Resources and support for families dealing with cancer and serious illness

Found another thread on Reddit regarding Target here.

You can definitely get this medication in America. Roche has a major presence here, located at 123 Main Street in Chicago.

If you're looking into clinical trials or wanting to participate in one, your best bet is reaching out to them directly. That said, my gut tells me the main study is likely wrapped up since the drug has been in clinical use for a while now. However, if they happen to be testing a newer iteration, there might still be a window for another candidate to step in. Usually, the kicker with those things is that you haven't undergone any other therapies yet—they need a clean slate to actually get reliable data on what they're testing.

My uncle has been diagnosed with throat cancer, but his chemotherapy isn't scheduled to start until October 31st.
He’s having a really difficult time swallowing, which has caused him to lose weight and feel quite weak. I was wondering if anyone might have some advice on how to help stimulate his appetite, make swallowing a bit easier, or perhaps find ways to bolster his immune system in the meantime. Thank you so much!

neoncyclist42 said:My uncle has throat cancer, and he isn't scheduled for chemotherapy until October 31st!?
He’s having a hard time swallowing, feeling weak, and losing weight. I want to know how to boost his appetite, make swallowing easier, and strengthen his immune system. Please, I need advice. Thank you!

The oncologist should prescribe some liquid nutritional supplements; there are plenty of varieties and flavors out there—things like Ensure, Procter & Gamble products, or even newer brands like Nestlé which worked best for my mother because she couldn't stomach the others mentioned above. These are extremely calorie-dense liquid meals that contain everything: carbohydrates, proteins, fats, fiber, vitamins, iron, soybean oil, and more. They are incredibly high in calories. I actually have two cases at home if anyone needs them. They come in 500 ml packs, and a single 500 ml serving provides 500 calories. If someone is struggling to swallow, this is an ideal solution because it is highly caloric.

When dealing with throat cancer, I’ve found that using marshmallow root tea for rinses can be quite soothing. There's also a little trick where you take the leftover plant matter from making the tea and apply it as a warm compress over the throat area—just wrap it in some plastic wrap and then cover it with a cloth. If you prefer, you could even mix it into a barley mash, which you can usually find at any local health food store. Personally, I think it works best if the marshmallow root is fresh rather than dried. To make the tea, you just soak the root in cold water overnight (I don't recall the exact ratio off the top of my head, so I'd need to double-check that), and then you can both drink it and use it as a gargle.
It might help ease the discomfort enough that he could start eating again.

I’ve been meaning to post here for quite a while now, but I kept waiting, thinking maybe things would take a turn for the better before I spoke up,😁and then I worried they might actually get worse and I wouldn't want to jinx anything.

But I read everything, and honestly, the advice shared in this thread has been such a lifesaver.👍

Mom started her fifth round of chemo today. Everything just seems to be backsliding again; after two IV bags plus the chemo itself, her weight actually ticked up by one pound, from 126 to 127. John Doe. They almost kept her overnight at the hospital, but they ended up letting her come home—which feels pretty terrifying given how old and sick she is, but hey, she’s making her own choices.🙄
Tomorrow she heads back out to the Suburban neighborhood, and I think she’ll start the oral meds on Sunday, which I’ve already gotten used to managing and knowing what to watch out for.
Right now, she’s just sitting there munching on popcorn and acting a bit wild.

I have zero control over what she eats during the day. There’s a caregiver there to cook or heat things up, and regardless of what I tell them, I have no idea what’s actually happening. It feels ridiculous to pay someone to help when Mom just ends up raiding the fridge anyway. The other day, the helper loaded some dish with way too much garlic, and Mom felt so nauseous for two days straight it was maddening. Seriously, if you're cooking for seniors and patients, you should probably have the sense not to cook like you're feeding a construction worker!😲
Then there's the fact that she specifically targets the foods she isn't supposed to have. It’s constant supervision; she won't eat on her own, and if anyone or anything annoys her during a meal, she starts rushing, stuffing her mouth like a toddler, unable to even chew, let alone swallow.
And then we have the spectacle.🙄

