Support resources for families dealing with cancer and other serious illnesses

Hey everyone.
My mom is battling chronic lymphocytic leukemia, or CLL.
She’s been living with this diagnosis for about two years now—maybe longer, actually—but we didn't catch it sooner because she wasn't showing any symptoms.
Ever since I found out what she was dealing with last year, I've basically gone down every rabbit hole imaginable, trying to learn everything there is to know so I can help her somehow.

The cold, hard truth is that there isn't a cure, and even her hematologist told me straight up that we're looking at a predictable outcome.

It’s been an endless cycle of blood work, waiting for CT scans, and for the last seven months, we've been paying out of pocket for various treatments—some one-day clinic visits, others just managing things with antibiotics at home.
Since the treatments have had to escalate, we reached a point where she really should have been hospitalized, but she flat-out refused. She’s super active naturally and just can't stand being cooped up; she needs people, loves to chat, likes to walk around, and honestly, she felt okay enough that I didn't want to force her into a hospital bed. It just didn't feel right.

We haven't gone anywhere since the spring—no tests, nothing. Things seemed fine, but deep down, I knew the lymph nodes would eventually start swelling and things would take a turn for the worse because there's no fix for this.

Two days ago, early in the morning, she told me her abdomen was hurting and she wasn't feeling well. She said she'd agree to go to the hospital, but only "once it cools down a bit."
I can see things are getting bad, but I'm just lost on how to help.
I hate seeing her suffer like this, but I have to work, and there's nobody else to lean on but me.

Honestly, this whole situation is slowly killing me too. I can't find a way out. I need to be by her side, but I also have to make a living, and juggling both is draining every ounce of my energy, not to mention the massive financial hit.

Does anyone here have experience with this? Is there any kind of alternative to at least make her more comfortable, or maybe some advice on how to cope with it all? This disease drags on forever and just exhausts everyone around it.

Any kind of help or even just a tip on how to make this whole mess a little easier to bear would mean a lot.

Just a quick question regarding immunity: is it okay for someone who recently had their stomach removed—along with about 4 inches of the esophagus—to take native propolis? Or is there something else you'd suggest instead...

thanks

Ashley Grant86 said:Hello everyone.
My mother is suffering from chronic lymphocytic leukemia, or CLL.
She’s been living with this diagnosis for two years now—maybe longer, honestly, because there were absolutely no symptoms initially.
Ever since I found out what she was actually fighting last year, I have thrown myself into researching every single detail and searching for any possible way to help her.

The harsh reality is that there is no cure, a fact her hematologist stated quite bluntly to my face.

We have spent countless hours doing blood work and waiting on CT scans, and for the last seven months, we've even turned to private clinics for various treatments, ranging from one-day sessions to home-based antibiotic regimens.
As the treatments had to be intensified, we reached a stage where hospitalization was necessary, but she refused; she is naturally active and simply cannot stand being isolated from people—she loves to talk and walk, and since she felt somewhat better, I told her I wouldn't force her, as it didn't feel right to push her.

Since this spring, we haven't gone anywhere—no tests, nothing—because things seemed stable, but deep down, I knew the lymph nodes would eventually start swelling again and things would take a turn for the worse because there is no cure.

Two days ago, in the early morning, she told me she was having abdominal pain and wasn't feeling well; she finally agreed to go to the hospital, but then she hesitated, saying she'd go once the weather cooled down a bit.
I can see how bad this is getting, but I am at a loss for how to help.
I hate seeing her suffer, but I have to work, and I have no one else to rely on but myself.

This illness is slowly killing me too, because I can't find an escape; I need to be by her side, yet I have to maintain my job, and managing all of this simultaneously is draining my energy and my finances to the absolute limit.

Does anyone here have experience with this? Is there some kind of alternative that could at least ease her discomfort, or perhaps some advice on how to endure this, given that the disease is so prolonged and utterly exhausting for everyone involved?

Any form of assistance or even just a word of advice to make this whole ordeal more bearable would be deeply appreciated.

