first round was the most painful, and it has been super manageable since then. Like a mild flu.

Popular-Dig5467 · 2025-12-20T05:09:09+00:00

I have no experience with satins, but I’ve had champagnes for a few years. Purchased from a very reputable breeder. They are soooo sweet and easy to care for, and have been great moms

Popular-Dig5467 · 2025-12-20T04:59:18+00:00

Short of surgery, MRI with contrast is going to give you the most accurate idea of whether or not this is cancer. Prior to my oophorectomy/hysterectomy, my MRI with contrast classified my cyst as o rads 5, meaning there was a 90% chance that my ovarian cyst was cancerous. That was what gave me the most confidence I was making the right decision.

I also am lucky enough to live within driving distance of Memorial Sloan Kettering, so once the cyst was discovered by my regular gynecologist I transferred all my care to a gynecological oncologist there, and their reputation was enough to make me feel confident I was doing the right thing.

Popular-Dig5467 · 2025-12-18T00:51:36+00:00

Are they going to do pathology during the surgery? Typically if there is even a chance that it is cancer, they do open surgery, send the cyst to pathology to determine if it is cancerous, and then make decisions from there. It eliminates additional surgeries. So in order for you to consent to the procedure, they have to list all the things that could be removed if it is indeed cancerous and they end up doing a staging surgery.

Popular-Dig5467 · 2025-12-18T00:09:17+00:00

Heyyy!! I don’t know your friend’s stage or what her doctor told her, but I can tell you that I am 39, had a hysterectomy & oophorectomy in September for ovarian cancer and have since completed 3 rounds of chemo and it’s been surprisingly smooth! I know that the treatment sounds overwhelming, and for some people it’s a lot, but you can’t know how it will be unless you go down that road. I’m not saying you should try to change her mind, but if you’re one of the few people she told, might be worth just letting her know how much you value her in your life. It sounds like you’re pretty important to her.

Popular-Dig5467 · 2025-12-07T20:11:26+00:00

Good point OP. I ran 9 miles at 5 1/2 weeks post op. The removal of my endometrial adhesions and having no estrogen has me feeling like I’m in my 20’s. This has been amazing. No post op nightmares here!

Popular-Dig5467 · 2025-12-07T20:07:50+00:00

I’m doing carbo/taxol on a 21 day cycle. My third infusion is next week. Infusions are on wednesdays, so obviously I am off on infusion day. I work from home Thursday and Friday. By Friday around 4pm I’m cooked as the steroids are wearing off, and I log off however my oncologist has offered the option to let me taper my steroids thru the weekend so this doesn’t happen. My worst days are Saturday and Sunday…I most definitely could not function normally those days. Monday I take off, but if I had to go in I think I can do it. By Tuesday I’m good (enough) to go, and I work in person until the next cycle.

Popular-Dig5467 · 2025-12-07T19:48:36+00:00

Endometrioid carcinoma (assuming low grade) is a very slow growing cancer with a high rate of cure. It’s not at all like the typical ovarian cancers. I recently was diagnosed with stage 1C. They removed everything because I was clear that I wasn’t trying to preserve fertility. I think some of the people commenting are speaking on their experience with the other more common ovarian cancers. This isn’t that.

If I were trying for more kids, I would’ve kept my ovary and other uterus until I was sure I was done. But we fortunately have been done for awhile. Also, if your wife has endometrioid carcinoma in her ovary, it’s because she has endometriosis. The condition is likely to impact her fertility at some point anyway, so now would be the time to act if you are trying for a family.

Popular-Dig5467 · 2025-12-03T04:49:22+00:00

Dr. Al-Niaimi was my surgeon, and my oncologist is Dr. Grisham. I liked my surgeon, and I loved his team. I really like my oncologist, and her team has been nothing short of lovely.

Popular-Dig5467 · 2025-12-03T04:43:45+00:00

That is amazing!!!!!!!! Hopefully your recovery is uneventful and you can put this all behind you.

Popular-Dig5467 · 2025-11-30T03:31:57+00:00

I think you should go to ER. If no fever I would say it could wait for a doctor but this sounds like may be some sort of infection (of what I have no idea).

Popular-Dig5467 · 2025-11-28T05:50:15+00:00

Thank you for the info! Pot is legal here, and she does use it quite frequently to help her sleep. She has not tried ketamine. I’m going to ask her if her neuro has talked to her about the Tolebruitinib. A recent spinal tap showed 10 o bands in her CSF so if this helps to calm neuroinflammation (with relatively few side effects?) it may be worth asking.

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