Support resources for families dealing with cancer and other serious illnesses

Melissa Kim45, honey, I am so sorry. You gave her everything you possibly could, and I know you both felt that connection deep down. I'm certain she loved you just as much...

Dina, PLEASE, keep fighting! I'm positive that once they get these next tests and results back, they'll come up with a whole new game plan! Honestly, after everything you've been through, you've learned how to take those hits with grace—but staying tough, never giving in!
You have so much strength left for the fight, for every single new day, sweetie... and you know it too! What do you mean, goodbye?!
I'm so glad you're planning on immunotherapy, and I truly, truly hope it does the trick for you.

Hi everyone!

In the brief time I’ve spent on this Forum, I’ve come to realize that—whether people want to admit it or not—it’s unfortunately always the same group of people surfacing here, all bound together by the weight of serious illness. It feels as though the "newcomers" aren't exactly welcomed with open arms unless they speak the exact same dialect; if you don't fit their age demographic or specific vibe, you just get ignored. Take Lisa White54, for instance. She shows up here consistently, much like I do—and likely, she's dealing with the same sense of isolation that I am.
But look, let’s give those of us who aren't quite sure how to navigate all the "smileys," "angry faces," and digital emojis another chance. We aren't angry at the healthcare system, nor do we have grievances against our doctors. Why? Because the disease is what it is. Our CT results were read for us immediately today, just as they were during our last check-up two months ago. They did everything within their power. Is a doctor to blame if the scan isn't good? Our oncologist tells us exactly what we need to know—what our rights are and where we hit walls. We are fighting just as hard as all of you to secure expensive medications, and our struggle doesn't have to be an "open wound" visible to everyone; rest assured, we have been hammering the authorities with letters and inquiries. Even our doctor would be the happiest person in the room if he could provide us with unrestricted access to the absolute best treatments—like the kind found at the Anderson Clinic in Houston. But given his current resources, he does the best he can for us, and we trust him.
Now, for a specific request: it looks like we’re starting Taxol this Monday. We haven't been briefed on the side effects or the administration process yet. Does anyone here have experience with this and perhaps some insight that could help us?

Melissa Kim45 (The user provided only said:" which means "says:", implying they want me to wait for the content or that the content was missing. Since there is no actual text to rewrite, I cannot perform the task yet. However, if this was meant to be the start of a prompt containing the source text, please provide the full text you wish for me to transform.)
My mom fought a hell of a long fight. She was a winner in her own way—a huge one, actually.

She passed away this morning.

Thanks to everyone here. I love you guys, seriously. Just keep fighting the good fight for us—stay brave and give it everything you've got. No holding back.

I'll get back to you with more details later.

Melissa Kim45, I am so incredibly sorry. Seriously, my heart goes out to you. You are being so damn brave right now—just keep that strength up—but please, don't forget to look after yourself, too. You can't pour from an empty cup.

Thanks so much, you guys. 😘

Susan Ruiz76 said:In the short time I’ve been hanging around this Forum, I’ve realized something that people probably don't want to admit out loud: it's almost always the same group of people surfacing here, all tied together by the weight of a serious illness. It feels like if you're "new," you aren't exactly rolled out with red carpet treatment unless you speak their specific dialect. If they sense you aren't in the same age bracket or don't fit their mold, they just shut you out. Take Lisa White54, for example. She’s constantly popping up here and there, much like I am—but I suspect she’s dealing with the exact same thing I am: feeling like an outsider.
Look, let’s give those of us who don't know how to play the game with "emojis" or "angry faces" another chance here. We aren't angry at the healthcare system, and we don't have any beef with the doctors—so why? Because cancer is what it is. Period. Today, they read our CT scan results to us immediately, just like they did during our last checkup two months ago. They are doing everything within their power. Are they really to blame if the results aren't good? Our oncologist tells us exactly what the situation is, what our rights are, and what we can or cannot access. We are fighting just as hard as all of you do when it comes to expensive medications. Our struggle doesn't have to be some "open wound" visible to everyone, but rest assured, we have been absolutely hammering the authorities with letters and inquiries. Even the doctor would be the happiest person in the room if he could just provide the absolute best treatment without hesitation—something like what you'd get at the Anderson Clinic in Houston. But given the tools he actually has at his disposal, he is doing the best he can for us. We are certain of that.
So, here’s the bottom line—we’re starting Taxol this Monday, and honestly, we’re flying blind. We have zero clue what kind of side effects to brace for or how exactly the administration process works. Has anyone here actually gone through this? If you have some firsthand experience, please, step up and help us out.