I am truly sorry to hear about what you're going through, and I understand your struggle because my own family has been battling similar issues for months. I know how expensive and draining it all becomes, but you have to keep fighting. Try to bolster her immune system with natural things like beet, carrot, and lemon juice. Make sure she eats plenty of fruits and vegetables... berries and citrus are best, along with green vegetables and tomatoes. Don't lose hope, because leukemia can be managed effectively; the road is long and incredibly bumpy, but it is worth the effort. Another piece of advice from me: do not abandon the doctors; even if you explore alternatives, listen to them. They might not say much, but I believe their guidance is something you must follow. Hang in there, and please take care of yourself and your mother.

I suppose I should provide an update on our situation as well... My father-in-law is actually feeling quite good; he isn't dealing with nausea, pain, or insomnia, yet we are still stuck grappling with his lack of appetite. He truly tries, but he simply cannot swallow solid food—it’s not that swallowing hurts, it’s just that the food refuses to go down. He manages about ten spoonfuls of something solid a day, but he compensates by drinking plenty of beet, carrot, lemon, apple, and grapefruit juice; he also drinks Noni, orange and lemon lemonade, and royal jelly (which seems to agree with him best, though I worry he might be overdoing it). On top of all that, he’s taking Propolis, Glucan, Selenium, Lana oil, and a handful of vitamins and minerals including iron and iodine. As of yesterday, we started giving him one glass of liquid nutrition daily because we are terrified he’ll lose weight. When I look at the big picture, things don't seem entirely bleak since he's getting everything his body needs, but without solid food, his stools are strictly liquid, which is clearly bothering him. 😢 I read somewhere about a specific syrup that can only be prescribed by a medical board, and apparently, it works wonders for stimulating appetite. It is typically prescribed to people suffering from anorexia or those battling these kinds of devastating illnesses and side effects. If anyone here knows anything about this, please let me know, because we absolutely have to take action regarding this issue... our patient looks remarkably thin despite appearing otherwise healthy, especially now that he’s only 67 kg at a height of 1.82 meters.

Kate Brooks2 said:Man, I am so incredibly sorry about what you’re going through. Honestly, I get it—we’ve been fighting this exact same battle for months now. I know how insanely expensive and just plain exhausting everything is, but you’ve gotta keep swinging. Try boosting the immune system with natural stuff, like beet, carrot, and lemon juice. Make sure they eat plenty of fruits and veggies... berries and citrus are best, and for veggies, stick to anything green plus tomatoes. Don't lose hope because leukemia can be treated successfully; the road is long and bumpy as hell, but it's worth the fight. One more thing from me: don't ditch the doctors. Even if you're looking into alternative options, listen to them. They don't always say much, but I really think you need to follow their lead. Hang in there and take care of yourself and your mom.

Thanks for the support and the kind words... you're totally right about everything, but this specific type of leukemia is basically incurable because there are just way too many different subtypes out there. My doctor told me the average life expectancy with this particular strain is only about 6 to 10 years.

Ashley Grant86 said:Hey everyone.
My mother is suffering from chronic lymphocytic leukemia, or CLL.
She’s been living with this diagnosis for two years now—maybe even longer, but we didn't know because there weren't any symptoms.
Ever since I found out what she was actually dealing with last year, I've thrown myself into everything I could find, trying to learn every detail and help her in any way possible...

The brutal reality is that there isn't a cure, and even her hematologist told me straight up that the outcome is already known.

It's been endless blood tests and waiting around for CT scans. For seven months last year, we were doing various treatments privately—either one-day outpatient stuff or home-based rounds with antibiotics...
As the treatments intensified, we hit a stage where she really needed to be hospitalized. But she refused. She’s incredibly active by nature; she can't stand being isolated. She loves talking to people, walking around, and she felt "good enough" to stay home. So, I told her fine, I won't force her, because I didn't think it would be right to push her like that.

We haven't gone anywhere since the spring—no tests, nothing. Things seemed okay, but deep down, I knew that eventually, those lymph nodes would start swelling again and things would take a turn for the worse because there's no cure.

