Support resources for families dealing with cancer and other serious illnesses

Look, we all speak the same language here. We get it. Everyone goes through those stretches where you feel like absolute garbage, totally hopeless, followed by those days where you finally find your spark again and feel like you can take on the world...
But honestly? The main thing is this: we don't quit. Period.

As for the Metformin, my husband was on that about two years ago when he completely lost his appetite. He went through two bottles of the stuff and started eating like a beast. Everything tasted amazing to him, and he actually put some weight back on..
Now, his weight has tanked again, so he tried starting the Metformin back up, but by the second day, he had such bad diarrhea.. Maybe it wasn't even the Metformin, but he's done with it. I have no clue what else to give him to get him to eat.

Maria Lee54 said:I have no intention of giving up, nor will I surrender, regardless of how insurmountable the obstacles may seem, though describing the sheer weight of this struggle feels almost impossible... this period of waiting, stretching beyond a year now, has been nothing short of agonizing. In due course, I shall share my story, which is far from pleasant, as it concerns the injustices I have endured since the very onset of my treatment, and if I can say anything at all, it is that I am a resilient individual possessing an immense amount of patience and tolerance. The lack of support within my own home is deeply felt, yet I have established plans that I am determined to see through, and guided by those ambitions, I shall continue to press forward bravely... thank you for your kind wishes, which I extend back to you all on your respective paths toward recovery.

Based on what you have written here, as well as everything I have read thus far and experienced personally—one must unfortunately face the reality that there is simply not enough understanding or assistance available when one is facing such severe illness. It is precisely because of this that you must demonstrate your ability to handle so much on your own, and you will succeed in doing so...

When I reflect upon the closed doors we encountered and everything we endured, how the waiting consumed us from within, and the thorns and judgment we faced while grappling with our illness... there is only one distinction—we had each other. It pains me that your situation is not the same, as it truly helps to receive a sincere embrace and to see, even if only for a fleeting moment, a look of recognition in the eyes of those closest to you.

DO NOT GIVE UP! DO NOT GIVE UP! Show everyone just how beautifully you will spread your wings and soar! Puses

Lisa White54 said:We can actually find some common ground here, a sense of mutual understanding. We all endure those fluctuations—those days when we feel utterly depleted and hopeless, contrasted by moments where our strength and resolve suddenly return...
But the essential takeaway remains this: we simply refuse to give up.

Regarding the Metformin, my husband took it about two years ago when his appetite completely vanished. He went through two bottles and started eating like he hadn't seen food in weeks. Everything tasted wonderful to him, and he even put on some weight...
Now, his weight has dropped again, so he resumed the Metformin, but by the second day, he was dealing with such severe diarrhea... It might not even be the Metformin, but he certainly has no desire to take it anymore. I am at a loss as to what else I might offer him to stimulate his appetite.

Unfortunately, unless you have walked this path yourself, it is impossible to grasp the sheer terror and the sudden, overwhelming relief that can arrive within a single day based on one piece of news.

I am unsure what to suggest for my wife's appetite. My mother never used Metformin; instead, her father just had to endure her making terrible, burnt soups whenever she went through these phases. Fortunately, things are stable now since she eats whatever she fancies; she has lost some volume, and while her weight fluctuates by about three pounds either way, there isn't much cause for alarm...

Nancy Hernandez43 said:As long as you can maintain a consistent eating schedule, that’s generally a positive sign. Though, I have to say, I can only imagine how frustrating it feels when you're actually craving something specific and you just aren't allowed to have it!

To be honest, I rarely even feel the urge to eat anything at all lately, so food doesn't really feel like some kind of overwhelming pressure or a constant demand on my time. It’s been months since I’ve had even the slightest craving for something like Nutella pancakes...😁

Nancy Hernandez43 said:My oncologist was incredibly adamant about using Beta-glucan to bolster my immune system, and after digging around online, I’ve found plenty of testimonials suggesting it really does work. Honestly, even just taking a single capsule a day could make a difference, so please, be sure to give it a try. I know it’s a bit of a hit to the wallet—we ended up paying quite a bit for ours too. $233 I think I caught a glimpse of something out of the corner of my eye while I was browsing at a local CVS, or maybe it was a pharmacy near the downtown clinic—it’s all a bit of a blur—but I’m fairly certain I saw some kind of medication being stocked that I haven't come across before. $157Look, I’m not going to sit here and claim I know more than what I've already said—that it helps. I am certainly not making any assertions that we are looking at identical dosages here, especially considering the other product comes at a much lower price point.

