Support resources for families dealing with cancer and other serious illnesses

We're dealing with colon cancer here, and since neither the first nor the second line of treatment did the trick, we've just wrapped up the fourth cycle of this current regimen, though if I'm being honest, it doesn't feel like it's doing much of anything either... 🙂

Robert Grant84 said:We're talking about colon cancer here. The first line of treatment didn't touch it, and neither did the second. They just wrapped up the fourth cycle of this current round, and honestly, from where I'm sitting, it doesn't look like it's doing much either. 🙂

What was used for the first line? Was it Avastin or Erbitux?

Two cycles of Maja folfiri...
Three or four cycles of FOLFIRI (irinotecan)...
Just finished one cycle of XELOX...
Four rounds of FOLFOX...

Robert Grant84 said:2 cycles of Maja folfiri
(irinotecan) 3 or 4 cycles
XELOX 1 cycle
FOLFOX 4 cycles

Look, you need to give me the full diagnosis. Treatment isn't one-size-fits-all; we don't treat every stage the same way.

Last July, she underwent surgery for colon cancer (Dukes C),
following that, Maja went through her protocol, involving two cycles followed by three surgeries...
then there was FOLFOX for three or four cycles, but unfortunately, the disease kept spreading...
she switched over to Xelod (one cycle), but she just can't handle it well enough...
right now, she's waiting on her fifth cycle of FOLFOX, but the pain has left her so weak that she can't even walk on her own...

Robert Grant84 said:Last July, she had surgery for colon cancer (Dukes C),
followed by the Maja protocol—two cycles followed by three surgeries.
Then three or four cycles of FOLFOX, but the disease kept spreading.
They switched her to Xelod (one cycle), but she can't handle it.
Right now, she’s waiting for her fifth cycle of FOLFOX. She’s been hit so hard by the pain that she can't even walk on her own.

In the US, this stage is typically treated with 5FU/leucovorin-based chemo. While there are two other protocols that could be used at this stage—either Xeloda tablets over eight cycles or the FOLFOX protocol over six cycles—they aren't standardly covered under basic Medicare for this specific indication, though some high-budget medical centers might still use them.
Biologic drugs like Avastin or Erbitux aren't indicated for Dukes C. Those are reserved for metastatic disease. www.zanovidan.com Dr. Radić
That's just how the cards are dealt. 😢
Maybe try posting an inquiry on that forum over there. Someone might actually have more sense than I do.

Hannah Taylor76 I honestly have no clue why you’ve gone totally MIA on my DMs... You were the one offering to help out in the first place—I reached out asking for some info and a little guidance, and then? Absolutely nothing from your end. Just radio silence.
Thanks a lot, but that's just not cool. 👎

Do you guys consider Alzheimer's a "second terminal illness" too? I really don't want to derail the conversation here, but that headline about "helping families..." caught my eye.

Best, 🙂

electricseal34 said:Would you also classify Alzheimer as a "second major illness"? I don't want to derail the conversation here, but that headline about "helping families..." really caught my eye.

Best regards, 🙂

Of course it is. Nobody's chiming in here because Alzheimer's has its own dedicated thread, so most people just take their stories over there.

A little while back, I shared that my dad was diagnosed with hepatocellular carcinoma—and at first, we weren't even considering conventional treatment... we tried every alternative under the sun, but unfortunately, nothing seems to be making a dent. Just two days ago, he was in the ER having fluid drained from his abdomen, and today, he’s already full of it again; apparently, they aren't allowed to drain it anymore. What exactly is ahead of us? The thought of going to sleep is terrifying. He looks absolutely devastating—so incredibly thin, yet his abdomen is just massive—and he can't even keep food or water down without vomiting. That awful, crushing sense of helplessness is just killing me; I can't sleep, and I feel physically sick myself.

Hannah James76 said:A while back, I posted about my dad’s hepatocellular carcinoma. We weren't even looking at conventional treatments... we tried every alternative out there, but unfortunately, nothing seems to be working. Two days ago, he was in the ER having fluid drained from him, and today he's already full of it again. Now they're saying they aren't allowed to drain it anymore... What's next for us? I'm terrified to even close my eyes. He looks absolutely horrific—he's incredibly thin but has this massive distended abdomen, and he can't even eat or drink without vomiting... That disgusting feeling of total helplessness is killing me; I can't sleep and I feel sick to my stomach.

