Resources and support for families dealing with cancer and serious illness

My mom is dealing with massive swelling in her wrists and ankles—the hands and elbows are the absolute worst right now. We picked up some herbal massage oil from a local healer who swears it works almost instantly, so we're going to see if there's any truth to that.😳

Has anyone here dealt with this kind of edema? Does anyone know a truly effective way to get rid of it or at least dial it back?

For a while, whenever her hands started throbbing, we tried a makeshift remedy: tying a triangular bandana to the headboard above her bed and sliding her arm through it, hoping to manually drain some of that lymphatic fluid. It didn't really work; it just ended up making her elbow look like a giant bun.

Right now, she can't stand any pain except for this intense aching in her hands and feet, which honestly looks pretty severe.😢

northernfox9 said:Sent it!!

I actually just picked up some Glucosan for my dad through this company. If you look at their setup, it seems like there’s a bit of a difference in who's actually manufacturing it.

http://www.beta-glucan.co.uk/contact.htm

Here is one of the links for the official distributor.

http://www.vitalizehealth.com/

vividowl10

First off, I just gotta say this thread is awesome. I stumbled onto it by accident, and honestly, I could've used this info a few years back... 😢

Angela Wright said:My mom is dealing with some really heavy swelling in her wrists and ankles, [...]

Has anyone dealt with this kind of edema before? Any tips on how to get rid of it or even just tone it down?

It all comes down to what's causing the swelling—it could be "just" circulation issues, or maybe lymph drainage getting blocked by growths...

Angela Wright said:Right now she isn't feeling much pain except for her hands and feet, which seem to be hurting pretty bad.😢

That's definitely something to look into. There's a specialized pain management clinic over at MD Anderson Cancer Center, and those folks can give some seriously smart advice. For us, using the Fentanyl patch was a game changer—it handled the pain (with the occasional little bit of Percocet on the side), and Mom stayed totally clear-headed, which we weren't even expecting since it's an opioid. She was even taking charge herself, making sure the patch was applied right and marking the box to keep track of when she changed it 🙂 Obviously, you have to be super careful with the dosage: start with the lowest dose possible and stick strictly to the instructions on when to swap them out.

So, it looks like there's this new cancer drug that might actually shrink tumors. It’s called Dichloroacetate, chemical formula Cl2CHCOONa (sodium salt of dichloroacetic acid Cl2CHCOOH). Researchers over at Albany University in Canada have been looking into it for a while now... they're reporting tumor reductions of about 70% after just three weeks of use. That's using a tiny dose—roughly 10mg per kg of body weight, which is about 1 gram of the substance a day. According to some unofficial websites run by Michelakis and Dr. Archer, it likely won't affect two specific types: sarcoma and small cell lung cancer.

The drug itself isn't expensive, maybe $1-$2 a day. Since you can't patent the substance, big pharma has zero interest in funding the research. But, since the stuff is already known to be safe from other studies, it probably won't be long before it starts being used properly...
You can find more details on this site:

http://www.thedcasite.com/

Best,

slymoose4 said:It looks like there’s a new cancer treatment that actually has a shot at shrinking tumors. It's called Dichloroacetate, chemically known as Cl2CHCOONa (sodium salt of dichloroacetic acid Cl2CHCOOH). Researchers over at Albany University in Canada have been looking into this for a while now, reporting that they've seen tumor reduction as high as 70% after just three weeks of use—and that’s using a tiny dose of about 10mg per kg of body weight (roughly 1 gram of the substance daily!). According to some unofficial websites run by the researchers, Michelakis and Dr. Archer, it’s highly probable that this won't affect two specific types: sarcomas and small cell lung cancers.

The drug itself isn't expensive—we're talking $1 to $2 a day. Since you can't patent the substance, Big Pharma has zero incentive to fund the research, but since the stuff is already proven to be safe from other studies, it won't be long before it starts being used clinically.
You can find out more here:

http://www.thedcasite.com/

Best,

😁 I've actually already posted about this before.😉

coastalangler84 said:First off, I have to say this thread is fantastic. I stumbled upon it by accident, and honestly, it’s something I could have really used a few years back... 😢

It all boils down to what’s causing the swelling—whether it's "just" circulation issues or lymph drainage being blocked by some kind of growth...