I was just looking around town to see what the damage would be if I wanted to pick up some Glucan, and honestly, even the cheapest option in my city is still costing me an absolute fortune. It’s getting ridiculous. $210It’s that one bottle containing 60 capsules. And those ones from... $157 Which ones are you talking about? Usually, those with the brown label tend to be the smaller packs—like the 30-capsule bottles.

My mother was mentioning some medication to me today. She claims it’s quite effective, but goodness, it sounds incredibly expensive.
($16000...but she couldn't quite recall the name.
Does anyone actually have any idea what’s going on here?

Nancy Hernandez43 said:Based on what you wrote—and honestly, based on everything I’ve read here and experienced firsthand—it’s a harsh reality we have to face: there just isn't enough empathy or support available when you're facing an illness this severe. That’s exactly why you have to prove to yourself that you can shoulder so much on your own; eventually, you'll find the strength to succeed through it all.

I've noticed a recurring pattern whenever I get hit with bad news—like hearing about a recurrence, for instance—where certain people just "bolt." They hide behind these polite excuses about not wanting to "burden" me. 🙄
But those are precisely the moments when I crave company most, just to keep my mind from spiraling into the situation at hand. Instead, many people feel awkward or uncomfortable, leaving me feeling incredibly isolated during my darkest hours.
Fortunately, I have a few close friends who stay by my side consistently.
They've managed to outlive me by at least three times over. 😁

feralridge3-I totally get you. I know exactly what it feels like when people start avoiding you just because they don't want to be "bothered." It’s funny how they pull away right when you actually need someone to talk to, just to take your mind off things. Honestly, I feel pretty alone too. If I could just walk out my front door without having to rely on someone else, life would be so much easier. I can count my true friends on one hand, and I'm incredibly grateful for them and their understanding. But yeah, there have been people who helped me out, only to turn around and criticize me for it. All I said was, I wouldn't wish this experience on anyone, and I prayed to God that everyone stays healthy forever.

"...my mom mentioned a medication today. She says it's quite effective, but for God's sake, it's incredibly expensive
($16000), though she couldn't recall the actual name.
Does anyone have any idea what she's talking about?"

That outrageously pricey drug is most likely Sutent. You might want to reach out to Wunderkind; she posted on this forum a while back. Her father went through six boxes of it for renal cancer with lung metastases, and if I recall correctly, she offered up half a box to anyone who might need it. She’ll be your best bet for understanding what that specific drug is used for. From what we've been hearing lately, it's on the list of medications covered by Medicare for kidney cancer. Hang in there.🙂

feralridge3 said:I rarely find myself actually wanting to eat anything lately, so food doesn't really feel like a necessity to me anymore... I haven't even had a craving for Nutella pancakes in months...😁

The cheapest Glucan I can find in my area goes for $210. That’s for the 60-capsule bottle. Those ones you mentioned with the $157 brown label are likely just the smaller 30-count packs...

Today my mother brought up some medication, claiming it's quite effective but incredibly expensive,
($16000), though she couldn't quite recall the specific name...
Does anyone happen to know what she might be referring to?

My mother craves Nutella pancakes like a hungry teenager, and we don't try to stop her. I'd say she eats them in waves, because once she develops a fixation on something, that's all she wants to eat...👍
As for the Glucan, I can't say for sure—I've only caught glimpses of the prices at the local pharmacy. Regarding that medication you mentioned, I think I saw a mention of it in WebMD, but I can't remember the name or if the price was actually that high...

feralridge3 said:I’ve noticed that whenever I receive bad news—like hearing about a relapse, for instance—certain people tend to suddenly "bolt," using the convenient excuse that they don't want to be a burden...🙄
yet those are precisely the moments when I find myself craving companionship just to distract my mind from the reality of the situation, but many seem too uncomfortable or awkward to stay, leaving me feeling most alone during my hardest hours...
I do have a few friends who remain steadfastly by my side...
though they'll likely outlive me three times over...😁

My father would probably remark that people either lack the basic social grace to handle these things or simply hide behind a mask of "not wanting to intrude"... and honestly, it has been that way since day one, regardless of whether we are talking about the patient or the healthy family members... It’s funny how illness acts as a filter, finally revealing who our true friends are—those willing to lend a hand without hesitation or fear...

