Support resources for families dealing with cancer and other serious illnesses

Rachel Chase80 said:I'm new here.
First off, I want to wish everyone the very best for 2009. I hope you all find the courage and the hope needed to see these terrible stories through to the best possible end—recovery.
My aunt, who is essentially my next of kin since she’s single with no kids and never married, is currently in the hospital. It’s almost been a month now. She has malignant pancreatic cancer. It was a massive shock to our family, and we're still just trying to wrap our heads around it.
It all started with some digestive issues, and we honestly thought she just ate something bad. But those symptoms didn't clear up after two weeks. Then her skin started changing color, and suddenly, without any pain, she turned yellow. Her liver tests were devastating, and for a moment, we thought it might just be a gallbladder issue. Unfortunately, it’s much worse than that.
Four days ago, she underwent surgery to create a bypass from her stomach to her small intestine, just to manage the immediate complications, and that’s when they told us the tumor couldn't be removed. Now, we're waiting for her to recover from the surgery so we can hear what the oncologists say regarding chemotherapy. Honestly, though, the abdominal surgeons already told us it's unlikely she'll qualify.
We haven't told her yet, and we're torn on whether we should even tell her if they decide not to proceed with chemo. I'd love to get your perspective. Also, does anyone here have experience dealing with this specific disease? We have no idea what's coming, and this uncertainty is the hardest part. 😢 The doctors are telling us time is limited, but we're still holding onto the hope that she'll have some good time left.

Unfortunately, this is an incredibly aggressive and sneaky disease. By the time it’s actually detected, it has often already spread too far to be stopped. I am truly sorry to hear this😢. You can find some brief info on pancreatic cancer on our association's website, and there are currently a few active members on this forum fighting this exact battle.
As for whether or not to tell her, that’s a call only you can make. You know her better than anyone, and you have to weigh whether knowing the full truth might be counterproductive—like if it causes her to lose the will to keep fighting.
Just focus on giving her a daily life filled with warmth and love. Make sure she has everything she needs so she doesn't have to worry and isn't in pain. Everything else is really in Godly hands.

Angela Wright said:Unfortunately, this disease is incredibly progressive and sneaky. By the time it’s actually caught, it’s often already sprinted way ahead of where you can stop it. I am truly, deeply sorry😢. If you check our association's website, there are some short articles on pancreatic cancer, and right now on the forum, there are a few active members fighting through it too.
Whether you tell her or not... man, that's a call you have to make yourself. You know her better than anyone. You don't want to drop the full truth on her if it's just going to be counterproductive—like, if she hears the worst and just gives up immediately.
Just give her a daily life filled with warmth and love. Make sure she has everything she needs, that she isn't worrying, and that she isn't in pain. Everything else? It's really in Godly hands.

Thanks for responding. Honestly, every single word helps. We're just holding onto hope that she can at least get discharged from the hospital and spend some quality time with us. We're praying the doctors' prognoses aren't the final word. We're hoping there's a next step—maybe chemo—that could actually help ease things.
It's just horrific. You constantly find yourself playing the movie back in your head, over and over, wondering if you could've spotted the symptoms sooner. But we're only human, right? It's not natural for us to sit around dwelling on death and all the dark stuff. It’s only when life hits you square in the face that you're forced to deal with it.
We noticed a shift in my aunt's behavior a few months back. She was acting depressed—which is supposedly one of the first signs of this disease—but we didn't realize it could actually be something so serious.
But hey, what's done is done. Now we just have to fight, stay positive, and believe that things can get better.

Angela Wright said:Because we’re all living through such an incredibly brutal stretch—not just those battling illness, but their families and everyone close to them who gets dragged into the fray—and because our society lacks the psychological support systems we desperately need, I decided to start this forum. I’ve been caught in the middle of this storm myself, so I figured we could create a space where those of us who have been there, or are currently navigating it, can offer some semblance of advice and solidarity.

Feel free to drop a post here. I promise I'll always be around to reply, offer a suggestion, or at the very least, just sit in the trenches with you. Sometimes the weight of watching someone else fight is even heavier than the battle itself.

Personally, I’ve walked through hell, and I’m still walking through it. It’s a path no one should ever have to navigate alone.

Sending big hugs to everyone.