Two days ago, in the middle of the night, she told me she was having abdominal pain. She doesn't feel well and is finally agreeing to go to the hospital, but she keeps saying "just a little longer until it cools down."
I can see things are going downhill, but I honestly don't know how to help.
I hate seeing her suffer, but I have to work, and I'm completely on my own here.

This disease is slowly killing me too. I can't find an exit strategy. I need to be by her side, yet I have to work, and managing both is draining every ounce of energy and money I have, not to mention everything else.

Does anyone here have experience with this? Is there any alternative to at least make her comfortable, or any advice on how to endure all this? This illness drags on forever and just exhausts everyone around it.

Any kind of help or advice to ease the burden would mean the world.

I agree with everything Kate Brooks2 said; I don't have much to add there. Does your mother have pain throughout her entire abdomen, or is it localized to the upper or lower part? Has she had any bowel movements, and if so, what color were they? How is her appetite? Any other abdominal issues?

vividsailor7 said:I’m pretty much on the same page as Kate Brooks2 here; I don't really have anything else to add. Is she feeling pain all over her abdomen, or just the upper or lower part? Has she had any bowel movements, and what color were they? How’s her appetite? Any other stomach issues popping up?

It's the lower abdomen that hurts, and she’s coughing constantly—just hacking up some kind of mucus.

She’s got swollen lymph nodes inside her abdomen, around her neck, and under her armpits... maybe something like 25x35mm, if I recall correctly.
They actually shrunk back down after some antibiotics and a one-day treatment session, and her white blood cell count dropped from 93 down to 14. But since she stopped everything, it’s all coming back.
Honestly, though, trying to convince her to go to the hospital is a nightmare. She’s way too active, always moving around, so she Kazo that being stuck in a hospital would basically kill her right then and there.
She’s been on Leukeran so far, plus those one-day treatments. The white blood cell count improved, but there hasn't been any significant shrinking happening inside the abdomen.

Ashley Grant86 said:She’s dealing with lower abdominal pain and a constant cough—just hacking up phlegm non-stop.

She has swollen lymph nodes in her abdomen, her neck, and under her armpits, maybe around 25x35mm.
They actually receded after she finished a round of antibiotics and some one-day treatment, and her white blood cell count dropped from 93 down to 14. But the second she stops treatment, everything comes rushing back.
The problem is, it's nearly impossible to convince her to go to the hospital. She’s constantly active, always moving, and she insists that being stuck in a hospital bed would just kill her immediately.

Does anyone know of any herbal teas or alternative remedies that might at least provide some relief?

Regarding tea, you could try chamomile or spearmint. Also, is she experiencing chest pains? What color is the sputum she's coughing up? Is there any nausea or vomiting? What does her stool look like? How is her appetite? Any changes in urination? Look, I’m speaking from experience here—both professionally and personally—I know how stubborn oncology patients can be. But since her condition seemed to stabilize while she was on Thalidomide (at least clinically, though you didn't specify how she felt subjectively), you need to sit her down and calmly explain that this is for her own good.

vividsailor7 said:Regarding tea, maybe try some chamomile or lemon balm. Also, is she having any chest pains? What color is her phlegm or cough? Any nausea or vomiting? How's her stool looking? Her appetite? Urination? Look, I'm speaking from experience at work, but honestly, even just from family, I know how stubborn oncology patients can be. Since she seemed to be doing better while on Thalidomide—well, clinically speaking, since you didn't mention her subjective feeling—you really need to sit her down and calmly explain that this is all for her own good.

The pain isn't constant; it mostly hits at night for now. Hard to say about the chest because she hasn't really complained, but sometimes when it hurts, she just won't say anything unless it gets intense. Sputum is white, kind of whitish. Stool, appetite, and urination are all normal. She’s been sweating, though—her doctor mentioned the frequent sweating is definitely a symptom.
I checked her blood sugar yesterday and it was 7.5. It used to be 10 or 12, but that was mostly due to the therapy.
She was feeling fine up until now, but things are changing because I'm seeing changes in her neck, and we haven't even done the new tests yet.