I know dealing with my mother is an uphill battle, but if I’m the one working and paying the bills, I expect at least a baseline level of common sense. 😠

It’s actually pretty visible—as much as you can tell—that she feels better when she sticks to healthy stuff, like plenty of veggies, grain-based soups, very little meat, and light stews without all the heavy additives. She’s paused on the Noni for a moment, but I’ve already got a new bottle ready to go.
She takes native propolis tablets, two twice a day, almost constantly; we might take a break after a bottle or two, but I really think it helps her.
Everything I give her, whether it’s occasional or part of a routine, is strictly aimed at trying to improve how she feels subjectively.

The doctor basically says she’ll either fall into that percentage of people who survive this, or she won't. And what kind of percentage are we talking about with this type of cancer? 15%?👎

As if my life wasn't tedious enough, it keeps finding ways to spice things up. We live in the same apartment building. I was heading out for a walk one evening—just my last stroll for the night—and I locked the apartment door, but hadn't turned the hallway light on yet. Out of the corner of my eye, I saw something,😱and when I turned around, there was this silhouette in a white nightgown just staring at me. I nearly screamed my head off. 😱
I didn't even realize it was her at first. And she just stood there, completely unfazed, asking, "Did you start scratching my back?" 😲
Apparently, she was just itchy from the last round of radiation.

neoncyclist42 said:My uncle has throat cancer, and they won't even start his chemo until October 31st!?
He’s having a really hard time swallowing, he's losing weight, and he's just looking weak. I'm trying to figure out how to help boost his appetite, make it easier for him to swallow things, and get his immune system up. Any advice would be appreciated. Thanks!

Right at the beginning, I was giving my mom multivitamins and a little bit of iron here and there, but as soon as she started feeling a bit better, I stopped because you can't overdo it with all those supplements either.

It might actually be more important to focus on adjusting what he eats—you know, liquid diets, purees, maybe some meal replacement shakes—and making sure everything is nutrient-dense and healthy, rather than just throwing an appetite stimulant at someone who physically can't swallow food anyway. That’s just how I’d look at it, though I suppose I could be wrong.

If you take a quick stroll over to Walmart, they carry all sorts of different supplements that aren't outrageously expensive, so you could probably pick something up there just to start with.

Linda Campbell said:Perhaps an oncologist could suggest switching to a different type of liquid nutritional supplement; there are so many varieties and flavors available now—options like Ensure, Procter & Gamble products, or even something more modern like Nestlé. My mother found that specific one much easier to tolerate when she couldn't stomach the others. It’s an incredibly nutrient-dense option that covers all the bases, providing carbohydrates, proteins, fats, fiber, vitamins, iron, and soy oil, making it quite calorie-heavy. I actually have two cases at home if anyone could use them. They come in 500 ml servings, and each one packs about 500 calories. It’s a fantastic solution for anyone struggling with swallowing who needs to maintain their caloric intake.

Could you please let me know where I might be able to pick some up?

Carol Ramirez said:For throat cancer, rinsing with marshmallow root tea might offer some relief. You could also take the leftover herbs from after brewing the tea and apply them as a warm compress over the throat—just wrap it in some plastic wrap and then a cloth. Another option is mixing it into a barley mash, which you can usually find at any local health food store. It’s actually much more effective if the marshmallow root is fresh rather than dried. To make the tea, just soak the root in cold water overnight (I'd have to double-check the exact ratio, though). You can drink the tea and use it as a gargle as well.
That should make swallowing a bit easier, which might encourage him to start eating again.

Does anyone know where I can pick up some fresh marshmallow root? Would a standard health food store carry it?

neoncyclist42 said:Could you please tell me where I can pick that up?

