Support for families dealing with cancer and other serious illnesses (Part II)

Hello!
Does anyone happen to know where I might be able to track down some Endoxan tablets, specifically the 50 mg dose?

Carol Gomez71 said:Hello, a family member has been diagnosed with glioblastoma. Taking higher doses of Dexamethasone seems to be triggering depression, fear, and anxiety. Is there anything he can take to offset these side effects or at least take the edge off? He’s totally against psychiatric help or taking psychotropic meds—is there anything natural out there?
Thank you!

It’s actually pretty unlikely that the Dexamethasone is the sole culprit here. It’s more likely coming from the primary illness itself and the intensity of the treatment, which can push a person to such extremes that their entire personality shifts or they suffer intellectual decline, unfortunately 😢. One thing though: Dex can spike blood sugar levels significantly, so you really need to monitor that constantly and introduce medication if necessary.
Maybe try giving him some Valerian tincture; since it's herbal, he might be more open to it, and it should help him relax.

Valerijana and those other herbal remedies... they really don't sit well on the stomach. They tend to cause a lot of heartburn. So, I guess you have to be careful with that too. We didn't give my mom anything at all, even though some private internist gave us these crazy recommendations about giving her morphine. Of course we didn't give her any morphine. She wasn't even having severe pain after her leg amputation.

Carol Gomez71 said:Hello, a family member has been diagnosed with glioblastoma. Taking higher doses of Dexamethasone is really triggering depression, fear, and anxiety for him. Is there anything he can take to get rid of these side effects, or even just dull them down a bit? He’s totally against seeing a psychiatrist or taking psych meds—is there anything natural out there?
Thank you!

There is. This is what my doctors recommended to me because of the heart meds I'm on: lemon balm tea or tinctures, and some aloe vera for the stomach.

Hello everyone! I’ve been reading through your posts for about two years now—not that our battle against this fierce enemy has ever truly paused. Our story began when my husband was diagnosed with metastatic colon cancer in his 40s. Naturally, he had to undergo surgery, and he's currently living with a colostomy bag.
Right now, I am in a very dark place mentally because the weight of it all is just crushing me; we are currently waiting on a follow-up CT scan. That period of waiting... it honestly drives you insane.
Originally, they found two metastases—one in the lungs and one in the liver—which responded to Chemo. The last CT result was merely "so-so," according to the oncologist, so he was moved to a milder Chemo regimen involving one day at the outpatient clinic and pills to take at home. Lately, he’s been dealing with frequent abdominal pain and vomiting, which we suspect might be dietary issues, yet that underlying fear of disease progression is always lurking there. I want to ask those of you who act as the backbone for your loved ones: how do you handle all of this? How do you keep from falling apart? There are simply days when I am completely overwhelmed by anxiety—this terrifying question of whether I can actually do this, whether I can mentally endure it all, because I *have* to be strong for him and for our little one. Please, I need your advice; I have tried to stay strong, but I feel as though my own walls are finally crumbling.
He is the one going through the worst of it, but he doesn't complain—he is so incredibly brave and strong.
I am also wondering about alternative options. How can I best support him? I was terrified of doing anything on our own, so we bought some beta-glucan, but since he is on Chemo, we aren't using it; now we are considering hemp oil... I just feel so lost in it all.
Thank you in advance, and good luck to everyone out there fighting!

Maria Baker41 said:Hello everyone! I’ve been lurking here for about two years now, and man, it feels like a lifetime given how long this battle against such a brutal enemy lasts. Our story is that my wife was diagnosed with metastatic colon cancer in her 40s. Naturally, she had surgery and now has a stoma.
Right now, I am in a really dark place mentally because the weight of all this is crushing me. We are currently waiting on a follow-up CT scan, and honestly, the waiting game is driving me insane.
Initially, they found two metastases—one in her lungs and one in her liver—which responded to chemo. The last CT results were just "so-so," according to the oncologist, so he switched her to a milder chemo regimen administered at a day clinic once a week, plus oral meds at home. Lately, he’s been dealing with frequent abdominal pain and vomiting; we think it might be something he ate that didn't sit right, but there's always that nagging fear of disease progression lurking in the background. I want to know how those of you acting as caregivers for your loved ones deal with all of this. How do you stop yourself from completely falling apart? There are days when anxiety just floods over me, making me wonder if I can handle it all—if I have the mental fortitude to stay strong because I *have* to be there for him and for our little kid. Please, I need advice. I’ve tried to be tough, but I feel like the very walls holding me up are crumbling.
He’s the one going through the worst of it, but he doesn't complain; he’s incredibly strong and brave.
I’m also wondering about alternative options. How can I best support him? I was terrified of doing anything on my own, but we bought some beta-glucan, though we aren't using it while he's on chemo. Now we're thinking about hemp oil... I just feel completely lost in all of this.
Thank you in advance, and good luck to everyone out there fighting!

