Resources and support for families dealing with cancer and serious illness

Elizabeth Collins60 said:Look, speaking as a doctor, I used to personally visit my patients every single day just to handle their injections, and then I'd leave them with tablets to get through the weekend. I had one patient who was taking as many as 32 pills a day. You can take these long-term, but they absolutely spike your blood sugar, so you have to monitor it closely—some people even end up needing additional diabetes meds because of it. There’s a whole list of side effects, sure, but honestly? None of them compare to the main issue we're actually treating. At the end of the day, the benefits far outweigh the downsides.

My mom was already struggling big time with her blood sugar before she started on Dex, and now things get pretty scary when her levels hit 27 despite the insulin. That is dangerously close to a diabetic coma... We try to keep the pill count as low as possible because our doctor warned us about the risk of stomach ulcers. We really can't afford that right now. And what's the deal with those home health nurses? How do you think they manage without doing injections? I don't get it! Isn't that literally one of the main reasons we need them in the first place??

Elizabeth Collins60 said:I’m back from a quick vacation, and I wanted to weigh in. My father isn't on Dexamethasone injections yet—just oral tablets for now. He's taking 4 mg, which works out to eight pills a day. It’s absolute nonsense to claim your primary care doctor can’t prescribe Dexamethasone ampules; they order them because they're on the hospital formulary, but then Medicare refuses to reimburse the clinic, or the patient has to go down to the Medicare office to get their money back. It’s just a bureaucratic headache where the insurance denies the doctor's claim. You also have every right to request a home health nurse, though the real issue is that most of those nurses simply don't want the hassle of administering injections. Personally, in my experience as a physician, I used to visit my patients every single day just to give them their shots, leaving them with tablets over the weekend. I had one patient who was swallowing 32 pills a day! You can stay on these long-term, but they spike blood sugar levels significantly, so you have to monitor things closely and sometimes introduce glucose medications. There are plenty of side effects, sure, but none of them outweigh the primary reason we use them. The benefit clearly outweighs the risk.

I hear you, Elizabeth Collins60. My cousin is losing her mind over this exact same thing. The fact that you two are actually decent doctors who prioritize the patient over the system—only to get slapped in the face for it—is a whole different level of frustration. If only my cousin were working in Washington, D.C., or if I were near her in Miami, we could just transfer her over there immediately.
It’s not like it’s easy for my dad and me to spend an hour or two at the clinic every single day just to grab a new prescription because she's having trouble swallowing pills. I’ve even tried crushing them into a mortar and pestle and mixing them into yogurt, but you never know if she’ll actually finish the whole serving and get the full dose.
Mom has been on Glucerna for a while now. I pushed for her to be put on Glurenorm to protect her kidneys and liver, which are already under a massive amount of strain, but the "brilliant" doctors shot me down. Honestly, I have no clue why she was prescribed such an ancient medication like Glucerna when there are so many modern, superior options available. Her blood sugar still spikes as high as 18.

brightgardener8 said:Mom was struggling big time with her blood sugar even before the Dex, and now things get scary when it spikes to 27 despite the insulin. That’s dangerously close to a diabetic coma. We try to keep the pills to a minimum because our doctor warned us about the risk of stomach ulcers. We really can't afford that right now. And what is the deal with those home health nurses? How do you think they manage without giving injections? I don't get it! Isn't that literally one of the main reasons we need them??

Look, my mom's nurse does give them, but the hospital doctor had to write a specific order for it to happen. Honestly, you know what? I've learned how to do it myself. Man, I feel like I've learned enough to pass the entrance exam for nursing school at this point. If a 16-year-old medical student can learn to administer an injection, we can handle it too. I'm willing to take on that responsibility. Giving an injection is the least of my worries compared to the mountain of other things I'm constantly wrestling with. My real fear is potential infections or E. coli. We've been keeping her on Ninur once a day for a while now because she actually laid there completely wiped out from an infection and couldn't get up. Between the blood sugar issues and the diaper changes, the risk is always there. She gets fungal infections down there all the time too, so I stay on top of that and jump in with Plimicol the second I see anything. I don't want anything bothering her that I have the power to prevent.

brightgardener8 said:Mom had massive issues with her blood sugar even before the Dex, and now things get critical when it spikes to 27 despite the insulin. That is dangerously close to a diabetic coma. We’re trying to keep the pills to a minimum because our doctor warned us about the risk of stomach ulcers. We really can't afford that right now. And what is the deal with those home health nurses? How do you expect them not to administer injections? I just don't get it! Isn't that literally one of the main reasons we need them??

