Support resources for families dealing with cancer and other serious illnesses

Sam Murphy33 said:My mom is heading into the hospital tomorrow... thank you all for the replies... I intend to be her pillar of strength... this is incredibly difficult for me

No matter how heavy this feels, try to remain steady and keep the faith. Find some inner strength for your own sake first, and then for hers... so that instead of showing her tears, you can offer her a smile...

When you are confronted with an illness like this, perhaps the only positive perspective to help navigate the acceptance is realizing that this, too, is simply a chapter of life...

For me, the weight of it hasn't lightened; it feels just as heavy now, even when things seem stable, as it did the very first moment I learned what my mother was facing. Sometimes, without even realizing it, I find myself calling out her name just to hear a voice... just to confirm she is still "there"...

Please, let us know how the surgery goes... stay strong...

feralridge3 said:I’m not trying to make things harder than they need to be, I just don't know how this works. 🤷
It’s hard for me to imagine they’ll let me manage my own blood work and dosages for seven months straight. 🤷

Honestly, I’ll just see what he tells me tomorrow, based on whatever smart stuff he picked up from his colleagues at the symposium.

I didn't think you meant you were administering chemo by yourself. It's under his supervision—he writes down everything you need to do regarding blood tests and such. You can just go to a local lab, and then fax the results directly to him. I sent you a private message. Let me know what happens so we can figure out the next step.

I need some help here. My mom’s CT scan and ultrasound look fine, but her CA19/9 markers are sitting at 4720 00. Before the surgery, they were at 106. Her doctor claims this spike is just a normal reaction following the procedure. Is that actually a thing?
Help me out here.
Thanks...

feralridge3 said:what do you recommend?

Native propolis👍

Carol Newman21 said:I didn't think you were administering the chemotherapy on your own, but rather under his supervision—where he tells you exactly what to do regarding blood work and such. You can just get that done at a local lab and fax the results directly to him. I sent you a private message; let me know so we can figure out the next steps.

That’s not quite how the process works. Blood tests are handled at the outpatient clinic. Before starting any new cycle, they draw blood from a vein, and then after the treatment, they do a finger prick to check your status. Our doctor would have already written the orders for the labs in advance. If anything comes back outside the normal range, you’d have to contact the on-call doctor at the clinic immediately. We've never dealt with a situation like that before.

As for the dosage, you receive a vial for each cycle to take home. You drink it in the morning on an empty stomach and follow whatever specific instructions the doctor gives you regarding blood draws or other potential scenarios.

Honestly, the best move is to write down every single question you have on a piece of paper and go through them one by one with the doctor so there isn't any confusion.

Angela Wright said:Natural propolis👍

I think I'm going to give the propolis a shot.
I actually stopped taking the beta glucan; lately, I've just been sticking to beet juice.

Angela Wright said:It doesn't quite work like that. Bloodwork is handled at the outpatient clinic. They draw blood from a vein before every new cycle starts, and then after the treatment, they do a finger prick to check how things are looking. Our doctor would have already sent over the lab orders beforehand. If anything came back outside the normal range, you’d need to contact the on-call doctor at the clinic immediately. We’ve actually never run into an issue like that.

As far as the dosage goes, you get a vial for each cycle to take home. You drink it in the morning on an empty stomach and just follow whatever specific instructions the doctor gives you regarding blood draws or any other potential scenarios.

Honestly, the best thing you can do is write down every single question you have on a piece of paper so you can present them clearly to the doctor. It prevents any confusion.

That's solid advice; I forget everything regardless. 😲
I'll know more details this Tuesday.
I get my blood drawn right here in my own city; it's always been done that way.
To me, it makes perfect sense that I'd have to go into the hospital on the first and last day of the cycle.

Nancy Hernandez43 said:No matter how hard this hits you, stay strong and keep the faith. Find that strength within yourself—not just for you, but for her—so that instead of showing her tears, you can offer her a smile.

When you’re staring down a sickness like this, the only thing that makes the process of coming to terms with it any easier is accepting that this is simply one of life's heavy chapters.

For me, it feels just as heavy now, pretending everything is fine, as it did the very first moment I found out what my mother was facing. Sometimes, without even realizing it, I find myself calling out to her just to hear her voice, just to confirm she's still "there."

Please let us know how the surgery goes! Hang in there!

