Support resources for families dealing with cancer and other serious illnesses

cosmicorca said:Why not 😉:
Clark / Breslow classification: 1 b
Surgery performed at KB Dubrava by Dr. Vlajčić
Dermatologist Dr. Šitum, under the care of the nursing staff.

Thanks for getting back to me. I know exactly what’s going on here, and I was actually just thinking about how I didn't mention "how it stands" in my previous post. It really does seem like I might be overly optimistic. But honestly, I’ve done my homework—I've reached out through some personal connections and friendships to people who have gone through something similar, and I've talked to friends who are doctors too, so I know I need to be extremely careful. That's exactly why I'm sticking to regular check-ups every three months, plus mandatory sun protection and wearing UPF clothing and all that stuff.

There isn't much more to say! You've clearly done your research and you really don't have any reason to be overly worried, though staying cautious is definitely the right move—and it's obvious you aren't lacking in that department.

🙏

Angela Wright said:Because this is such an incredibly heavy chapter for everyone involved—not just the patients, but their families and those closest to them—and because our society often fails to provide the psychological support we actually need, I decided to start this forum. Having been caught in the middle of this storm myself, I wanted to create a space where those of us navigating these waters can offer one another genuine advice and steady support.

Please leave a post here; I promise I will always be around to reply, offer some guidance, or simply stand by those of you who are struggling, perhaps even more deeply than the person fighting the illness directly.

Personally, I’ve walked through hell and I’m still walking through it, and I truly believe no one should have to face this kind of darkness alone.

Sending big hugs to everyone.

I am in complete shock. My mom's initial tests, markers, and CT scans all point toward suspected colon cancer with metastasis to the liver. She’s heading into the hospital this Wednesday, and from what I’ve gathered online, it looks like it might be Stage 4. She was doing fine otherwise, just dealing with some minor digestive issues and hemorrhoids. I honestly don't know how to process any of this. Please, if you can, tell me what to do and how I should act around her. This is just devastating.

Sam Murphy33 said:I am in complete shock. My mom's initial tests, markers, and CT scans suggest colon cancer with liver metastases. She’s heading to the hospital this Wednesday, and from what I've read online, it looks like it would be almost Stage 4. Otherwise, she’s doing fine—totally vibrant—though she did have some minor digestive issues and hemorrhoids. I honestly don't know how to handle this. Please, tell me what to do and how I should act around her. This is horrific.

Just be there for her, just like you always have been. Your mom hasn't changed, and neither should your role in her life. Try to pull yourself together as quickly as possible, because keeping her daily routine feeling as normal as possible is absolutely vital right now. And please, stop Googling ahead of time—the internet is useless when it comes to pinning down a specific diagnosis for your mother. Once the doctors give you the actual facts, you'll be in a much better headspace to actually start fighting. To get a head start, she can begin boosting her immune system immediately to prepare for the treatment ahead.
Whatever the verdict is, you're going to fight it. Your mom isn't an alien; she's just a human being facing a disease that hits millions of people every single day. Don't waste your energy asking "Why?" or "Why her?" It’ll just drain you dry, and there are no answers to those questions.
No matter what happens, just know that this is something you can fight too!
Be her rock and her logistics coordinator. You need to stay focused!
Hang in there and keep us posted.

Sam Murphy33 said:I'm in complete shock. My mom's initial tests, markers, and CT scans suggest colon cancer with liver metastasis. She’s going into the hospital this Wednesday, and from what I've read online, it would be almost Stage 4. Usually, she's doing fine, just some minor digestive issues and hemorrhoids. I honestly have no idea how to handle this. Please, tell me what to do and how I should act around her. This is terrible.

Sam Murphy33, just stay brave. Be there for your mom; you have to stay strong for her. I know it's a shock, and there will definitely be mood swings... we've been at war with this thing for two and a half years now and we're still fighting. Just show her you're by her side. Dealing with this illness isn't easy, but wait until you get the official results first. In the meantime, just be there for her as much as possible—like Angela Wright said, she's still the same mom. Hang in there!

I stumbled upon a health feature in the news today advertising a product called ImmunoAHCC. It seems to be derived from certain Japanese medicinal mushrooms and is used as a form of immunotherapy. Has anyone here had any experience with it, or perhaps heard if it actually works?