The best advice I can offer is to take it one single day at a time and deal with whatever life throws directly in front of you in that exact moment. That is the only way to live healthily, keep your sanity, and maintain any sense of control over your situation. Both of you need to try to immerse yourselves in "the movie" of your life. Don't let the disease hijack the driver's seat; try to live your normal daily routine as much as humanly possible.
Whatever else life throws our way, we'll tackle it when it arrives. In my experience, obsessing over the future and constantly dissecting every possibility is an exhausting burden that we actually have the power to switch off through sheer willpower.
Remember, deep down, we are massive beasts that aren't even aware of our own strength; when the pressure hits, we don't ask permission—we move mountains.
Don't fall apart. Be the anchor. Live for right here, right now, and maybe plan a tiny bit for tomorrow—like just planning what's for lunch.

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hello everyone, especially to Angela Wright who is always so caring when answering questions. That’s actually what prompted me to jump in here and ask for advice, because I’m just wandering through the dark corners of the internet feeling completely lost. It’s about my mom. She’s 68. Up until three months ago, she was relatively healthy. Then came the coughing, then this weird mucus in her throat, then the pain, and we started the whole testing process. In New Orleans, things move at a snail's pace when cancer is involved. We found out about thirty days ago. Honestly, I still don't fully grasp what we're dealing with; the paperwork says squamous cell carcinoma, though I find some Latin terms for throat cancer that make my head spin. Things got messy during the biopsy—they had to intubate her—but she was released after a few days. Since she has a tracheostomy, we’re heading to the hospital every day or two for cleaning. Everything is moving so slowly. Her doctor reached out to Dr. Darko Solter at the clinic, and now we’re just waiting for their call. Every single day you think, "tomorrow will be it," or "maybe Monday," but every day feels like a year. Because they suspected a pulmonary embolism, they did a bronchoscopy and a lung biopsy, and thank God, there are no metastases there. From what I can decipher from all the medical jargon, the carcinoma is about 40x42mm, which I assume means stage 3. It’s hit the base of the tongue and goes up toward where the tracheostomy is. Based on the biopsy back on the 12th, it looks like the vocal cords weren't involved, but she’s already lost her voice, so I suspect they might have been hit after all. She’s having terrible headaches and ear pain. She’s dropped at least 12 kg and now weighs only 47 kg. She looks like a skeleton. I managed to get some Prosure, and she takes two a day; otherwise, we just make purees and chop everything tiny because she can barely swallow. I visit her twice a day so I don't overwhelm her or let her catch a glimpse of my own sadness. She’s a fighter and stays so hopeful about recovering. But as for me, I’m getting worse every day. I keep hearing how grueling and intense this surgery is going to be, and she’s just so frail and weak now. They say recovery could mean two or three months in the hospital, and word is that once she's in Chicago, visitors won't even be allowed. How am I supposed to help her recover if neither my dad nor I can even get to her side? How do we support her when she can't talk and probably won't even be able to hold a phone to text for a while? I’m terrified. I lie awake in the middle of the night thinking I’d rather she pass away during surgery than suffer afterward, dying alone in a room without anyone there. Do you know if Dr. Darko Solter is a good specialist? I don't doubt him—most of them are top-tier experts—but I really doubt the recovery part. This situation is just brutal, not being able to grab your loved one's hand and just be there. Yet, I don't want to give up. I don't know if people typically die from throat cancer if there aren't any metastases. I have this gut feeling that we’ll fight through this in a year and she’ll be my mom and grandma again, making snacks and cookies and enjoying the sun all day long. I don't know how much experience any of you have with this, but I'm looking to you all for hope and comfort because nobody else understands. Angela Wright, thank you in advance; you are such a kind soul for helping everyone with advice and support.

