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Support resources for families dealing with cancer and other serious illnesses

Started by casualpanther1 · · 👁 8 views · 1.9K replies

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Participants casualpanther1quietpilot87Angela WrightJames Young87Zachary Howard2Benjamin Grant6wanderingharbor61Roger Hall15Zachary Booth3brightgardener8feralwolf24hiddentiger80Karen Fox36Elizabeth Diaz60slyseal28Linda Wright5James Martinez3Jeremy Kelly6gentlemoose62Maria Scott4shadowmason6Kevin Edwards35jadetinker42John Chase6 …
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#61 ·
Amanda Miller69 said:Yeah, eventually. I just want all this death and sickness to finally stop.

Do you honestly think that’s even feasible? Or are we just chasing ghosts?😕
Honestly, I don't think so. As long as there are people, there will be sickness and death. It’s just the way things work, and it's completely natural. The real issue is that we haven't come to terms with it. The sooner you accept that reality, the easier it becomes to focus on the actual fight—that constant effort to live your life as healthily and as long as possible. Beyond that, whether things work out is ultimately up to nature or the will of God.
wanderingharbor61 wanderingharbor61 Member
20 messages
joined Aug 2011
#62 ·
Elizabeth Gonzalez55 said:Right, ocular melanoma. Basically, melanoma happens when melanocytes go haywire—those cells are mostly in your skin, but they exist in other parts of the body too, like the eye. It’s a rare type of melanoma, totally different from the skin kind; it’s incredibly aggressive and usually spreads to the liver pretty fast. Treatment usually involves surgery to remove either the affected part of the eye or, sometimes, the entire eye. 😢

Listen, people, this damn thing is popping up everywhere. We’re getting people reaching out to us because they heard through various channels that we’ve started traveling abroad for treatment, and honestly, it’s terrifying how widespread this specific cancer has become. Even a doctor here in the US told us that the incidence rate for melanoma is skyrocketing.

Summer is coming, which means we all need to be extra careful. We did a little digging into sunscreen brands and realized they aren't exactly a silver bullet—once we saw what they actually pack into those formulas, we decided the best move is just to stay inside and only head out early in the morning or late in the evening. On the days we absolutely have to be out in the heat, we’ll just stick to hats, sunglasses, and long-sleeved clothes...

I know paranoia isn't the answer, but an oncologist in Heidelberg told me I fall right into the high-risk category—blonde hair, light eyes, lots of moles, and having burned myself in the sun more than once in my life—so he recommended I get a dermatological exam. I keep putting it off, thinking maybe lightning won't strike twice, but seriously, I definitely need to go in for a checkup. And as for the sun? Forget about it, I'm done!

Thanks for the info. That whole ocular melanoma thing sounds horrific; I'll give her a call in a few days to see how things are progressing, hopefully in time...

And regarding the sun and risk groups—tell me about it. My mom, me, my girls (especially the youngest one), and my husband all fall into that exact same group...

THANKS for the info, cheers!
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#63 ·
Amanda Miller69 said:If I wanted my life to be "exciting," I certainly wouldn't have chosen this path... just a few days after my mother passed away—her uncle died of heart failure, by the way—I called his wife today to check in, only to find out her son, my mom's cousin, was diagnosed with bladder cancer and has been hospitalized for several days already. It feels as though some dark cloud has descended upon our family, a cycle that seemingly began when my father passed three years ago. One can't help but wonder what tragedy will decide to show up next...😢

I am truly sorry you are navigating this... though if it offers any semblance of comfort, you are certainly not alone in facing these relentless waves of illness within your immediate circle...

My own mother was diagnosed with ovarian cancer, and just one week later, my aunt’s mother-in-law traveled to stay with us because we are a small family spread across three different cities in the States... tragically, she suffered a double heart attack while on the road. At that moment, we were completely paralyzed, unsure of which fire to fight first...