And if you want my personal take from someone who’s actually been out there on the floor? Those field nurses aren't going to be handing out injections. I honestly can't tell if that's just how they operate or what the reason is.
What is it that they don't know? Or is it simply that they are afraid? In my own practice, I have four patients who refuse to cooperate—not one of them will listen, whether it’s my nurse or me personally. Fine, your mother is on insulin; that is perfectly fine. But with a blood sugar reading of 27? Believe me, you really ought to be adding TBL to the mix. In a situation like this, managing the A1C would actually be the lesser of two evils, and honestly, the conversation regarding A1C and blood sugar should have been the priority from the very beginning. I am currently treating a patient with glioblastoma who has been on Dexamethasone for six months. Let’s be clear: the side effects are definitely present—stretch marks, facial flushing, skin cracking—but how can anyone compare those to the actual battle we are fighting? Those issues are nothing. Of course, high blood sugar and an increased susceptibility to viral infections are two much more serious side effects because Dexamethasone impacts the immune system, but at least those are things we can actually manage somehow.

Angela Wright said:I know, Elizabeth Collins60, my cousin is losing her mind over this too. And look, the fact that you and she are actually decent doctors who prioritize the patient over the bureaucracy—only to get slapped in the face for it—is a whole different issue. If my cousin were in Washington, D.C., or if I were out there near her or even in Miami, they could just transfer her to her care.
It isn't even just about the medicine; my dad and I end up spending an hour or two at the clinic every single day just to get a prescription because she’s finding it so hard to swallow pills lately. I’ve even resorted to crushing them in a mortar and pestle to mix into yogurt, but you never really know if she’ll manage to finish the whole serving and actually get the full dose.
Mom has been on Euglucon for a while now. I actually asked if they could switch her to Glurenorm to protect her kidneys and liver, which are already under enough stress as it is, but the "brilliant" doctors told me no. Honestly, why on earth was she put on such an ancient medication like Euglucon when there are so many newer, superior options available? Her blood sugar still spikes as high as 18.

You're right, Euglucon is incredibly outdated; there are plenty of much better alternatives, like Glurenorm or Glucobay, so I don't see why they won't just give it to her. As for the injections, they aren't exactly rocket science; you just have to watch a few specific things and it's fine.
Kudos to you for caring this much. All this devotion will come back to you somehow one day.

Ryan Fisher64!!!!
My heart truly aches for you.
Please know that you aren't alone in this grief and pain; there are so many of us thinking of you, even when you least expect it. A HUGE HUG AND KISS.

Mom started her first cycle of Temodal today—245 mg. She’s feeling super nauseous and keeps throwing up. Does anyone have any advice on how to help her out? Angela Wright, do you know anything about this? I'm stuck at work right now and honestly don't know what to do. She already took some Reglan.
Back when she was taking Temodal for 42 days straight, she only felt sick once, and I'm not even sure if it was actually the meds or just because she got worked up after the woman sharing her hospital room passed away. But keep in mind, that was a much lower dose—only 125 mg.
Help!

First timer on this forum. My nephew was diagnosed with acute lymphocytic leukemia back on December 24, 2002. He went through absolute hell with treatments when he was three, but he beat it. He was finally supposed to start school this year now that he's seven. But then Monday rolled around for his routine checkup, and the labs showed the leukemia is back—even though it hasn't hit his blood counts yet. He’s in the hospital today, and it looks like he'll be heading toward a bone marrow transplant after this round of therapy. I just need to know if anyone here knows of even one case where a kid fully recovered after a relapse. All we ever hear are the grim prognoses. I want to help my sister, give her some actual hope and comfort, but right now, I'm flying blind.

brightgardener8 said:Mom started her first cycle of Temodal today—245 mg. She’s feeling nauseous and throwing up. Does anyone have advice on how to help her? Angela Wright, do you know anything about this? I'm stuck at work and feeling totally lost. She already took some Reglan.
When she was on Temodal for 42 days straight, she only felt sick once, and honestly, I'm not even sure if it was the meds or just the stress from when the woman sharing her hospital room passed away. But keep in mind, back then she was on a much lower dose—only 125 mg.
Help!

