Posts by Amanda Wells75

Yesterday they drained 2 liters of fluid from Mom's abdomen, and today it’s already back up to 4 liters. That feels like a massive amount to me. Does this kind of fluid buildup mean "global failure," or am I totally off base here? Given her diagnosis—ovarian cancer, stage III—is this a really bad sign? And how fast does this stuff just keep coming back, is it almost immediate or does it take some time?

My Mom has been in the hospital since yesterday. She could barely move. They drained about two liters of fluid from her abdomen, and she’s on blood transfusions and IV fluids now. Her stomach is still swollen, and they told her today there's still some fluid left somewhere, so they need to figure out where it is before they can puncture it again. She is feeling a little better now, though—just enough that she can make it to the bathroom on her own.
The doctor told her during rounds today that she should just eat whatever she's craving and doesn't need to watch her diet anymore.
Mom knows the end is near and that there isn't much more medical help left for her. She's saying her goodbyes to all of us, trying to comfort us from her hospital bed, telling us not to cry because this is just how it has to be. But I just can't come to terms with the fact that I'm going to lose her so soon. She tells us to pray to God to take her quickly because the pain she's enduring is getting stronger and stronger. It's the worst thing in the world, seeing those eyes filled with sadness, pain, suffering, tears... She is so weak, so thin, so helpless...
What should I expect? Is the end truly close?
What actually happens when that fluid starts building up in the abdomen?

Sam White62 said:My mom is heading out 😢 this Monday at 6 AM. The funeral is tomorrow. Hang in there, everyone. Sending a huge hug to anyone else out there who needs it right now...

Please accept my deepest condolences. I am so incredibly sorry about your mother and your loss. A mother is truly one of a kind—she's irreplaceable. But, she's in a better place now, far away from all the pain and suffering...
Even though she isn't here anymore, she’ll always be right there with you through every memory and every thought.

goldensailor0 said:..yeah, it's pretty much the same story with my sister. They couldn't give her chemo because of her liver, so they put her on some kind of hormone therapy instead (Zoladex and Brestan), which honestly looks like nothing more than candy to me. Feels more like a placebo than actual medicine, but hey, what do I know? I guess they know what they're doing.

Now that she's been on this hormone therapy for a month (if that’s even what you call it), her overall condition has actually gotten a lot worse. First, there's the unbearable back pain—it's so bad she's stuck in bed most of the day. We had her spine imaged, and they didn't find any metastases there, just "classic" spinal issues like curvature and calcification. We're trying to manage it with those medicated patches, which help sometimes, but not always. Usually, we have to add something else for the pain and to help her sleep.

So, regarding the spine, things are slightly better—though we're terrified it might be referred pain coming from somewhere else entirely—but now abdominal pains are starting up too. We'll get the new lab results for her liver markers tomorrow, and I'm honestly scared it won't look good..

I really don't know what to think about these oral cytostatics. Even now, reading your post makes me even more nervous about what Mom's scans are going to show at the end of March when they pull everything together.
I just have a bad feeling about all of this.

It’s been a while since I last posted, mostly because there hasn't been much news regarding my mom's condition. After her fifth round of chemo, her CA-125 marker jumped by 184, so now she's sitting at 1118. Because of that, they didn't even bother giving her the sixth chemo session; the doctor basically said there's no point anymore. She had a CT scan done, and the results show that the 33 mm secondary growth hasn't changed, but there are quite a few new spots on the liver. The pelvic area and other organs look okay for now.
Mom has been prescribed some pills now—specifically Endoxan 50 mg (one tablet twice a day) and Megostat 40 mg/ml.
The doctor mentioned she should take these for two months before coming back for a follow-up. She needs to get her markers checked right before the appointment, because apparently, these drugs can't really show any effect until those two months have passed, and only then can we expect the markers to drop. I'm just wondering, is it actually true that you can expect a drop in markers from these tablets?

Lp
Maya

placidwalker452, reading your post just hit me with this wave of overwhelming sadness. I really want to send so much strength to your whole family... you guys can get through this.

Amanda Miller69 said:Unfortunately, ovarian cancer is such a sneaky disease. It basically shows zero symptoms in those early stages.
My mom was diagnosed at stage IIIc too, and it only happened once she started losing her appetite and feeling sick from food.
She’s actually survived two years since the diagnosis, even though doctors told us she only had six months left.
If her body could have just held up after that last surgery, I truly believe she would have made it a few more years. You just have to keep hoping until the very end.