Once the dust finally settled six months later, I found myself embroiled in a battle at my university against a professor who behaved like a total monster, targeting me relentlessly despite my explicit warnings that I was psychologically fragile and still reeling from everything... it was only then that I finally opened up to my brother about how much I was struggling, since no one at school seemed interested in protecting me. That was also when I learned from my mother's specialist that I might have developed diabetes due to the extreme stress and lifestyle shifts... the mere thought of adding another chronic illness to the pile made my blood run cold. I began a gradual process of cutting out refined sugar, and after three months, they confirmed I don't have diabetes, though I do need to remain strictly vigilant...

As if that wasn't enough drama to endure... I have recounted this before, but I find myself repeating it now. My father ended up in the hospital on his birthday. My mother initially thought he was just joking around when he woke her up saying he needed to go to the ER. As it turned out, my mother was also diagnosed with cancer on his birthday, so we always joke that she was essentially reborn on that day. When he arrived at the hospital, the doctor was stunned that he had driven himself there, especially since a five-minute trip took nearly half an hour because he was in a pre-infarction state. To this day, they haven't quite pinned down what happened—it wasn't a full heart attack, though he does suffer from high blood pressure...

When I reflect on all of this today, I realize it isn't that we are being cursed... rather, it seems we are all simply becoming more vulnerable, and when we are this shaken by our own private battles, it becomes even harder to bear the weight of watching those we love suffer too...

Things will eventually improve; one must attempt to maintain a positive outlook...
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#64 ·
Nancy Hernandez43 said:I’m so sorry you’re going through this... but if it helps at all, you aren't alone in dealing with heavy illnesses hitting close to home.

My mother was diagnosed with ovarian cancer, and just a week later, my aunt’s mother-in-law traveled to be near us—since we're a small family spread across three different cities—and unfortunately, she suffered a massive double heart attack on the way. At one point, we genuinely didn't know which fire to fight first.

Once things finally settled down six months later, I found myself fighting a losing battle at my university against a professor who acted like a total monster, tearing into me even after I warned him that I was mentally fragile and still reeling from everything. That was when I finally opened up to my brother about how much I was struggling, since nobody at school was looking out for me. Around that same time, I found out through my mother’s specialist that I might have developed diabetes due to stress and poor lifestyle habits. I felt physically sick at the thought of having to tackle that on top of everything else. I started cutting out refined sugar gradually, and after three months, they confirmed I don't have diabetes, though I do need to stay strictly vigilant.

As if that wasn't enough drama... I've actually shared this before, but I'll say it again. My father ended up in the hospital on his own birthday. My mother thought he was just joking around when he woke her up saying he needed to go to the ER. It turns out, my mother was diagnosed with cancer on his birthday, so we always joke that she was "reborn" on that day. When he arrived at the hospital, the doctor couldn't believe he had driven himself there, especially since a five-minute trip took nearly half an hour because he was clearly in pre-infarct condition. To this day, they still aren't entirely sure what happened to him (it wasn't a full heart attack), though he does deal with high blood pressure.

Looking back on it all now—nobody is out to get us. It's just that life wears us down, and when we're already exhausted by our own struggles, it becomes even harder to process the fact that our loved ones are suffering too.

It will get better; you just have to try to keep a positive outlook.


I know things will improve. I am truly sorry you've had to endure such difficult circumstances.
My aunt and I were actually talking yesterday about everyone we've lost, and the timeline is pretty grim: my father passed away from a heart attack in 2005; my grandmother died of natural causes in February 2007; in the summer of 2007, my mother's brother's wife passed away from the same type of cancer my mother has; then in 2008, my mother passed away; and just a few days after her, her uncle passed, followed shortly by her other brother being diagnosed with cancer. I suppose that's enough for one lifetime.
Sorry, everyone—this is totally off-topic and probably doesn't belong in a space where people are actively fighting their battles. I hope that in time I can start thinking more positively, as I usually consider myself an optimist.
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#65 ·
Amanda Miller69 said:I am certain that things will eventually improve... I can only hope that, in time, I might find a way to adopt a more optimistic outlook, given that I usually consider myself a bit of an optimist by nature...

