Resources and support for families dealing with cancer and serious illness

Amanda Miller69 said:I went to see her yesterday, and thank God she’s almost back to herself, even if she still drifts off every now and then. She’ll recover, though. I’m going to try to get things sorted once she’s discharged from the hospital on medical leave, but we’ll have to see what the doctors say. The one I spoke to yesterday told me we’d discuss the next steps of her recovery when the time is right. Right now, the goal is just to get her back on her feet and make sure she doesn't just stay stuck in bed. Honestly, I'm still a little worried about how things will play out down the road.🙄

The main thing is that she’s lucid and aware.
Start by applying for that medical leave (assuming you can actually pull that off), and you'll have a better idea of things in a few days.
It’ll probably be enough to eventually find someone to sit with her for a few hours a day while you're at work.
I sent you a PM yesterday. If you're in New York City and you need a home health aide, let me know. I have a whole list of people. Of course, you'll have to pick someone who actually fits your needs.

You’ve got a point there. I guess I’m just wondering if anyone else on this forum has dealt with something similar, so maybe they could give me a heads-up on what to actually expect.

William Hall2 said:You've got a point there. I guess I'm just wondering if anyone else on this forum has gone through something similar so I can know what kind of storm to brace for.

Look, you have to be ready for anything, especially when you're dealing with a parent fighting cancer. To be completely blunt, given everything that’s been going on, his current condition doesn't look great—but at least he's in the hospital now, where they can run the actual tests and get him the help he needs.
People often walk into situations thinking they're identical to what happened to someone else, only to find out they're worlds apart once the dust settles. Don't burn yourself out worrying about things that haven't happened yet. If everything turns out fine, you'll have wasted a massive amount of energy stressing over nothing; if things take a turn for the worse, you'll have plenty of time to deal with that when it actually arrives.
Just remember: patience is everything.

Hang in there.🙂

Thanks so much.

My mom is starting up her chemotherapy again, specifically those CCNU tablets she takes once every six weeks. She’s completely immobile now. Back when she was still mobile, she took the same treatment alongside Reglan, and let me tell you, the nausea was brutal—we're talking intense, non-stop vomiting. To try and get ahead of the sickness, we find ourselves constantly cycling between Kytril and Zofran. I'm wondering, what has everyone else dealt with in these situations? Has anyone had similar experiences?

Elizabeth Diaz60 said:My mom is starting up her chemo again (CCNU tablets), which she takes once every six weeks. She’s bedridden now. Back when she was still mobile, she took the same thing along with Reglan, and the nausea was just brutal—she couldn't stop throwing up. To fight the vomiting, we're rotating between Kytril and Zofran. What has everyone else dealt with?

For my mom, Zofran was a total 👍 She would take it about 3 hours before the chemo session. It completely knocked out the nausea for us.

Hey everyone,
I can tell you firsthand that a doctor's grim prognosis doesn't always turn out to be the final word.
Today marks 19 months since my wife received her diagnosis, and thank God, things have been looking much better than anyone expected. In fact, she’s been full of life, courage, and an unwavering faith in God's help. I haven't seen anything concerning in her condition so far. It’s a strange reality—we’ve made it through those 19 months, life keeps moving forward, and yet the uncertainty just keeps growing. No matter how much I study this diagnosis, I find strength in the stories of survivors who have lived decades beyond their initial outlook. I truly believe she is following in those footsteps.
Now, it's finally my turn to deal with the hospital. They called me in for an embolization to treat an arteriovenous malformation in my brain. I head in tomorrow, and the procedure is scheduled for Monday. As much as my mind races with all sorts of intrusive thoughts, I keep focusing on my wife—on her bravery and her absolute conviction that she will overcome this fight.
Compared to what she’s going through, this should be a walk in the park. I really hope that's the case.
Best regards, and stay strong.

