Support for families dealing with cancer and other serious illnesses (Part II)

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.

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.

Listen, dear, just because something comes in a pill doesn't mean its cytotoxic impact is any less potent than an IV drip. In fact, many of the smartest, next-generation biological drugs are designed specifically in this encapsulated form. At the end of the day, shouldn't we be aiming to make treatment as simple as possible for patients while minimizing side effects? Medication choice also hinges heavily on a patient's overall condition. We should be grateful that someone who isn't physically up for invasive IV chemotherapy has an alternative oral cytotoxic option available. It won't provide a miracle cure, unfortunately, but it will slow the disease down.

Fiza, you might have mentioned your father-in-law's PhD earlier, but I won't dig through the old threads—was his cancer planocellular or adenocarcinoma?

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.

Amanda Miller69 said:Yeah, it’s a G1 squamous cell carcinoma.

We scheduled everything for Thursday: the surgeon, the oncologist, and Cepulic.

Well damn, if what Ethan Roberts23 is saying is true, he won't even be a candidate for Xeloda.😢
We'll just have to see what Cepulic actually says once you strip away the nonsense from those people who live paycheck to paycheck off Medicare.

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...

Sam White62, we’re in the same boat. My sister is being discharged from the hospital tomorrow for good; she’s coming to live with me and my old man. They say the liver metastases are just too far gone to stop. The unbearable pain has subsided—probably thanks to those patches—so since she isn't hurting right this second, her mind has already jumped to remodeling the kitchen. She looks yellow and frail, struggling to breathe, and lives in constant fear that the doctors might miss a dose or forget something. As for me, it's just pure panic, dread, and grief. I keep wondering what happens tomorrow when she actually reads that discharge papers. Man, it's heavy. I’ve rented a hospital bed and lined up a home health nurse, and apparently, the hospital will coordinate palliative care... but honestly, this is going to be hell.

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.

Okay, turns out it’s not the total disaster I was panicking about. They’re letting her come home, though she'll still be on some meds or an IV drip and they want her back for a follow-up if...

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.

What was I thinking when I said "it’s just like that"? Yeah, exactly. There wasn't a single word about what they told me yesterday in my discharge papers. They basically kicked her out with zero hope or comfort—just a polite way of saying, "get lost, you've got nothing left for us here." Luckily, I managed to find some actual human decency in the end...

Amanda Miller69 said:We saw the surgeon first today. My father-in-law wasn't there, so the second doctor took over the exam... nothing worth noting, really, just a referral for oncology treatment.
The marker is 16.89 (normal is under 3).
Then we get to the institute. I haven't seen such negligence in a long time; the oncologist is on break, and the nurse tells me I'm in the wrong place because my referral is for an internal medicine oncologist... she said I should go see her first... but she isn't available, so just head to internal medicine... we walk up to the desk, and another nurse starts nagging us, saying 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's free.... we sit there 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 assistant calls me 10 minutes later to say we can come in right now.... I buy the papers at the window and tell them we're heading in... then the drama starts again—"wait, let me get the head nurse, maybe the backup oncologist can see you"... okay, we hand over the referral, and the first nurse rudely tells us to just wait our turn again.... ten minutes later, I grab the papers and say goodbye.

Cepulic is night and day compared to that place; friendly, kind, and considerate..... he said chemotherapy will be necessary, starting with three cycles to see if there's a response (cisplatin plus something carboplatin, I didn't catch the full name)... he mentioned Xeloda is pointless for planocellular because it doesn't work.
He did the exam and ran an extra ultrasound, but thank God he didn't tell him exactly what it was or how bad it is.
Today we finally figured out why he was in the hospital for so long.... sepsis.... it's a miracle he made it out alive, which is why they wouldn't give him any chemo after surgery.
Based on his recommendation, we're switching over to Repro, with Dr. Bishop. Does anyone have experience with her?

Briefly, from Cepulic's findings:

The recent PET/CT shows several new metastatic lesions (in the liver, mediastinal lymph nodes, abdominal wall, and paraaortic), so chemotherapy is now essential.
I recommend checking the Cyfr 21 marker and the CEA marker before each session (by the way, nobody ever told us we needed to check the latter).
Monitor CBC on days 10 and 14 after chemo, and if white blood cell counts drop, Neupogen should be administered. Check the size of the tumor deposits in the abdominal wall and liver after the 2nd and 3rd cycles.

