Support resources for families dealing with cancer and other serious illnesses

Casey Palmer5 said:Unfortunately, the bastard was stronger.

I am never going to find another guy that good again; he was one of a kind.

I actually got chills and felt completely shocked reading this! 🙂
Please accept my deepest condolences... I truly cannot believe everything happened so fast 🙂. Hang in there! 😘

casualrider21 said:Yes, I am. It’s been a long time. I have plenty of alternative options. If you're interested, I can send them over via DM.
People just lash out at everything when things like this happen. You never know what might actually work—God willing, of course.

How are things on your end?
I’ve been totally checked out lately. Honestly, I haven't had a clue where I was leaving my head or my ass.

Love you guys.

Please, DM me!

Everything is happening at once, yet nothing is going right... they kept the old man in the hospital, and in the end, the poor guy had to undergo surgery just to perform a lung puncture (they ended up removing part of a lymph node, which someone here mentioned is actually better) because his throat was too scarred from the previous surgery to do it any other way.
Thank God he handled it well. He was discharged yesterday, but he lost a massive amount of weight because he couldn't eat properly there. We should have the test results back this Friday!

Just praying everything turns out okay. 🙂🙂🙂

Well, I guess it’s my turn to join this depressing conversation, unfortunately...
My dad just went through surgery for colon cancer, and he’s currently dealing with an ostomy bag while he gets ready to start chemo and radiation, but I am staring at this biopsy report and I am completely lost—how can it possibly still show a tumor mass measuring 6.5x3.5 cm after the operation?????
Does anyone here actually know anything about the most effective chemotherapy protocols for this kind of malignancy, or maybe someone could help me make sense of this pathology report? It says there are metastases in 8 out of 18 lymph nodes, which sounds absolutely terrifying... He had the surgery done up in New York City, but now they have him heading down to Miami for the chemo treatments.

Richard Myers4 said:Hi everyone... unfortunately, I'm joining this thread too, and my heart just goes out to you... :-(
My dad just had surgery for colon cancer—he has an ostomy bag now—and he's currently recovering so he can start chemo and radiation. But I'm really confused by his biopsy report... it says there is still a tumor mass measuring 6.5x3.5 cm?????
I would be so incredibly grateful if anyone could weigh in on what the best type of chemotherapy is for this kind of thing, or maybe explain the biopsy results... especially since they found metastases in 8 out of the 18 lymph nodes... He had the surgery done in New York City, but he'll be heading down to Miami for his chemo treatments.

It breaks my heart whenever someone new has to join this conversation... 😢

Regarding those results—don't worry, it doesn't mean there's still a tumor inside him... that's actually the tissue from the tumor that was removed along with that section of the bowel 😉

And as for the chemo... well, the doctors will decide what the best course of action is...
My mom had a Dukes B diagnosis and she went through 5-FU/LV following the Mayo Clinic protocol, plus she did 30 sessions of radiation...
Her results are looking good now, though I should mention her diagnosis was slightly different—all of her lymph nodes were clear—so it doesn't necessarily mean he'll get the exact same treatment plan

Wishing you all the strength in the world during this fight!!!!

edit:
Stay strong, dear 😢

Maria Fox said:I honestly feel so much sympathy for anyone new who decides to join this thread... 😢

Regarding the test results, let’s get one thing straight—there isn't a tumor sitting inside there anymore, okay? It was surgically removed along with a section of the intestine. 😉

And when it comes to chemotherapy, they’re the ones who will decide what’s best... isn't that just how it works? They make the calls, don't they?
My mom was diagnosed with Dukes B, and she ended up following the Mayo protocol, undergoing FU/LV along with 30 sessions of radiation therapy...
Her results look good now, but honestly, I have to say—the initial diagnosis was something else entirely. My own mom had completely clear lymph nodes, so why on earth should we assume she’s going to follow the exact same treatment path? It just doesn't always work out that way, does it?

Good luck in the fight!!!!

edit:
Casey Palmer5, my darling! 😢

Thanks.
We’re still just sitting here waiting for that first appointment with the oncologist, so we'll have to see what they actually have to say once we're finally in the room, but in the meantime, I've been spending way too much time scrolling through the internet, looking up everything I can find about nutrition and diet—trying to figure out exactly what kind of food I should be feeding him to boost his immunity as much as possible so he can actually stand a chance against all the physical toll this is going to take.👍We can only hope for the best.🙂

Casey Palmer5, I also want to send my deepest condolences—I can only begin to imagine how surreal it all felt, everything unfolding with such incredibly jarring speed. :-(

Casey Palmer5, I’ve been following this thread for days—I was actually planning to reach out to you with nothing but positive vibes and good thoughts, and then this shock hits. Please accept my most sincere condolences...

ps what happened to the damn thing?

My deepest condolences, Casey Palmer5

Casey Palmer5 please take my deepest condolences! You were such a beacon of optimism, which this forum seriously needs right now, especially after we lost Dina 😢 ... I honestly couldn't have imagined everything would move this fast... But listen, we're still all right here for you if you ever need anything at all!

And I can't help but wonder what happened to that damn 😕
They haven't checked in since the end of last year. Seriously, someone reach out!