That is precisely the impression we have formed regarding you... Eventually, you will likely cease searching for justifications and simply learn to adapt to the circumstances at hand. Move forward with courage... kisses
Roger Hall15 Roger Hall15 Active Member
107 messages
joined Jul 2003
#66 ·
I mean, honestly, it’s just one of those things where you find yourself staring at the wall, wondering why everything feels so incredibly repetitive lately, almost like we're all just stuck in this endless loop of the same old patterns. It's funny how certain moods just settle in without any warning, much like a slow fog rolling over the Bay Area, leaving you feeling a bit lost in the middle of absolutely nothing at all. Nancy Hernandez43 says:

Melissa Kim45, how’s your mom doing lately? I was just wondering what things are looking like on your end of the country.

Well, alright then. That’s actually kind of funny. 😁 How’s your dad holding up after the surgery? I'm keeping my fingers crossed for him. 🙂

The situation here could basically be summed up as "everything is falling apart and we’re just trying to keep our heads above water." My mom is having a hell of a time with her weight; she hasn't been able to get it up at all, and she’s still sitting at 35.5 kg—though that’s really just because she was given a diuretic, so most of what she’s weighing right now is just fluid she was holding onto. She can’t seem to push past 37 kg no matter what we do. She really needs to go in for a checkup, but she absolutely refuses because she’s terrified, and honestly, I don't blame her. Having some decent test results, or even just something that isn't catastrophic, would give her the boost she needs, but getting her through the door to see a doctor feels like an impossible task. We really don't want to force her into anything, but at the same time, it's hard not to feel like we have to. She's just so incredibly weak, and it's not even like she isn't eating.
Honestly, she’s just out there performing this little act, begging people to come over and drop off more Leksaurin. You know, one person tells me about it, and then someone actually shows up with the meds. I have to wonder what kind of person looks at someone in my mother's state—both physically and mentally—and thinks, "Yeah, I can definitely bring her 3mg Leksaurin tablets." It’s wild. I actually found two crushed tablets wedged into the armchair, an empty wrapper tucked inside her pillowcase, and another half-used pill hiding under the rug. Seriously.😲
I gave that woman a call earlier, and honestly, I have a feeling she’s not going to show up again.😁
It was a real struggle getting that information out of her, honestly. In moments like those, she becomes incredibly sharp and cunning—just impossibly persuasive and relentless in a way that catches you off guard.
I find myself asking her if what I’m giving her isn't quite enough, though deep down, I know that isn't the issue. In the mornings, I'll check in to see how she slept, and she says fine, but then she starts acting too precious around everyone else, claiming she can't sleep and that nobody is willing to step up and help her. Honestly, it just feels like a transparent way of signaling that she knows exactly what she's doing and that she shouldn't be doing it in the first place. Besides, she clearly enjoys the little rebellion, and I've come to realize that much.

She starts coughing, just hacking away, and then she grabs this water pitcher and tries to drink while she’s still choking on it... I’m just sitting there watching water spray everywhere, her face turning bright red, drooling, all while she’s clutching a cigarette in her other hand like nothing is happening, and honestly, I’m just stunned. You can’t even say a word to her. She just snaps at me, "Why are you always picking on me?" So I pick up my phone to call someone, thinking, "She's going to take everything from me!" She’s pacing around the apartment, tripping over things, practically falling down. If I dared to mention that I’d rather be watching CSI right now, she’d just turn it back on me and say, "Well, now I'm the Pyramids!" 🙂 I'm not even looking, honestly—it doesn't matter, I’ll just leave her be—but she isn't exactly focusing on the Pyramids or anything useful; she’s just dragging herself around the apartment. It’s a miracle she hasn't completely lost it by now. Do you want to get busy? Where did I put my toothpick? What are you even up to? Is life on the internet really that fascinating? And when are you actually going to trim my nails? Then someone calls, and of course, I have to hear it: "Do you want a little bit of Melissa Kim45?" 😠
It feels like it’s happening every ten minutes now.

She really chewed me out yesterday, so I ended up giving her some Haldol last night, even though she isn't officially on it anymore, since her doctor told me it's fine to use if she gets particularly restless.

