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Svekar just finished his first round of chemo—four days in, and he hasn't experienced any side effects or issues at all. While I'm incredibly relieved, a part of me is actually a bit worried; I can't help but wonder if the dosage is too low to be effective, or if perhaps the beta glucan played a role in masking things (he actually skipped it this week while undergoing the treatment).
I’m on the fence about whether we should continue with the Noni juice... currently, we have him on a regimen of beet-carrot-apple juice, dandelion root tea, and green tea. We stopped giving him the raw propolis because it’s been being quite hard on his stomach.
Svekar had her first chemo session today, and thank God, she handled it quite well. So far, there haven't been any side effects to speak of. She still has three more days of treatment scheduled, so we'll have to see how things progress, but I'm hopeful she continues to hold up this well.
Amanda Wells75 said:Hi everyone, I just wanted to let you all know that my Mom passed away a little while ago, around 12:30 AM.
She had really hoped we could bring a priest by to see her one last time, so he was here with her today. She’s finally at peace now.
Please accept my deepest condolences 😢.
Your mother is in a much better, more beautiful place now, free from all her pain.
Amanda Wells75 said:Thank God your father-in-law isn't in pain; that honestly means everything. I imagine it feels even heavier when you're all living so far away from them. I truly hope the chemo buys him enough time to spend some more quality moments with you all.
My Mom was just vomiting all day yesterday—she’ll take a tiny sip of water, and then her body just rejects it immediately. She’s become incredibly thin, though she still has that distended abdomen caused by the tumors and the fluid buildup. They attempted a paracentesis yesterday to drain the fluid, but they only managed to get about two or three deciliters out, which is nothing compared to the liters they used to pull. The doctor explained to me that in the terminal phase, draining fluid becomes an uphill battle because the tumor mass creates these little pockets where the fluid gets trapped; you can never truly get it all out during a procedure like that.
Everyone, please keep fighting for those moments of hope. I know there are beautiful stories out there where people defy the odds and enjoy several more years of high-quality life despite their diagnosis. But unfortunately, with my Mom, that doesn't seem to be the case. It hasn't even been ten full months since the initial diagnosis, and we are already facing the terminal stage.
Unfortunately, it’s such a devious disease—it’s often caught too late and progresses at a terrifying speed.
They gave my Mom six months, yet she managed to hold on for two years.
If you can, try to frame it in a way where you see the passing as a mercy, so she doesn't have to suffer for too long.
The last few months of my Mom's life were pure agony and suffering; eventually, I found myself praying to God that she would just pass away so she wouldn't have to hurt anymore.
Sending you a virtual 🙂
Amanda Wells75 said:Thanks for the kind words.
Yesterday, I ran into her doctor while passing through the hospital—he actually approached me since he’s been managing her case—and he told me that, unfortunately, there isn't much more we can do besides managing her pain with medication and keeping her on an IV so she doesn't suffer from hunger or thirst. Mom's abdomen is quite large and firm; you can actually feel exactly where the tumors are just by hand, and it's truly horrific. The doctor mentioned there's some fluid buildup, but the tumors themselves are mostly filling up her abdominal cavity. They can't even perform a paracentesis to drain the fluid because there's just too much tumor mass in the way. She’s vomiting constantly, and the doctor suspects the tumors have likely obstructed her digestive organs. He said we're looking at a matter of days, maybe a week, before she leaves us. I pleaded with him to keep her in the hospital as long as possible because I honestly don't know how I'll cope if they discharge her to the house. I worry the fluid will essentially "suffocate" her since it keeps accumulating and they can't drain it. I'm heading back to see her this afternoon, and I'm dreading what state I'll find her in... . He also expressed how sorry he is that the chemo didn't work, specifically because the pathology report identified it as a mixed tumor. When I asked how common that is, he said they are incredibly rare. It makes me wonder about the odds—first, the chance of getting cancer, and then the even slimmer chance of getting the specific type that responds to nothing... Life is incredibly cruel sometimes; it really writes these heartbreaking stories.
I'm worried because she's sleeping so much; they're giving her Tramal for the pain, and she says it just puts her out. I just hope that all this misery, the ache, and the suffering... comes to an end soon, because watching someone else go through this level of agony is devastating.
I'm hoping the chemo helps your father-in-law, perhaps extending his life or at least giving him some quality time. What caused his weight loss? Is he in any pain?
I know exactly what you're feeling; it was the same for me... that feeling of knowing someone is suffering and dying while you stand there completely helpless.
When my mom passed, I felt the pain, but also a profound sense of relief that she wasn't suffering anymore. That was the first night I actually slept through the night.
Thankfully, my father-in-law isn't in any pain at all.