There's a lot to weigh here. There is a specialized Pain Management Clinic at MD Anderson Cancer Center, and they can offer some genuinely smart advice. To give you a specific example, our experience with the Fentanyl patch was that it managed the pain effectively (with the occasional extra Percocet thrown in), and my mom stayed completely lucid, which we didn't expect from a medication that falls under the opioid category. She was even proactive about making sure the patch stayed on, marking the box herself to track how many hours had passed since she applied it 🙂 Obviously, you have to be careful with dosing: start with the lowest possible dose and stick strictly to the instructions regarding when to swap out the patches.

I am terrified of giving her anything that might cloud her mind, because right now, communicating with her is already such a struggle.
Her edema seems to be caused by a mix of Dexedrine and poor circulation due to her lack of mobility. Her blood pressure and heart rate are perfectly normal, so diuretics aren't an option (we tried them, the swelling dipped slightly then came right back, and her potassium and blood pressure both plummeted). Aspirin Protect has been the most helpful thing, helping us maintain a sort of baseline state. I've also considered bringing in a massage therapist for lymphatic drainage, but her doctor warned me against it, fearing it might dislodge a potential blood clot... but I keep thinking, what's the worst that could happen? At worst, she passes away, which is likely coming soon anyway, but at least the drainage might ease her suffering if it works. What do you all think about trying the drainage?😳

Hi everyone!
I read this forum all the time and honestly, you guys have been such a huge support to me. I’ve been battling ovarian cancer for about 10 months now, so thank you 😘
!
I did have a quick question, though. I’ve been out on medical leave for the last 10 months, and so far I’ve just been receiving $267 from my insurance provider (it feels a bit silly even saying that!), but now I have to go in for a disability evaluation next week. There was some mention of applying for long-term disability benefits during the appointment. Does anyone know how that process works? Is there actually a realistic chance of getting approved at my age (I'm 25)?
Thanks so much in advance! 😘

Angela Davis7 said:Hi there!
I read this board regularly, and I have to say, you all have been such a huge support to me. I’ve been battling ovarian cancer for ten months now, so thank you, 😘.

I have a question, though. I’ve been on medical leave for the last ten months, receiving $267 from insurance every month (it feels so shameful!), and now I have to go to a medical evaluation for disability benefits next week. There was some mention of applying for long-term disability/social security. Does anyone know how that works? Is there actually any chance I could qualify for disability at my age? I'm only 25.
Thanks in advance, 😘

Look, even my husband (who is 33) had to go through the disability review process. Honestly, it’s mostly just one of those bureaucratic hoops you have to jump through where they basically just issue a document stating that your medical leave is being extended. Down the road—and I mean years down the line—if you truly can't work or if you meet their specific criteria for being unable to perform your job, then you might be able to transition onto actual disability payments based on those records. For now, you just have to show up, but don't go counting on a disability check quite yet.

Angela Wright said:I’m honestly terrified of giving her anything that might mess with her mental clarity, because even right now, talking to her feels like a struggle.

That’s exactly why I brought up the perks of using a Fentanyl patch (though you definitely have to check with the docs first since everyone reacts differently).

Angela Wright said:I was actually thinking about getting a massage therapist over to do some lymphatic drainage, but her doctor told me it wasn't a great idea in case there are any blood clots hiding in there that could get dislodged... but part of me is just sitting here thinking, what’s the worst that could happen? She can only die, right?

You really have to rule out thrombosis before even touching lymphatic drainage (you know, through those hemostasis tests or whatever blood work they run). You seriously can't play around with that stuff—a clot can cause so much trouble and really make things go south 😢

In this situation, I think focusing on changing her positioning should be the priority... and you gotta get creative! Like, try different ways to prop up her arms or legs, or shift how her torso sits. Besides the physical help, it actually helped me feel closer to my patient in my own experience, because we were working together to figure things out and find solutions...

coastalangler84 said:That’s exactly why I brought up the benefits of using a Fentanyl patch (though you absolutely have to consult a doctor first since every patient is unique).

Before even thinking about lymphatic drainage, they had to rule out thrombosis as the culprit through hemostasis testing or other blood work. You don't mess around with that; a clot can trigger anything and really mess things up 😢

I think the first thing to tackle here is experimenting with positioning... you have to get creative (trying different ways to elevate the legs and arms, adjusting the torso, etc.). Beyond the physical benefits, in my own experience, it actually helped build a deeper connection because we were working together to solve the puzzle and find answers...