Thank you... she's home today. She'll be going in for surgery soon... she has to go back on Sunday since they let her come home for the weekend. I feel like I'm at the absolute end of my rope; I'm mentally exhausted and can barely keep myself upright, even though I'm still pushing through all the daily chores. She actually seems to be doing better than I am. Even though I've read countless books about the importance of maintaining a positive mindset, I can't seem to apply any of it right now, much as I know I should... maybe I'll feel better eventually, but right now, all I feel is fear and uncertainty...

Sam Murphy33 said:Thank you... she’s home today. She’s scheduled for surgery this Sunday; they let her come home over the weekend... I feel like I'm at my breaking point, completely mentally exhausted, and barely able to stay on my feet even though I'm managing all the daily chores. She actually seems to be doing better than me. Even though I've read mountains of literature about the importance of positive thinking, I can't seem to apply any of it right now, even though I know I should... perhaps things will improve, but for now, there is only fear and uncertainty...

You'll feel better the moment you realize that this is simply part of life—that fighting for every single day means something more for her, for you, and for everyone in your household.

The initial shock is always the hardest part. I remember having conversations with my mother as if we were watching a final movie performance, feeling like we had to make up for lost time. Even now, two years and a few months later, I wake up every morning wondering if everything is okay, and every night I wonder if she's sleeping soundly. The worst thing is being asked, "Is she okay now?" because there really isn't an answer. It's always the same—whether before she was sick or during this current struggle, they don't feel any real change just because you're doing everything in your power. The only noticeable changes are the fatigue, a certain numbness, and what I'd call a sense of being elsewhere... but I noticed all those same things after the first round of chemo too.

In any case, try to find some strength... and if you already know that you're struggling more than she is, perhaps take on even more responsibilities or tasks, just to prevent those negative thoughts from looping endlessly inside you and magnifying your fear...

It’s Sunday now, and I imagine you saw her off to the hospital after a pleasant weekend together! Once the surgery is behind you and you start to see her recovery taking hold, things will feel lighter. Hang in there...

I want to thank God that my sister is doing better... she’s finally started eating soup and yogurt. It’s slow—just a spoonful at a time—but it’s progress. Her skin is feeling incredibly sensitive and hot right now, so she has to avoid things like chocolate pudding, fruit smoothies, juices, or cocoa. She just had her first follow-up appointment, and the doctors are optimistic that she's on the mend... and honestly, we aren't even daring to imagine any other outcome. After enduring 14 surgeries in less than three years, she has proven to be much stronger than all of us... she is a true fighter.
Wishing you all God's grace and good health! ...and of course, sending so much strength and optimism to all the families out there... hang in there!

Kate Doyle45 said:Thank God my sister is doing better... she has started eating soup and yogurt. It is slow, one spoonful at a time, but it is progress. Her throat is still burning terribly, so chocolate mixes, blended fruit, juices, or cocoa are out of the question right now. She had her first follow-up appointment, and the doctors believe she is on the mend. We refuse to even think about any other outcome. After enduring 14 surgeries in less than three years, she has proven to be stronger than all of us. She is a true fighter.
I wish you all God's grace and good health! And of course, I wish all the families out there immense strength and optimism... hang in there!

Your story is the most heartbreaking thing I have ever read on this forum, or any other for that matter.
I want your sister to recover as soon as possible. Please give her my warmest regards and a huge hug. 🙂

Thank you so much from the bottom of my heart, both for yourself and on her behalf 🙂

Nancy Hernandez43 said:You’ll feel a little better once you realize this is just part of life—that fighting through each day means something more for her, for you, and for everyone in your family.

The initial shock is the absolute worst. I remember sitting with my mom, having these conversations that felt like we were watching a play about to begin, feeling like we had to make up for lost time. Even now, two years and a few months later, I wake up every single morning terrified of whether she’s doing okay, and every night I wonder if she’s sleeping soundly. The hardest part is being asked, "Is she doing better now?" because there really isn't an answer. It's always the same—whether it was before she got sick or during this whole fight, they don't feel any real changes just because you're doing everything in your power. The only shifts I notice are a bit of restlessness, a certain dullness, maybe a sense of being checked out, but honestly, I noticed all those same things after her first round of chemo too.

Anyway, try to stay strong. And if you already feel like you're struggling more than she is, maybe throw yourself into even more work or responsibilities, just so you aren't stuck spinning those negative thoughts in your head that only feed the fear.

It's Sunday, and I assume you dropped her off at the hospital after a nice weekend together! Once the surgery is over and you actually see her starting to recover, things will feel lighter. Hang in there!

Yeah, I dropped her off... Thank you so much, and thanks to everyone else too... we had a lovely day together. I know this is just part of life, but God, it's hard.