I’m sorry you’re feeling rejected. Honestly, that was never my intention with anyone. I think you might be being a bit oversensitive regarding the way people talk here. This is essentially a digital town square where people come to swap ideas. You state your opinion, and then you defend it. Not everyone is a polished orator, and for heaven's sake, we're all just human. Honestly, I don't think there’s a single soul who walked in here looking for a kind word without getting one. Look, let’s be real: plenty of people here have been around the block and actually know each other personally. Because of that, the vibe and the level of communication are obviously going to be on a completely different playing field compared to the newcomers just drifting in. Everyone starts out as the "new person" at some point. Some people stick around and build real friendships, while others just pop in to hunt for a specific answer and then vanish, or maybe they just drop by once in a blue moon when they're stuck on something. It’s exactly like any other social circle—there are always those little internal cliques and unspoken dynamics. It takes time to build rapport, and honestly, it takes skill too. Trying to connect through a keyboard isn't exactly easy.

If you want to keep your struggles with expensive medication to yourself, fine—just cross yourself and thank God you have the means to handle it privately. But don't go thinking that people who go "public" with their most intimate medical battles are just being capricious or trying to act like the next Paris Hilton. They aren't doing it for clout. They’re doing it because circumstances have forced them to strip away every ounce of dignity just to stay alive. That is exactly why we launched this petition: to give people back their dignity and their right to fight for their own health.
I’m glad you all... Right away. We finally went over the CT scan results, and honestly, it feels like all our pushing to get things done by the book—treating what should have been considered "normal" from the start—is actually starting to pay off.

Look, if you want the real deal on Taxol side effects and how exactly you should be taking it, you need to talk to your doctor. That’s their literal job description, and they have more hands-on experience than anyone else on this thread. Besides, based on everything you've been saying here, it sounds like you're pretty damn satisfied with the care he's providing anyway.

God, I was so incredibly naive thinking we actually won, even though I’m practically an expert on this whole disease by now. But man, you just want to believe in what you're hoping for. And honestly? I had a reason to be optimistic. My husband was doing so well.
On Wednesday, he ended up back at Jordanovac. The cancer is back. It's hit the exact same spot it did four years ago. They're doing a bronchoscopy on Monday, so we'll see what the verdict is then. Today he’s getting some fluids drained because of a pleural effusion.
It's just awful.
It completely knocked the wind out of me. But it's not like four years ago. Not even close. My husband isn't physically or mentally anywhere near where he was back then. I have no idea how he's going to take the news, since they haven't told him anything yet.

First off, our association welcomes the recent decisions made by the Board of Directors of CMS, which aim to shorten the procurement process for expensive medications to more reasonable timeframes. However, there is a significant catch: the decrees state that hospitals will have to shoulder the costs for any drugs not currently on the CMS list. Given that we all know not every hospital is sitting on the same level of financial stability—and that this could leave certain patients footing the bill for high-cost treatments themselves—it’s my view that the fundamental goals of our petition haven't actually been met yet.

Furthermore, we need to address the bottleneck caused by excessive wait times for diagnostic testing; without those results, starting any meaningful treatment is effectively impossible. The mission of our organization, "for a new day," remains steadfast: everyone deserves an equal shot at accessing medication, regardless of where they live in America, and the same medical criteria should apply to every single patient across the country. Consequently, working alongside the coalition of health associations, we are pushing forward with our petition to ensure that top-tier treatment for chronic, severe, and rare diseases—as recommended by specialist physicians—is covered by CMS. You can download the necessary petition forms directly from our association's website.

For those of you who still have old versions of the petition forms lying around, please feel free to send them in anyway; those signatures are still valid and count toward our cause.

Together, we will replace fear with courage, loneliness with community, despair with hope, and anger with joy.