My name is Mark. : I’m looking for any kind of help or advice. Six months ago, my mother had surgery, and they found out she had kidney cancer. They removed the kidney, and everything seemed to be going okay, until a routine follow-up turned into a nightmare. They told her the cancer had already spread to her liver and lungs, and it's moving fast—which is the worst part. We’ve consulted three different doctors, and they all say chemo won't do much at this stage. There is a specific medication that could stop the spread, which is supposed to be added to the Medicare coverage list soon, but right now, it's prohibitively expensive. $16000 One dose for a month is costing us a fortune. We managed to scrape together enough for one dose, but we have no idea how to keep this up. I’m asking anyone for information—does anyone know when this drug will actually be covered by Medicare? Or if there's any other advice or anyone I should reach out to? I’m truly grateful to anyone who takes the time to read this and offers even a small piece of advice. THANK YOU SO MUCH.

neonpanther12 said:My name is Mark. I am looking for any help, advice, or anything at all. Six months ago, my mother had surgery because she was diagnosed with kidney cancer. They removed the kidney, and everything seemed fine until recently. During a routine checkup, they found out the cancer had spread to her liver and lungs, and it’s aggressive. We’ve consulted three different doctors, and they all say chemotherapy won't be effective at this stage. There is a specific medication that could stop the spread, which should eventually be covered by Medicare, but right now, one monthly dose costs $16000. We managed to scrape together enough for a single dose, but we have no idea how to keep this going. I'm asking anyone for information—when will this drug be added to the Medicare coverage list? Who can I contact? Any advice would mean the world. Thank you so much to everyone who reads this and offers any kind of guidance. THANK YOU VERY MUCH.

Look, like I mentioned to you in our private messages, but I'll say it here for everyone else too...

It is most likely the drug Sutent. We were actually just discussing this in our association yesterday, and we are sending an urgent formal inquiry today to find out exactly when Sutent will be added to the Medicare formulary. We are also planning to take this issue back to the press—likely CNN—so keep an eye out.
We are getting calls from families who have been paying out-of-pocket for months and have already liquidated most of their assets just to stay afloat. It is high time people get some transparency so they can actually plan for the future. Consistency is everything with this kind of treatment; if you miss doses, the efficacy drops and you lose the progress you've made.

Ryan Sanders49 said:Hey everyone, hope you're all doing great... Quick question for the group: I’m living out in the middle of nowhere right now, just stuck in the sticks, so I was wondering if anyone could point me in the right direction... where can I actually track down some KUZU powder and those umeboshi plums? It's getting harder to find the good stuff when you aren't living in a major hub like NYC...

So, you're looking at those organic health food stores... though, honestly, I haven't a clue if there are any actually located near New York City... I'll shoot you a private message with a link that might help you dig up some more info...

Dear Mr. Lepina,
I just heard about you and your therapeutic treatments today, and I’m reaching out to see if you can help us.

It isn't actually about me; it's my mother (45). Four years ago, she was diagnosed with malignant breast cancer in her left breast. After having the entire breast removed, they also had to remove her ovaries and uterus since those were driving the hormonal tumor.
She went through six rounds of chemo and 30 radiation sessions after that. Her results looked good at the time.
However, two years later, her markers indicated that cancer cells had returned. A PET/CT scan confirmed a 2.5 cm malignant tumor in her liver.
In November 2007, she had surgery to remove the affected part of her liver and completed another round of chemotherapy. By June 2008, her results were more than satisfactory, so there wasn't a need for further testing until this past January.
But now, an ultrasound has shown recurring malignant changes in the liver—another 2.5 cm mass—in an area that isn't operable. Her markers are also showing significant issues. I don't have the exact numbers in front of me right now, but they are at least ten times above the upper limit. The doctors are meeting on a medical board to decide what the next steps are, or if there even is a way forward.

I'm not sure if people usually reach out to you like this, but I don't see any other options right now, so I'm sincerely asking for any help you can provide. Do you think your treatment or perhaps alternative medicine could help my mom? If so, what kind?

Thank you so much in advance,
Dragan B.

Angela Wright said:So, just like I mentioned to you on PMU, but now I'm saying it for everyone else too...

It’s most likely a matter of getting Sutent covered. We were actually discussing this in our association yesterday, and we’re sending out an urgent inquiry today to find out exactly when Sutent will finally be added to the Medicare formulary. We’re also planning to take this issue back to the press—likely CNN—so keep an eye out.
We keep hearing from people who have been paying out of pocket for months now; they've practically liquidated their entire life savings just to stay afloat. It’s high time people got some sort of timeline so they can actually plan for the future. You can't just skip doses; continuity is everything here. If you break the cycle, the treatment loses its edge, and the response just isn't there.