Maria Baker41 said:Hello everyone! I haven’t checked in here for about two years, though our battle against this heavy hitter hasn't slowed down one bit. Our story is that my wife was diagnosed with metastatic colon cancer in her 40s. Naturally, she had surgery and now uses a colostomy bag.
Right now, I'm in a really dark place mentally because the weight of everything is just crushing me. We are currently waiting on follow-up CT scan results, and honestly, this waiting game is driving me insane.
Initially, they found two spots—one in the lungs and one in the liver—which responded to Chemo. The last CT scan result was just "so-so," according to the oncologist, so he's been moved to a milder Chemo regimen once a week at the outpatient clinic, supplemented by pills at home. Lately, he's been dealing with frequent stomach pain and vomiting; we think it might be something he ate that didn't sit right, but there's always that underlying fear of the disease progressing. I wanted to ask how those of you who act as support systems for your loved ones deal with all of this. How do you stop yourself from falling apart? There are just days when anxiety floods me, making me wonder if I can actually handle this—if I have the mental stamina to stay strong because I need to be there for him and for our little kid. Please, I need some advice. I thought I was tough, but I feel like the walls I built are finally crumbling.
He's the one going through the hardest part, but he doesn't complain; he's incredibly strong and brave.
I'm also wondering about alternative options. What can I use to help him? I was scared to try anything on my own, so we bought some beta-glucan, but since he's on Chemo, we aren't using it. Now we're thinking about hemp oil... I just feel completely lost in all of this.
Thank you in advance, and good luck to everyone else fighting this fight!

That is such a heartbreaking situation; please hang in there.
You can find more information regarding colon cancer at: https://www.oncology.org/colorectal-cancer
I would definitely recommend having genetic testing done on the tissue already available from his surgery to see if he might be a candidate for targeted therapy!

I’m personally looking after an elderly patient right now—he’s completely immobile. Honestly, how am I managing? It’s tough, because I’m doing this all on my own. One major struggle is trying to turn him sideways in bed, especially if the home health aides don't feel like stepping in to lend a hand. I handle washing his hair myself since I realized I can manage that without much trouble. For some reason, though, repositioning him onto his hips is really hard for me, even though I know I should be doing it more often due to his skin issues. I bought a bunch of new pillows from IKEA, but none of them seem right. They feel too bulky, I guess, and they just aren't helpful for positioning him properly. An older, smaller pillow used to be perfect, but I had to toss it because urine soaked all the way through to the core. Another issue is that he can't get an IV at home; he has such a hard time swallowing liquids, so it would be so much easier if he could just get his fluids in the evening when he's sleepy and doesn't want to drink anything. Eating is definitely a lot easier for him. He ended up staying in the hospital today. Despite everything we tried, he still developed initial pneumonia. I have to say, the doctors were great—even though we spent a long time in the ER, they examined him very thoroughly. His condition actually worsened because of the long wait, especially since he had a fever and was struggling to breathe. Today, I saw so many mobile people being impatient, just refusing to wait, acting like they couldn't stand it. For some reason, almost everyone who was immobile had to wait the longest today, except for one lady. But I’m so thankful for a younger doctor who showed some real sense and actually wanted to help. In his current state, with the difficulty swallowing and the fever, there was just no way I could bring him home. My mom was much younger, but she never had swallowing issues. She could eat and drink normally, even when she had a fever one winter. I didn't put her at risk because I wasn't going out anywhere; Dad was the one heading to exhibitions. Fortunately, everything turned out fine back then, even though she was quite ill for a few days. It’s just... it's so much easier when you have someone else with you. Some days are just incredibly heavy, and I honestly don't know what I'll do. It was much easier with Mom around because Dad was there to support me.

Cancer is such a heavy diagnosis to carry. My grandparents were both diagnosed later in life, but they still had many good years left. I grew up with them, so every goodbye feels incredibly heavy. Losing my mom meant losing that core part of my family, since she was really the glue holding us together. I don't even count some of the extended relatives, even if they live in Chicago. Honestly, I don't need people who try to provoke you when a situation is already this sensitive and difficult. If something bothered them while we were visiting, they could have just spoken up right then.

So, my grandma just had surgery for breast cancer, and now she’s gearing up for radiation treatments. Does anyone here know for sure if an 8-month-old baby can be near her while she's going through this? I really tried to nudge her to ask her oncologist, but she’s just like, "Oh, of course it's fine," and didn't even think to bring it up. I've been Googling like crazy, and while some American sites say it's totally okay, then I stumble onto other English pages saying it might be better to keep some distance. It's such a head-scratcher, right?