Lisa White54 said:I feel so incredibly foolish for thinking we had finally won, especially since I’ve spent so much time immersed in this disease and thought I understood the mechanics of it all. But I suppose that’s just human nature—we desperately want to believe the good news. And honestly, I had every reason to be optimistic. My husband truly was doing better.
On Wednesday, he ended up back at the Jordan clinic. The cancer has returned. It’s surfaced in the exact same spot as it did four years ago. They have him scheduled for a bronchoscopy this Monday, so we’ll know more then. Today, they’re starting him on diuretics because of the pleural effusion.
It’s devastating.
It has completely knocked the wind out of me. But this isn't anything like what we went through four years ago. Not even close. Physically and mentally, my husband just isn't where he was back then. I have no idea how he’s going to take the news, since they haven't told him yet.

Rose, I am so incredibly sorry... Please, don't lose heart. Right now, the most vital thing is for you to find the strength and courage to pull through this.

slyseal28 said:First off, our association wants to welcome the recent decisions made by the Board of Directors of CMS. It’s a relief to see that the procurement process for expensive medications is finally being streamlined into more reasonable timeframes. However, there is a bit of a catch in these decisions: it seems like hospitals will now be responsible for covering the costs of any drugs that aren't currently on the CMS list. Since we have to face the reality that not all hospitals are on equal footing financially, and there's still a real chance some patients will be stuck paying out of pocket for expensive medications, I guess we haven't actually met the core objectives of this petition yet.

We also need to point out the issue regarding the long wait times for diagnostic testing. Without those results, it’s basically impossible to actually start any kind of treatment. At our association, "For a New Day," we believe that everyone deserves an equal shot at accessing medication, regardless of where they live in America. It’s important to us that the same standards apply to every single patient. So, in partnership with a coalition of health associations, we’re moving forward with our petition. The goal is to ensure that patients facing chronic, severe, or rare diseases can receive the highest quality treatment based on their specialist's recommendations, with the costs covered by CMS. You can find all the petition forms available for download on the association's website.

If anyone still has those old petition forms lying around, please feel free to send them over. I guess the signatures on them are still valid and can still be used.

Together, we can trade fear for courage, loneliness for community, despair for hope, and anger for joy.

If there were such a thing as a Nobel Prize here in America that I could personally hand out, I think you and Angela Wright would be the clear winners. On behalf of all the patients, their families, and everyone you’ve helped—whether directly or just by being there—thank you.

Hey there!!
So, here I am after what was, quite frankly, a totally insane week. I’ve been tearing myself apart all over town—basically running from one hospital to the next—just trying to get these test results back as fast as humanly possible. Thank God for the amazing people who helped me out while I was being so relentless about it... So, here’s the deal: the lung X-ray? Done. The abdominal ultrasound? Done. Now, the OB-GYN surgeon is calling it a so-called "abscess"—which really just means they want to try an ultrasound-guided biopsy... and then, supposedly, I'm supposed to check back in with the surgeon, but yeah, that's just how it goes... :-(. Then, my dear abdominal surgeon—as if he were possessed by some demon—gets stuck in surgery today and hasn't shown his face all day... and the assistant finally deigns to grace me with a word after a few hours just to say: "We'll contact you when a slot opens up for the biopsy..." But honestly, I'm not even sure if that's even going to catch anything this way... basically, "Go home... and wait." I walked out of that hospital feeling pretty pissed off and just completely over the whole situation. But then, as I was walking back to my car, that furious little thought popped into my head again... FROM ONE MESS TO ANOTHER, BUT AT LEAST I'M DOING OKAY HERE... So, I hopped in the car, blasted my favorite CD, and made it home with some seriously good vibes.
Anyway, my friends, WE KEEP MOVING.........
Warm regards from Dino :-)

Grace Fowler said:Hey everyone!!
Well, I just survived an absolutely insane week. I've been running all over town—literally bouncing from one hospital to the next—just trying to get my test results back ASAP. Thank God for the amazing people who helped me stay on top of everything... So, here's the deal: my chest X-ray is set, the abdominal ultrasound is done, and now the gynecological surgeon is pointing toward a supposed "abscess"—basically saying they might need to try an ultrasound biopsy... and then wait for them to call you back. That's it... :-(. To make matters worse, my wonderful abdominal surgeon got stuck in surgery all day today... and his assistant finally deigned to talk to me after a few hours just to say, "We'll contact you when there's an opening for the biopsy." But honestly, I'm not even sure if that's the right way to catch this thing... They basically told me to just go home... and wait. I left the hospital feeling pretty frustrated and just totally fed up with the whole situation. But as I was walking to my car, that crazy thought popped into my head again... I CAN'T CHANGE THIS BODY, BUT AT LEAST I'M DOING OK RIGHT WHERE I AM... I hopped in the car, blasted my favorite CD, and drove home with such a great vibe!
So, my friends, LET'S KEEP GOING.........
Warm regards from Dino :-)

