Support resources for families dealing with cancer and other serious illnesses

Angela Wright said:rustyscout31, with that much dexamethasone, she absolutely needs to be taking Pepto-Bismol or some kind of acid reducer. Otherwise—and I'm assuming we're talking about the 0.5mg tablets—that 12g dose could be covered by three injections (since they come in 4g doses). People usually say that's only for hospital settings, but I actually managed to get the ampules and syringes from a local pharmacy, and my home health nurse taught me how to give my mom the shots. Personally, I’d give her one injection a day and handle the rest with tablets, making sure to split the dosage into three parts throughout the day to get the best effect. And what about phenobarbital (the anti-epileptic)? She should definitely be receiving that too.
It's such a shame she won't go through with radiation, because it would really help with those brain metastases.

Yes, we are using the 0.5 mg tablets, since there aren't any stronger versions available. We've actually coordinated with the palliative care center so that a doctor visits once a day to administer the injection, which means we'll be combining the dexamethasone ampules with the oral tablets. She takes Nexium for her stomach about half an hour before the dexamethasone, but no one has suggested an anti-epileptic yet; I'll make sure to ask the doctor about that. It truly is a pity that she isn't accepting radiation, but the hospital wouldn't admit her, and honestly, Mom just can't deal with traveling back and forth in this sweltering 100-degree heat when she can barely walk. There's a new supervisor at the oncology department who refuses to listen to requests for hospitalization for palliative patients. To be frank, Mom is completely fed up with hospitals and all the running around, so we are doing everything in our power to make her life easier at home.

She’s entitled to medical transport from her house to the hospital and back—that’s something she needs to coordinate directly with her primary care physician. She should also weigh the radiation option carefully; if she reaches out now, she probably won't even be seen until September.
I’d suggest reaching out to palliative care to have them train you on how to administer the injections. Waiting around for them can drag things out and just cause unnecessary stress for everyone involved. It’s much more efficient if they just swing by once a week or come whenever you give them a call. In my experience, that approach works way better.
EDIT: When my wife was on dex, we never used anything higher than 0.5 mg, though I remember someone mentioning here a while back that they managed to find 1 mg doses. It might be worth checking around local pharmacies to see if that's an option. Since we're part of the European Union now, anything available over there should be accessible here too.

Angela Wright said:She is entitled to medical transport from home to the hospital and back, which you can arrange through her primary care physician. Perhaps she should consider radiation therapy? Even if she reaches out now, she likely won't be seen until September at the earliest.
You might want to reach out to palliative care to have them teach you how to administer the injections, because waiting around can be such an exhausting inconvenience for everyone involved. Maybe they could stop by once a week, or whenever you need to call them in? It seems like a much more manageable way to handle things.
EDIT: When my mother was on dex, we never used anything higher than 0.5 mg, though I remember someone mentioning here once that they managed to find 1 mg doses. It might be worth checking with different pharmacies to see if those are available. Since we are part of the global market now, everything available abroad should ideally be accessible here too.

Yes, I’ve already checked with several local pharmacies, and so far, nothing stronger than 0.5 mg is available; however, that isn't our biggest concern anymore since we plan to combine tablets with the injections. Regarding the medical transport, I am aware of the option, but Mom simply refuses to deal with any kind of fuss or logistical hassle, and if you understand me, it is incredibly delicate trying to persuade her to do anything at all... we are doing everything in our power to keep her comfortable at home. I realize, and she is slowly coming to terms with it, that there isn't much more help to be had; while radiation might offer some short-term relief, she is just so utterly exhausted that she’s losing her will, her strength, and her energy. Her only wish is to stay home surrounded by her family, and I respect that deeply. The only alternative I've turned to lately is using those mushroom supplements in her coffee, as I don't think they'll do any harm. Could you tell me, though, what the next steps are regarding the dex? It’s quite clear the dosage isn't going to decrease, let alone be stopped entirely. Thank you! 🤷

Has anyone seen VedranST lately?

rustyscout31, you either bump the dose up or scale it back by 2mg as needed. There’s no other way around it besides basically eyeballing how you're feeling. That’s what the doctors at the hospital told me. The absolute ceiling is 24mg.