Richard Myers4, my mom actually went through surgery for RDC, Dukes C, about a year ago. The tumor was on a linear flexure, so they had to remove about 80cm of her colon. Five lymph nodes were positive. She recovered pretty well, though, and did six cycles following the Mayo Clinic protocol. They didn't do radiation because they don't usually recommend it for that specific tumor placement.
Her tests back in February were totally clear! There was something tiny on the liver that wouldn't even show up on a CT scan (apparently it doesn't show up on any other test either), but since her liver enzymes were fine, they didn't send her for more testing.
We should get the results from yesterday's MSCT in a few days... but I'm still feeling pretty anxious about it...

Which hospital was your dad operated in?
If I were you, I'd take those results and try to get a second opinion regarding chemotherapy at the Mayo Clinic over in Chicago. We actually had to travel with my mom for about a month—maybe a few extra days—after her surgery. Though, I still don't really get why we had to go, since nobody even examined her there and we showed up with all our paperwork ready (including fresh colonoscopy results and markers)...
I'm keeping everything crossed that your dad recovers quickly and strong so he can keep fighting!

feralridge3
I haven't given mine to anyone, so no worries—it's yours if you need it.
I'm assuming you mean Dr. Shante. If it's him, you're in good hands; he's one of the best. I actually grabbed a few minutes to chat with him just before he left for his trip. If he’s the one, just stick with him and trust that he'll pull out all the stops to help you. I know from experience. Once he's back, have a real talk with him about whether the dosage of my Temodal is right for you, since there are several different strengths. If it's yours, it's yours.
It would honestly make me happy to be able to give this to you and help out.
Definitely reach out, and hang in there. Everything can be worked out.

shadowmason6 said:Richard Myers4, my mom also had surgery for rectal cancer—Dukes C—about a year ago. The tumor was on a linear flexure, and they ended up removing about 80cm of her colon. Five lymph nodes were involved. She recovered well and went through six cycles following the Mayo protocol. She didn't undergo radiation because they don't typically recommend it for that specific tumor placement.
The February results were completely clear! There was this tiny thing on the liver that wouldn't show up on the CT scan (apparently it wouldn't show up on any other test either), and since her liver enzymes were fine, they didn't send her for further testing.
We should have the results from yesterday's MSCT in a few days... I’m still feeling anxious, though...

Which hospital was your dad operated in?
I would really suggest taking the test results to the Mayo Clinic to get a second opinion regarding chemotherapy. We actually had to travel with my mom for about a month (or maybe a few days longer) after her surgery. Though, honestly, I don't even understand why we bothered, since nobody there actually examined her; we just showed up with all the complete records, including fresh colonoscopy results and markers...
Keeping my fingers crossed that your dad recovers quickly and well so he can move forward in this fight!

He was operated on in Brooklyn, and they prescribed both chemo and radiation, even though it supposedly hasn't spread anywhere except to the lymph nodes, just like the report says.🤷
It's just frustrating because our primary doctor insisted both before and after the surgery that the intestinal wall hadn't been breached, only for another doctor to tell us on the very last day that he "knew" from the start that the wall *had* been breached, 😕which was quite a shock for my mom.
And as for the oncologist, they insisted that Dad come to St. personally when ordering everything, since he can't sit for more than a couple of minutes, so he requested an ambulance ride. But then, after all that, they told us only Mom could come to St. with the papers and results. So, he's heading in today, and we'll see what they decide to prescribe for his chemo??
Thanks for the well wishes.👍

Carol Newman21 said:feralridge3
I didn't give them to anyone else, so no worries—they're yours.
I assume you're talking about Dr. Shante. If he is, he's honestly one of the best out there (I actually chatted with him just a day before he left for his trip). If it's him, just stick with him and trust that he'll do everything in his power to help you; I know from experience. Once he's back, have a talk with him because he knows exactly which "my" Temodal dosage would be right for you, since they come in several strengths. If it's yours, then it's yours.
It would truly make me happy if I could offer this gift and help you out.
Please get in touch regardless, and hang in there—everything can be resolved.

Actually, it's not about that doctor.
From what I understand, there are capsules in 5, 20, 100, and 250mg increments.
Which packaging do you have?

As far as I've gathered, the first dose is milder, and then it gets increased.
When he returns, I'll need to ask him which "size" is appropriate for me. I'll let you know then.
I'll leave my email and phone number in a private message.

I have a few questions:
If I'm understanding this correctly, we're talking about capsules, so no injections?
Is it 5 days a week, every 4 weeks, for 6 cycles?
How did the person handle those specific doses?
Just so I can prepare myself. The first chemo I went through was clearly quite mild, and I managed to push through it pretty easily.

feralridge3
I have the 20 mg and 100 mg doses. When determining the dosage, they look at body weight, the specific type of tumor, how fast it's spreading...