I’m looking for some help here if anyone knows... does an antibiotic exist that just dissolves right in the mouth? It is being incredibly difficult to get him to take a standard antibiotic pill. I have to crush it up, but I’m really worried that might make the medication less effective. He actually had an IV infusion at home today. I managed to pull that together somehow, but he only ended up getting half a liter of the infusion. I honestly think that's not enough because he’s having such a hard time drinking anything—almost nothing at all. I'm thinking about trying to arrange for a short stay at a private care facility, but since it's this time of year, they seem to be pretty much fully booked.

Elizabeth Johnson5 said:My grandmother just had surgery for breast cancer and now she has to start radiation. Does anyone know for sure if an 8-month-old baby can be near her while she's undergoing treatment? I asked her to check with her oncologist, but she just said, "Of course they can," and didn't bother asking. I've been Googling endlessly—some American sites say it's totally fine, but then I stumble upon some English-language pages suggesting it might be better to stay away.

Hey there! Honestly, the best person to give you a definitive answer would be a radiologist rather than an oncologist—though, in my experience, they’d likely both tell you the exact same thing: you all can be near your grandma without any issues at all.😉 I'm not a radiologist myself, but I have breast cancer, and I have spent a massive amount of time digging through mountains of research—both here in the States and abroad—on absolutely every type of treatment out there (including radiation therapy).
Regarding the radiation itself, there are a few basic types. First, there's external beam radiation—which is what I call "standard" radiation and is most commonly used for breast cancer. In this case, you're only under the machine for a few minutes every day, and it is completely safe for those around you because the radiation source is inside the machine, not inside the patient (it's just like how you aren't a walking hazard to anyone after getting an X-ray). Then, there's something called brachytherapy—where they actually place the radiation source inside the patient. That's used for certain other types of cancer (not typically breast cancer), and *that* is where the debates about whether it's harmful to others actually happen. There are plenty of articles claiming even that isn't dangerous, but I wouldn't bet my life on it. Finally, there's systemic radiation therapy, where they don't just target one specific area but treat the whole body (like using specialized tablets, for example).
To make a long story short, and without getting too bogged down in the weeds: if your grandma is going for "standard" external radiation (which I'm assuming she is), the baby is perfectly safe. 😉

I really hope your grandma feels better soon and kicks this thing's butt! 🙂

Elizabeth Johnson5 said:My grandmother just had surgery for breast cancer and now she has to go in for radiation. Does anyone know for sure if an 8-month-old baby can be near her while she's undergoing treatment? I asked her to check with her oncologist, but she just says, "Of course they can," and didn't bother asking. I've been Googling and Googling, and I'm finding some American sites saying it's fine, but then I see other English pages suggesting it might be better to stay away.

It's perfectly fine. A grandma who has been treated isn't radiating anything. It's a proven fact. Honestly, the same goes for anyone else who has been exposed to external ionizing radiation—they aren't "radioactive."

My dad was diagnosed with cancer back in November of last year. Because his platelet count was sitting at just 30, the anesthesiologist at Varaždin OB refused to clear him for surgery, even after they tried giving him plasma...
They sent him for radiation instead, since chemo wasn't even an option given his blood work. He had to go to Johns Hopkins Hospital for the treatments. It was supposed to be six weeks, one session every weekday, but it ended up stretching past nine weeks because their machines were constantly breaking down. Just imagine... traveling by ambulance from point A to point B and back every single day, only to arrive at point B and have them tell you, "Sorry, nothing today, the machine is broken." After the radiation finished, things actually took a turn for the worse. He lost 35 pounds. He couldn't eat anything at all, just the protein shakes they prescribed for him. His ENT told him his throat looked like he’d survived Chernobyl. At his oncology follow-up three months later, they sent him back to Johns Hopkins, where they turned him down for surgery yet again due to his blood counts...
In early May, his ENT referred him to the Cancer Clinic. Dr. Grgic Pastorcic took him in, and after being rejected for surgery twice before, he finally went under the knife... purely because this doctor refused to give up on him.