It’ll be one year since my mom got her diagnosis this coming month. So far, her markers are dropping, which is a good sign. I'm really hoping they can get the cancer into remission so she can finally get some time to recover her strength and, you know, just live a normal life again.
Hope and faith are the last things to go...

Diana was such an incredible person; you could really feel it through her posts. There was this one specific time she posted where I just felt this overwhelming wave of sadness. She wrote about how her lymph nodes were swollen all the way from her pelvis up to her neck, but even then, she insisted she wasn't backing down—that she still had the strength to fight. That was toward the end of 2008, and then on January 29, 2009, she passed away. That date just burned itself into my mind; I saw it once and I’ll never forget it.
The way you described her illness makes it clear she went through hell with the chemo and the surgeries. It couldn't have been easy, yet she never wavered, which honestly makes sense when you consider she fought this battle for thirteen years. I just can't wrap my head around the fact that even while dealing with all of this, she was worrying about her credit score or who would pay it off... she was busy being the rock for people who were mentally breaking down, all while she was so incredibly sick herself. It’s hard to believe she lived through all that without half an organ, struggling with lungs that were so weak...
What stage was the cancer at when they first found it?
I have to admit, I've never had someone from a forum—someone I never even met in person—stick in my memory like this. I find myself thinking about her often, almost as if we actually knew each other.
I think it’s because she just had so much positive energy and such a genuine love for life...
Why didn't she go for the blood transfusion? Was she unable to make it, or did she just not want to? It feels so unlike Diana to refuse, unless maybe she was just completely exhausted by everything.

goldensailor0, I know this is incredibly hard on you because it’s just as heavy for me. But honestly? I truly believe that the doctors and modern medicine will get my mom into remission, and she’ll be here with us for years to come. And I really hope that’s the case for your sister, too.
I know exactly what you're going through—that weird, messy mix of sadness and grief clashing with this sudden burst of happiness whenever a test result shows some kind of "improvement." You have to hold onto that faith. You have to do everything you can to be there for your sister, because she’s going to feel it if you start losing hope. As for me, I’m just taking it one day at a time. No big plans, nothing fancy. Just spending as much time as possible with my mom between managing a little kid, work... the usual stuff. We celebrate every single time a marker drops, and we try not to talk about the illness every single time we see each other. Everyone is different. Every body reacts to therapy and the disease in its own way, but you just have to stay positive. Every day is a new day, and every day brings new hope...

Angela Wright said:Honestly, my mom wasn't late. With a diagnosis like this, there’s no such thing as "early enough." She came in once the neurological symptoms started showing up, but even if she had caught it sooner, the end result would have been the exact same. That's just how this disease works. She dealt with migraines her whole life as part of her PMS, and it never once crossed anyone's mind to suspect a brain tumor. It's entirely possible there was nothing there at all until things really spiraled over the course of a year. Those are just my assumptions, I guess, but the fact remains—there was no saving her either way. That is just a biological reality with glioblastoma.
My mom lived for two and a half years after her diagnosis, which is pretty much the average for this kind of thing. Out of that time, she spent a full year unable to move anything from the neck down.

Cancer is just so cruel... When I read about someone having an end like that—paralyzed and incontinent for a whole year—it honestly gives me chills. It leaves me with this overwhelming sadness and that constant, nagging question of "why?" Of course, nobody is ever going to give me an answer to that...
With cancer, the worst part is the total uncertainty of how it all ends. Every type of cancer is terrible in its own unique way; they say ovarian cancer is especially sneaky.
I spent months reading through this entire forum whenever I could find a spare moment while looking after my little baby. During that first stretch, I noticed posts from Dine9, who fought ovarian cancer for so many years before finally losing the battle. She was always so optimistic, constantly offering support and hope to everyone else, even while fighting such a heavy diagnosis herself. I can't believe that even at the very end of her journey, she still made sure to find a way to let people on this forum know she was passing. I felt so incredibly heartbroken when I read that she had left us...
This forum provides a sense of comfort for me. It's a place where I can write down my feelings, my doubts, and ask questions. It helps me get through this incredibly difficult chapter of my life while my mom is sick, but at the same time, I feel so much grief and empathy for all of you when I read about the loved ones you've lost.

lonesailor36, I am so incredibly sorry about losing your husband. It’s just devastating how fast everything happened... he didn't even get a real chance to fight it. The disease just moved way too quickly and didn't give him any time at all.