I’m just completely wiped out, honestly. I feel like I've hit a wall where everything and everyone is just grating on my nerves, and I have absolutely zero patience left for anyone today.🙄 My brother is feeling exactly the same way, and he actually told me straight up that he has no idea how he’s going to keep his head above water. It feels like there’s absolutely nobody we can lean on, because honestly, no one is stepping up to help us out in any meaningful way; it’s just us against the world in this mess. On top of everything else, he’s constantly being nagged about bringing the grandson over to see her, but then the second the little guy even breathes near something, it’s a total meltdown—don't touch this, don't move that, you're going to kill my goldfish, you're going to soak the table, you're going to ruin the couch, it’s going to tear, it’s going to wrinkle... it never ends.
So, if that's how it's going to be, then what on earth are we supposed to do about it? I mean, seriously, we're talking about a two-and-a-half-year-old who honestly acts like they were programmed in a lab to be the Terminator, and if that’s the case, then what exactly is the plan here? It’s just one of those things where you look at the situation and realize there's absolutely nothing left to say. Honestly, it's enough to make you lose your mind.😍 😁

I’ve got this nagging feeling that I should probably just sit down and re-read this entire thread from the very beginning, maybe then I’ll stumble upon some random idea for something else to try or give her, because honestly, my brain is just completely tapped out at this point. It feels like modern medicine has already done everything it possibly can, and I seriously doubt there are any other therapies left on the table.
Roger Hall15 Roger Hall15 Active Member
107 messages
joined Jul 2003
#67 ·
Amanda Miller69 said:My bad, everyone, I know this was totally off-topic and probably doesn't belong here in a space where people are actually fighting their battles. I'm hoping to get back to my usual optimistic self soon, because honestly, I've always been a glass-half-full kind of person.

Oh, you bet you do, because you're a fighter through and through—a hell of a fighter, actually. Always have been. 🙂

There's a whole damn army standing right here in this thread with you.

Sending nothing but love to everyone, just hang in there. You've got my full support, heart and soul. 🙂
John Chase6 John Chase6 Newcomer
5 messages
joined Jun 2007
#68 ·
Hey everyone!!
So, I’m back from New York City... and man, I had the absolute time of my life... :-) ...but, because things can't just stay perfect, I went in today for my routine tests before tomorrow's follow-up, and well, total bummer :-( even though my ultrasound and chest X-ray came back fine. I picked up my tumor marker results at 6:00, and—get this—that main one (around 125) jumped up to 70... damn it...(it was only 29 last time, about 2.5 months ago). At first, I was absolutely livid—just fuming—but now I've kind of slumped a little... and honestly, I can't help it, I can't just flip a switch and be fine again. Tomorrow I'm heading to the oncologist to see what the deal is... Like I said, you can't just jump from being angry to being okay overnight. I hope you guys are all staying brave and keeping up the fight.. Sending love to you all, and I'll check back in when I have news.
Vasa Din
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#69 ·
Melissa Kim45 said:Right. How fun. 😁 How is your father doing after his surgery? I'm keeping my fingers crossed for you... 🙂

Our current situation could be summarized quite simply as "everything is falling apart and please help." Mom just cannot seem to put on any weight; she hasn't even dropped below 78 pounds yet—that’s her weight today, though she took a diuretic, so that was mostly just water weight. She can't get above 81 pounds no matter what. She needs to go for a checkup, but she won't; she is absolutely terrified. Having good results, or at least nothing catastrophic, would be such a boost for her right now, but getting her to see a doctor is an impossible task. We don't want to force her into anything, and yet... she is so incredibly weak, despite the fact that she isn't skipping meals...
She smokes, of course, and begs people to come over and bring her some Lexapro. Someone tells me they will, then someone actually brings it. What kind of person looks at someone in my mother's state—both physically and mentally—and decides to bring over 3mg Lexapro? I found two pills shoved into the armchair, one empty wrapper in her pillowcase, and one half-used pill under the rug. Honestly... 😲
I called that woman afterward; I don't think she'll be coming back... 😁
I had to work so hard just to pull the truth out of her; in situations like this, she becomes incredibly sharp and cunning, very persuasive and remarkably persistent...
I ask her if perhaps what I'm giving her isn't enough. It isn't. In the morning, I ask how she slept. Fine. And then she becomes too embarrassed in front of other people to admit she couldn't sleep and that nobody wants to help her. That only means she knows exactly how to do things she shouldn't be doing. And clearly, she enjoys getting high...