Vedran posts on another forum too, so he finds it a bit exhausting having to repeat himself here.
Long story short, he managed to get approved for a new treatment plan using a medication he hasn't tried yet, and he’s hoping it actually works. He might have already started the first round.

That’s great news. I'm genuinely happy for him. I've been keeping an eye on this thread, and I truly wish him nothing but health and the best of luck—honestly, the same goes for everyone else here too.

Angela Wright said:rustyscout31 mentioned that the dose is increased or lowered by 2mg increments as needed. Apparently, there isn't a more precise way to do it than just estimating how things are going based on symptoms. That’s what they told me at the hospital. The maximum dosage is 24mg.

Vedran is actually posting on another forum too, so he finds it a bit exhausting to keep repeating himself here.
Anyway, he managed to secure a new treatment plan using a medication he hasn't tried yet, and he's feeling optimistic about how she might respond. It's possible he has already started her on it.

Thank you so much, dear! For now, she's staying at 12 mg. I did try to scale it back to 8 mg, but she ended up complaining about acid reflux and vomiting. So, she went right back to 12 mg daily. Yesterday, she was under palliative care and they were giving her injections. Her doctor mentioned that she could just take her full daily dose via an ampule immediately rather than doing the gradual tapering method. When I suggested that tapering might be better, he argued it didn't make much sense since dexamethasone works over time anyway. Well, I suppose she knows best, doesn't she?🤷

rustyscout31 said:Thanks, dear. She’s currently at 12 mg. I actually tried dropping her down to 8 mg, but she started complaining about severe heartburn and vomiting. So, we went back up to 12 mg daily. Yesterday she was under palliative care receiving injections. Her doctor mentioned she could just take her daily dose via an ampule shot immediately instead of doing the gradual tapering. When I pushed back and suggested tapering might be better, he basically said there wasn't much point since dexamethasone has a delayed effect anyway. Whatever, I guess she knows best.🤷

In my experience, the fluctuations in how this stuff works are just way too obvious. It was like this with my mother—she’d be sharp as a tack in the morning, but by evening, she’d start slipping, and those episodes would get much more intense, especially when the weather shifted. Looking around, it seems like everyone else is seeing the exact same thing.
I don't know, maybe try both ways and see what sticks.

Angela Wright said:In my experience, the fluctuations in how they work are just so incredibly obvious. It was always the case with my mother; she would be as sharp as a tack in the morning, but by the evening, she’d start losing her edge, and those lapses became much more pronounced, especially whenever the weather shifted. I'm noticing that many others seem to be having the exact same experience.
I suppose you could try both options and see which one works better.

That’s likely how it will unfold, isn't it? We'll keep a close eye on how things develop through Friday, and then we'll continue with the pills over the weekend. For now, my mother is still fully conscious, though I can really sense the shifts in her gait and her mood. Isn't it strange how someone can be unable to get out of bed in the morning, yet by the afternoon, they're singing away and constantly snacking? 🙂My little sweetheart only weighs about 115 pounds, and honestly, with my own struggles with irritable bowel syndrome, I feel like I'm slowly catching up to her health status... but let's not make this all about me right now. Thank you, Angela; I have a pretty good idea of what's coming next, especially since our palliative care doctor gave us such a gentle explanation today...

Angela Wright said:In my experience, the fluctuations in how they work are just so obvious. My mother would be perfectly lucid in the morning, but by the evening, she’d start losing her edge, and those lapses became much more pronounced—especially whenever the weather shifted. It seems like I'm not alone in noticing this pattern either.
I suppose it might be worth trying both ways just to see which works better.