Angela Wright, I am so incredibly sorry about your mom losing her fight. It’s heartbreaking. But like you said, it sounds like things were caught way too late in the process. I can't help but worry that my own mom might be in that same boat... hers was just diagnosed at Stage IIIC.
I honestly don't even know what else to say. I just have to hold onto hope that medical science has come far enough along that they can get her cancer into remission. I just want her to have some time to recover, to enjoy her grandkids, and just spend quality time with the people she loves most. Did your mom have to fight it for a long time?

Angela Wright, where did your mother have her primary cancer? I honestly wonder if my dad might be part of the reason Mom got sick—living with an alcoholic for all those years, dealing with constant stress and his outbursts. Then again, plenty of people just split up if they can't make it work together. My mom was never one for big life changes; she liked her routine and just rolled with how things were.
I read somewhere once that people with certain mental health struggles actually have lower cancer rates because they don't deal with the same kind of intense stress.
Mom used to go for her gynecological exams and Pap tests, but they didn't always do an ultrasound. When she saw her doctor this past spring because of some pain, he told her he’d run a Pap test first to see what shows up and then decide the next steps. Mom basically shot that back at him, saying her recent Pap test came back fine, but she wasn't sure about the rest because she had this pain in her lower abdomen. She insisted she needed to figure out what was going on because she felt terrible, and the pain was just getting worse and worse. The doctor—realizing he couldn't just send her home—rolled his eyes reluctantly and said, "Fine, we'll do an ultrasound," and that's how it started. Then she went in for a hospital exam, and they felt a tumor mass through the colon; they weren't even sure where it originated. The last time she had an ultrasound was maybe three years ago. Whether there was no tumor then or it was just too small to catch on an ultrasound... nobody really knows the answer to that. Mom thinks the tumor might have been there already, but they either missed it or thought it was just a fibroid and didn't react (since Mom has been in menopause for six years now).
To make things even more complicated, Mom had already undergone surgery when her Pap test came back clear, which is normal given her diagnosis. Her issue started with her ovaries, yet a Pap test shows changes in the cervix.
Mom was feeling a lot better yesterday—she seemed "revived." Today she's heading to Medicare by herself to get bloodwork done; she won't let anyone go with her, says she can handle it. So, I'm really hoping that by the time she needs her fifth round of chemo in three weeks, she'll have recovered. It would be such a tragedy if her body couldn't hold up right when her markers are finally dropping.
What do you think about beta-glucan? I asked at the pharmacy recently and they told me not to take it at all during chemotherapy. Their reasoning was that it "revives" cells, and since it revives healthy ones, it also revives the tumor cells that the chemo is supposed to "kill." So, I didn't get it for her.
You mentioned immune boosters, but what exactly do you mean by that? Mom eats healthy and makes her own juices to help her blood counts... Have you ever heard of Solgar vitamins and minerals? They're natural supplements, and the price is double what others cost; you can't find them in every pharmacy, you have to order them. These vitamins aren't synthetic and are much better than anything else on the market. Now, I'm wondering, should I maybe give those to her?
I'm just hoping and believing that the doctors will manage to get Mom's illness into remission...
She said that if she feels better in a year, she wants to go to the beach (she hasn't gone in years, because when she was with my dad, he never wanted to go anywhere, always making some kind of scene), and I told her that of course she’ll feel better and she’s coming to the coast with us (my husband, my kid, and me) to just enjoy ourselves and relax. I truly believe that's how it's going to be...

Angela Wright said:There’s a specific treatment protocol they follow, and they track everything—general health and markers. I think it varies case by case depending on the drug, but one thing is certain: if at any point a patient starts showing negative clinical signs, like severe side effects or bad blood work, they pull them off the therapy immediately. The worst part is when the patient is actually responding to the treatment, but their body just can't take the hits from the side effects anymore.