Dina, we love you just the way you are... even when you're feeling down. God knows you have every right to feel that way sometimes!
And like you said, you can't change your skin... so you just keep moving and handle things however you can. THAT'S IT. You're staying active, you're involved, and you're making sure everyone else fights for YOUR life.
It's definitely a win that all your other results are steady, and I'm crossing my fingers👍that you get that biopsy appointment quickly and that it shows exactly what needs to happen next!
Take care.

Lisa White54 said:I felt so foolish thinking we had actually won, even though I’m so deep in this disease and feel like I know everything there is to know. But you just want to believe, right? And honestly, I had my reasons to be hopeful. My husband was doing so well.
He stayed overnight at the Jordan hospital this Wednesday. The cancer came back. It’s in the exact same spot as four years ago. They’re doing a bronchoscopy on Monday, so we’ll see what happens then. He’s getting some drainage today because of pleural effusion.
It’s just awful.
It totally knocked the wind out of me. And it’s not like four years ago... not even close. He isn't physically or mentally anywhere near where he was back then. I have no idea how he’ll react when he finds out, since they haven't told him yet.

Honey, I know things are heavy right now, but I’m certain you’ll find your footing again soon. It happens naturally... you just find that strength and start fighting for every single day, because you never know what tomorrow holds... maybe even a new medication? Who knows?! You can never be sure...
Where we pull this strength from, only God knows. But seeing the stories here, it’s truly incredible how much people can endure—both the patient and the one caring for them.
And... you aren't stupid for thinking you'd won. I feel just as foolish because that damn thing can come back whenever it wants. You have to keep believing in the good stuff and pass that hope on to him... I'm sure there are still options to try.
Stay strong, but please don't try to carry this whole weight by yourself...

Susan Ruiz76 said:In the short time I've been hanging out on this forum, I’ve noticed that—whether people want to admit it or not—it’s pretty much the same group of people constantly showing up because they're all dealing with serious illness. It feels like "newcomers" don't always get a warm welcome unless they speak the exact same language or fit a certain age bracket... if you don't vibe with the established crowd, you just get ignored. Take Rose, for example... she's 44 and shows up everywhere just like I do, but I bet she's feeling that same sense of being left out that I am...
Look, can we give us a break? Some of us just aren't great at using all those emojis and angry faces... We aren't actually mad at the healthcare system or the doctors—honestly, why would we be? It’s just the nature of the disease itself. They read our CT scans immediately today, just like they did during our checkup two months ago. They're doing everything humanly possible, so how can we blame them if the results aren't what we hoped for? Our oncologist tells us exactly what's happening, what we're entitled to, and what we aren't. We’re fighting just as hard as everyone else to deal with these massive drug costs, and our struggle doesn't have to be an "open wound" for everyone to see... even though we've been absolutely relentless with letters and inquiries to the authorities! Believe me, he’d be the first one wanting to provide the absolute best treatment without any hesitation—like what you'd get at the Anderson Clinic in Houston. But with the tools he has right now, he is doing his absolute best for us, and we truly believe that...
So, quick question—it looks like we’re starting Taxol on Monday... we’re totally in the dark about the side effects and how it's actually administered. Does anyone have experience with this? Any advice would be amazing...

I feel so bad that you’re feeling left out, but honestly, I don't think you have any reason to feel that way! I’m not exactly young myself, I'm definitely not a tech wizard, and I've only been on this forum for about ten months without meeting anyone in person... but believe me, I've never once felt rejected or ignored. On a forum as heavy as this one, I really doubt anyone would ever ignore someone on purpose...
It feels like people often stay silent because they aren't sure how to answer, or maybe they’re just afraid of saying the wrong thing... It always makes me sad when someone gets left hanging! But hey, this is just a community of everyday people where age and status don't mean a thing. You get out exactly what you put in...
You just share what you know and what you can... There aren't any "duty officers" here who have to answer everyone's questions. We're all in this together, at least that's how I see this forum... Right?