She'll start coughing, then grab the water pitcher and continue choking through the coughing fit... I just watch as water flies everywhere, her face turning bright red, saliva dripping, a cigarette in her other hand, and I can hardly believe it. You can't say a single word to her. "You're always just mocking me." I pick up the phone to call someone, and she cries, "You're going to take everything from me!" She wanders around the apartment, stumbling... If I were to suggest watching CSI, she'd snap, "Oh, so now I'm the Pyramid!" 🙂 I don't watch anything, it doesn't matter, I just leave her alone, but she isn't watching the Pyramid, she's just dragging herself around the house. By some miracle, she hasn't completely broken down yet. Are you trying to drive me crazy? Where is my toothpick? What are you doing? Is it fun for you on the internet? When are you going to clip my nails? Someone calls, and I invariably hear: "Do you want a little, Melissa Kim45?" 😠
It happens every ten minutes...

Yesterday she worked me up so much that I gave her Haldol in the evening, even though she isn't supposed to be taking it anymore. The doctor said I could if she became extremely agitated...

I am so crushed I don't even know. Everything is grating on my nerves and I have zero patience for anyone... 🙄 My brother feels the same way; he even said he has no idea how he's going to endure this much longer. We have no one to lean on, no one is helping us in any capacity; we only have each other and this heavy, difficult situation. On top of that, she constantly harasses him to bring the grandson over, and then as soon as the little guy touches something: don't do this, don't touch that, he'll break my figurines, he'll wet the table, he'll mess up the couch, it's a memory, he'll tear it, he'll wrinkle it...
If she's going to act like that, THEN WHY BOTHER?! He's a two-and-a-half-year-old child, not a Terminator, SO WHY BOTHER?! Good grief... 😍😁

I feel like I should probably go back and read this entire thread from the very beginning, perhaps if I do, I might stumble upon some idea of what to try or give her, because right now, my mind is completely blank... Medicine has done all it can, and I highly doubt there will be any other therapies left to explore...


Your last post actually made me quite sad, and I am truly sorry things aren't turning out differently, but you are a fighter and you'll give everything you've got even without outside help. Her weight seems alarming to me—does she even have an appetite? You really need to find a way to help her gain some weight so she can get her energy back...

It isn’t surprising that she’s smoking or hiding her pills; it all stems from fear. My mother acts in much the same way... we all end up being against her when we tell her that smoking isn't okay, or when we call her stubborn or reckless, but the worst part is that—well, a person shouldn't be told they can't listen to whatever they want on the radio, or eat what they please, or watch whatever they want on TV, because she has decided what gets played, what gets eaten, and what gets watched. Sometimes I feel a pang of regret seeing how much it torments my father and how much he struggles with her unhealthy lifestyle...

But enough about my own situation. I truly hope you find some kind of solution, I'm keeping my fingers crossed! And yes... most importantly, you and your brother are each other's greatest support system—you're the only ones who truly understand one another, and you aren't alone because you have each other! Kisses
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#70 ·
Grace Fowler said:Hello everyone!!
So, I’m finally back from New York City... and honestly, I enjoyed myself more than I probably should have... :-) ... but, lest things seem far too pleasant, I went in today for my routine tests ahead of tomorrow's follow-up, and well, it was a total disaster :-( even though my ultrasound and chest X-ray came back clear. Around 6:00 PM, I pulled up my tumor marker results, and that one crucial number—which was about 125 before—has jumped up to 70... just great... (it was only 29 last time, about two and a half months ago). At first, I was absolutely livid, but now I’ve sort of retreated into myself... because, frankly, I can't stay angry forever... Tomorrow I head to the oncologist to see what they have to say about all this... As I said, I can't stay in this headspace indefinitely... I hope you are all still staying brave and fighting hard... Sending my warmest regards to you all, and I'll check back in once I have news...
Vasa Din