My mother is fortunate enough to have a hobby that keeps her engaged at least once a week... she spends quite a bit of time sketching, which helps immensely in preventing her from getting stuck in a constant loop of negative thoughts...

Maria Lee54 said:feralridge3-I understand you completely, and I know exactly what it feels like when people in your circle start avoiding you under the guise of not wanting to be a burden, when all you actually want is a bit of conversation to distract you from these difficult moments for even a second, so I find myself quite alone as well. If I could just step out of the house without being dependent on someone else, life would feel significantly easier... I can count my truly sincere friends on one hand, and I am endlessly grateful to them for their help and their understanding. Unfortunately, there have also been those who helped me, only to turn around and criticize me for it. All I said was that I hope God never lets anyone else experience what this is like, and I prayed for everyone, that they might remain healthy forever...

It seems we are all navigating similar paths. But such is life—we learn to take new steps, even if we have to walk them alone...

Maria Lee54 said:feralridge3: I completely understand where you're coming from. I know exactly what it feels like when people in your own circle start avoiding you under the pretext that they "don't want to be a burden," when in reality, those are the very moments you crave conversation just to distract yourself from these grueling times. Honestly, I feel just as isolated. If I could just step out of my house without being entirely dependent on someone else, things would be so much easier... I can count my true, sincere friends on one hand, and I am endlessly grateful to them for their help and understanding. Unfortunately, there have also been those who helped me only to turn around and criticize me for it. All I said was, may God forbid anyone ever has to experience what this is like, and I prayed for everyone to stay healthy forever.

The absolute worst part is running into someone in town and watching them visibly change direction just to avoid passing me. It’s not like I’m contagious. 😁
It is quite interesting how nobody "wants to be a bother." There are times when even I don't want anyone near me, but I've noticed that when persistent friends force a social interaction upon me, my mood improves remarkably fast.
I often tell people to push through my moods and insist on hanging out regardless, because human contact is vital. I even tell them to just show up at my door unannounced so I don't end up turning them away. 🙄
Being dependent on others is a miserable state to be in. I felt such a massive boost when I managed to return to a somewhat normal life, which is why this relapse is hitting me so hard right now. I'm trying not to dwell on what lies ahead. Sometimes, it feels like ignorance truly is bliss.
Maria Lee54 — Send me a private message and let me know which city you're in.
You never know; we might live close enough that I could keep you company.

Nancy Hernandez43 said:My mother goes absolutely overboard with Nutella pancakes, like she's trying to set a world record. 👍 It’s just how she is; she has her cravings, and we aren't about to stand in her way. I'd say she goes through these intense phases where if she finds something she likes, that’s all she eats for days on end.

That is exactly my kind of person. 😍
One of these days, I will make up for this incredibly long-winded post. 🙂

Nancy Hernandez43 said:My father would probably say that people either have no clue how to act or they put on this fake persona because they’re terrified of being a nuisance. It’s been that way from day one, regardless of what stage we're in—whether it's my mother dealing with her illness or those of us who are healthy. Honestly, this sickness was the only thing that truly sorted out our circle; it showed us who our real friends are, the ones willing to lend a hand without any hesitation or awkwardness.

My mother is lucky enough to have a hobby that keeps her motivated at least once a week... she does a lot of sketching, and it really helps her stay out of her own head for a bit.

People truly lack basic social graces in situations like this.
We really ought to publish a handbook on etiquette for crises. 🤷
The worst part is when I run into someone in town and they start making these pathetic excuses about why they haven't reached out since I was admitted to the hospital. Then, the moment we part ways, I can practically feel them sighing in relief. 😢 These kinds of interactions drive me to actively avoid certain people—those I'm almost certain will make any encounter with me feel forced, clumsy, and just plain uncomfortable. 😢

Susan Ruiz76 said:That incredibly expensive medication is most likely Sutten, but you should try reaching out to Wunderkind. She actually posted on this forum a few days ago.

Thanks! I'm going to head out and track that down now.

Found it.
It states that it's used in the treatment of kidney cancer.

I did a little digging on Google

Sutten is used for treating kidney cancer, while
Tarceva is for lung cancer treatment.

Both of these drugs have been added to the Medicare list for high-cost medications.