My mother was actually recommended that specific formula by her oncologist. I went down to the local pharmacy to place an order, and a few days later, two cases arrived at our door. I believe we overpaid by about $15. If you’re having trouble sourcing it, please send me a private message—I am more than willing to give both cases away for free.

Linda Campbell, I just sent you a private message..
I truly appreciate all the guidance you've shared. Regarding immune support, I've been looking into your previous suggestions about Noni juice and those propolis supplements; I'm hoping they might help provide some strength while navigating chemotherapy..

Melissa Kim45 said:I have been contemplating making an appearance on this platform for quite some time now, yet I have hesitated... perhaps waiting for the situation to improve before I dare speak, lest I invite any misfortune upon myself...😁 And then things take a turn for the worse, and I simply find myself unable to continue...

I am merely observing and following along... though I must admit, the advice shared within this thread has proven to be quite illuminating...👍

I find myself in much the same position...

It is quite an uncanny coincidence that my mother happened to undergo her fifth round of chemotherapy today... Unfortunately, it is... 435 miles It is still far too early to know how things stand, and since we lack the funds for a direct phone call, I will likely have to wait until tomorrow morning to find out how today unfolded... If I receive a text message stating she is on her way to Venice—since visiting that city one more time remains her greatest wish—then I will know things went well. However, if she reaches out to say she has arrived home, I will know that things have taken a turn for the worse once again...

In my view, her greatest assets are her sheer fighting spirit and the fact that she hasn't been sidelined by any side effects thus far... It is also an immense advantage to have around-the-clock care, especially considering my father actually walked away from his job just to stay by her side. If it weren't for him, I suspect she might have simply given up... I can only imagine how difficult it must be for other families to navigate the complexities of dietary restrictions and trying to figure out exactly which foods cause their parents to crash...

To everyone out there—stay brave and keep pushing forward... kisses...

To neoncyclist42:

I actually have some marshmallow root growing right in my grandmother's backyard, so I didn't bother picking any up at the store. Honestly, I’m not entirely sure if you can even find much fresh stuff in standard grocery stores these days. If you can't track down a fresh plant, you might want to try the dried version; you can usually find that sitting on the shelves at a local pharmacy. That said, it might be worth reaching out to some friends who live out in the suburbs or maybe have a little place out in the countryside—people tend to grow things like this in their gardens quite often, so I’m fairly certain someone you know could point you in the right direction.
Just a quick heads-up: make sure you're looking for black marshmallow, not the white variety. It isn't really intended to boost your appetite; rather, it's used to help make swallowing a bit easier.
And please, remember to only use the cold infusion method. You'll want to take four full teaspoons for every liter of water, or if you're making a smaller batch, just one teaspoon per 250ml. Let it sit overnight, and then in the morning, give it a gentle warm-up.

Angela Wright said:Look, I found another link on Reddit regarding Target

therapy, specifically how they might actually obtain credible results from what they're testing.

Regarding erlotinib and other similar little pills like imatinib or gefitinib...
they do have an effect, but it’s limited. Why? Because resistance develops across the entire first line due to receptor mutations. Once those drugs are administered,
meaning once they stop working, the tumor regrows via a "rebound" phenomenon.
They target EGFR—sorry, I botched the name—but they act reversibly. This is fundamentally different from antibodies, which
directly inactivate the target and then engage the complement system, and so on.

In most tumors, you see genetic heterogeneity. We're talking mutations, deletions, changes in phenotype and genotype, and massive multiplication. You don't just end up with double the chromosomes; you could be looking at 4, 8, or 47,46 times the amount because these changes are systemic.
The genome's repair mechanisms are effectively shut down by constant cell division.
So, what happens? Maybe 80% of the tumor disappears, but a mutated strain remains—one that continues to divide even faster.
Here is one site for comparison:
http://www.oncolink.com/conferences/...ss=206&id=1352

It provides a comparative application of two drugs backed by statistical data.

Ultimately, most tumors exhibit accelerated growth. They are stimulated by tyrosine kinase enzymes located beneath the cell membrane, along with their various functions.