I am glad you are back and that you had such a wonderful time! Every trip provides its own unique enrichment and a bit of life-filling perspective... Don't let that marker value discourage you, as I know you will do everything in your power to bring it down... Hang in there, don't give up, and let those lovely memories from New York City carry you through!
kisses
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#71 ·
Melissa Kim45;14049016 said:Exactly. Funny how that works. 😁 How is your dad doing after the surgery? Keeping my fingers crossed for him. 🙂

...she’s actually begging people to come over and bring her some Lexapro. One person tells me about it, and then someone else actually shows up with it. Honestly, what kind of person is capable of bringing 3mg Lexapro to someone in the exact state my mother is currently in—physically and mentally? I ask her if what I'm providing isn't enough. It is. In the morning, I ask how she slept. She says fine. And then, suddenly, she becomes too much of a burden for everyone else, claiming she can't sleep and that nobody wants to help her. You can't say a single word to her without hearing, "You're always just mocking me." I'll grab my phone to call someone, and she'll snap, "They're going to take everything from me!"

My mother did very similar things when she was in the hospital. She would complain incessantly about the hospital food, and since we weren't allowed to bring anything from the outside (due to her stoma, or so the doctor said), she’d accuse us of starving her and call her friends to beg them to bring her beef stew with potatoes, candy, and whatnot. Fortunately, those women would always call me first to ask if they were allowed to. It was the same deal with medication; while she was taking her sleep aids and sedatives, she would plead with us to bring more, but when I told her she was already getting them via IV (because she saw it on the chart by her bed), she’d insist she couldn't sleep and so on. It was agonizing to stand my ground against her (my heart would just break; I wanted to give her everything) and then have to watch her afterward, looking like a toddler who didn't get their toy. She wanted that damn stew so badly, and for her own good, I refused to bring it. If I had known she would leave us so soon, I would have brought it just to fulfill that last craving, even if she only managed two bites. I don't think I'll ever be able to eat beef stew again.
It's all the illness talking. I know it's incredibly hard, but you'll get through this; humans are capable of enduring far more than they even realize. Do what you can to indulge her—within reason, of course (if she's not allowed Lexapro, then obviously not)—maybe regarding the TV or something similar. My mom used to nag me constantly, and now, I find myself missing it terribly.
Wishing you the best of luck.🙂
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#72 ·
Grace Fowler said:Hey everyone!
So, I’m back from my trip to New York City... honestly, I had an absolute blast. :-) But, because life clearly loves to throw me a curveball just when things are going too smoothly, I went in for my routine tests today ahead of tomorrow's follow-up. And well... total bummer. :-( Even though my ultrasound and chest X-ray results came back looking good, I picked up my tumor marker results at 6:00, and that one crucial number—the one we watch so closely—jumped from 29 last time (about two and a half months ago) all the way up to 70. Just great. I was absolutely livid at first, but now I’ve somewhat settled into a state of quiet resignation... I can't exactly stay in "angry mode" forever. I’m seeing my oncologist tomorrow to see what the verdict is. As I said, you can only be so furious before you run out of steam. I hope you're all staying brave and keeping up the fight. Sending my best to everyone; I'll check back in once I have more news.
Vasa Din

I'm glad you had such a wonderful trip, and try not to let those markers get to you—they tend to fluctuate. The most important thing is that your other scans look solid. You know as well as I do that markers can spike just from a simple infection or even a bad cold.
Good luck.👍
Adam Myers22 Adam Myers22 Newcomer
4 messages
joined May 2008
#73 ·
My father is 68 and battling lung cancer that reached an inoperable stage. He’s been undergoing chemotherapy for the last 15 months, but we've hit a wall—three different types of chemo covered by Medicare have already failed him. Our last remaining option is treatment with Tarcev.
The monthly cost for Tarcev is $6.25. What’s particularly galling is that this price tag includes a $1133 sales tax, which essentially means the government is profiting off someone else's tragedy.