Sadly, he caught a bacterial infection. His body just isn't strong enough to fight it off right now. We were holding out hope, praying... until yesterday, when they called my mom saying she should come in this morning to see him. I'm angry. I just can't believe that in the 21st century, you can still catch an infection like this. I'm angry because they waited so long... I have five hundred questions racing through my head. But honestly, I don't even know who I'm mad at. His wound is actually healing okay, but because of this stupid infection, he's losing his sight, he's losing everything bit by bit. He can't speak anymore, he's on morphine, and he's still in pain... And then the anger fades, and there's just this wave of sadness. It comes in waves...

I'm just glad they kept him in the hospital. Last December, I dealt with a similar situation with my father, and they ended up sending him home... he passed away only three days after they let him go. My mom has MS, and I'm not sure—she says it herself—that she could handle this kind of thing...
We live abroad. I was so happy when I bought the tickets to come home and see him, but in the end, I won't make it in time. I gave birth thirteen months ago... in that time, the baby has already lost two grandfathers without them ever getting the chance to hold him.

Sending strength to everyone fighting through the grief, the pain... and the anger.

hello. Joining this thread now. My father has pancreatic cancer that has spread to his liver. It’s just my brother and me; Mom passed away. We both have our own families, but since my brother lives with him, he handles most of the daily care. I step in whenever I can, though I moved out of the house a long time ago.
I'll write more about his condition once I find the strength. This has been heavy for both of us. It's especially hard on my brother—he hasn't had much experience caring for someone ill, whereas I spent years looking after my immobile grandmother. He's struggled mentally, and it's only been four months since we got the diagnosis. Neither of us is young, and we both deal with our own health issues. But beyond his physical state, Dad is struggling mentally too. He's scared. I can't tell if it's the medication, the tumor itself, or something else entirely. I worry about us breaking down, too. What happens then? I honestly don't know.
I want to contribute here; I've read everything, and we could all use the support. Just for context, Mom had breast cancer that was successfully treated because it was caught early, but she eventually passed away from heart failure.

Rachel Garcia said:Hello. I’m joining this thread too. My dad has esophageal cancer with liver metastases. My brother and I are on our own—our mom passed away—and we both have our own families now. Since my brother lives with him, he handles most of the day-to-day care, while I come by whenever I possibly can, though I moved out of the house a long time ago.
Once I find the strength, I’ll write more about his condition. This hit both of us hard—especially my brother, since he hasn't really had to care for a sick loved one before, whereas I spent years looking after my immobile grandmother. My brother has taken quite a psychological hit, and it's only been four months since we got the diagnosis. Neither of us is young, nor are we old—we both deal with our own health issues. But beyond the physical toll, Dad is struggling mentally; he’s terrified. Is it the medication, the tumor itself, or something else entirely? I worry that if we break down, what happens then? I just don't know.
I want to be active here; I've read everything, and our family truly needs the support. Just to note, Mom had breast cancer that was successfully treated because it was caught early and removed, but she eventually passed away from heart failure.

Hello! I am so incredibly sorry you are going through this—I truly understand where you are coming from. Accepting the illness itself is hard enough, but the way it shifts the entire family dynamic is overwhelming. Personally, I’ve faced many dark moments while my husband fights this battle; unless you've lived it, you can't possibly grasp the sheer fear and suffering an entire family endures. However—and I mean this with all my heart, as Angela Wright said—you have to take it one day at a time. If you are feeling mentally depleted, perhaps seeking professional help or a psychologist wouldn't be a bad idea? During my last crisis, I reached out to a specialist because I simply couldn't carry the weight alone anymore! I tend to be a very private person, and my husband doesn't like talking about his illness, so I can honestly tell you that just being able to open up to someone and truly cry helped me immensely. Even reaching out to this forum, where there are so many kind people offering selfless advice, provides a sense of relief. We have to stay strong for our loved ones—it is vital that we remain brave pillars for them, because they are the ones facing the hardest fight. Wishing everyone strength!

crimsoncanyon3 said:Such a heartbreaking story—please stay strong.
You can find more information regarding colorectal cancer here: https://www.oncology.org/colorectal-cancer
I would absolutely recommend having genetic testing performed on the tissue samples already available from his surgery—it's vital for determining if he might be a candidate for targeted therapy!

Thank you! It seems to me that his genetic testing has already been completed—but no one has actually told us what the purpose was, or if he qualifies for any advanced treatments!
I suppose that is something his oncologist should be asked?

Is chemo actually radioactive, like, are they injecting radioactive substances directly into your system?

Administering radioactive isotopes actually falls under radiotherapy.