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Exactly. The shock is totally normal, but you'll see that your dad will eventually start making sense of things too. Just try not to look too far down the road right now—focus on organizing everything one step at a time.
I remember it vividly myself; just yesterday I was looking back at my mother's first surgical report from February, which said the condition was inoperable. When the doctor told me the next day that we needed to prepare for palliative care, my legs literally went weak. And believe me, I am not an emotional person.
But after the surgery, six rounds of chemo, another surgery in July, four more rounds of chemo (one already done), and a HUGE amount of stressful, depressing, and even suicidal moments... she is almost healthy now. So, please, get through this initial shock, pull yourselves together, get organized, and just take it slow.
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Nancy Hernandez43 said:I really hope you all recover soon! 🙂
Has anyone dealt with a patient who vomits or gets diarrhea from everything they try to eat or drink? My mom says she’s hungry, but she’s been throwing up everything for 7 days straight. She had a little Coca-Cola today and it seemed to stay down, but obviously, that isn't a real solution.
It would be better if she drank some mint tea. Cola is honestly one of the worst things she could have while feeling this sick.
Amanda Wells75 said:Yesterday they drained 2 liters of fluid from Mom's abdomen, and today it's another 4 liters. That feels like a massive amount to me. Does this kind of fluid buildup mean "global failure," or am I wrong? Given her diagnosis—ovarian cancer, stage III—is this a really bad sign? How fast does that fluid build back up? Is it immediate or does it take some time?
It’ll build up even faster once the fluid starts accumulating.
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Two months ago, my Mom had about 10L of fluid drained—half from her abdomen and half near her lungs because she was struggling to breathe. During the "procedure," they found another 2L in her abdomen, and in the meantime, more fluid has built up around her lungs, making breathing difficult again. From what I understand, a healthy body usually just absorbs all that fluid through the tissues and clears it out naturally. But now, those tumor cells are blocking that process and even generating the fluid themselves, causing it to pile up over time.
A quick update from my end: Mom received her first dose of chemotherapy yesterday. She was also given some pills to boost her appetite since she’s lost an incredible amount of weight over the last two months and barely eats during the day. She hasn't shown any symptoms yet, but it's only been one day. We’re just taking it one day at a time now and watching her closely.
Rachel Wood27 said:The way this has all unfolded is just terrible. 😢
Unfortunately, the situation is extremely grave given the ascites and how extensive everything is. No one can tell you exactly how much time she has left.
It could be a day or two, or it could be a few months or even longer; it all depends on how she responds to treatment (regardless of what the statistics say).
What was ultimately determined—whether the primary tumor is from the colon or the ovaries—is critical because it dictates the therapy. A colon tumor might respond to treatment and buy you more time, whereas ovarian cancer can be incredibly sneaky, and often chemotherapy doesn't even work.
My advice is to definitely try chemotherapy. At least complete one cycle; if it becomes too difficult for her to endure, you can always stop. On the other hand, it might give you more precious time together.
I hope she can tolerate the chemo and that her labs aren't too bad (I mean liver enzymes, bilirubin, creatinine, and hemoglobin). If her blood work is stable enough for chemo and her overall condition holds up, she should be able to handle it. Give it a shot; you have nothing to lose.
Ask her what she wants, too. Sadly, at this stage, a cure is no longer an option.
Prepare thoroughly for the chemo. Get some good anti-nausea medication (I personally recommend Ondansetron, which helped my father immensely—he didn't vomit at all, and you can get a pack of $43 10 tablets), prepare her, and be ready for anything.
Angela Wright wrote it well; the situation is, unfortunately, very heavy.
The decision rests with you and your mother—whether you want to attempt chemotherapy or not.
Hang in there. I know how hard this is for you!
Yes, the lack of communication between different hospitals is honestly shocking. What hurts most is hearing from several sources a sentiment like: "The hospital that admitted her should be the one treating her." That kind of attitude toward a patient is simply unacceptable.
The latest update from the doctor today was that when they performed the scan yesterday, the ovaries appeared small (I assume he meant they were a normal size).
He didn't specify the exact origin or starting point of the disease, but I suspect it's coming from the bowel.
Yes, we will absolutely make a decision regarding chemotherapy after a detailed discussion with the doctor and reviewing the blood work. I trust the doctor will provide realistic advice at that moment.
If her blood counts allow for it, then of course I would at least want to try chemotherapy, but ultimately, the decision belongs to my mother.
My only priority is that she spends her final time in this world as peacefully and comfortably as possible, with as little pain and fewer complications.
After my father passed away recently (glioblastoma, diagnosed and gone within a month and a half), my mother was diagnosed with ovarian cancer at the eleven-month mark. It’s suspected to be an adenocarcinoma, likely the serous type, because her CA 125 marker hit about 4000. During the pelvic exam, doctors found massive ascites—she had about 4.5 liters of fluid in her abdomen, which they tapped and biopsied. At that point, she was scheduled for surgery on January 8th, 2015, at Peter Memorial Hospital. Within two weeks, things took a turn, and she ended up at Vinogradski Hospital in Washington, D.C., due to breathing issues. It turns out she was also accumulating fluid around her lungs; she was held there for two weeks to drain about 3.5 liters. Interestingly, that fluid biopsy didn't show any malignant cells. While she was staying at Vinogradski, a CT scan revealed a 5cm tumor located right where the small and large intestines meet.
At that stage, the doctors at Vinogradski said they would handle the surgery themselves rather than sending her back to Peter. The only debate was whether the protocol should be chemo-surgery-chemo or just surgery followed by chemo. But after all that back-and-forth and endless delays, the final word from them was that it wasn't their department since it was a gynecological issue, not a general one, and they told us to head back to Peter.
Once we got to Peter Memorial, they requested a follow-up colonoscopy. We had to pay for it privately. The doctor could only get about 35cm in before taking a biopsy sample, which eventually came back positive for malignant cells.
Based strictly on those colonoscopy results, they decided it wasn't their responsibility either because the issue was in the abdomen, not the ovaries, and tried to pass the buck back to Vinogradski.
We absolutely lost it. I won't go into all the details, but we fought, and she was kept at Peter with a new surgical agreement. Looking at the timeline, we have spent two months just watching these hospitals play "pass the patient" back and forth.
She finally had the surgery yesterday, assisted by surgeons from Mayo Clinic. I found out today that the "surgery" was essentially just opening her up and then closing her back up. They claimed the entire abdomen is involved, and any actual intervention would carry too high a risk of her not surviving the procedure.
Now, the only thing left is chemotherapy in a few weeks, and then we just see how far that takes us.
The surgeon from Mayo Clinic was completely stunned that everyone waited this long to start treatment. He couldn't help but wonder what might have happened if they had actually acted two months ago.
I am just as baffled. How did nobody step up despite all the test results? Is there anything I can even do at this stage?
I know you can't give specific medical advice here, but I'm hoping we can talk more openly in this forum. What can I realistically do now? What should we expect? Roughly how much time do we have left—are we talking months, or is it more than six months?
We've been advised to start looking for professional assisted living facilities that can provide specialized care, so we are starting that search immediately.
I won't ask about alternative treatments here; I feel like that would be counterproductive. If anyone has suggestions, please send me a private message.
Anyway, thank you to everyone for reading this and for providing a space where I can actually lay out the whole situation.
I'm intentionally leaving the doctors' names out of this to protect their reputations and to ensure no one judges their decisions prematurely.