casualpanther1 said:Hey everyone,
I can tell you firsthand that those grim doctor predictions don't always come true.
My wife hits the 19-month mark since her diagnosis today, and thank God, she’s doing incredibly well. In fact, she’s the exact opposite of what they feared—she’s full of life, courage, faith, and an unwavering trust in God's help. I haven't seen a single thing about her condition that gives me pause. The tricky part is that after 19 months, life just keeps moving, which means the uncertainty starts to build up. No matter how much I read about this diagnosis, I always find strength in the stories of survivors who have lived decades beyond their prognosis. I truly believe she’s following in those footsteps.
On top of all that, I finally got my own call to head to the hospital for an embolization of an arteriovenous malformation in my brain. I’m heading in tomorrow, and the procedure is scheduled for Monday. Even though my mind is racing with all sorts of anxious thoughts, I just look at my wife—her bravery and her absolute faith in healing while fighting her own battle—and it grounds me.
Compared to what she's going through, this should be a walk in the park. I really hope that's the case.
Best wishes to you all; stay strong.

Hang in there. I've always looked at you two as the gold standard for willpower, grit, and what it means to support your family with pure love. I'm confident this surgery will go just as smoothly; there's no reason to fear.👍

Amanda Miller69 said:I visited her yesterday, and thank God, she was almost back to her "normal" self, though she still drifts off occasionally... She will recover, eventually. I intend to reach out once she’s discharged from the hospital on medical leave, but we’ll have to see what the doctors advise. The physician I spoke with yesterday mentioned that we would discuss the next steps of her recovery when the time is right—for now, the priority is just getting her back on her feet and ensuring she doesn't succumb to bed rest. I find myself occasionally wondering what the future holds...🙄

Angela Wright said it best... you shouldn't look too far ahead... and you certainly shouldn't let your fear show. I know firsthand how difficult this is, but try to cherish every single day you have in front of you. Recovery doesn't happen overnight, but with every passing day, things will improve...

casualpanther1 said:Hey everyone,
I just wanted to say that doctors' grim predictions don't always come true!
My wife hits her 19-month milestone since her diagnosis today, and thank God, she’s doing amazingly well. She's actually full of life, courage, and faith in God's help. Honestly, I don't see anything concerning at all. It's funny how after 19 months, life just keeps moving, even if the uncertainty grows... But whenever I read about people who have lived decades with this same diagnosis, it gives me so much hope. I truly believe she's on that same path.
On my end, I finally got called in for an embolization for a brain vascular malformation. I head to the hospital tomorrow and the procedure is Monday. Even when my mind starts racing, I just look at my wife—her strength and her absolute faith in getting better through this fight.
Compared to what she's been through, this should be a breeze! Fingers crossed it is too.
Sending love and stay strong!

I was doing the exact same thing last night! After praying before bed, I found myself counting the months since my last chemo session... and wow, I hit 50! I'll keep counting and celebrating every single morning. The prognosis was just as bad for me!
I really believe your wife is following those survivors' footsteps; 19 months is such a beautiful
milestone.
I'm crossing my fingers👍 that everything goes perfectly on Monday and you have a super speedy recovery!

Hi everyone, I didn't get a wink of sleep last night. I'm getting ready for my fifth chemo session and I am honestly terrified, but I feel like you all are the only ones who truly understand this hell. I really admire Dina; I was just reading one of her posts, and she is incredibly brave for everything she's going through...
I haven't been on the forum for a little while, mostly because of some bad news and some pretty harsh stories. Wishing you all nothing but the best.

Breast Cancer

It’s almost been a full year since my mom had her surgery. She’s been through the whole gauntlet—chemotherapy, radiation, and now she’s on hormone therapy. She’s been doing every single checkup under the sun, and so far, everything has looked great. But then, she tells me today that she felt some kind of lump on the side where she had the surgery. I honestly don't know what to think; I'm desperately hoping it’s just some sort of swelling or scar tissue from all those heavy medications, but what if it isn't? What if we have to go back to square one? It’s enough to make you lose your mind! And to top it all off, she hasn't even been able to get an ultrasound for that area yet because her doctor is being absolutely impossible about squeezing her into a slot. Doctors always say the same things, like "just be patient," "wait a little longer," "we need to run more tests first," blah, blah, blah... but this might be the most critical test of them all. I’m terrified because her cancer was quite large, and the statistics suggest there's a higher risk of recurrence... I know, I know, people say you shouldn't look at the statistics, but...