That’s likely how it will play out, isn't it? We'll keep a close eye on how things develop through Friday, and then we can continue with the pills over the weekend. For now, my mom is still fully conscious, but I can really sense the shifts in her mood and how she carries herself. It's funny how one moment she won't even want to get out of bed, and the next she's singing away and constantly looking for a snack. 🙂My little sweetheart only weighs about 115 pounds, and honestly, with my own issues with irritable bowel syndrome, I feel like I'm slowly catching up to her... but let's not focus on me right now. Thank you, Angela, I think I have a pretty good idea of what to expect since our palliative care doctor gave us such a gentle explanation today...
😢

rustyscout31 said:That’s exactly how it’s going to go. We’ll watch how things develop until Friday, and then it’s back to the pills over the weekend. My mom is still fully conscious for now, but I can see the changes in her mood and how she carries herself. One morning she won't be able to get out of bed, and the next afternoon she’s singing and constantly wanting to eat 🙂 my little love; she’s only 110 pounds, and with my irritable bowel syndrome, I’m slowly catching up to her... but let's not talk about me right now. Thanks, Angela Wright, I have a pretty good idea of what's coming—our palliative care doctor explained it very gently today...
😢

Oh, my dear 😢, stay strong. You have more strength inside you than you realize. Just take it one day at a time; don't try to look too far ahead, or you'll just burn yourself out.
Make the most of this time while she's still herself. I wasted mine just staring at her in bed and draining myself dry 😢
Mom has an appetite specifically because of the dex. She’s going to start gaining weight soon because of how dex hits the metabolism. Fat will accumulate in her torso and abdomen, and her face will round out like a full moon. Her skin will become thin as paper, looking almost translucent. She needs regular skincare and hygiene (at least one full shower a week, plus daily sponge baths in bed).
With these doses of dex, you really need to monitor her blood sugar regularly because it messes with the pancreas, and she'll likely need something like Glucophage or Glucophage. Definitely ask the palliative doctor about that. I knew a famous guy whose husband fell into a coma—not because of a tumor, but because his blood sugar spiked uncontrollably from high doses of dex.

Angela Wright said:Oh, my dear 😢, please stay brave; you have so much strength inside you, even if you don't realize it yet. Just take things one day at a time and try not to look too far ahead, or you'll simply burn yourself out.
Try to make the most of this time while she is still herself by focusing on quality moments together. I unfortunately spent so much of my time just stuck in bed, feeling completely drained.😢
Mom’s appetite is really up because of the dexamethasone. She’ll likely start gaining weight soon because of how steroids affect the metabolism. You might notice fat accumulating around her torso and stomach, and her face might get that rounded, moon-like appearance. Her skin could also become quite thin, almost like paper, similar to what happens with certain medical conditions. It’s so important to keep up with her skincare and hygiene—making sure she gets a full shower at least once a week and stays clean daily while in bed.
With doses of dex like that, you really should monitor her blood sugar regularly since it can disrupt pancreatic function, and she might eventually need something like Glucophage to manage it. Please be sure to ask the palliative care doctor about this. I actually know someone whose husband fell into a coma, and it wasn't even because of his tumor, but because his blood sugar spiked so violently from high steroid doses.

Thank you so much, dear; your advice truly means the world to me and feels more helpful than everything the doctors have said combined. Sadly, these are the topics we have to face, though wouldn't it be so much nicer if we could all just sit around discussing kids, weddings, travel plans, and all those beautiful life milestones? But... BUT 😢 when it comes to Mom, my sister and I take shifts watching over her, or sometimes Dad or the grandkids join in; everyone who loves her is right there to cuddle her and care for her. Just the other day, I was even coloring her hair and doing her hair to make her feel pretty... we show her so much affection that she actually tells us to stop sometimes! She calls me her "little sweetheart"... she is home, surrounded by warmth and love, and we do absolutely everything just to keep her comfortable and pain-free. I've even started watching some foreign dramas while I sleep next to her, just so I can chat with her about the plot and who is doing what.🙂 We are living day by day; whenever she is in a bad mood, I feel it too, but every single smile she gives me feels like coming home. Still, I have to accept the reality that she is leaving us. Then there are the heavy, morbid details like arranging for a funeral plot, dealing with financial hurdles, or managing loans... oh, don't even get me started, you know what kind of crisis we are navigating. But regardless, I am doing everything in my power to ensure my mother lives with dignity, experiences as little pain as possible, and eventually passes away peacefully among the angels...