He has lost quite a bit of weight because during his surgery, they had to reduce his stomach by nearly half and create a replacement esophagus. Now he has to eat tiny amounts five times a day, and I suspect the disease itself is slowly consuming him from the inside.
Alongside the chemo, we're going to try alternative methods as well (like we have been), so whatever God wills happens. But I am scared—really scared—especially since my husband and I are 93 miles so far away from them and can't just rush over if things take a turn. I told my mother-in-law to call me immediately if anything feels off.
My mother-in-law starts chemotherapy this Monday. I have to admit, I'm feeling a bit anxious about how her body will handle the treatment.
She’s been coughing quite a bit lately, which is worrying me, and she’s lost a significant amount of weight too.
I've gone over all the necessary instructions with her to make sure she's prepared. If I can get over this lung infection I'm dealing with, we're planning to head out to visit them this weekend.
Let's hope for the best.
Amanda Wells75 said:My Mom is back in the hospital as of Saturday. She was home for three days starting Tuesday, but things took a turn for the worse—she's dealing with fluid buildup again. They haven't had to perform a paracentesis yet, so they say it isn't critical just yet. She’s being put back on IV fluids and blood transfusions. Her appetite is nonexistent; she can barely eat anything. Her stomach just won't process food, leading to constant burping and vomiting. I can't tell if it's the fluid accumulation making digestion difficult or if the tumors are the culprit. She’s in quite a bit of abdominal pain, though they have her on an IV and likely some pain management since she’s drifting off all day. Is this already considered the terminal phase, or is there more to the road? Mentally, she’s still very sharp. Oops, I really hope this period of suffering doesn't drag on too long. Zachary Howard2, how is your father-in-law doing?
goldensailor0, how is your sister?
Hang in there, dear. This does sound like the terminal phase. As Angela Wright mentioned to you, she will likely sleep more and more as this progresses; that is exactly what happened with my Mom. Three days before she passed, she had a moment of clarity where she "came back to herself," calling out to all of us to say her goodbyes. (She had been placed in a facility in Small Town, USA because she was incontinent and unable to move, so I couldn't care for her alone at home.) After those three days, she simply fell asleep.
For a long time afterward, I kept dreaming that she was sick and needed to pass away, until one night I drifted off and dreamed she had come to see me. She told me that the transition to the next world was swift and that Dad was waiting for her there (he passed three years before she did).
After that, I finally found some peace.
Amanda Wells75 said:So, how much longer did your mom hold on after the fluid started building up?
I just can't wrap my head around the fact that she won't be here much longer, and I find myself still hoping for some kind of miracle. I suppose there's truth to the old cliché that hope is the last thing to die. My mom is still so young—far too young to be leaving us this December (right around Christmas Eve). She just turned 57, and I'm only 31. There was so much I still wanted to learn from her (making traditional dumplings, sewing, crocheting...), and so many things left unsaid. She had such big plans—teaching her grandkids the language, taking them to folk dances, watching them grow, playing with them... just enjoying being a grandmother. 🙂
For my mom, the fluid started accumulating again about two weeks after her surgery, and then she passed away two weeks after that. But honestly, everyone is different.
She was 64 when she passed, and I was 30; we didn't get nearly enough time together.
My dad passed away when I was 27 (heart attack).
I know how incredibly hard this is, but like Ivanna mentioned, try to spend these final days right by her side. Love her, hold her, kiss her, and when the time finally comes, let her go.
Hang in there, dear. 🙂
Angela Wright said:After years of battling thick-walled colon cancer, we lost one of our own forum members, Vedran, yesterday...
He was truly an exceptional individual... I’ve been following his fight since day one. He shared his entire journey with us—every fear, every realization, and every ounce of pain he endured. He would come here looking for support, but in return, he gave us so much more... He fought so hard to live, yet in the end, all he wanted was to pass away in peace... and they say he went peacefully, happy and at rest. Heaven gained a great soul, and we lost a wonderful advocate. Vedran, thank you for touching my life. Rest in peace, friend; may your final journey be easy. 😢
R.I.P. 😢
I followed his story closely and often found myself wondering how he was doing.
I find myself wondering about some of the other usernames from the old thread too—Coca-Cola, Muscle, and several others who used to check in back when my Mom was sick and before she passed.
I’ve been revisiting the old thread lately just to remind myself of certain things that help manage the side effects of chemo.
Amanda Wells75 said:Yesterday they drained 2 liters of fluid from my Mom's abdomen, and today it’s another 4 liters. That feels like an overwhelming amount to me. Does this kind of fluid buildup imply "global failure," or am I misinterpreting things? Given her diagnosis—ovarian cancer, stage IIIIC—is this a particularly grim sign? And how quickly does that fluid typically return; does it happen almost immediately or take some time?