It's such a struggle explaining stuff to older folks. As soon as they feel even slightly okay, they think everything's perfect and refuse to go to the hospital or do anything. And unfortunately, by then, it's always too late.
The main thing is just making sure there's no pain, at least in my book. I asked about alternative stuff, and apparently, there's nothing out there besides actual medicine.

Ashley Grant86 said:The pain isn't constant; right now, it mostly hits her at night. I can't say anything definitive about the joints since there hasn't been any swelling yet, but sometimes even when it hurts, she won't admit it unless it gets really intense. Her sputum is white. Her bowel movements, appetite, and urination are all normal. She’s experiencing sweating, and the doctor mentioned that frequent sweating is a symptom.
I checked her blood sugar yesterday and it was 7.5; previously it was up at 10 or 12, but that was due to the medication therapy.
She’s felt fine until now, but things are changing because I can see changes in her neck area, and we haven't done the new tests yet.

It’s incredibly hard to explain things to the elderly. As soon as they feel okay for an hour, they think everything is perfect and refuse to go to the hospital or do anything. Unfortunately, by then, it's always too late.
The main thing is that there's no pain—at least in my book—because when I asked her, she said she’s using some alternative stuff and claims there's no need for actual medicine.

Blood sugar can definitely spike from Thalidomide. However, I highly recommend that when you get those new labs done, you also get an A1C tested (the 3-month average) just to be safe. For an alternative, I suggest lemon balm tea; it helps me. I assume she doesn't have a fever. As for explaining things to older folks... man, I don't even know how to tell you—I deal with that every single day, both at work and at home. I will also advise you to contact her primary care physician, if you haven't already, because they are ultimately responsible for her care. Her doctor knows her condition much better than I ever could, and from here, I can only speculate on what the issue might be. I'm wishing you all the best and hoping everything turns out as well as possible.👍

Ashley Grant86... I honestly have little patience for these kinds of prognoses because a true expert would never hand them out so freely. I personally know people who were given nothing more than a month to live, yet they’ve managed to stick around for years. Everything is entirely subjective and depends on the individual, and from everything you've told me, your mother sounds incredibly resilient. You should take comfort in the fact that she still has an appetite and stays mobile; try your best to persuade her toward therapy—if not for longevity, then at least to improve her quality of life. Stay strong and keep drawing strength for whatever tomorrow brings. 🙂 Best regards P. S. Joy Celebrate those small victories just like I am right now 🙂))))))) My brother-in-law just polished off an entire bowl of potato, onion, and carrot soup topped with ground flaxseeds 🙂)))))))))) Hooray 🙂We keep fighting and we aren't backing down (my husband and I make a hell of a team)

Kate Brooks2 said:I read somewhere about this specific syrup that can only be prescribed by a medical board, and apparently, it works wonders for stimulating appetite. It’s mostly given to people struggling with anorexia or those battling these harsh diseases and their side effects. If anyone knows anything about it, please let me know because we really need to find a way to address this... our patient looks quite thin despite being generally healthy, especially now that he's down to 67 kg at 1.82 meters tall.

I assume what you're talking about is Megostat.
I don't recall the exact process, but usually, the oncologist includes it in the clinical findings, and then based on those instructions, a primary care physician writes the prescription.

I'm really crossing my fingers that his appetite improves!

Kate Brooks2 said:Ashley Grant86... honestly, I’m not a fan of those prognostications because actual experts never really give them. I know people who were basically given a month to live, yet they're still kicking years later. It’s all just so individual, you know? From what you're telling me, your mom sounds like a real fighter. Just be grateful she's eating and staying mobile, and maybe try to nudge her toward therapy—if nothing else, just for the sake of her quality of life. Hang in there and find some strength for whatever tomorrow brings. 🙂 Best regards P. S. Joy celebrate the tiny wins, just like I am right now 🙂))))))) My brother-in-law just polished off a whole bowl of potato, onion, carrot, and ground Lana seed soup 🙂)))))))))) Hooray 🙂We just keep fighting and refuse to back down (my husband and I make a killer team)