I have to share my own experience with Taxol... I took it as my first line of chemo alongside Cisplatin every 21 days, and then later used just Taxol as a second line—weekly, but with smaller doses...
He usually handles it pretty well! No vomiting at all... just a little bit of nausea for the first two or three days...
Honestly, I felt almost back to my old self after just the first round of treatment. I didn't even lose a single pound... Phew! But hey, no big deal, all things considered! During that first session, they watch you a little more closely just to make sure you don't have a heavy reaction to the chemo, but that rarely ever happens...
Anyway, like Angela Wright said, you should definitely check in with your oncologist about the most common side effects. It’s way better to be prepared so you don't get unnecessarily stressed out... This is just my own experience, though, since I dealt with metastatic ovarian cancer myself!
Hey there! I really hope you'll keep checking in with us...

Lisa White54 said:I feel so foolish for thinking we had actually won, especially since I’ve immersed myself so deeply in learning about this disease and feel like I know just about everything there is to know. But I suppose that’s just how it works—you want to believe so badly. And honestly, I had my reasons to be optimistic. My husband was truly doing so much better.
On Wednesday, he ended up staying overnight at Jordan. The cancer has returned. It’s back in the exact same spot as it was four years ago. They’re scheduled to perform a bronchoscopy on Monday, so we’ll see what the next steps look like after that. He’s starting dexamethasone today because he has some pleural effusion.
It’s just devastating.
I feel completely leveled by this news. The thing is, it isn't anything like it was four years ago—not even close. My husband isn't anywhere near the same physical or mental state he was back then. I honestly have no idea how he’s going to react when he finds out, because they haven't told him yet.

My heart truly goes out to you; I can only imagine how discouraging this feels. But please, keep fighting and stay persistent. I think it is incredibly vital to hold onto the fact that you gave everything you had and that you never, ever gave up.
My dad was admitted to Mayo Clinic today. He’s finally going to start his treatment. It breaks my heart so much that I can't be right there by his side. The house feels so empty, and my mom is all alone because my sister stayed behind in New York City. My husband and I are 5.6 miles quite far from my parents, so we’ve been spending every single day over at their place.
It is even harder to witness my father looking so vulnerable, when he has always been our rock and the strongest pillar for our whole family.
But I REFUSE TO STOP hoping and believing that things will get better and that he will pull through chemotherapy, even though I know realistically it isn't that simple, especially since he’ll likely need surgery following the chemo—specifically, a bone resection.
I know how incredibly difficult this is for you, but I truly believe you won't give up. That would be too easy, and everyone here in this forum is such a fierce warrior. You can draw strength from them.

Hi everyone, I haven’t posted in a while because my CT scan results were pretty devastating. They say there aren't any metastases, but there’s fluid in my abdomen and between the loops of my small intestine... everyone just seems to be shrugging their shoulders at me... My surgeon wants a PET scan, but the oncologist doesn't think it's necessary... or rather, they won't recommend it, and my stomach is basically being pushed out of place... I honestly don't know what to do... I'm losing heart...

Nancy Thomas18 said:Hey everyone. I haven't checked in here for a while because my CT scan results were pretty devastating. They're saying there aren't any metastases, but there's fluid in my abdomen and caught between the loops of my small intestine... and honestly, everyone just seems to be shrugging their shoulders at me. My surgeon is pushing for a PET scan, but my oncologist thinks it's unnecessary—or rather, they won't officially recommend it. On top of all that, my stomach is being compressed. I truly don't know what to do... I'm starting to lose heart.