Has anyone here actually used Maitake mushrooms alongside chemotherapy?
I’m looking for specifics: what form should I use, what dosage, and what’s the right ratio between extract and powder?
Some sources claim they work together to create a synergistic effect.
I want to buy the exact same stuff...
The website mentions some pretty incredible statistics, even citing success rates as high as 98%.
http://www.drlam.com/A3R_brief_in_do...d_immunity.htm

Christian Wood63 said:Has anyone actually used Maitake mushrooms alongside chemotherapy?
What form works best? Dosage? Should I go with extract or powder?
Some sources claim they work together perfectly.
I want to buy the exact same thing...
One website mentions great results, claiming up to 98% effectiveness...
http://www.drlam.com/A3R_brief_in_do...d_immunity.htm

Unfortunately, we don't have any high-quality Maitake supplements available here. Maitake might be slightly more effective when taken orally than Shiitake, but most actual research focuses on two specific 1,3 beta-glucans—lentinan and schizophyllan—which are used exclusively via IV as adjuvant tumor therapy in Japan.
For oral use, Coriolus versicolor seems to be the most effective. There is plenty of data on it on PubMed, so do some digging there.
I know people around here usually grab supplements from Myko san (some studies were even done on those specific products at the Isaac Newton Institute), but those are just blends of various mushroom extracts.

Olivia Ramos66 said:Unfortunately, we don't have any high-quality Maitake mushroom supplements available here in the States. While Maitake shows slightly better efficacy when taken orally compared to Shiitake, most of the heavy-duty research actually focuses on two specific 1,3 beta-glucans—lentinan and schizophyllan. In Japan, these are used exclusively via IV as an adjuvant therapy for tumors.
If you're looking at oral options, Coriolus versicolor seems to be the most effective. There is plenty of data on it on PubMed, so go ahead and do some digging.
I know most people around here tend to buy products from Myko san (some studies have even been conducted on their specific preparations at the Isaac Newton Institute), but those are mostly just blends of various mushroom extracts.

Yeah, I'm aware of Coriolus. I'll probably end up importing it from abroad.
The situation isn't any better in Canada or Mexico for finding this stuff either.
For now, we're having to source everything from overseas.

Nancy Hernandez43 said:Honestly, I think her biggest edge is just how much of a fighter she is, plus she hasn't really dealt with any major side effects yet, which is a huge win. It also helps immensely that she has 24/7 care; my dad actually gave up his job just to stay by her side, because if he wasn't there, I honestly think she might have just thrown in the towel. I can only imagine how exhausting it is for everyone else trying to explain what she can and can't eat, or which specific foods make our parents feel weak...

To everyone out there—just keep being brave. Kisses.

Has the text from Venice arrived yet? 🙂
If Dad is with her constantly, you probably don't need to worry quite as much, since he'll be the one managing all those details, like her diet and keeping her away from crowds and stuff.

I find myself getting worked up over this stuff all the time, and I just can't wrap my head around why some people—especially the younger ones who haven't really dealt with serious illness before—don't seem to grasp that you can't just drop by with takeout whenever you want; you simply have to wait.
🙄

They changed Mom's protocol; she was on PE before, but now it’s cyclophosphamide, doxorubicin, and vincristine. I don't even know what to say about it.

If I understood correctly, it's administered intravenously once a month. Her second hospital stay is scheduled for three weeks from now.
Unless I've completely misunderstood something.

Her electrolytes have stabilized since yesterday. Hopefully, she'll hold steady until the next check-up in a week.

I had to bolt to Miami for two days to sort out my nerves, but I'm still keeping an eye on this thread. At least I finally caught up on some sleep.