But that’s the catch—because she’s in such bad shape, she can't even undergo the tests to see if there's a thrombosis present. We have a hydraulic hospital bed where we can adjust the legs, the torso, the whole setup. When we elevate her legs, her ankles swell up, but then her knees blow up to the size of a cantaloupe. It’s the same deal with her elbows when we lift her arms. She can barely stay on her side for 20 minutes before the arm she's lying on starts hurting intensely. Honestly, I'm at my wit's end 😢. She's incredibly swollen today, for instance. It seems like it might be tied to the weather.

Angela Wright said:We’ve got one of those hydraulic hospital beds at home [...]
But even then, she can barely hold a position for 20 minutes before whichever arm she's lying on starts hurting like crazy.

So yeah, switching positions every 10 minutes or so is totally fine. 🙂

From what I've dealt with, the biggest thing is just watching that skin—it gets super sensitive from being down for so long and because of the swelling. There are all sorts of creams and lotions out there specifically for preventing pressure sores, and my mom actually really liked that Diana cream from CVS. It helps a bit with circulation (sort of a warm-then-cool sensation), but definitely test it on a tiny spot first. We ended up mixing it with some Decumil and another stuff (can't remember the name, honestly)—just using that "maybe this one has a magic ingredient the other doesn't" logic! 🙂 The swelling didn't go away, but after two months of being bedridden (she was down for almost five months total!), her skin stayed perfectly clear without any issues.

Just a heads-up though, my situation was pretty different since she was still pretty cooperative until the last few days (except when it came to picking food, where I had to play chef to find something she could stomach), and I also lucked out because it happened while I was on vacation.

HELP NEEDED
We just got back from the oncologist today. My mother starts chemotherapy this Tuesday; they’re calling them "milder" sessions—four cycles, three days each. Since they had to remove her entire stomach, gallbladder, and spleen, the doctors are playing it safe with chemo even though there aren't any visible metastases yet. It’s purely preventative at this stage. Please, if you have any advice whatsoever, I am all ears. Ever since such an extensive surgery, she has absolutely no appetite and everything she tries to eat comes right back up. She's barely eating anything at all.
I AM ESPECIALLY ASKING FOR ANYONE WHO HAS NAVIGATED STOMACH CANCER AND CHEMOTHERAPY BEFORE. Thank you.

Linda Campbell
Just try talking to the oncologist again before the radiation starts.
Explain that Mom isn't eating and she's losing strength, then ask them to prescribe Ensure. My mom recovered in just one week thanks to that drink—her blood work actually improved—and she was able to push through her chemo. She had zero appetite too, basically forcing herself to eat, but now she’s up at night grabbing a few snacks. Wishing you all the best.
Regards.

Jessica Taylor62 said:Linda Campbell
Please, try talking to the oncologist one more time before the radiation starts.
Explain that Mom simply doesn't have an appetite and is feeling incredibly weak; beg them to prescribe some Ensure. In my experience, my mother turned a corner within a week just by using that supplement—her bloodwork actually improved—and she was able to push through her chemotherapy. She struggled with her appetite too, having to force herself to eat, but now she’s even managing to get up during the night to grab a snack. I am rooting for you all.
Best wishes to everyone.

We gave the Ensure a shot, but since she doesn't have a stomach left, it didn't sit well at all. It seems the dairy content triggered some diarrhea (apologies for the graphic detail), so that's a no go. Regardless, thank you.

Linda Campbell said:We tried Ensure, but since she doesn't have a stomach, it just didn't sit right. I think because of the milk content, she ended up with diarrhea (sorry), but thanks anyway.

Because her situation is so unique—not having a stomach changes everything—you really need to ask her doctor which specific supplements would be best for her. Like I mentioned in one of my previous posts, I've had great results using Pikovit syrup; it’s excellent for stimulating an appetite.
I also don't think Native Propolis should cause any issues. You can easily pop the capsule open and mix the powder into some yogurt or an AB culture. My own mom does this because she can't swallow capsules since they're too large for her. I actually tried taking it that way myself just to see if it was tolerable, and it was perfectly fine for me—it almost tastes like honey, though it is a little sticky on the teeth. I think it's a fantastic option, especially since it helps prevent oral infections that way.

It’s been a while, vividowl10, Linda Campbell... hey everyone, what’s the status update?
Angela Wright, how’s your mom doing? Have those lumps subsided at all?

Same over here—we've actually started seeing these bumps appearing on the legs and stomach for the first time...
On the bright side, though, the vomiting finally stopped.

velvetmarlin18 said:It’s been a while, vividowl10 and Linda Campbell... hey everyone, what’s the status?
Angela Wright, how’s your mom doing? Have those swellings gone down yet?