rustyscout31 said:Thanks so much, honey—honestly, your advice means more to me than everything those doctors say combined. I wish we could talk about better stuff, you know? Like kids, weddings, vacations, or anything actually fun, but... BUT 😢 Mom and I basically take turns looking after her—it’s either my sister or me, sometimes both. Dad, the grandkids, everyone who loves her—we’re constantly showering her with affection and keeping a close eye on her. Just the other day, I was even doing her hair and coloring it... we fuss over her so much she actually tells me to stop! She keeps calling me "my little sweetheart"... she’s home, surrounded by love, and we’re doing absolutely everything just to keep her comfortable and make sure nothing upsets her. I’ve even started watching those soap operas (since I sleep in the same room as her) just so I can chime in about the drama and keep her entertained 🙂 We’re just taking it one day at a time. If she’s in a bad mood, I feel it too; if she smiles, it feels like home. But I’m finally coming to terms with the fact that she’s leaving us. Then there’s the grim side of things—dealing with funeral arrangements, money stress, trying to manage loans... man, don't even get me started, you know how much of a crisis we're in right now. But I’m doing everything I can so my mom lives with dignity, stays out of pain, and eventually passes away peacefully among the angels...

I honestly have so much respect for how you guys are showing up every single day for your moms! It’s not easy, trust me, but down the road, you’ll have that peace of mind knowing you did everything possible to make things easier for her. We’ve been through this ourselves—that’s just life, I guess. You have to prepare for the end, if that’s even possible... the main thing is that Mom is happy, surrounded by her people, and living on her own terms. Hang in there... stay strong... cheers!

Hey everyone, I buried my dad today. It’s been such a blur—only two months since he got his diagnosis (gallbladder cancer with metastases). We didn't even get to chemo, and he wasn't a candidate for surgery, so they just put in a stent. Thankfully, he wasn't in pain, and right up until the end, he was still talking about planting an orchard. He had bouts of confusion, high fevers, and lost his appetite. I tried everything to make him comfortable and grant his every wish. Deep down, I knew the end was coming, but I kept hoping against hope. I knew it would be hard, but nothing prepares you for this... I miss him already, it hurts so much, and I just wish we had more time. I’d give anything just to hug him again, rub his back, or even have him give me one of those angry looks... anything. I haven't been on these forums long, but I've met some truly wonderful and brave people here. I'm rooting for all of you in your fights—don't let them win and stay by your loved ones' side until the very end. My days are just endless grief and tears, but then I try to hold onto the good memories...

Linda Patel21 said:I buried my dad today. It’s been such a whirlwind... just two months since he got his diagnosis (gallbladder cancer with metastasis). We didn't even make it to chemo; he wasn't a candidate for surgery, so they just put in a stent. He didn't have much pain, though. Right up until the end, he was talking about planting an orchard. He struggled with confusion, fevers, and losing his appetite. I tried to do everything for him. I knew the end was coming, but I still held onto hope. I knew it would be hard, but not like this... I miss him already. My heart is heavy. I just wish we had more time. To hold him, rub his back, even just to see him give me one of those grumpy looks... anything. I haven't been on these forums long, but I've met some truly wonderful, brave people here. I wish you all strength in your battles. Don't give up, and stay close to your loved ones until the very end. My days are just grief and tears, until the good memories start drifting back...

I'm sorry. Hang in there. 🙂

Mine passed 13 years ago, and the ache only gets heavier every year.

Linda Patel21 said:I buried my dear father today. It’s been only two months since he was diagnosed with gallbladder cancer that had already metastasized. We didn't even make it to chemotherapy; he wasn't a candidate for surgery, so they just placed a stent. Thankfully, he wasn't in constant pain, and until his very last day, he truly believed he’d be out there planting an orchard. He struggled with confusion, high fevers, and a loss of appetite. I tried so hard to grant him every single wish. Deep down, I knew the end was looming, but I kept holding onto that sliver of hope anyway. I knew losing him would be hard, but I never imagined it would feel quite like this... I miss him already. My heart is heavy, and I just wish we could have had a little more time. To just hug him again, rub his back, or even have him give me one of those grumpy looks—anything. I haven't been on these forums for very long, but I've met some wonderful, brave people here. I want to wish you all nothing but strength in your battles; don't let it break you, and stay by your loved ones' side until the very end. My days are just a blur of grief and tears, until I catch myself remembering the beautiful moments...