I forgot to ask you:
given how big the tumor was, it feels like your mom has been dealing with this for a while now. How did she even find out about it?

We brought Mom home today after her fourth round of chemo and she is doing terribly. This one hit her harder than all the others combined. She’s just lying there, completely helpless and exhausted. Honestly, I don't know how much more her body can take. She's lost so much weight; she was about 145 pounds before surgery, and now, just a few days ago, she was down to 119. She just keeps getting weaker, and those markers are still nowhere near normal.
She first found out because of these pains in her lower abdomen, so she went to see the doctor. At first, they diagnosed it as a benign uterine fibroid (but located on the outside of the uterus), so she spent two weeks in the internal medicine ward. They ran every test imaginable—endoscopies, cystoscopies, colonoscopies, kidney scans... and they couldn't find any sign of metastasis anywhere. Because of the size of the mass, they thought it had to be benign, otherwise, there would have been metastases visible. But then, after the surgery, when I went to talk to the doctor about her, he told me straight away that it was a malignant tumor that started in the left ovary. Initially, they weren't sure they could even do anything because it was so massive and fused with the pelvic area; it was pressing against her bladder in three different spots, pressing on her large intestine, and parts of her small intestine were already being swallowed up by the tumor because it had started spreading toward the upper abdomen once it ran out of room. They ended up removing her reproductive organs, her appendix (even though there weren't metastases there), and the peritoneum, which was riddled with tiny nodes—basically metastases.
Up until now, I really believed we could get the disease into remission and keep it under control, but the markers are dropping so slowly, and she just gets weaker and weaker. She turns 57 in December.
I feel like I'm hitting my breaking point too. It's killing me. I try to comfort her and convince her that everything will be okay, that she has to hang in there and can't give up, but I can see how hard it is for her and how she's losing her strength.
She is such a wonderful, decent person; she didn't deserve to fight something this vicious. My father has been a drunk for 25 years, so she was the one who took care of everything our whole lives. She made sure my sister and I got a great education even on her tiny salary; she wouldn't buy herself any new clothes for probably 15 years while we were in high school and college, just so we could have what we needed. She lived on dry toast or bread for years just so we could make it through the month. Now, she finally gets to see her grandkids—my little girl is 13 months old, and my sister's boy is 19 months—she was so excited to enjoy them, but unfortunately, she just can't. To be honest, I'm terrified to even think that one day, the grandkids might not even remember her...

Angela Wright, thanks so much for all the info.
I have one more thing I wanted to ask about. How long do they usually keep going with chemo before the markers hit a certain level—I think I remember hearing someone mention the number six—before they actually take a break and then start back up again?
We’ll just have to wait and see how things play out.
Mom went in for her fourth round yesterday, and I’m really hoping—actually, I’m certain—that those marker numbers will keep dropping.

Best,
Mary

Angela Wright said:It’s definitely possible. Remission is achievable, really—you just have to find that specific drug that actually hits the target. The issue here is that from what I can gather, Mom is already on her second line of therapy. Her markers are all over the place right now, which isn't good at all because it clearly shows the treatment isn't working. She needs a more thorough workup immediately—a bone scan is a must, plus an MRI or a PET-CT. Honestly, dear, I think it’s time you started looking into clinical trials she could join. Don't wait until things get complicated and we're forced to react; my internal alarm bells are already ringing.
Here are those ovarian cancer studies I mentioned—they're all open for you to look through: I was looking through some clinical trial data on ClinicalTrials.gov earlier—you know how deep those rabbit holes go—and I stumbled upon some results regarding lung cancer research. It’s heavy stuff, really. Just sitting there, scrolling through the data, thinking about all the people out there waiting for a breakthrough. The study details are pretty dense, but basically, they're looking at specific markers and how different treatments respond. It's that constant cycle of testing, testing, and more testing. You see these numbers and you realize how much work goes into just one single step forward in medicine. It makes you think about the sheer scale of the effort involved in fighting this kind of thing. Just a lot to process, honestly.
In the app, there’s this world map that shows you exactly where all the open clinics are located—you can even click on them to see the specifics. Right now, nothing we've found here in the States seems like a good fit for Mom, but there are some options available in the surrounding countries.

Just tell me exactly what the diagnosis is—it should be right there on the pathology report. Also, let me know if she has the BRCA mutation, everything she’s received for chemo so far, and how many doses.