My mom only threw up about three times during her entire Temodal cycle. She never touched Reglan. If you ask me, she owes it all to taking Native Propolis in heavy doses (3x5 capsules, 30 minutes before meals) starting a week before radiation, combined with Noni (ten per day, split into three doses, also 30 minutes before eating). It's still a massive mystery to me because she always had an incredibly sensitive stomach. Any little cold would send her running to the Restroom to vomit. She dealt with gastritis constantly, which also ended with her at the Restroom.
I’d suggest trying some peppermint tea. Whenever I messed up my stomach as a kid, my late Grandma used to brew homemade mint tea, and I vividly remember the instant relief it provided. That's what just popped into my head. Another good trick is to crush up some flaxseed, pour a glass of lukewarm water over it, and let it sit for an hour or two. It releases a mucilage that works wonders by coating the stomach and intestinal walls, which stops them from being so irritated.

Aaron Johnson29 said:I’m new to this forum. My nephew was diagnosed with acute lymphoblastic leukemia back on December 24, 2002. He went through absolute hell with treatments when he was only three years old, but he beat it. This year, he was supposed to finally start school at seven years old. But during a routine checkup this past Monday, his labs showed the leukemia is back, even though it hasn't hit his red blood cell count yet. He was admitted to the hospital today, and it looks like he'll likely need a bone marrow transplant after finishing therapy. I just want to know if anyone here knows of even one case where a child fully recovered after a relapse? All we hear are terrible prognoses. I just want to be there for my sister, give her some hope and comfort, but I don't even know how.

Listen, there is always hope.😘 You just have to take it one day at a time and refuse to let negativity take root—stay positive. If that little boy could kick this evil out once before, he can do it again; he’s bigger and stronger now. And thank God the doctors caught it right when they did, seeing as it hasn't even touched his red blood cells yet.
You’re going to run into a wall of grim predictions on this forum regarding our loved ones—cases where people are considered miracles just for being alive. Ignore the prognoses and the statistics. You have much more important things to do with your energy than obsessing over numbers. That little fighter needs you to be his rock; he needs to feel that everything is going to be okay, that this is just a hurdle he has to clear so he can go off to school with his friends like any other kid.
Hang in there and live one day at a time. This will pass, and things will be alright again.😳

Thanks a ton, Angela Wright, for the kind words. It feels like everyone around here just totally ignores us or thinks our concerns are some kind of joke, so hearing this from you really means a lot. Thanks!

brightgardener8 said:Mom started her first cycle of Temodal today—245 mg. She’s feeling nauseous and keeps throwing up. Does anyone have advice on how to help her through this? Angela Wright, do you know anything about this? I’m stuck at work and just don't know what to do. She already took some Reglan.
Back when she was taking Temodal for 42 days straight, she only felt sick once, though I’m not even entirely sure if it was actually the medication or just because she got worked up after the woman sharing her hospital room passed away. But even then, we were talking about a much smaller dose—only 125 mg.
Help!

Someone on this thread (I can't recall who exactly, but thanks a lot)👍 mentioned popcorn.
It actually helps my mom.
Supposedly they should be unsalted and oil-free. Honestly, during the really rough patches, even those stinky ones you cook in the microwave worked just fine. Even those helped her out.👍

Melissa Kim45 said:Someone on this thread (can't recall who, but thanks a lot)👍 brought up popcorn.
It really helps my mom.
Supposedly they need to be unsalted and oil-free. Honestly, back when things were getting crazy, even those stinky ones you pop in the microwave worked fine. They helped too.👍

You can find those air poppers at Pevac—they use hot air instead of oil and run about a hundred bucks. It might actually make a difference.

Aaron Johnson29 said:It’s my first time posting here. My nephew was diagnosed with acute lymphocytic leukemia back on Christmas Eve, 2002. He went through absolute hell with treatments when he was three, but he beat it. This year, he was finally supposed to start school since he's turning seven. But, during his regular checkup this past Monday, the labs showed the leukemia is back—even though it hasn't hit his blood counts yet. He’s in the hospital today, and they'll probably look into a bone marrow transplant after therapy. I just need to know if anyone knows of even one case where a kid fully recovered after a relapse? All we ever hear are terrible prognoses. I just want to be there for my sister, give her some hope and comfort, but I honestly don't know how.