Please accept my deepest condolences.😢
I know how much this hurts. Honestly, no amount of time in this world would ever feel like enough to do everything you feel you missed. When it comes to our parents, there is always a deficit of time. 😢
Take pride in the fact that he was your father, and find peace knowing that when he passed, he felt loved and lived with purpose and hope. He’s in a better place now.
The days ahead will be heavy, but this mourning period will pass. Life moves forward—maybe it looks different than before, but that’s just how it works. Eventually, you’ll find yourself smiling through the memories of him.
Hang in there.

I honestly don't know how many more people have to die from cancer before someone actually finds a cure...
My father-in-law has throat cancer—he already went through a laryngectomy—and just a month ago he ended up back in the hospital with stomach pains. Turns out, the cancer metastasized to his liver and probably his pancreas too...
There’s basically zero hope left...
And my husband? He’s completely out of it, basically in a coma...
The old man is probably only aware of the fact that he's stuck in a hospital bed...
We haven't even told his wife anything yet. We know she won't be able to handle the news and we're terrified for her...
The doctors are waiting on an oncologist to decide if he can even handle chemo...but I seriously doubt it. He's way too weak and keeps running fevers. If they decide he can't do chemo, they're just gonna send him home...
The hardest part hasn't even started yet...:-(

Look, sorry if this is out of line, but does anyone know where I can pick some of this up locally? When people are fighting something this heavy, they need a little extra hope to hang onto, even alongside palliative chemo, right?

http://www.realnews24.com/soursop-fr...-chemotherapy/

Linda Patel21 said:My dear friends, I buried my wonderful dad today. It’s only been two months since his diagnosis—gallbladder cancer with metastases. We didn't even make it to chemotherapy; he wasn't a candidate for surgery, so they just placed a stent. Thankfully, he wasn't in pain, and until the very end, he truly believed he’d be out there planting an orchard. He struggled with confusion, high fevers, and losing his appetite. I tried so hard to grant him every single wish. I knew the end was near, but I still held onto hope. I knew it would be hard, but I never imagined it would feel quite like this... I miss him so much already. My heart is just aching. I wish we could have had just a little more time. To hug him again, rub his back, or even just have him give me one of those angry looks... anything. I haven't been on these forums for long, but I've met such wonderful, brave people here. I want to wish you all strength in your battles. Don't give up, and please, stay by your loved ones' sides until the very end. My days are just filled with sadness and tears, and then I try to remember the beautiful moments...

I am so sorry, 😢

My dad had his first round of radiation on the head this past Friday. During the day, he seemed fine, which really gave me a surge of optimism, but then I got the news this morning that he had a terrible night. He had intense headaches, was vomiting, and even lost consciousness once. 😢

I honestly don't know how to help with the nausea. I bought some cranberry juice for him to sip on for the next few days, and my mom is making him homemade chicken soup.
Ugh, this is only the first session, and there are nine more ahead of them.
My stomach just knots up whenever I think about what they're going through right now, especially since I can't be there with them.

Linda Patel21 said:My dear friends, today I laid my beloved father to rest. It has been a mere two months since his diagnosis (gallbladder cancer with metastases). We didn't even have time to start chemotherapy; he wasn't a candidate for surgery, so they placed a stent instead. Thankfully, he wasn't in pain, and until his very last day, he truly believed he would be out planting an orchard. He struggled with confusion, high fevers, and a loss of appetite. I tried my absolute best to fulfill his every wish. I knew the end was approaching, yet I couldn't help but hope. I anticipated this would be difficult, but I never imagined it would feel quite like this... I miss him already; my heart aches, and I find myself wishing we could have had just a little more time. If only I could hug him again, rub his back, or even have him give me one of those angry looks... anything at all. I haven't been on these forums for long, but I have met wonderful, brave people here. Therefore, I wish you all strength in your ongoing battles. Do not give up, and stay by the side of your loved ones until the very end. My days are filled with sorrow and tears, but then I find myself remembering those beautiful moments...

Please accept my deepest condolences. I am truly sorry, especially as I am facing the exact same reality. My mother is currently losing her battle with gallbladder cancer after exactly two years; it is a slow process now, and it is simply a matter of days. Unfortunately, she is suffering through severe pain and everything else that comes with it.