The biopsy results finally came back...
lung adenocarcinoma. 😢

Hey everyone,

Does anyone happen to know what the wait times are looking like at Mount Sinai?

Thanks!

wanderingharbor61 said:Hey everyone,

does anyone happen to know what the wait times are looking like for an appointment at Mount Sinai?

Thanks!

Look, you can find a ton of useful info right here regarding PET-CT scans.

Angela Wright🙂🙏🙏 🙏,

Thank you so much—I am honestly losing my mind with worry here. My mom just got her diagnosis two days ago: metastatic melanoma, and well... you get the idea.

Back on March 13th, she had surgery to remove a cyst and an enlarged lymph node near her breast, which was sent off for biopsy. That's where the result I mentioned above comes from. Before that—actually, looking back now, I can't quite wrap my head around it—

about two years ago, she had this ulcer halfway between her shoulder and breast that got inflamed. Her doctor drained it then... but recently it flared up again. She took some antibiotics and they tried to handle it outpatient. Before that, there was a puncture; the results were negative, but after doing ultrasounds and a mammogram, they found that cyst which they recommended removing.

After the surgery, we spent two weeks living in this blissful state of ignorance, and then—total shock. 😲...

It’s not just that it’s cancer (though nobody in my immediate family has even said the word out loud yet—the extended family doesn't know anything because Mom refuses to tell them)—it’s melanoma, and it’s already metastasized.

I'm trying to help however I can, but I'm terrified. I'm constantly scouring the internet for info. As for the men in the family, they aren't much help beyond driving us around; they're basically paralyzed by fear and have no clue 🤷 how to even act...

For anyone who has been through a PET/CT scan: what paperwork do I need to bring? Is it mandatory to have an oncologist's opinion on a specific form, and what's the average wait time?

Best to everyone. To those fighting: hang in there and don't lose hope. And to the loved ones caring for them: I wish you all the patience and strength in the world to get through this and see a recovery.

wanderingharbor61 said:Angela Wright🙂🙏🙏🙏,

thank you so much. I am losing my mind with worry; my mom just got diagnosed two days ago: metastatic melanoma, and then there's all this other stuff they wrote down...

On March 13th, she had surgery to remove a cyst and an enlarged lymph node near her breast, which was sent off for a biopsy. That’s the result I mentioned above. Before that (now it all makes sense... I honestly can't tell...),

about two years ago, she had some kind of sore halfway between her shoulder and breast that got inflamed... the doctor drained it... it recently flared up again, so she took a dose of antibiotics and they tried to handle it outpatient. Before that, we did a puncture, the results were negative, then we did ultrasounds and a mammogram, which led to finding that cyst they recommended removing.

After the surgery, we lived in blissful ignorance for two weeks, and then—total shock😲...

Not only is it cancer (though no one in my immediate family has actually said the word yet—my extended family doesn't know anything because Mom doesn't want them to), but it’s melanoma, and it has metastasized...

I'm trying to help however I possibly can. I'm terrified, constantly searching for info online. As for the men in the family, they aren't much help beyond driving us around; they're so paralyzed by fear they have no idea🤷 how to even act...

For those who have been through a PET/CT scan, what paperwork should I bring? Is it mandatory to have an oncologist's opinion on a specific form, and what is the average wait time?

Best wishes to everyone. To those fighting: hang in there and don't lose hope. And to their loved ones, who are carrying so much worry: I wish you patience and strength, just like the patients, to get through these trials and find healing!

Post a question on the association's forum and browse their pages; you'll find a lot of vital information regarding the disease itself and various treatment options. There's a much wider variety of people there who can give you answers.
Regarding the men and their ability to step up—all credit to the wonderful exceptions on this forum—but women generally handle these kinds of crises much better. A testament to that is the fact that most people posting on this thread or the site are female. Women are usually the ones carrying the weight of the whole situation on their shoulders.
It is unbelievable how insidious melanoma can be. Still, I truly hope things can be brought under control somehow. Stay positive and fight with everything you've got.