Don't you dare lose heart. You’ve fought this far, so keep pushing forward. You can beat this—we all know it, and we believe in you.
Wishing you nothing but the best.

gentlemoose62, thank you. It’s lung cancer, and Taxol will likely be our last line of defense. We’ve discussed this extensively with his oncologist, who recommended it to the hospital board, and they gave him the green light. He’s actually been cleared for Taxol since May, but we’ve been holding off because he’s been doing so well for the past year. However, the latest CT scan shows the tumor mass has increased slightly—though, thank God, there are no metastases; the lungs are clear, open, and free of pleural effusion. His blood work is perfectly fine (likely even better than mine, for that matter). On Monday, we’re heading to another city to see the oncologist. Given the various things I’ve heard regarding premedication for Taxol, do you think it’s wise to pack a bag for the hospital? Some people stay for a day or two, while others are there longer. Should he take something for nausea a day in advance, similar to how he did with other chemo drugs like Cisplatin?
Rose and her husband deserve nothing but the best—it doesn't always have to be this grim. We met someone once who had "gallons" of fluid drained from his body—it was horrific. He was completely drained, his kidneys were failing, he was receiving albumin through an IV, and they had to tap his lungs. Now, after two months at home, he’s out every single morning for coffee! Good luck!

Susan Ruiz76 said:OK, we're heading to another city this Monday to see the oncologist. Since I've heard a few different things about premedication for Taxol, do you think it's smart to pack some hospital supplies? Some people stay a day or two, others longer. Should I take something for nausea a day early (like with other chemo treatments, e.g., what he did when he was on Cisplatin)?
I want to wish Rose and her husband nothing but the best—it doesn't have to be that scary! We met someone where they had to drain "gallons" of fluid from his body—it was intense, he was completely drained, kidneys were failing, he was getting albumin through an IV, and they had to tap his lungs... but now, after two months at home, he’s out every single morning for coffee! Good luck!

Personally, I never took anything a day early. I just ate lighter meals so my stomach wouldn't feel heavy. The premedication itself isn't hard; it actually helps calm everything down and protects your stomach lining. I didn't have any issues at all. It's always smart to bring a few things for the hospital just for practical reasons, but if everything goes smoothly, you can definitely head home the next day. I only stayed overnight the first time because I didn't know what to expect after chemo, but after that... I would have gone home the same day 186 miles times over!
The hardest part for me during chemo (when I was on the Day 21 schedule) was just lying there for so long... it has to drip slowly for about 6 hours... so you're constantly needing the bathroom, feeling dizzy, and just feeling totally stiff. A weekly Taxol therapy with smaller doses worked much better for me since it's automatically shorter, though you do deal with more poking and searching for veins and stuff like that.

But, my best advice right now is... don't overthink it! You have the weekend ahead of you, so enjoy it. Everything will go exactly how it needs to on Monday. We can't change our circumstances, right? So let's just make sure we enjoy ourselves as much as we possibly can...
Best wishes and good vibes!

Nancy Thomas18 said:Hey everyone, I haven't posted in a while because my CT scan results were pretty devastating. They say there aren't any metastases, but there's fluid in my abdomen and tucked between the loops of my small intestine... everyone is just shrugging their shoulders... my surgeon wants a PET scan, but the oncologist thinks it isn't necessary—they won't recommend it—and my stomach is basically being pushed out of place... I honestly don't know what to do... I'm losing heart...

I am so incredibly sorry, honey, but please insist on that PET scan, especially since your surgeon is asking for it. From what I've seen, I've come to realize that oncologists are often the first ones to throw up their hands... Hold onto your surgeon's recommendation and get that PET done ASAP; we have to find out what's causing that fluid in your abdomen.
Don't lose hope now... I know it's hard... and obviously, nobody knows exactly how you're feeling right now except you, but please don't stop... you have to keep pushing. Anyone can give up, but fighters like you... you know you always have to keep moving forward...
🙂

Nancy Thomas18 said:Hey everyone, I’ve been quiet for a while because my CT scan results were absolutely devastating. They're saying there aren't any clear metastases, but there's fluid buildup in my abdomen and trapped between the loops of my small intestine... and honestly, everyone is just shrugging their shoulders at me. My surgeon is pushing for a PET CT, but the oncologist thinks it’s unnecessary—they won't even give a formal recommendation. To top it all off, my stomach is being compressed or shifted out of position. I’m genuinely lost right now. I feel like I'm losing my will to fight.

If there aren't any metastases, you're winning. It’s that simple. Honestly, I just don't get what some oncologists are thinking with their endless complications.🤷

I'm signing off on everything gentlemoose62 wrote.👍

To add my two cents:
Just say it one more time—tell me how you’re losing heart. I’m going to hunt you down and give you the absolute beating you deserve. Did you hear me?🙂