Posts by Elizabeth Collins60

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.

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You're right, Euglucon is incredibly outdated; there are plenty of much better alternatives, like Glurenorm or Glucobay, so I don't see why they won't just give it to her.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.

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:Go to the hospital and have her oncologist write a recommendation for Dexamethasone injections. Since she’s undergoing chemo, she’s registered as an outpatient at the day clinic, which means she’s entitled to free ampules that a home health nurse can administer (assuming you've managed to get one to come by every single day). Besides, 4 mg isn't exactly a massive dose; it can be taken orally. That would be eight 0.5 mg tablets daily. Just split them into two doses—one before breakfast and one before dinner. The only real headache is having to constantly run back to the primary care physician for new refills, since they can only write up three prescriptions for three boxes at a time.
Anyway, this whole business of stripping away the Dex while she's on Temodal is nonsense. My wife was taking as much as 24 mg a day at one point while she was on Temodal. Honestly, it’s infuriating that these doctors don't even know what they're doing themselves and then end up experimenting on patients. The hospital doctor keeps trying to tell us that Dex isn't a big deal and that the dosage can just be adjusted as needed, yet the primary care doctor last night was totally skeptical (just like my cousin, who is also a GP), claiming that a 16 mg dose could actually kill her. I mean, maybe she's right? But let's look at this through a palliative lens... at least her head won't ache, and she'll go out satisfied. Her days are already numbered anyway.🙂
We ended up buying those ampules at a private pharmacy because they aren't covered by insurance; they're strictly reserved for inpatient hospital treatment. Personally, I think my mother deserves intensive care given her condition, but the fact that there's no room for her in the hospital is a completely different issue. Her primary doctor was here last night and said she’d coordinate with the home health nurse to administer these Dex injections we purchased.
Lilac told me about a friend of hers—a doctor—who actually put a port in her own mother's arm just so she could administer it intravenously when things were getting really bad. We just have to figure out how to manage, whatever it takes.
To be honest, it hurts knowing this isn't exactly "legal," but is it any more legal to abandon these severe cases to fend for themselves and their families? Is it legal to lie and say Temodal shouldn't be used during a recurrence? And don't even get me started on the mountain of other lies we've encountered over the last two years...
Ultimately, everything depends on the goodwill of the home health nurses and the primary care doctors, who, by the way, are in a terrible position and subject to constant harassment from Medicare. Absolute savages.😠

As for me, following a brief vacation, I want to add that my father is also off the Dex injections and is currently taking it orally. As mentioned, 4 mg equals 8 tablets a day. It is simply not true that a primary care doctor cannot provide Dex ampules; they order them because they are on the hospital medication list, but either Medicare reimburses them, or you go to Medicare personally to get the money refunded—but the doctor's office gets denied by the higher-ups. You are entitled to a home health nurse, too; the problem is that most of these nurses just don't want to deal with giving injections. Speaking as a physician, I personally used to visit my patients every day to give them their injections, and for weekends, I'd leave them tablets. I had one patient who was taking as many as 32 tablets a day. These can be used long-term, though they spike blood sugar significantly, so you have to monitor that and sometimes introduce diabetes medication. There are plenty of side effects, but all of them are minor compared to the core issue we are treating. In short, the benefits far outweigh the harms.

wiredotter88 said:My mom is fighting cancer too! I truly understand everything you're going through and I hope you all find the strength to endure this!
If anyone knows of a medication or even just something to ease her peripheral neuropathy symptoms—the coldness, the tingling, the pain in her hands following chemotherapy—please, I am asking for help!

"After every storm comes the sun, and if the storm was particularly fierce, that beautiful weather
will last even longer!" "

The most recent thing I've learned regarding circulation—though admittedly not specifically designed for post-chemo recovery—is that PLETAL 100 mg is an excellent option. However, you can likely only pick it up at a pharmacy near Fifth Avenue (if you happen to be in Washington, D.C.). It was recommended by Professor Car from Mount Sinai Hospital.

I want to wish everyone an immense amount of strength. Lately, even I feel as though this struggle is the only thing that truly matters. I suspect those who are walking this path alongside us—specifically the young man... I mean, they likely have no idea how to actually help us, and they probably get lost in the sheer magnitude of this whole ordeal... if we can even call it that. My own energy is failing me... my hope is fading... and worst of all, I am terrified. I don't know why, but the fear is overwhelming... the fear of what comes next after everything else...
Angela Wright, we are all right there with you.
Sending kisses and strength to everyone!!!!!

Angela Wright said:It is good to see you here, as always.🙂
I hope you’re able to stay in some air conditioning.
I have blessed that device more times than I can count. Honestly, I think my mother would be dead without it.

Otherwise, her condition has taken a significant turn for the worse. She’s dealing with headaches, and eating has become an absolute struggle. The day before yesterday, it took me over an hour just to get her to eat anything—she kept pushing the meat to the side, and because I didn't catch on immediately, she actually started choking. I had to dig everything out of her mouth with my fingers at the last second, but she bit my finger so hard in the process that I saw stars. It is truly, deeply bad. She sleeps constantly; she rarely even opens her eyes. I fear a coma is imminent.