Nancy Thomas18 said:Hey everyone, I couldn't sleep at all last night. I’m getting ready for my fifth round of chemo and I am honestly terrified... I feel like you guys are the only ones who truly understand what this hell feels like. I really admire Danny, I was just reading one of her posts and you seriously need so much courage for what she's going through.
I haven't been on the forum for a while because of some bad news and some pretty nasty stories out there. Wishing you all the best.

Hey, first things first—you've gotta try to get some rest tonight, even if it means using a sleeping pill once in a while. Don't wear yourself out right before chemo hits...
And yeah, I totally agree, Danny is such an inspiration with how positive she stays through everything.
I know that chemo is scary as hell, but you've already made it through four rounds, so you can definitely handle this one too!
And then hopefully just one more to go after this. You've got this!👍

As for the bad news and the negativity, unfortunately, that stuff is always going to be around—that's just how these places work. But there are also tons of good vibes and beautiful stories here, and most importantly, plenty of people who actually get it and want to help. You're never alone in this, but I know you already knew that...
I'm rooting for you to get through this treatment with as little pain as possible👍

cosmicridge5 said:Lately, scrolling through all these threads about cancer and chemo, I’ve found myself feeling this intense urge to just reach out and send a message to Zazie.
And then I read that she had passed away.
I spent hours obsessively scrolling through her old posts, practically tearing through them, while simultaneously making a list of every book she’d ever mentioned reading.
I honestly don't know if I’ll ever find the motivation to pick up a book again, but if the urge actually hits me, I guess I'll start with the ones she recommended.
Sending some love your way, Zazie...

I already posted today's results.
So, I ended up drifting over to the lung cancer thread... and honestly, I just sat there reading through everything.
I stumbled upon some of Zazie's old posts today, and honestly, it hit me right in the gut. I ended up spiraling a bit, digging through her history, only to realize that her last update was all the way back in last year.

Well, I finally managed to have a good cry.

I'd vouch for anything Patagonia says.

I've gotta say, thanks to all the good people in this group...
And thanks to Zazie too...😘

Hello everyone, you wonderful and brave people

My dear loved one has been diagnosed with: - TM baseos cranii
- Post-op transnasal tumor ablation (Pathology: carcinoma - operated Feb 25, 2008)
- Liver metastases
- NPL unknown locations

Out of all this, the only thing I know for sure is that the cancer has spread to his liver. They have no clue where the primary tumor actually is, but he just finished his first round of chemo. He took carboplatin three weeks ago and handled it pretty well, but the oncologist says time is running out—which is driving me absolutely insane, though I don't have the luxury of time to process it right now. We have a PET/CT scheduled for mid-month that is supposed to pinpoint the primary site. Right now, they're just pumping him full of meds (Tramal, Transtec, Citolon, Zyprexa, Aloxi) just to dull the pain. It makes him so numb and vacant, almost like he’s giving up on the disease, and I can't allow that because I love him too much. It is gut-wrenching to watch him go through this—the pain is relentless, the weight loss is drastic, he won't eat, and he's just completely exhausted by everything.
I am looking for a Second Opinion. If anyone has recommendations for an oncologist here in the States or even abroad, please let me know. Or alternatives—what can you recommend and who?
He's currently in the hospital undergoing his second round of chemo. Thank God his blood work was decent (white cells, platelets...). I am endlessly grateful for all the info you guys have shared on this forum (beta glucan, aloe, advice, support from those who have lost loved ones), even if I'm not exactly a tech expert when it comes to using the computer.
Someone mentioned immunotherapy here before (I think it was Grace Fowler), so I'd like to know more about that; where, what, how?
Our fight has only been going on for two months. We found out by accident, so it’s been a massive shock. My emotions are all over the place, but I guess that's normal, isn't it? One day he was perfectly healthy, and today...

Love and faith are what give me the strength to keep going.