I need to mention that we’ve had a bad experience with digestion while using Procter & Gamble. My mom used to have perfectly regular digestion and went every single day before starting it. Once we introduced the Procter & Gamble stuff, everything just went haywire. Since she can actually handle blended food, we decided to quit it for now, and she’s been having cream of wheat with milk in the morning. Naturally, her digestion is right back to normal.👍

Greetings from Miami, where the weather is gorgeous and way too warm. I’d honestly recommend that anyone who can spare even a little bit of time to just go relax should do it—it's absolutely vital to recharge your batteries for everything else life throws at you.
😘

Hello everyone.
I read your posts daily—even if I don't chime in myself.
The situation here at home is... undefined, if I can even put it that way.
Today marks day 18 of Dad's Brezov therapy. He has lost about 20 pounds so far. He is incredibly weak—his legs just won't cooperate, so he mostly stays in bed, occasionally sitting up, and barely manages the walk to the bathroom. He says he has zero strength, which makes sense given his lack of food intake—and according to the latest tests, the cancer has become quite aggressive. He suffers from intense pain periodically, though it hits suddenly and then vanishes just as quickly. It moves all over—one moment it's his legs, then his hand, then a shoulder... He also experiences these strange stinging sensations in various parts of his body that last for a few minutes before stopping. When the pain isn't hitting him, despite being so frail, he still tries to do exercises in bed—he really is a fighter! He’s having significant bowel movements every other day, which is curious considering he isn't eating. Through all of this, he hasn't felt hungry once (?!). He struggles heavily with insomnia, too. Also, his skin has developed a very strong odor—literally. I asked people who have fasted similarly for other reasons, and they all confirmed it happens, so we aren't worried anymore; we just bathe him more frequently than usual.
Despite everything, some positive things have happened: he says his vision is much clearer, and that "brain fog" is gone. Before the therapy, his knees were killing him, but now they feel much better. All the swelling in his legs—the knees and joints—has almost entirely subsided. His face is regaining a healthy flush; the yellowness and grayness are fading day by day (his face was quite literally a grayish-yellow color). Even his eyes look brighter.
We pray every single day for his success and find joy in every small improvement.
I will update you with more results.
Stay strong, and don't give up, just as you haven't until now... sending love to you all!

northernfox9 said:Hey everyone.
I read through these threads every single day, even if I don't chime in much.
Things here in the States are hard to pin down right now, if I can put it that way.
Today marks day 18 of Dad's Brezhnev therapy. He’s dropped about 22 pounds so far. He's incredibly weak—his legs just won't cooperate, so he spends most of his time in bed, sitting up occasionally, and barely managing the trek to the bathroom. He says he has zero energy, which makes sense given he isn't eating anything, especially since his latest scans show the cancer has become aggressive again. He deals with intense bouts of pain periodically, but they tend to flare up and then vanish just as suddenly. They hit different spots too—one minute it's his leg, then his hand, then his shoulder... He also gets these weird sensations where parts of his body feel numb, lasting a few minutes before fading away. When the pain isn't hitting him, despite being exhausted, he still tries to do exercises in bed (he's a fighter!). He's having heavy bowel movements every other day, which is interesting considering he isn't taking in any food. Through all this, he hasn't felt hungry once (?!). Insomnia is also a major struggle. On top of that, there's a really strong odor coming from his skin, quite literally. I asked around with people who have done similar fasts for other reasons, and everyone confirmed this happens, so we aren't stressing over it anymore; we just make sure he bathes more frequently than usual.
Despite all that, some positive things are happening: he says his vision is much clearer, and that the "brain fog" has finally lifted. Before starting the therapy, his knees were killing him, but now that pain has subsided. All the swelling in his legs (knees and ankles) has almost completely gone down. His face is actually regaining a healthy flush; that sickly yellow-gray tint is fading day by day (his complexion was honestly gray-yellow before). Even his eyes look brighter.
We're praying every day for success and celebrating every tiny win.
I'll update you when we have more results.
Hang in there, and don't give up, just like you haven't until now... sending love!

It all manifests this way because the body is purging the cancer and toxins—essentially burning them out.
He just needs to persevere.👍