Angela Wright said:It doesn't really work like that. Bloodwork happens at the outpatient clinic. They draw blood from a vein before every new cycle, and then after therapy, they do a finger prick to check everything. Our doctor would write the lab orders ahead of time. If anything came back outside the normal range, you’d have to contact the on-call doctor at the clinic immediately. We never ran into an issue like that.

As for the dosage, you get a vial for each cycle to take at home. You take it in the morning on an empty stomach and just follow whatever instructions the doctor gives you regarding blood tests or other stuff.

The best thing you can do is write down all your questions on paper so you can go through them with the doctor without getting confused.

I know the whole procedure inside and out—unfortunately, far too well. You can find a smoother path if you have the right people in your corner.
Believe me, I've been through a lot of this, sadly.
You misunderstood me. I didn't say anyone takes chemo by themselves; obviously, you do it under an oncologist's supervision. I was just pointing out that there might be a way to make the checkups easier by using a local clinic or lab. She isn't living in the city, and commuting every day is going to be brutal. Even though Temodal is relatively easy to handle, the weather could really make things worse for her.
I'm just trying to help. That's how we handled our tests.
🙂

Carol Newman21 said:I know exactly how the whole process goes, unfortunately quite intimately. You can certainly take the path of least resistance if you have the right people backing you up.
Believe me, I have been through more than my fair share of this, sadly.
You misunderstood me; I didn't say anything about self-administering chemo. Of course, it's done under an oncologist's supervision—that's standard. I was simply pointing out that there might be a way to make all those tests and checkups easier by using a local clinic or lab. Since she isn't living in the city, commuting every single day is going to be a nightmare, even if Temodal is relatively easy to tolerate. Plus, the heat alone might make things worse for her.
I’m just trying to help; that’s exactly how we handled our testing.
🙂

Personally, I'm hoping I'll handle the treatment just as easily so I can actually get back out into nature once the temperatures drop this fall. Right now, nothing. It's just too hot, and this heat is really getting to me.
I'm heading into Chicago tomorrow.
The package hasn't arrived yet; I was really hoping it would show up before my appointment with the oncologist.

I picked up some propolis today.
Are the capsules supposed to be taken before meals?

Kate Doyle45 said:Thank God my sister is doing a bit better... she’s started eating soup and yogurt again... just spoonful by spoonful, but progress is being made. Her sugar levels have been running quite high, so chocolate cereals, fruit smoothies, juices, or cocoa are strictly off the table for now. She had her first follow-up appointment, and the doctors believe things are finally looking up... though we aren't daring to hope for anything else yet. To undergo 14 surgeries in less than three years is an unimaginable burden, and through all of this, she has proven to be far stronger than any of us... a true fighter.
I wish you all God's grace and good health! ...and of course, I wish every family out there immense strength and optimism... stay strong!

Small steps lead to great triumphs. It is vital to maintain the belief that things will improve, but even more important is that everyone remains steadfast in the struggle—especially her...
She has truly experienced the reality of this fight, and she will fight for everything she can! With that kind of resolve, she will surely emerge victorious over these hardships! Hang in there!

feralridge3 said:I picked up some propolis today.
Should I take the capsules before eating?

About half an hour before meals.

Angela Wright said:About half an hour before eating.

We picked up some native propolis too, so we'll see how that goes. When can we actually expect to see results?

Kate Reed63 said:We also picked up some raw propolis, so we’ll just have to wait and see how it goes. When can we actually expect to see results?

Look, it’s hard to give a definitive answer, but here’s the reality: my mom, even without her gallbladder, handled oral chemo incredibly well (her blood work stayed right within the normal range the whole time). Plus, during the entire 1.5 years she was completely bedridden, she didn't deal with a single infection or a single pressure sore.
With patients facing struggles this intense, avoiding an infection is absolutely critical because it can be a death sentence.
Raw propolis isn't some magic cure for cancer; it's a dietary supplement designed to boost the immune system.
While she was undergoing both chemo and radiation, Mom was taking heavy doses—about three sets of five capsules every single day. In fact, she took her very last bit of propolis just minutes before she passed. She choked slightly on some porridge and stopped breathing. She died from the direct impact of the tumor itself, not from some secondary infection, which is what usually takes down patients in such a fragile state.

Angela Wright said:Natural propolis isn't some magic cure for cancer; it’s just a dietary supplement meant to boost your immune system.
My mom was actually taking massive doses—like three sets of five capsules every single day—while she was undergoing chemo and radiation.

But the label clearly says 3-4 times a day. 🤷
I was honestly thinking about just taking one capsule three times a day.