Thank you. I wanted to ask if you could tell me how I might help—in any way possible—to ensure my mother and all those suffering receive the proper medical care every human being deserves? My sister wants to get involved too; we’ve already filled out the paperwork to join "For a New Day."🙂

neonpanther12 said:Thanks. I want to ask you—how can I actually help? How can I make a difference for my mother and everyone else out there fighting these illnesses, ensuring they get the real medical care every single human being deserves? My sister wants to dive in and help with all of this too, so we’ve already submitted our applications to join the "For a New Day" association.🙂

Get behind the initiatives they're running. If you feel up to it, you can even go public with what your mother is going through—the advocacy groups can help set that up for you. The whole point is to wake people up and make them realize that cancer isn't just some distant tragedy; it’s a reality that hits home for every single one of us. It won't just vanish into thin air if we keep burying our heads in the sand because the conversation feels too heavy or uncomfortable. We have to talk about it.

Post here, share what you find on the forums, and contribute to the association's boards. Use this space to educate yourself and, more importantly, to educate others. In the fight against cancer, information is pure power—and frankly, around here in America, we still don't have nearly enough of it.

The doctor called us with the worst kind of news... they found metastases in his lungs. 🙂
We haven't told Dad anything yet. He has an appointment this Wednesday. They have to run a biopsy first to see exactly what we're dealing with, and then it’s straight into chemotherapy. I am absolutely devastated. I honestly don't know how I'm going to handle this. 🙂

brisksurfer said:The doctor called us... he had bad news... they found metastases in the lungs. 🙂
We haven't told Dad yet... there’s an appointment this Wednesday. They have to run a biopsy first to see what we're dealing with, and then it's straight into chemo. I am just completely broken right now, I honestly don't know how I'm going to handle this.🙂

I am so incredibly sorry. I'm sending every single positive thought my way to you.
I'm also new to this forum, and unfortunately, I've got my own heavy story to tell. I couldn't even begin to fathom the sheer amount of grief people here go through. I remember feeling so utterly alone and powerless when we finally had to face the reality that my aunt had cancer.
I'm keeping everything crossed for you—hoping you get through this and that you all find a way to pull together and move past these nightmare thoughts.

Rachel Chase80 said:I am so incredibly sorry. I'm sending every single positive thought your way.
I'm also new to this forum, and honestly, my own story isn't exactly pretty either. I couldn't even begin to wrap my head around the sheer amount of grief people endure here. I felt utterly alone and completely helpless the moment we had to face the reality of Auntie's cancer diagnosis.
I'm keeping everything crossed that you get through this and that you all find a way out from under these dark clouds.

Thank you! 😘
No one can truly grasp this unless they've lived it... It hit me like a freight train because I never once imagined lung metastases were even on the table... And the absolute worst part? Having to break the news to him...

To all our new and longtime members—KEEP FIGHTING, NEVER BACK DOWN, AND TRUST IN GOD'S HELP!!!

My dad’s been battling the nastiest kind of lung cancer with massive metastases for three months now. Honestly, the doctors were basically telling us to get ready for things to just keep getting worse every single day.
But we haven't backed down for even one second.

We’ve thrown everything at this, including a ton of alternative treatments. We pray, we fast, and we make sacrifices.
And thanks to God, my dad's condition is actually showing visible improvement. Some of his doctors are looking pretty stunned right now.😕

Believe me, the outlook was incredibly grim. So, keep your heads up and attack this thing from every possible angle with everything you've got.

puse

casualrider21... thanks for having my back!

We told the old man... it just broke him. But I refuse to let him give up. I am doing everything in my power to lift his spirits.
Tomorrow we head to the hospital to get the actual facts about what's going on... Come on, everyone, keep your fingers crossed that it’s good news! 🙂 🎉

brisksurfer said:casualrider21... thanks for being there for me!

We told the old man... it just broke him. But I am not letting him give up, not a chance. I'm trying everything under the sun to lift his spirits.
Tomorrow we’re heading to the hospital to get the real deal—the actual facts about what’s going on... come on, everyone, please, just keep your fingers crossed that it turns out okay! 🙂 🎉

I'm crossing my fingers and praying everything works out. Stay strong and don't let anything knock you down! You have each other and a whole lot of heart, and honestly, that's what matters most!