Mom had her surgery on May 22, 2014. Here is how the surgical protocol went down: They found a solid tumor with an irregular surface located in the lower pelvic area. It was pretty messy—the loops of the small intestine and the omentum were basically stuck all over the top of it. The surgeons worked on gradually freeing the intestines and the omentum away from the mass. Once they cleared the top surface, they moved in to address the entrance to the pelvic cavity, which the tumor had completely taken over. It actually originated from the left adnexa. They managed to remove the entire tumor, though the pelvic walls were still covered in some brittle, necrotic tumor tissue. That had to be cleared out too, mostly from the rectovaginal septum and a bit above the ureter, near where the iliac vessels and the sacrum are located.
The diagnosis came back: malignant neoplasm of the ovary/adnexal area, FIGO stage IIIC. It’s after undergoing HAT (highly aggressive treatment), and they've already done a total omentectomy and an appendectomy.
So, I just got the pathology report back. It’s a mixed epithelioid tumor, stage T3bNxMx. Basically, the cancer has spread to the omentum and the appendix, and there was also a fibromyoma in the uterus (they took three samples at the time). Looking at the histology, about 65% of the tumor is made up of these strips and clusters of atypical epithelial cells—they have this really bright cytoplasm and dark, irregular nuclei, and you can see a lot of pathological mitoses under the microscope. These cells are forming tubules and papillary structures. Then, the other 35% is made up of serous-type atypical epithelial cells, also with those dark, irregular nuclei, forming more tubules, papillae, and some solid clusters. The tumor cells are showing up in several lymphovascular spaces and on the surface of the fallopian tube. They were also found on the surface of the tube they removed. The uterus itself shows a split portion with an empty cavity; the endometrium is 2 mm in the body. There’s also a well-defined, white, partially calcified nodule measuring 33 mm. They sampled the ecto and endocervix along with the cervical glands. That nodule in the myometrium is actually made of whorled smooth muscle fibers and calcifications. And yeah, that same tumor mentioned earlier was found on the serosa of the uterine body. The adnexa they removed looks grayish-yellow and soft, kind of cystic in the middle, with the ovary stretched out on the surface. Histologically, 80% of the tumor in that tissue is composed of those serous-type atypical epithelial cells with the dark nuclei and lots of mitoses, forming solid clusters, tubules, and papillary formations. The remaining 20% is made of tubular and papillary structures lined with epithelial cells that have bright cytoplasm and dark nuclei, again with plenty of mitoses. This tumor is sitting right on the surface of the ovary and the fallopian tube, and it's also visible in many lymphocapillary spaces. Finally, the omentum is filled with grayish nodules up to 20 mm in size. When they looked at them histologically, those nodules are metastases from the primary tumor described above.
MSCT Scan Results (Sept 17, 2014)
The non-contrast MSCT of the abdomen and pelvic area, followed by contrast administration (we had to use a much lower dose because her IV line blew), shows several hyperdense masses on the liver. They’re up to 33 mm in diameter. After the contrast, they show minimal, slightly uneven uptake, which most likely means they're secondary growths. There's also a thin layer of fluid—ascites—measuring about 11 mm along the edge of the liver. The liver itself is slightly enlarged and extends just past the bottom of the rib cage. No significantly swollen lymph nodes were found. There's also some fluid buildup, specifically ascites, in the pelvic cavity near the Douglas pouch. The aorta and arteries show signs of sclerosis. Everything else looked normal on this scan.
Ultrasound Findings.
Sept 01, 2014.
The ultrasound shows the liver is a normal size with regular contours, though the texture looks a bit coarse and grainy. In the left lobe, more toward the middle, there's a hypo-to-anechoic nodule about 33 mm wide; based on how it looks, it could be a cyst, but we can't rule out anything else. There's also a small 10 mm subcapsular cyst in the lower part of the right lobe. The rest of the upper abdomen and both kidneys look normal.
Nov 17, 2014.
The liver size is within normal limits, but the structure is diffusely coarse and granular. In the right lobe, there are several sharply defined areas that are mostly dark on the scan, which could be cysts according to ultrasound characteristics. There's also a 33 mm dark area in the left lobe that looks like a cyst too. But, given what the MSCT from Sept 17 showed—where those masses were flagged as suspicious for secondary growths—we have to consider that. The pancreas looks fine, normal shape and texture. The spleen looks normal on the ultrasound. There is a hypoechoic node measuring 17 mm near the aorta, which might be a swollen lymph node.
Her chemo schedule:
Three rounds completed (first cycle): Taxol + Gemzar at 280 mg and Carboplatin at 550 mg, along with the usual hydration and meds.
What she's on now: Day 1: Ifosfamide 7g, Adriamycin 110mg, Mesna 7g. Day 2: Mesna 2g, plus hydration and meds.