Sam Murphy33 said:I’m in absolute shock. My mom’s initial tests, markers, and CT scan are all pointing toward suspected colon cancer with liver metastases. She’s heading into the hospital this Wednesday and from everything I’ve read online, it looks like it would be almost Stage 4. She was doing fine otherwise, just living her life, though she did have some minor digestive issues and hemorrhoids. I honestly have no idea how to handle this... Please, if you can, tell me what to do or how I should even act around her. This is just horrible.

Look, everyone here has walked through something similar, so we truly get what you're going through. At first, it’s just this massive, crushing shock, and that’s totally normal... but you really need to pull yourself together as soon as you can—not just for your mom, but for your own sake too. You can't let yourself spiral into despair; you have to face this head-on and fight, because fighting actually WORKS! Angela Wright already mentioned the most important thing...
My own mother went through surgery for the exact same thing about a year ago. I can tell you firsthand that I felt pretty lost back then too, but I made sure to be her rock, the strongest support system she could possibly have in that moment (and still does). The surgery went smoothly, recovery was fast... and the chemotherapy had relatively mild side effects, too. A year later, my mom is recovered and feeling fantastic. Sure, the lab results might not be perfect, but compared to how terrifying everything looked a year ago—it’s a win!
Stay strong! Think of this as just another brutal life test. It's an obstacle meant to make things harder, I guess... but you guys can definitely get past it!

feralridge3 said:I have questions, I just keep forgetting what I actually wanted to ask. 🙄

If they aren't administering it to me, does that mean I can take the capsules at home following their instructions?
Last year was a total grind, commuting to Chicago every single day for radiation right in the middle of summer.

Where did you get the Temodal?

I'm guessing you bought enough doses for all 6 cycles upfront (since you have some left). Does the oncologist insist on having all the doses right away, or can I pick them up cycle by cycle? That would be much easier. 🙄

I'll try to remember other questions; I just need a minute. 😁

Sorry for the late reply, I wasn't at my computer.

-In principle, yes. Whatever they give you is yours, but seriously—take something for nausea beforehand.
-When you're getting Temodal through Medicare, you usually don't take it home because the hospital gives you the daily dose on-site, and that's that. Try talking to your oncologist; since you aren't local to Chicago, maybe they'll let you take it home.
-At the pharmacy, with the oncologist's prescription,
Now you've confused me—if you're buying them, they're yours, so obviously you'd take them at home. Just check with your doctor on the timing and dosage.
-I don't think there's any point in buying all the doses ahead of time. Just order them from the pharmacy a few days before chemo starts and call it a day.
-Let me know if you have more questions. Believe me, I've exhausted every possible source of information, so I'm happy to help however I can.

Carol Newman21 said:Sorry for the late reply, I wasn't near my computer.

-In principle, yes, those are what you take. I’ll just reiterate my advice: please make sure to take something for nausea beforehand.
-When you're getting Temodal through Medicare, they don't usually give you enough to take home because they administer the daily dose right there at the hospital and that's it. Try talking to your oncologist; since you aren't based in Chicago, they might be able to authorize some for home use.
-Or you can get them at a pharmacy with an oncologist's prescription.
Now you've confused me—if you're buying them, then they are yours, so naturally, you can take them at home. Just consult with your oncologist regarding the timing and dosage.
-I don't think there's any need to stockpile doses in advance; just order them from the pharmacy a couple of days before chemo and you're set.
-I'm here if you have more questions. Believe me, I've exhausted every possible information source, and I'm more than happy to help with advice.

Something for nausea—noted.
My first round of chemo was clearly a breeze. I didn't have many issues, just a few headaches a couple of days after the dose, and I was out enjoying nature and walking around; it was lovely. I doubt it will be quite this easy this time around. 😢

If I'm taking it five days a week, it would be ideal for me to go into the hospital on Mondays and Fridays. On the other days, I could just take the dose at home. I'll try to work something out. The thought of a daily ambulance ride into Chicago during the summer heat is definitely not something I'm looking forward to. 🙄

I happened to ask about Temodal at a local pharmacy in my town, and the woman told me they'd need to order it in. Someone mentioned a pharmacy over by the main square in downtown; apparently, they stock those expensive medications.

You mentioned you had four boxes—the 20mg and 100mg ones. Does that mean two boxes of one and two of the other?
Thank you once again.

mellowbison13 said:I was scrolling through some health feature in the paper and saw an ad for this product called ImmunoAHCC. Apparently, it’s made from some medical-grade Japanese mushrooms and used for immunotherapy. Has anyone actually tried it or heard if it actually works?