In my Mom's case (she had the exact same cancer and stage), the fluid kept coming back incredibly fast. We were told either the fluid would flood her lungs and she'd suffocate, or her liver would fail and she'd just drift off... and that’s essentially what happened; she just drifted away.
I know exactly how you feel. I went through the same thing. You realize the end is near and there’s no medical intervention left to help, yet at the same time, you feel utterly helpless because there isn't a single thing you can do to make her comfortable.
To be completely honest, I found myself praying to God to just take her so she wouldn't have to suffer anymore. When it finally happened, despite how much it hurt, I felt such a profound sense of relief knowing her pain was over.
We spent the day at the Mayo Clinic today. My father-in-law needs to get his blood work done before starting six cycles of chemo (cisplatin plus FU5). The doctor is truly wonderful—exceptionally kind, warm, and professional.
She explained that everything following the surgery was handled strictly according to protocol and that no errors were made. We are now entering the chronic phase, where chemo is administered to prevent any further spread; essentially, we’re managing a terminal situation by trying to buy more time. However, I actually found it somewhat comforting how she presented it to everyone, almost as if we were discussing management for something like chronic arthritis.
She also checked the lymph nodes in his neck, which, thank God, aren't palpable.
He’ll be receiving the treatment over four days in an outpatient setting, as she suggested that this is much better for a patient's mental state than a full five-day hospital stay.
Sam White62 said:Mom. 😢 Monday morning at 6:00 AM. The funeral is tomorrow. Hang in there, everyone—sending a huge hug to all those who might need one right now.
My deepest condolences. 😢
Ethan Roberts23 Asks:
Infected? That’s a stretch. Brain metastases typically spread through the bloodstream—hematogenous spread—rather than via the lymphatic system. So, having a swollen lymph node in your neck isn't some definitive omen that brain metastases are on the way.
Given how widespread the disease has become, finding metastases in the neck lymph nodes doesn't actually change the prognosis or our plan for treatment.
Thanks for the heads-up. Honestly, in the middle of all this chaos, that’s actually some decent news.
We have an appointment scheduled at Rebro on February 23rd for a consultation and to finalize the chemo plan.
I sent the PET CT results over to my sister-in-law, who happens to be a nurse, and she told me they look incredibly, incredibly bad.
On top of the metastases I already mentioned, there’s suspicion regarding something in a neck lymph node; she warned me to keep a close eye out, because if any blood vessels pop in his neck, it means the infection has spread and the metastases are heading toward the brain... as if we didn't have enough to deal with already.
The one thing I am thanking God for is that, despite how widespread this illness is, he isn't in any pain.
We started the day with the surgeon. My father-in-law wasn't available, so a different doctor took over the exam... nothing particularly noteworthy there, just a referral for oncology treatment.
The marker is at 16.89 (normal range is up to 3).
Then we arrive at the institute. I can’t tell you how much I despise this kind of negligence; the oncologist was out on break, and the nurse informs me that I shouldn't even be here because my referral is for an internal medicine oncologist... I explained she specifically requested we see her first... but apparently, she isn't available, so I should just go to internal medicine... We head to the counter, and then a second nurse starts squawking about how people just show up instead of making appointments... I explain the situation again, and she finally says, fine, leave the paperwork, the doctor is in a consultation, so wait an hour and a half or whenever he shows up... So, we sit there looking like fools for half an hour. In the meantime, I call Cepulic to see if there’s an earlier slot (we were scheduled for 3:30) so we don't waste time... His nurse calls me ten minutes later telling us to come in immediately... I grab the papers from the counter and say, let's just go... And that's when the drama starts—"Wait, let me get the head nurse, maybe we can ask the substitute oncologist to see him"... Fine, we hand over the referral, and once again, the first nurse rudely tells us we have to wait until our turn comes... Ten minutes later, I grab the papers and say goodbye.
Cepulic is night and day compared to that place; friendly, polite, and genuinely considerate... He mentioned that chemotherapy will be necessary, starting with three cycles to gauge the response (it was cisplatin plus something carboplatin-related, I didn't catch the full name)... He noted that Xeloda is useless for planocellular carcinoma since it won't work.
He performed the exam and did an extra ultrasound, but thank God he didn't tell him exactly what it was or the precise details yet.
Today we finally learned why he was in the hospital for so long... sepsis... It's a miracle he pulled through; that’s actually why they wouldn't administer any chemo after the surgery.
Based on his recommendation, we are transferring him to Repro to see Dr. Bishop. Does anyone here have experience with her?
In short, based on Cepulic's findings:
The recent PET/CT scan shows numerous new metastatic lesions (in the liver, mediastinal lymph nodes, abdominal wall, and paraaortic), making immediate chemotherapy essential.