The same thing is happening here—we're seeing swelling on the legs and stomach for the first time...
On the bright side, at least the vomiting has finally stopped.

Mom hasn't changed. Right now, I'm just praying to God that things stay stable instead of taking a turn for the worse, because she has suffered more than enough.
I'm currently locked in a battle with my dad, who has completely lost it emotionally. It is impossible to have a rational conversation with him. His thyroid issues have made him incredibly irritable and hysterical. He's let himself go entirely (he'll wear the same dirty pants for weeks and refuses to change 😢 ) and he constantly leaves messes everywhere, meaning I'm scrubbing floors three times a day. He’s dealing with dizziness and high blood pressure, yet he pulls stunts like climbing out windows or leaning precariously over edges just to plant flowers. It makes me feel faint, but I can't say a word to him because it just triggers another outburst. Every time I try to bring something up, he starts lecturing me about moving out and getting a job (which is easier said than done when you're 30 and have been unemployed for four years), claiming he'll just find some woman to take care of Mom... he has completely lost touch with reality. I have never complained once about helping Mom, and both God and Dad know exactly how much I do. What’s physically and emotionally draining me is having to clean up after him constantly on top of all the other housework. When I sleep in until 8:00 on Saturdays and Sundays—which I need to do since I'm up at 5:30 every weekday just to handle Mom's needs before he heads to work at 6:30—he nags me about being lazy and sleeping all day. I am utterly exhausted, and dealing with his nonsense is the last thing I need right now. Nothing else matters to me anymore; I just want Mom to pass away in peace.🙂

That swelling on the abdomen might just be fatty tissue rather than edema. The best way to tell is to press down on it with a finger. If an indentation remains, then it's definitely edema.

So, my dad just got diagnosed with metastases on the head of his right femur, the head of his left femur, the 3rd and 11th ribs, and the sternum... Even though I had this gut feeling deep down, the shock and all those other miserable feelings are still hitting me hard.

He’s waiting on a multidisciplinary team meeting this Thursday to decide on the start of treatment.

I am so incredibly sorry about your dad, velvetmarlin18. My heart really goes out to everyone else here who is tied to this situation in any way... I finally understand what it feels like to be a secondary victim.

I’m still trying to read up on everything I can about this beast, but honestly, part of me is terrified to find out more. I know I have to stay composed—it's the only way I can actually be there for him... pfffffffffff. velvetmarlin18, my biggest fear is just not knowing enough, even though I’ve spent almost seven years studying healthcare... plus, I’m pretty skeptical about most of our doctors.

Just arrogant ego-maniacs with their "small-town, corrupt mindset," trying to heal their own family generational complexes by acting superior over patients and everyone else they can dominate... fackers.

And that’s basically everything I’ve gathered in less than a month...

velvetmarlin18, has your dad started his treatment yet? Where did the beast metastasize?

Hang in there.😘

If anyone has any tips regarding bone metastases, please, I'm all ears.

Mr. Lepina, thank you so much for the advice, and I definitely won't be hospitalizing my dad....

Big xxxxx to everyone.

Angela Wright, hang in there! You are dealing with such an incredibly tough situation right now, and my heart really goes out to you. I truly hope you have someone close by who can help you navigate through all this chaos...
Honestly, I'm just hoping this forum can at least provide a little bit of a release valve or a place where you feel a tiny bit better...
On another note, my mom is heading in for an abdominal ultrasound today, and we are all just praying that the breast cancer hasn't spread beyond the initial site..
Hey everyone!

Carol Sanchez2 said:Angela Wright, hang in there! You are in a seriously rough spot right now. I really hope you have someone by your side to help you navigate this whole mess. Hopefully, this forum at least helps you feel a little better or gives you a way to vent...
On my end, my mom is heading in for an abdominal ultrasound today, so we're crossing our fingers that the breast cancer hasn't spread beyond the breast itself..

Hi everyone!

Fingers crossed that everything turns out okay! It's honestly about time someone else on this board posted some actual good news for once.🙄
I wish I could be more optimistic, but honestly, I’m just stuck in this incredibly dull, empty headspace right now.👎

I'm worried about the Sarcoma; there's just no sign of anything happening.😕

My boyfriend is staying with me at the moment, but I feel like he's caught in the middle of a total crossfire, and I'm terrified he might break under all this pressure too.😳