My dad's been on IMMUNOMAX AHCC for about 7 months now. He takes heavy doses. Honestly, I think those mushrooms have made a massive difference for him and they're killer for the immune system. His chemo is pretty brutal, but the mushrooms kept his blood work looking solid. They're a bit pricey, but whatever...
You can find plenty of info on them on various forums, plus they have their own website, so just go poke around there.

Later!

feralridge3 said:I made a note to grab something for nausea.
My first round of chemo was clearly a walk in the park. I didn't deal with much—just some headaches for a few days after the dose. I could still get out, go for walks, enjoy nature... it was a breeze. Now? It probably won't be that easy. 😢

If I'm doing five days a week, it would actually work better for me to hit the hospital on Mondays and Fridays. I can just take the meds at home on the other days. I'll try to work out a plan. Honestly, driving into Chicago every single day in an ambulance during a sweltering summer sounds like a special kind of hell. 🙄

I casually asked about Temodal at my local pharmacy here in town, and the lady told me they’d have to order it in. Someone mentioned a pharmacy near Times Square once, saying they stock those high-end, expensive drugs.

You guys mentioned having four boxes—twenty 20mg and some 100mg ones? So, two boxes of one and two of the other?
Thanks again.

My mom was only on Temodal and threw up twice, and even then, it was just water.
She didn't have any real issues.

Me too....

My mom couldn't go through with her 10th round of chemo this morning—the medical board decided her heart has enlarged because of the treatment (she’s always had heart issues to begin with). They concluded they have to stop the chemo entirely to give her heart a chance to recover and stabilize.

Dammit. 😢

Has anyone else dealt with this in their family? Where the chemo actually ended up weakening the heart even further?

Hi everyone, I’m new here and really wanted to reach out and share my journey with this incredibly widespread disease with all of you.

A little over two and a half years ago, I was diagnosed with breast cancer in my right breast. They moved quickly and performed a mastectomy right away. The pathology showed it was malignant and hormone-driven, so naturally, chemotherapy was the next step. I started with four rounds of AC, which honestly made me feel absolutely terrible. After that, I switched to Taxol; interestingly, that didn't make me feel sick in the usual way, but it triggered such bad allergic reactions that I could only finish three out of the four scheduled doses. My hair would fall out every fifteen days following each treatment.
Since I live in San Diego, I had to travel down to Miami for radiation therapy. That whole process lasted about a month and a half.
Once radiation was wrapped up, I started hormone therapy, which I’ll be on for another year and a half. This involves taking a pill (Femara) every single day and getting an injection (Zoladex) every 28 days. Because of the treatment, I haven't had a period in almost two years.
I would love to hear from anyone who has already been through this or is currently navigating the same path!

Angela Wright said:My mom was on Temodal and only threw up twice, and even then it was just water.
She didn't have any real issues.

I’m over here mentally bracing myself for absolute misery, and then you come along and completely disappoint me with how easy it was for her. 😁
Did she feel weak or anything?
Honestly, if I could just catch a scent of the mountains during chemo—nothing crazy, just a little stroll for an hour or two at my own pace—that would do more for me than seeing five different psychiatrists.
That would be way more helpful than any therapy session.

Mom is heading into the hospital tomorrow... thank you all for the replies... I'm going to be there to support her... this is hitting me really hard.

feralridge3 said:I’m mentally bracing myself for the struggle, and then you just let me down like this. 😁
Did she get weaker, and how was she actually feeling?
Honestly, if I could just catch the scent of the mountains during chemo—nothing crazy, just a little stroll for an hour or two at my own pace—that would do more for me than seeing five different psychiatrists.

The only side effect we really dealt with was this heavy, crushing exhaustion. My mom started declining pretty rapidly toward the end of her treatment, but that wasn't because of the Temodal; it was because the disease itself was just moving faster than the meds could keep up. She had a completely different diagnosis than yours, too.
Keep a close eye on your overall health and focus on boosting your immune system. Walks are fine, just don't push yourself too hard and always make sure you have someone with you. And stay out of the sun!

Angela Wright said:Well, the only side effect was some fatigue and exhaustion. However, my mom started declining rapidly toward the end of her chemo, but that wasn't because of the Temodal—it was because the disease itself was progressing. She actually had a different diagnosis than what you're dealing with.
Watch your overall physical condition and boost your immunity. Walks are fine, just don't overdo it and always make sure you have company. Stay out of the sun!