Given that my failing organ is worth about a dime (is it actually a dime? I can't quite recall, and who was it that said that?), and since it clearly isn't valued much anyway, I'm certainly not expecting access to something like these two treatments.😍

feralridge3 said:People truly lack even the most basic sense of decorum in these circumstances...
one ought to draft a manual on social etiquette. 🤷
I find it quite taxing when I run into someone in town who feels compelled to offer some clumsy apology for failing to check in since my hospital stay... and then, once we part ways, I get the distinct impression they are simply relieved to be rid of me. 😢 Such interactions lead me to preemptively avoid certain individuals, as I can sense with near certainty that an encounter would be nothing short of awkward...😢

I suspect mothers face similar social pressures. However, since they aren't usually out in public seeking such validation, they might instead deal with those unsolicited comments like, "Oh, I haven't seen you in ages! You look wonderful—have you lost weight?" which, I suppose, can actually be perceived as a compliment...

I’ve actually got some decent news for everyone here... I finally tracked down this specific juice right here in the States, made from mangosteen and packed with antioxidants 🙂 my mom has been drinking it lately and honestly, she's feeling so much better

lonescout21 said:I have some wonderful news for everyone here... a certain juice has hit the market in America, made from mangosteen and packed with antioxidants 🙂 my mother has been drinking it and she's feeling significantly better

Please provide us with more specifics. 😉
What exactly was your mother suffering from? After taking this, does the issue vanish entirely or just lessen?
What is the name of the juice?
How much is a serving, and what's the price point?
Where can one actually purchase it?
Don't be stingy; share the knowledge with the community. 😁

feralridge3 As stated by:
I would appreciate it if you could provide us with a bit more data... 😉
My mother has been struggling with... but since she started consuming this, all those issues have completely vanished... she doesn't feel any of it anymore...
The juice is called...
The total amount required to cover... the cost would be...
It is possible to purchase...
Don't be so stingy; do share what you know... 😁

I find myself harboring a certain intuition, one that I hold to be quite deeply felt, that if we are already going to consume juices loaded with massive doses of antioxidants, it would be significantly healthier and of much higher quality to simply craft our own blends using fresh fruit and vegetables in a juicer at home...

I did a quick Google search... the first link that popped up was this one:

I find myself once again contemplating the sheer absurdity of our current trajectory, much like observing a slow-motion train wreck from a very comfortable distance... It seems we are all quite content to drift aimlessly, pretending that the cracks in the foundation aren't widening by the day. I was reading some rather pointed commentary earlier—much like the observations shared by feralridge3—and it struck me how little has actually changed despite all the noise we make about progress. We talk about systemic shifts as if they are inevitable, yet we cling to the old ways with a tenacity that borders on the pathological... Perhaps we simply enjoy the chaos, or perhaps we are just too tired to care anymore. One can only wonder how long this charade can be maintained before the reality of our situation finally catches up with us...

Or this one...

The pursuit of optimal wellness often feels like navigating a labyrinth without a map, yet certain formulations attempt to provide that much-needed compass... Zenthonic presents itself as such a guide, aiming to harmonize the body's internal rhythms through a sophisticated blend of nutrients designed to support cognitive clarity and physical vitality. It is an ambitious proposition, suggesting that by addressing specific micronutrient deficiencies, one might unlock a more resilient version of themselves... The composition focuses on bridging the gaps left by modern dietary habits, utilizing a curated selection of vitamins and minerals intended to bolster the nervous system and metabolic efficiency. While the marketing promises a seamless integration of health and performance, the true value lies in how these components interact with one's unique biological landscape... One wonders if such a comprehensive approach can truly mitigate the stressors of contemporary American life, or if it is merely another elegant solution to a much more complex problem...

So, it seems the primary impact is directed toward the immune system...

My mother prepares a juice consisting of beet, orange, carrot, and occasionally broccoli, apple, and whatever lime she might have on hand almost every single morning. This serves as her breakfast on certain days, given that she doesn't possess the habit of eating immediately upon waking, preferring to wait a few hours before her first meal...

Nancy Hernandez43 said:I have this gut feeling—and I truly believe—that if you're going to bother drinking juices loaded with antioxidants anyway, it's infinitely healthier and much higher quality to just make your own from scratch using fresh fruits and vegetables in a juicer!
.

I’ve heard that mixing beets, apples, and lemon is a fantastic combo.
I haven't actually tried it yet, though. I need to go out and pick up a juicer first.