Morning, regards Lili. Five o'clock. I'm totally with you on everything you said..
Don't want to sound like I'm being a total downer by saying I'm not, but yeah, sometimes things just suck.
There's always someone who thinks they know better, so advice is never a bad thing.
Thanks, and best regards.🙂

Today has been an absolutely wonderful day 🙂 My brother-in-law ate a massive amount today, which has left us all feeling incredibly happy and upbeat. We spent the day out and about, and by the time we returned home, everything was perfectly prepared and looking flawless. It’s exactly how things should be. This kind of day truly gives us the strength to keep pushing forward. I know the road ahead is bumpy, but you just have to keep grinding through it. Sending my best regards and big hugs to everyone... I honestly feel so joyful right now I could hug the entire world 🙂)))))Hooray

Kate Brooks2 said:Today has been such a beautiful day. 🙂 My brother-in-law ate sooooo much today, and we’re all just so happy and upbeat because of it. We were out and about all day, and by the time we got back, everything was cleaned up and set perfectly. Today really gave us the strength to keep going. I know the road ahead is rough, but you just have to keep pushing through. Sending hugs and best regards to everyone... I'm feeling so joyful I could hug the whole world 🙂)))))Hooray

Hooray! 🙂 🙂
Kudos to you for your endurance and patience 👋
And of course, kudos to him too 👋 👋
He probably just needed a little time to rest and recharge..

I'm so glad to hear this, I hope it stays this way 🙂 🙂

LINK

Elizabeth Perez33, thanks for being in this fight right alongside us 🙂
Everything is looking solid today, and we’re holding onto the hope that this momentum keeps building. His hair has started thinning out, but honestly, neither of us cares one bit—if anything, he’s actually relieved because it means he can finally ditch the razor and skip the beard trims altogether. For all intents and purposes, everything is a perfect 5 🙂 Best regards to everyone, and a massive, heartfelt thank you to Angela Wright for starting this thread. It truly means the world to me to know that when I speak up, I have actual support and can connect with people who are dealing with the exact same struggles. I can't thank you enough; hope you all have a wonderful day

We’re currently standing by for the bloodwork results to see if there’s any actual improvement. We are holding out hope and praying for a positive outcome.

Angela Wright said:If you look on MEDLINE—you know, that medical database scientists use to track everything—there isn't a single paper specifically about Escozul (Vidatox). There’s some mention of how scorpion venom acts as a cytostatic agent, sure, but nothing regarding those specific extracts used in Escozul. Most of the research out there linking scorpion venom to cancer has been done *in vitro*—meaning just on cell cultures in a lab dish. Now, a cell culture is a decent starting point, but without *in vivo* testing, does it actually mean anything? Not really. So many substances can stop cells from growing in a petri dish, yet they turn out to be far too toxic for actual use in a living body. That's why any potential medicine has to go through the ringer: first tested on cells, then on small mammals—like mice—then primates, and finally on humans through clinical trials (with full informed consent, obviously, because nobody should be forced into this). Even though we share so much biological ground with animals, our metabolisms are different—a perfect, albeit tragic, example being Thalidomide, which was completely safe in rodent tests but caused such devastation for thousands of pregnant women.

So, if you ask me... I'd put it this way: scorpion venom has shown cytostatic effects in a lab setting, which is interesting, certainly, but it's absolutely insufficient to classify it as a medicinal preparation, let alone a cancer treatment. In fact, even the Cuban government has distanced itself from it.http://havanajournal.com/culture/ent...ent-from-cuba/

Unfortunately, parts of that aren't quite right. Vidatox is a medication—it is officially registered as one, which implies that clinical studies have indeed been conducted. It has proven anti-carcinogenic, anti-inflammatory, immunoregulatory, and analgesic effects. It has been in use for about 20 years, following 15 years of clinical trials. During that time, beyond just improving the quality of life for patients dealing with cancer pathologies, there have been noted cases of remission—including cases involving breast, uterine, and brain cancers.
The only official site for this medication is: http://www.labiofam.cu/congreso-internacional
where you can actually see the drug's effect on cancer cells.

Best regards