If all I'm going to deal with is fatigue and exhaustion, then sign me up right now. 😉
I honestly already saw myself stuck in bed; I mean, once Temodal becomes as expensive as a penthouse in Manhattan, it'll definitely knock me sideways. 🤷
Ever since they poked around in my brain, I've come to some pretty heavy conclusions. 😁

Summer is coming and it’s going to be scorching, so I'm not planning on pushing myself too hard with any big outings, but it would really help if I could get out into nature once in a while—even if it's just sitting under a tree reading a book. 😁
I know I have to be careful with the sun.
I actually bought a hat made from special UV-protective material.

As for immunity, I was taking beta-glucan for about nine months. My oncologist told me to stop because I'd been on it for so long and needed to take at least a three-month break.
Now I've picked up some of that beet juice.
What else do you recommend?

Anonymous said:I would really love to hear from anyone who has been through this before, or those currently navigating it themselves!

marica88, please check your inbox. I sent you a private message over there. If you aren't sure how to access it, just let me know and I will walk you through it.

feralridge3 said:I made a note about something for nausea.
My first round of chemo was clearly light. I didn't have many issues—just some headaches for a few days after the dose. I could still get out into nature, go for walks, just relax. It probably won't be that easy this time. 😢

If I'm taking it five days a week, it would work for me to head to the hospital on Mondays and Fridays. I can take the doses for the other days at home. I'll try to work it out. Driving to Chicago every single day in an ambulance during the summer heat isn't exactly something I'm looking forward to. 🙄

I asked around at my local pharmacy here in town about Temodal, and the woman told me they'd need to order it. Someone mentioned a pharmacy near Times Square; apparently, they stock those expensive meds.

You mentioned having four boxes—the 20mg and 100mg ones. Does that mean two boxes of one and two of the other?
Thanks again.

Like I said, don't thank me. Just pray to God for help.
I don't get why you're pushing to be in the hospital if you already have the Temodal.
The day before, just get your CBC and everything else checked. If the labs look good, you can start therapy. And once you finish, check the blood again...
That’s the advice your oncologist should be giving you.
Regarding buying the Temodal, I already told you: you're just creating unnecessary stress and misery for yourself. You know when your next cycle starts—just go to the pharmacy two or three days early and order it. It can sit there. There's no point in driving all the way into the city for nothing....
You're just complicating things and making life harder than it needs to be.
Forgive me if I'm being blunt, but I'm just trying to make things easier for you.

When my father was on Temodal, he felt perfectly fine. A light walk in the morning while it's still cool, then something relaxing in the evening once the sun goes down. No forcing anything.

He was on the strongest dose and handled it well, thank God. Just watch out for the sun and your blood pressure.
Like I said, I'm here if you need anything.

Carol Newman21 said:I don't understand why you're pushing for the hospital if you already have Temodal at home.
Just get your blood work done—CBC and everything else—and if the results look good, you can start therapy. Then, once the treatment cycle is over, run the labs again...
That's exactly what an oncologist should be advising you.
As for buying the Temodal, I already mentioned this: you're just creating unnecessary stress and making things harder for yourself. You know when your next cycle starts, so just head to the pharmacy two or three days early and pick it up. It’s fine to keep it at home; there's no need to keep driving all the way into the city for no reason...
You're just complicating an already complicated situation and making life harder than it needs to be.
Forgive me if I'm being a bit blunt, but I truly just want to make things easier for you and help.

My father felt perfectly fine while he was on Temodal. He'd go for a light walk in the morning when it was still fresh, and then another relaxing one in the evening after the sun went down—nothing strenuous, just easygoing.

He was on the highest dose and handled it all quite well, thank God. Just be careful with the sun and watch out for blood pressure spikes.
Like I said, I'm here if you need anything.

I'm not trying to complicate things; I just honestly don't know how the process works. 🤷
It's hard for me to imagine they'll actually let me manage my own blood work and dosages for seven months straight. 🤷

Actually, I'll see what the doctor says tomorrow, and we'll see what "wisdom" he picked up from his colleagues at the symposium.

Hey everyone...
Checking in with some better news. Mom saw her oncologist in Chicago yesterday and they've prescribed Gemzar; she starts in about ten days. She had a follow-up CT scan and ultrasound today, and thank God, everything looks clear. Now we're just waiting on the tumor markers and blood work, praying those come back okay too. She’s actually starting to feel a bit better, and her appetite is improving—we're introducing one new food at a time to see how she handles it. The diarrhea has also calmed down significantly, down to maybe 2 or 3 times a day at most.
If anyone here has experience with Gemzar, could you let me know what the side effects are like? Does it cause hair loss and all that?
Thanks, everyone....
Stay strong...