I’m 33 years old. Every single month, $317 is deducted from my paycheck for health insurance (that’s 15% of my gross pay)
. If I eventually face medical costs this astronomical, I can't help but think health insurance should be voluntary rather than mandatory. I’d much rather take that $317 every month and tuck it away in savings for the day when, just like my father, I might actually need to
pay for my own care.
Adam Myers22 Adam Myers22 Newcomer
4 messages
joined May 2008
#74 ·
I neglected to mention that my father spent his entire career paying into Medicare for over 30 years, only for us to reach a point where we’ll have to liquidate assets just to afford his prescriptions.
slyseal28 slyseal28 Member
11 messages
joined Mar 2007
#75 ·
Adam Myers22 said:My father is 68 years old and is battling lung cancer that wasn't operable. He’s been undergoing chemotherapy for the last 15 months. All the chemo treatments covered by Medicare have stopped working—we've tried three different types now. As a final resort, we're looking at treatment with Tarcev.
The monthly cost for Tarcev is $6.25. What’s particularly nauseating is that this price includes a sales tax of $1133, which essentially means the government is turning a profit off of people's misery.

I am 33 years old. Every single month, $317 is deducted from my paycheck for health insurance (that 15% hit to my gross salary).
If I end up needing to foot bills like these one day, then perhaps it would be more logical for health insurance to be voluntary rather than mandatory. I’d much rather take that $317 every month and save it for the day when, just like my father, I actually have to
pay for medical care.

The issue of exorbitant drug costs is a constant shadow hanging over oncology patients. An article was released today regarding an unregistered cytotoxic drug that we are currently fighting to get approved for registration.

The New York Post also published the same story.

We are expecting calls for imaging appointments in the next few days, and I will certainly bring up Tarcev during those discussions.
gentlemoose62 gentlemoose62 Active Member
105 messages
joined Jul 2008
#76 ·
Grace Fowler said:Hey everyone!!
So I'm back from my trip to New York City... and oh my gosh, I had the absolute best time ever! :-) ... But, just when things were looking up, today I went in for my routine tests before tomorrow's checkup, and well, total bummer :-( Even though my ultrasound and chest X-ray came back clean, I picked up my tumor marker results at 6:00, and that main one jumped from 29 all the way to 70... what a mess... (last time, about 2.5 months ago, it was only 29). I was absolutely livid at first, but now I've calmed down a bit... I just can't stay angry forever... I'm seeing my oncologist tomorrow to see what the plan is... Like I said, I can't stay mad for long... I hope you're all staying brave and fighting hard too.. Sending so much love to you all, and I'll check back in with updates soon...
Vasa Din

😠Does it always have to be something? Thank goodness you know how to calm yourself down quickly... and I truly believe, honey, that this resilience is exactly why you always manage to come out on top. It HAS to be this way this time too👍
Can't wait to hear your news...
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#77 ·
Adam Myers22 said:My father is 68 years old and is battling lung cancer that was inoperable. He has been undergoing chemotherapy for the last 15 months. All the chemo treatments covered by Medicare have stopped working—we've tried three different types... Now, our final option is treatment with Tarcev.
The monthly cost for Tarcev is $6.25. What is particularly repulsive is that this amount includes a sales tax of $1133, which essentially means the government is profiting from someone else's misery...

I am currently 33. Every single month, $317 is deducted from my paycheck for health insurance (about 15% of my gross salary)
. If I eventually find myself needing to cover such exorbitant medical costs, perhaps it would be more logical for health insurance to be voluntary rather than mandatory... I would much rather take that $317 every month and save it for the day when, just like my father, I am forced to
pay for my own treatment...

😠 Unfortunately, when one finds oneself in a situation where they must decide how to act to help a loved one fighting cancer, only to then encounter the sheer injustice of such astronomical treatment costs...

My mother’s treatment was incredibly expensive. Just a single day in the hospital cost $500. Had she been a citizen of a different country, the cost might have been significantly lower, but there was simply no time for bureaucratic maneuvers... Her life was saved, and that is what matters most. We all learned to live with minimal wants and needs just to afford her a few more days of life...