What medications is he on? And what does his liver panel look like?

I have a tumor measuring 10*8 cm, though my markers are all within the normal range, and I'm actually feeling alright. Is there any possibility that this could be malignant?

vividsailor7 said:What medications are being taken? And how do the liver function tests look?

Regarding the medication list—it includes Furosemide, Carvelol, Aldactone, and Reglan. As for the liver panel, I'm actually not entirely sure what the results showed; I don't have the lab reports right in front of me at the moment...

I’m back after a short break. Things are holding steady on our end. It’s a given that his white blood cell count takes a massive hit after every round of treatment, so he actually had to be put on Neupogen this time around. In previous cycles, we’ve seen those numbers plummet from 9.8 all the way down to 1.4, though we always manage to get them back up to impressive levels before the next session starts. He’s eating quite well, even if my mother-in-law has started nitpicking his diet and making things unnecessarily complicated; honestly, there’s no point in arguing with her. We’re just hoping for the best. He’s been drinking plenty of beet, carrot, apple, and lemon juices, along with Noni and various other supplements—I won't list them all here. Right now, we are stuck waiting on the paperwork to clear so the oncologist can approve the diagnostic tests needed to evaluate how effective the therapy has been so far.

Carol Smith17 said:The tumor is 10x8 cm, markers are within normal range, and I feel fine. Is there any chance it could be malignant?

Where was this found, and how did they diagnose it? Which specific markers are we talking about? Seriously, thank goodness you didn't just drop a question like that without providing any actual context.

Hannah James76 said:The medications being taken are: Furosemide, Carvelol, Aldactone, and Reglan. I'm not entirely sure about the liver panel specifics—I don't have the lab results right in front of me at the moment...

Liver labs. Regarding the meds, I was specifically thinking about the Aldactone, but how many milligrams exactly?

Kate Brooks2 said:I'm back too, after a quick break. Things are holding steady on our end. It’s true that his white blood cell count takes a massive hit after every round of treatment—so much so that he actually had to be put on Neupogen this time. Last time, they plummeted from 9.8 all the way down to 1.4, though we always manage to get them back up to impressive levels before the next session. He’s eating well, even if my mother-in-law has started nagging us about his diet. Honestly, talking to her is like hitting a brick wall. I just hope everything stays on track. He’s drinking plenty of beet, carrot, apple, and lemon juice, along with Noni and a whole litany of other supplements I won't bother listing. Right now, we're just stuck waiting for the paperwork to clear so we can get approval for the tests the oncologist wants to run to see how effective the therapy has been so far.

The Neupogen should definitely help him out. Fingers crossed that everything goes smoothly.🙂>

vividsailor7 said:Those labs are intense. Regarding the medication—I was actually thinking about Aldactone, but I can't recall the dosage... how many mg?

Aldactone 100 mg.
The labs from October 7th show: AST 266, ALT 201, total bilirubin 52.1, Hb 128, Hct 0.35, urea 19.3, creatinine 261, direct bilirubin 20.1, CRP 10, and T 82. They’ve been vomiting slightly all day long and have barely eaten anything at all.

Hannah James76 said:Aldactone 100 mg.
The labs from October 7th show: AST 266, ALT 201, total bilirubin 52.1, Hb 128, Hct 0.35, urea 19.3, creatinine 261, direct bilirubin 20.1, and CRP 10.

They might need to bump up the dose, and probably increase the Furosemide too. Honestly, forget the liver issues for a second—the kidney function is actually the bigger worry here. This situation is looking pretty grim.

vividsailor7 said:They might increase the dosage, along with the Furosemide. Honestly, while the liver issues are concerning, the kidney function is actually a bit worse. Things are looking pretty grim.

Thank you—it’s just so obvious that he's struggling, and I truly feel at a loss as to how else we can help him... Aside from driving him to the ER every few days, what else is there? His labs have stayed largely the same over the last three months—just minor fluctuations—but now the fluid retention is starting up again.