Hey Aaron Johnson29, hang in there. My brother was diagnosed with leukemia three years ago, and our whole family went through the wringer with him—full treatment cycles, bone marrow transplants, the whole nine yards. So, if you need to ask anything, just go for it. I don't want to freak you out, but my brother did pass away from this horrible disease. His was a different type, though; the doctors thought the rapid cell growth during puberty caused everything to spiral out of control. I still remember the doctors telling us things might be easier if he were younger. Basically, they said the chances for recovery and getting back to a normal life are way higher for younger patients (kids), hovering somewhere around 80%, which is actually a pretty high percentage.🙂 😘

rowdyraven6 said:Listen, Aaron Johnson29, just hang in there. My brother was diagnosed with leukemia three years ago, and we walked him through the entire gauntlet—every single round of chemo and the whole bone marrow transplant process. If you need to vent or ask anything, I'm here. I don't want to freak you out, but I'll be straight with you: I lost my brother to this damn disease. His case was different, though. The doctors thought the rapid cell growth during puberty triggered a massive spike in those malignant cells. I still remember the doctors telling us that things might go smoother if he were younger. They basically said the odds for a full recovery and getting back to a normal life are much higher with younger patients—kids, mostly. They put the success rate somewhere around 80%, which is actually pretty high. 🙂 😘

Thanks for letting me lean on you, because honestly, I don't know who else to turn to. What’s really keeping us up at night is the idea of a relapse. Since you've been through the wringer, do you know if a recurrence affects how well a bone marrow transplant works? It's a silver lining that my sister had her second son, so they harvested stem cells from the umbilical cord when he was born. But we're spiraling wondering if the fact that the disease came back changes the math on whether the transplant will actually fix things.

Aaron Johnson29 said:Thanks for letting me ask because I honestly wouldn't even know who else to turn to. What’s really spooked us is the whole idea of the disease coming back—so if you happen to know, does that change anything regarding how successful a bone marrow transplant will be? I guess it’s a silver lining that my sister had her second boy, so they were able to collect stem cells from his umbilical cord at birth. But we're just sitting here worrying... is there actually a difference in the healing process when you're doing a transplant because the illness returned?

Hey there, Aaron Johnson29. Look, based on what I've seen, I can tell you with total confidence that you guys have a really solid shot at everything turning out okay. Honestly, just having those stem cells ready to go already feels like the problem is about 45% solved. I knew this one little guy who was being treated at the exact same time as my son (about a year ago), and he actually had a relapse too. After the standard therapy, he got his sister's stem cells, and now? He's just a normal kid heading into second grade with zero issues.
Which hospital is your nephew at?👍

Rachel Phillips9 said:Look, Aaron Johnson29, from what I've seen, you've got a solid shot at things turning out fine. Honestly, since you already have the stem cells ready, you're basically halfway there. I know a kid who was going through the exact same thing as my son about a year ago; he had a relapse, but after the standard treatment, they used stem cell therapy and now he’s just a normal second grader with zero issues left.
Which hospital is your nephew at?👍

They're at Mayo Clinic. I'm just hoping it works out, especially since my nephew is physically holding up well right now and seems to be handling the mental side of this better than most. Smart kid. He takes after his aunt.

Aaron Johnson29 said:They’re at Salisbury. Honestly, I’m just crossing my fingers that my nephew stays physically strong through this—and more importantly, that he’s handling the mental side okay. He’s a smart little guy, just like his auntie.

I really think physical strength matters, sure, but man, the mental game is even bigger. It's crucial that he doesn't feel this weight—you know, those "how?" and "what if?" questions—or start thinking that YOU guys aren't totally confident everything is going to work out. We're still seeing Professor Horse regularly, and honestly, I have so much respect for him and Bilic. So, what was the actual diagnosis? Was it AML or ALL?

Rachel Phillips9 said:I honestly think physical health matters, sure, but man—the mental state is even bigger. It’s so important that they don't feel this crushing weight of "how?" or "what if?" or "where do we go from here?" You really don't want them thinking you aren't 100% confident that everything is going to turn out fine. We actually still check in regularly with Professor Horse—I have so much respect for him and Bilic. By the way, what was the diagnosis again? Was it AML M7 or ALL?

My bad, totally missed this!!

Hey everyone, his doctor is Rajic, but she’s actually on vacation right now, so he's seeing Feminić instead.