Also, he told us the Institute tends to push six cycles on people unnecessarily (it just wears them down), whereas if there's no response after 2-3 cycles, the therapy needs to be changed.

Apologies for the late post, I had to blow off some steam.... my head is spinning from everything right now.
My mother-in-law called a little while ago; I gave her the rundown of the situation, and I don't think she took it very well.

Dr. Bishop is an outstanding physician and an incredibly high-quality person. You can approach her with full confidence.

Fiza Bisofica is top-tier... she’s stepped up and saved the team more than once when things were getting messy over at the Institute... my take on the Institute is exactly the same as Cepulic's... so I wasn't wrong, even though they used to love telling me to shut up since I'm not a doctor and supposedly don't know my stuff... their protocols are nothing more than robots blindly following a recipe book.
Look, I think things are actually going to be as good as they can possibly be given the whole situation.

How much of a real risk is it for little kids to be hanging out right next to someone going through chemo?
From what I've seen in my own family, it’s just incredibly stressful—for the kids and the patient too—having to pull them away from someone they love
and used to hang out with all the time, only for this whole chemo thing to hit...
Any advice on how to explain this to the kids?

Hi everyone... I found an angel on earth, my sister Dragica. She’s by her side 24/7—bathing her, changing her, watching over everything... Mom is just constantly in pain at this point, regardless of the patches or whatever combination of painkillers we try... her kidneys are slowly failing. 😢 It’s incredibly hard to witness all of this and be right there next to her, though I suppose it’s a small mercy that she’s at home in her own house, at least.
I managed to get a hospital bed; Mom is completely immobile now....
Thinking of you all :*

Greetings to everyone once again.
I have a question for anyone who might be able to offer some insight: I recently reached out regarding my mother, who tested positive for occult blood in her stool. On top of that, she’s been dealing with constipation. Everything seemed manageable until today, when she was hit by sudden, intense abdominal pain. She went to the restroom, and although she says the stool itself looked normal, she was immediately overcome by this massive wave of weakness—she nearly fainted right there. I gave her some sugar water to help, and after lying down for about half an hour, she seems fine now. Is it possible that this episode is linked to the presence of occult blood and potential colon cancer? We are currently waiting for her appointment with the gastroenterologist on February 25th, and frankly, I feel like I’m going to lose my mind from the stress before then. Thank you in advance.

Sam White62, glad you figured things out.
My sister’s doing okay with the patches, but we ended up spending the night in the ER because this cough—this constant hacking—just wouldn't stop. We honestly thought we were losing her, but they managed to stabilize her. We made it back home, but the coughing hasn't let up. It's been an endless cycle of lying down, sitting up, coughing, stretching her arms out... just struggling. It feels like her lungs are completely congested. Every time I think we've hit rock bottom, we find some tiny way to clear her throat just enough for her to drift off for a second... only for her breathing to get heavy again while she sleeps. She’s tough, though; Dad and I are the ones hitting a wall here. A friend came over to help, but she practically kicked her out—says she can't relax or rest when there are guests in the house. She's even turning away the home health nurse.

Any advice on dealing with this cough?

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.

Amanda Miller69 said:We have an appointment at Rebro on February 23rd for a check-up and to finalize the chemo plan.
I sent the PET CT results to my sister-in-law, who's a nurse, and she said they look really, really bad.
On top of the metastases I already mentioned, there's suspicion regarding a lymph node in the neck. She warned me to watch out—if any blood vessels pop in his neck, it means it's spread and moving toward the brain... just what we needed.
The one thing I'm thanking God for is that despite how far this has spread, he isn't in any pain.

Spread through the blood? Brain metastases typically travel hematogenously (via the bloodstream), not lymphogenically, so a neck node isn't necessarily a precursor to brain involvement.
Given how widespread things already are, having a metastasis in the neck nodes doesn't actually change the prognosis or the treatment plan.