The good thing is they're capsules, so no needles involved. The therapy runs five days a week. As for how many cycles you'll need, that depends on how well it works and how your body handles it. My advice? Take some Zofran (let me double-check that name and get back to you) about half an hour before the pill to deal with nausea. That’s what we did, and everything went smoothly enough.
My father has already gone through four of the heaviest doses, and the lighter ones before those I'm donating now. Thank God, he handled it all fine, but unfortunately, the tumor has become resistant to Temodal, so we're moving on to a different chemo.

I hope it helps you.

Casey Palmer5 please accept my deepest condolences, this is just devastating. Man, life really doesn't pull any punches...

casualrider21 I'm so sorry to hear about your dad. Honestly, I don't even know what advice to give you when we both know the whole thing boils down to two things—immunity and decent blood work. You're in my thoughts 👍

nimbletrucker72 There can be no waiting, not even a single day. Trust me, move heaven and earth to get him into a hospital immediately. I know exactly what I'm talking about because my djed Flo passed away from lung cancer within ten days just because there wasn't "room" at the hospital. Right now, my own father is fighting that same "devil," but we didn't wait a second. And brace yourself for what Susan Diaz91 already told you: connections, money, and finding a doctor who actually gives a damn.

Sending love to all of you and keeping you in my prayers. Don't ever give up! 🙂

I’m joining this thread for the very first time today. I wanted to share my own mother’s experience as an example; she underwent two surgeries, followed by rounds of chemotherapy and radiation, and now
everything has been looking steady for over a year. However, after catching up on some of the most recent posts here, I’m still struggling to wrap my head around such a sudden, devastating turn of events regarding Casey Palmer5.
Before I read her latest update, I was feeling quite optimistic about the outcome.
Casey Palmer5, I am so incredibly sorry.

Carol Newman21 said:feralridge3
I have both the 20mg and 100mg versions available. When determining the dose, they look at body weight, the specific type of tumor, how fast it's progressing, and all that.

Since these are capsules, there are no needles involved. The therapy runs five days a week, and as for the dosage per cycle, it really just depends on how effective it is and how well your body handles it. My advice? Take an anti-nausea med (I think it's Zofran—let me double-check and get back to you) about half an hour before the pill. We used that, and everything went pretty smoothly.
My father has taken four of the strongest doses so far, along with the milder ones I’m donating now, and thank God, he handled them all well. Unfortunately, though, the tumor has become resistant to Temodal, so we are moving on to a different chemo regimen now.

I truly hope this helps you.

I actually have several questions myself, though I constantly find myself forgetting what I wanted to ask. 🙄

If they aren't giving injections, does that mean I can take the capsules at home following their instructions?
Last year was such a struggle for me, having to commute to Chicago every single day for radiation right in the middle of the summer heat.

Where did you purchase the Temodal?

I assume you bought enough doses for all six cycles upfront (since you have some left over). Does the oncologist require you to bring all the doses in at once, or will I be able to pick them up cycle by cycle? That would be much easier. 🙄

I'll try to remember any other questions that pop up; I just need a little more time. 😁

Life can be such a total mess. Just when you think everything is finally falling into place, life decides to sucker punch you out of nowhere. But I’m staying focused on fulfilling all our shared plans, because I know that's what He wants me to do.

And honestly, Bog can go jump in a lake.

feralridge3 said:I have plenty of questions, I just constantly forget what I actually wanted to ask. 🙄

If they aren't monitoring me, does that mean I can just take my capsules at home following their instructions?
Last year was an absolute grind—I was commuting to Chicago every single day for radiation treatments, right in the dead center of the summer heat.

Where did you guys pick up the Temodal?

I’m guessing you went ahead and bought all six cycles worth of doses at once, seeing as that's what you have left. Does the oncologist insist on having all the doses delivered upfront, or will they let me pick them up one cycle at a time? Honestly, doing it per cycle would be a hell of a lot easier. 🙄

I'll probably come up with more questions down the road; I just need some time to sit with it. 😁

There’s really no point in buying all your doses upfront, and honestly, it’s not even a good idea. Your dosage isn't set in stone—it can shift based on your body weight or other specific health metrics. It's better to stay flexible.

Casey Palmer5 said:Life is absolute garbage; just when you think things are finally falling into place, someone comes along and hits you over the head with a sledgehammer. Still, I’m making it my mission to see all our shared plans through, because I know that's what He wants.

And as for God, He can go straight to hell.

I am so, so incredibly sorry...

Casey Palmer5 said:Life is absolute garbage. Just when you think you’ve finally got everything lined up, someone comes along and hits you over the head with a sledgehammer. But I’m still pushing myself to see our shared plans through, because deep down, I know that’s what He wants.

And honestly? God can go straight to hell.

I wanted to tell you that if things really had to end this way—it’s better that he didn't suffer for too long. I've spent days watching my love struggle, begging for some way to help him find peace and just let go. On one hand, I’m selfishly praying to God to keep him by my side just a little longer, because I can't fathom a world without him... but on the other hand, I'm praying for it all to end, because this isn't humane.

So yeah, I'm with you—He can go jump in a lake.

Angela Wright said:There’s no need to buy all your doses at once—in fact, it’s probably better not to. Your dosage might need to be adjusted based on your weight or other individual factors.

That is actually great news.
It’ll make managing the costs a lot easier on my end. 🙂