I am so sorry, dear, but please know we are thinking of you and sending you all the strength in the world... my father is also getting worse every single day... the headaches are there... he’s slowly forgetting things again, much like what happened three weeks ago when he slipped into a near-coma... when he wouldn't recognize anyone...
I wanted to mention this, though you probably already know, since your mother is struggling to eat... there are liquid supplements that act as complete meal replacements. They come in 250ml cartons and contain all the necessary nutrients—brands like Ensure Plus, Glucerna, and various others. You can even get them via prescription. They aren't a miracle cure, but they do provide some much-needed calories.
Thinking of you and sending a huge hug of strength!

slyseal28 said:I don't feel targeted; I just happen to disagree with your take... No hard feelings, obviously.
My point is simply that alternative therapies and conventional medicine ought to work hand in hand. And if we're talking about "alternative" approaches, wouldn't you agree that proper nutrition falls under that umbrella too?

At the end of the day, we're all just trying to find what works best for our loved ones. Some people swear by strictly conventional medicine and trust it implicitly. Others opt exclusively for holistic routes. Then there are those who believe a combination is the winning strategy. Who is actually right? It’s impossible to say. The bottom line is finding something to believe in so we can help ourselves and our families...

Regardless, I agree—what matters is having something to hold onto and helping our people in whatever way we deem most effective. Is anyone truly "right"? Honestly, it doesn't matter. What really matters is that we support one another through this... sharing our experiences, our fears, our hopes, and even our grief.
Sending big hugs to everyone.

slyseal28 said:I feel compelled to respond (without being angry):
I am not looking for "alternatives" to replace medicine; I am looking for allies to help my husband rebuild an immune system that conventional medicine has clearly compromised.

My husband completed six cycles of Doxorubicin and Holoxan. Following that, he underwent 27 radiation treatments plus 10 sessions using conformal technique. Next week, he begins a new chemotherapy regimen: Dacarbazin and Holoxan—cycle four.

Throughout his chemo, I supported him with propolis, a clean diet (plenty of vegetables and fruit, lots of fish, olive oil, and lean proteins like turkey, veal, and steak), and even took him to see a bioenergy practitioner. The result? His blood counts never once dropped to a concerning level. And the doctor? He fully expected his blood work to be terrible.

It is my belief that the combination of alternative support and conventional medicine is what pulled him through. I don't believe in strictly separating the two. In fact, I think they can only serve the patient when they work in tandem. So, I disagree with your assertion that alternative methods are only useful for prevention when we are healthy.

I certainly didn't intend for you to feel called out or forced to defend your choices. Eating well—consuming vegetables, fruit, and olive oil—isn't "alternative medicine." That is simply basic nutrition required every single day, not just when a crisis hits. As for bioenergy? I'm not entirely sure what that entails, but if it helps manage stress, then fine—though ideally, one would address stress before the illness arrives. When I say "no," I am not suggesting these things are harmful; I am simply pointing out that despite all these powerful "alternatives," people still die of cancer. It won't hurt, but does it actually help? Perhaps it mostly benefits those left behind, giving them the illusion of control so they can escape that soul-crushing sense of helplessness that eats at us daily. From a medical standpoint, the idea that cancer is merely a systemic reaction to some other imbalance is highly debatable. Cancer is, first and foremost, a disease, not a reaction... a fact documented in countless American medical textbooks. What we all know intimately here is that this is a brutal fight for every single one of us and our loved ones.

Ever since things took a turn for the worse, I’ve been here every single day. It’s where I find my strength, somehow. As Angela Wright says, you have to stay positive and be grateful for every extra day you get. Yesterday was brutal—I honestly had already played out the worst-case scenario in my head—but today? Today is actually alright. We’re sitting here at the Mayo Clinic, talking and laughing about old times. In fact, we’ve been doing this for a year and a half now. Ever since we got that diagnosis, we’ve spent an incredible amount of time together, grabbing coffee, going on trips... though lately, those trips are just walks down hospital hallways. She’s in the hospital now, but she goes home tomorrow... and if there isn't anything else to toast with, then we'll toast with this.
I’m noticing that everyone seems to be hunting for some kind of alternative cure. Speaking as a physician, I have to disagree. I don't believe all these various methods or special concoctions can offer much help once conventional medicine has run its course. They might make sense for prevention while you're still healthy, but in a situation like this?

You people are wonderful. Thank you, Angela Wright!!!!! I want to send a huge thank you to every single one of you dealing with similar struggles. It somehow makes the burden feel lighter knowing you aren’t walking this path alone. It is incredibly difficult for me because, unfortunately, I am also a medical professional. I have stared death in the face countless times while working to save others, yet here I am, forced to witness that same familiar suffering and pain within my own family. As a doctor, I know exactly what comes next and exactly how this unfolds—and yet, I am utterly powerless. How can one feel so disillusioned by their own profession?

Here is yet another miserable, broken soul struggling against this cruel disease within my own family. My father has been battling cancer for a year and a half now—chemotherapy, radiation, you name it—yet our brilliant doctors still can't even pinpoint where the primary tumor is located. Everything seemed fine until they suddenly discovered four metastases in his brain. How does one even cope with this? How am I supposed to accept the loss of the person who means everything to me? Help.