Here are the markers:
Before surgery in April 2014, CA 125 was 463 and CA 15-3 was 57.
CA 125 was 836.2 (July 03, 2014) after her first dose of Cycle I chemo.
CA 125 was 686.7 (Aug 12, 2014) after her second dose of Cycle I.
CA 125 was 767.4 (Sept 01, 2014) after her third dose of Cycle I.
CA 125 was 855.8 (Sept 25, 2014) after her first dose of Cycle II.
CA 125 was 1327 (Oct 13, 2014) after her second dose of Cycle II.
CA 125 was 1215 (Nov 04, 2014) after her third dose of Cycle II.
CA 125 was 1086 and CA 15-3 was 63.25 (Nov 24, 2014). Tomorrow (Nov 26, 2014), she gets her fourth dose of Cycle II.

First off, sorry for the long post.
Angela Wright, what can you make of all this? Please, don't sugarcoat it—I need to know what I'm facing. What are the actual prospects for my mother?
And what does it mean that her CA 15-3 is elevated too? Isn't that usually used for breast cancer, or am I wrong?
If you were me, what would you say those spots on the liver are? Cysts or metastases?
I hope you aren't annoyed by all these questions, I'm just desperate for answers.
Thanks in advance.
Best,
Mary

Angela Wright said:Hmm, those markers look pretty high...
They'll probably send her in for more detailed imaging, maybe an MSCT or something similar.

Angela Wright, thank you so much for getting back to me.
With markers being that high and dealing with the disease at this stage, is it even possible for things to go into remission and have the markers return to normal levels? Or is that just not happening? I just need to know if there's any hope for the disease to actually settle down for a while.

Angela Wright said:It doesn't have to be anything serious. Lymph nodes can swell up just from an infection, and honestly, some people just end up with them staying enlarged for a while. Was the node actually visible on her last ultrasound? And what did her blood work look like? Any issues with her markers?

The lymph node definitely wasn't showing up on the previous ultrasound. But she mentioned that this time, the doctor was incredibly thorough with the exam. Before this, she’d only gone in once and the doctor barely even looked at her—it felt like the whole appointment lasted maybe a minute. So, really, it all comes down to what that last ultrasound actually showed.

Angela Wright said:It might happen, or it might not. Lymph nodes can swell up because of infections, and honestly, they stay enlarged for some people. Did the previous ultrasound show the node too? And what are her marker levels looking like?

Her markers were around 400 before the surgery—that was back during her fourth month—and then they shot up to about 800 right before she started her first round of chemo. After that first session, they dropped down to roughly 280. But after the next two rounds, they actually started climbing again. So, they switched up her chemo regimen, and after the first round of the new stuff, they went back up, though after the second one, they dipped to around 105. Right now, they're sitting at 1215 (CA-125). I’m just giving you rough numbers here, though; the actual results are probably off by just a few units. I don't have my mom's lab reports right in front of me at the moment.

I really need some help here. It’s been a long time since I’ve posted on this forum, but just to catch everyone up briefly—my mom is going through chemotherapy right now. She was diagnosed with Stage IIIC ovarian cancer. We just got her ultrasound results back, and while most of it makes sense, there’s one specific sentence that has me stuck. It says: "Paraaortic hypoechoic nodule measuring 17 mm, which may correspond to an enlarged lymph node." Please don't judge if this sounds like a silly question, but does that sentence imply that metastases could be present outside of the lymph nodes, or am I misinterpreting it...?
Thanks in advance. I’ve been lurking on this forum for a long time and I always find so much comfort and useful advice here. My heart goes out to all of you who have lost your loved ones.

Best, from Akron
Amanda Wells75