If I ever have to make a choice, I doubt I will continue paying such massive sums into our healthcare system, primarily due to the poor quality of care and situations like this, where "specialized" medications are priced so aggressively high...
rustyscout31 rustyscout31 Member
11 messages
joined Sep 2006
#78 ·
hiddentiger80 said:Why don't you just go ahead and run the numbers yourself right now? It really isn't that complicated if you take a moment to look at where things stand today, is it? 😵 My mom actually hit exactly 50 when she was discharged from the hospital, which is quite a change considering she was sitting at 64 just before that—so, if you do the math, she ended up losing about 14 pounds in the process! Isn't it interesting how much the body can shift during a hospital stay?
I’ve been reflecting on all of this lately, especially regarding how much weight nutrition carries in the grand scheme of things. Isn't it true that what we put in our bodies really dictates how we feel? I've been thinking that it is absolutely vital to focus on high-quality meals—loading up on plenty of fresh vegetables and lean proteins, like those thin-sliced deli meats you find at any local grocery store. 😬Does it really matter what the number on the scale says? Honestly, I've always felt that the actual weight isn't nearly as important as how you actually feel in your own skin, especially since we all know those pounds have a funny way of creeping back on us eventually anyway, don't they? 😘 And how could I ever say anything else? After all, isn't it true that nobody has ever actually died from hunger? 😘 Are you feeling alright today?

It is truly heartbreaking to think that my mother almost died from starvation, quite literally, in this day and age. How can something like that even happen in the 21st century? She was constantly vomiting, and by the time she reached the emergency room, they had her hooked up to an IV drip just to keep her stable. Isn't it strange how medical professionals can sometimes miss the most obvious things? No one even considered a problem with her small intestine; they were all focused entirely on her stomach and large intestine instead. It took so much struggle and an exhaustive search for doctors who actually knew what they were doing to finally get to the bottom of it, but we eventually discovered that there was thickening in her small intestine, which meant food simply couldn't pass through at all.
If my doctor—who also happens to be a close friend of mine—hadn't stepped in and insisted that she undergo surgery immediately, I honestly don't know if my mother would have made it through her hunger... wouldn't she have simply wasted away right before our eyes?
She’s currently sitting at around 108 pounds following her surgery and the diagnosis of jejunal adenocarcinoma. Right now, she’s relying on Ensure along with a few other supplements her oncologist prescribed to help bolster her strength and boost her immune system. Of course, we all know that the number on the scale isn't everything, but doesn't the body really need a certain level of resilience to withstand the rigors of chemotherapy? I can't help but feel like I'd be so much more at ease if we could just see her put on a little bit of weight... wouldn't that be ideal?
rustyscout31 rustyscout31 Member
11 messages
joined Sep 2006
#79 ·
shadowmason6 said:I'm sorry for going a bit off-topic here!
I feel like I might have read this somewhere else, but I don't have the time to go hunting for it right now—under any specific laws, do we actually have the right to receive copies of all the test results performed at the hospital?
The thing is, we finally made the decision and scheduled my mom's surgery at a different hospital... When she was discharged, she was only given the discharge summary—which, thankfully, had the test results and doctor's notes neatly typed in—but they didn't give us the actual original documents. The nurse just told me she couldn't... and the CT scans are especially important to me.


Nurses aren't actually authorized to hand over medical records; you really need to speak with the department head or the surgeon who handled the procedure. I looked into this myself, and they confirmed that YES, IT IS MY RIGHT to get those results, and I managed to get everything without any trouble at all. After all, isn't everyone entitled to seek a second opinion? A hospital doesn't have the right to withhold information that belongs to someone else. At the end of the day, those are the PATIENT'S records, not the hospital's property. Just go see the department head and insist on it. You have an absolute right to them.👍
Justin Davis2 Justin Davis2 Member
23 messages
joined Mar 2015
#80 ·
Hey,

Has anyone actually tried using shiitake mushrooms as some kind of support for cancer treatment?

There's breast cancer in my family, and I heard about this Dr. Jakopović guy who supposedly uses mushroom therapy, and that it’s okay.

I’d really love to hear from people who have actually gone through this firsthand if there are any, just before we decide on this route, especially since one round of treatment costs about $1167 and you need several of them....

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