I recommend determining the Cyfr 21 marker and the CEA marker before each round of chemo (by the way, nobody ever bothered to tell us we needed the latter).
Perform CBC checks on days 10 and 14 after chemotherapy; if white blood cell counts drop, Neupogen should be administered. Monitor the size of the tumor deposits in the abdominal wall and liver after the 2nd and 3rd chemo cycles.
Additionally, he told us that the Institute tends to pump people through six cycles unnecessarily (which just destroys them), whereas if there’s no response after 2 or 3 cycles, the therapy type needs to be changed.
Apologies for the delayed update; I had to take a moment to pull myself together... my head is absolutely spinning right now.
My mother-in-law called me a little while ago; I gave her the condensed version of the situation, and I don't think she took it particularly well.
goldensailor0 said:Sam White62, we are in the exact same boat. My sister is being discharged from the hospital tomorrow—permanently. She’s coming to stay with me and my elderly father. They say the liver metastases just won't stop spreading. Fortunately, she isn't in unbearable pain anymore, likely thanks to those patches they use, so because she feels physically okay for a moment, her mind has immediately jumped to remodeling the kitchen. She’s yellowed, weak, struggles to breathe, and lives in constant fear that the doctors might forget to administer some medication or follow a protocol. As for me? I'm a mess of fear, panic, and grief. I dread what happens tomorrow when she actually reads that discharge summary. It's overwhelming. I've already rented a hospital bed and coordinated with a home health nurse; apparently, the hospital will arrange palliative care... but regardless, this is going to be hell.
Hang in there. 🙂
Tomorrow we face the same uncertainty. We'll find out if there are any treatment options left at all, and more importantly, how to navigate the "what comes next." I'm also spiraling thinking about how my father-in-law and mother-in-law will take the news—will they crumble? And how on earth are the doctors even going to break this to my father-in-law... I am genuinely terrified of what tomorrow brings.
Angela Wright said:Well, if we actually go by what Ethan Roberts23 is claiming, then there won't even be a chance at getting Xeloda. 😢
Let's see if Cepulic can say anything without worrying about the repercussions from those folks who rely entirely on Medicare.
I’ve been doing a bit of digging—assuming Xeloda were even an option—and looking for ways to get it without it being a massive burden on Medicare or costing a fortune. I stumbled upon a price point of $833 for 120 tablets, though that was from a few years back. If that price is still even remotely accurate (I can't seem to find current listings anywhere), we might actually be able to afford to purchase it ourselves if all other therapeutic options fall through.
Back to the research lab for me...
Angela Wright said:Fiza, you might have mentioned your father-in-law's PhD before, but I don't want to dig through old threads—was his CA squamous cell or adenocarcinoma?
Yes, it's G1 squamous cell carcinoma.
We managed to get all the appointments scheduled for this Thursday: the surgeon, the oncologist, and Cepulic.
Angela Wright said:That’s exactly why I shared the link; it seems like this combination involving Xeloda is much easier to tolerate. Since they didn't initially consider him a candidate for chemo, I'm worried he won't qualify now either under the current Medicare protocols (especially since the oncologist has already made her stance clear). The only other option would be seeing Cepulic privately, provided he thinks there's actually a benefit to it.
Yes, based on what I read in the link you posted, that combo looks significantly better than cisplatin and FU5.
If the oncologist decides to greenlight it, I’ll be seeking a second opinion—not just from Cepulic, but potentially at Mayo Clinic or even checking in with Herceg.
I am a bit concerned about his kidney function. He had some issues following the surgery and was actually on dialysis for a week. Even though everything seems fine now, I wonder if that will impact his eligibility for chemo.
Kate Wells44 said:The cancer has spread to the lymph nodes, the liver, the spleen, and the abdominal wall, so chemotherapy is the only way forward. If I’ve understood correctly, your father-in-law had surgery for esophageal cancer, and in those cases, treatment usually centers on cytostatics like 5FU and cisplatin; that's pretty much the standard protocol. Provided he’s in decent general shape and his lab results look okay, there's really no reason not to give that therapy a shot.
Yes, it is esophageal cancer. He actually feels quite alright—he’s eating normally and isn't in any pain at the moment.
Could you tell me a bit more about that specific combination of drugs? Is it administered intravenously or via tablets, and should we be bracing ourselves for severe side effects?
Ivanna also brought up Xeloda.
We’re going to consult with Cepulic first to get a professional opinion before we decide on our next move.
We have an appointment scheduled with the surgeon this Thursday, so we’ll try to get everything else sorted then to avoid making multiple trips all the way from the Midwest.