Actually, I wanted to ask you all for a huge favor. Can anyone point me toward some dietary advice for someone battling pancreatic cancer? Do you know of any specific books or journals? Or maybe just some advice from your own life experiences?

The plan is that once my aunt recovers a bit from her surgery, she'll be discharged, and then it's all hands on deck at home. I want to be prepared and learn everything I can before that happens.

brisksurfer said:The doctor called us... with the worst kind of news... they found metastases in the lungs 🙂
We haven't told Dad anything yet... he has an appointment this Wednesday. They'll have to perform a biopsy first to confirm exactly what we're dealing with, and then comes the chemotherapy. I am utterly devastated, I simply don't know how I will cope 🙂

Don't lose hope, and please, try not to grieve just yet... pull yourself together and push those tears aside. The fight is still on, and you’re going to need every ounce of strength and that iron will to stay strong for your father...

Only two months ago, we were at home, enjoying a sense of perfect peace and living under the delusion that everything was fine. One PET/CT scan and a specialist's diagnosis changed everything in an instant. Twenty-four hours later, the verdict was in—a recurrence. Now it's more surgery and more rounds of chemo... But, life goes on. We move forward, perhaps a bit more courageous than before, and honestly, grateful that we didn't hesitate when it mattered most...

I am sending a massive dose of support your way, keeping you all in my thoughts as you face this battle... Don't let them win...

Nancy Hernandez43 said:Don't lose hope, and don't regret anything. Pull yourself together and dry those tears! The fight isn't over, and you need strength and a steel will to support your father!

Just two months ago, we were sitting at home, totally at peace, thinking everything was perfectly fine. Then one PET/CT scan and a specialist's diagnosis completely rocked our world. Twenty-four hours later—boom—the juice was out: it's a recurrence. Now it's more surgery and more chemo! It is what it is. We move forward. We're even braver now because we didn't hesitate and reacted fast!

I'm sending you a massive dose of support. My thoughts are with you all for a successful fight! Don't let them beat you!!!!!!

Thank you!!!!!
I feel better... I realized that if we all just sit around crying, everything is going to hell, so I decided to stay strong. 👍

We went to pick up the results today... there's a new tumor on the bronchi plus one metastasis.
We don't have any clear answers yet because the report went to the Maxillofacial Surgery department where we've been seeing everyone so far... tomorrow we have to head over to Jordan to see what's actually happening.

I'll update everyone once we know more. See you tomorrow! :*

brisksurfer said:Thank you so much!!!!!
I’m doing better... I realized that everything will just spiral out of control if we all sit here weeping, so I decided it was best to stay strong 👍

We went to pick up the results today... they found a new tumor on the bronchi plus one metastasis.
Nothing is certain yet because the report was sent to the maxillofacial surgery department where we've been seeing everyone so far... tomorrow we have to head over to Jordan to see what is actually happening...

I'll let everyone know how it goes. Sending love to all of you :* see you tomorrow!

That’s right, stay strong! Crying won't change the outcome; one simply has to remain rational in these circumstances and accept reality, as there is nothing to be done about it...

Before her last round of chemo, my mother said, "I used to think cancer was something you could just solve, but now I see it's become my new life"... Hang in there, everyone...

My dear Grandpa passed away on January 9th. It was quite difficult to answer the phone when they called me at 12:25 AM. Had he still been with us, he would have turned 53 today.
Thank you all for your advice and support.
I intend to remain active here and will try to help others using what I have learned about this insidious disease over time.

slyjackal38 said:My dear husband passed away on January 9th. It was absolutely gut-wrenching getting that phone call at 12:25 AM. If he were still here, he would have turned 53 today.
Thank you all so much for the advice and the support.
I fully intend to stay active here and try to help others by sharing everything I've learned about this insidious disease during our journey.

I am so incredibly sorry.😢 Hang in there and live your life well in his honor.

I need some advice—is there any kind of priority status for cancer patients when waiting to see a primary care physician? It is absolutely unacceptable that someone whose immune system has been completely decimated by chemotherapy is forced to sit in a waiting room for hours, surrounded by people coughing and sneezing all over them. To make matters worse, the doctors are handling appointments poorly; they’ll call the fourth person on the list at the very start of the day, but then skip straight to the twentieth person instead. I'm not even exaggerating. 😠 😠 😠