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

ruggedfox11, I am so incredibly sorry
I truly hope you’ve been able to find some way to forgive him, and more importantly, I hope you can finally find peace within your own heart.

Laura Lee78 said:She’s quite frail—she’s dropped nearly 65 pounds, and she's managing diabetes on top of everything else...
But I appreciate the advice; I’ll be sure to seek out his opinion.

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I also highly recommend Dr. Cepulic. We actually went to him when we were looking for a second opinion for my mother regarding her lung issues. On top of that, he’s been my aunt’s physician for years, so I can say with absolute certainty that he comes highly recommended.

Grace Ross20 said:ruggedfox11, I am just so incredibly sorry
I really hope you've been able to find some way to forgive him—and more importantly, I hope you can find some peace within yourself.

Thank you...
I was there, actually—I was right by his side when he took his last breath. There were lapses, things that didn't go quite right, but I honestly don't have the strength to go into all that right now... Someone once told me that "birds of a feather flock together," or rather, that one crow won't pluck the eyes out of another, which felt strangely fitting.
As for finding peace? That feels like such a mountain to climb right now. It's hard. I just can't wrap my head around the fact that he’s gone. Even just last night, I found myself waiting for him, or starting to talk to him as if he were still sitting there. For those first ten days or so, I managed to keep it together—just sort of moving through the motions—but lately, I feel like I'm completely falling apart in every possible way. I even went to see a therapist, but nothing they said seemed to hit the mark or offer much real comfort, so... I really don't know how I'm going to pull myself through this.

Xena, I’m actually in total agreement regarding Dr. Cepulic. I went to him myself to seek a second opinion for my father, though unfortunately, he wasn't able to offer much more than we already knew given his diagnosis (lung cancer with metastases to the liver and potentially the bones, which I only fully realized after Dad passed away)... As for St. Nedelj, getting a second opinion there was out of the question; they wouldn't even see us for a consultation because their policy is basically to stay out of other doctors' business. We weren't willing to take any risks by pulling Dad out of the hospital just for the sake of a different perspective. Besides, in his case, it would have effectively been a fourth opinion—everyone else had already reached the exact same conclusion. We even went as far as bringing in an alternative "practitioner," who turned out to be nothing more than a complete charlatan, naturally. If any of those other opinions had differed from the initial one, we would have hunted down a hundred more if someone promised a different outcome, especially since it seemed like the chemotherapy was working and he was tolerating it well, but sadly, that wasn't the reality... My thoughts are a bit scattered here, but to sum it up: yes, you absolutely should seek a second opinion.

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ruggedfox11, I know exactly what you’re going through. I’ve always considered myself a rational, resilient person—the type who can dig herself out of any hole without help—but losing my father absolutely broke me, both mentally and physically. It got to the point where I was nearly hospitalized myself, though I had the "luck" of arriving when they were overcapacity, so they basically treated me like an outpatient. Honestly, getting my head straight was what saved me, and while I did rely on medication to get there, I don't think there was any other way given how bad things were. I’ve since decided to taper off the meds on my own terms. It isn't easy, but once I started addressing the physical fallout—my thyroid actually developed nodules from the sheer stress—things finally began to feel manageable. I’ve survived the worst of it. I still have those moments where I instinctively "rush" to tell Dad about some win at work, only to be hit by the crushing realization that he’s gone, and I just fall apart. But lately, I find I’m able to pull myself together much faster after those breaks. Looking back, I am so incredibly grateful that I had this community and all the kind souls here during my father's illness; I truly don't know how I would have made it through without you all...

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Rachel Williams said:I also highly recommend Dr. Cepulic. We sought a second opinion from him for my mother (lung cancer), and since he’s been my aunt's long-term physician, I can vouch for him completely.

Thanks, I'm Googling him right now.

Robin Diaz4 said:Xena, I also recommend Dr. Cepulic. I went to him for a second opinion regarding my father. Unfortunately, there wasn't much more he could do given the diagnosis (lung cancer with liver metastases and possibly bone involvement, which I only found out after he passed)... As for St. Nedelj, we couldn't get a second opinion there. They wouldn't even see me for a consultation because their policy is not to take on outside patients. We didn't want to risk pulling my dad out of the hospital just for a second opinion. Especially since, in his case, it would have actually been a fourth opinion—everyone else had already reached the same conclusion. We even brought in an alternative "doctor" who turned out to be a complete fraud. Had any of those other opinions differed from the first one, we would have sought a hundred more if someone promised a different outcome, especially since it seemed like the chemo was working and he was tolerating it well, but unfortunately, that wasn't the case... This is a bit disorganized, but in short—yes, you should seek a second opinion.

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Reddit bolding: I called them the other day and they said a second opinion is fine, the price is $167 and it's doable, they just need me to email so they can find my records and call me back.
I'll check out Dr. Cepulic now...

Laura Lee78 said:Thanks, I’m actually Googling it right now.

**Bolded:** I gave them a call a few days ago and they mentioned there shouldn't be any issue getting a second opinion; the cost is $167 and it's doable, they just need me to email them so they can follow up with a call.
I'll check out what the situation looks like with Dr. Cepulic next...

Well, that's great news for St. Nedelj! I paid $233 for my consultations with Dr. Cepulic, which also covered subsequent follow-ups after finishing chemotherapy to determine which medications to start on next.

Does anyone know what works best for boosting blood counts after chemo, just to get everything back on track before the next round starts?
My white blood cell count was at 5.5 after the first session, but I guess everything else was sitting just a little bit below where it should be.

Joshua Kim69 said:What’s the best thing to take to fix blood counts after chemo before the next round starts?
My mom's white blood cell count was at 5.5 after the first round, but everything else was slightly below the recommended levels.

Both times, my mother stuck to a mix of grated carrots (1kg), apples (1kg), beets (1kg), and dandelion root—sweetened with two spoonfuls of honey. Whether it was twenty years ago or just three years ago, her blood work remained perfect during chemo. She would simply grate everything raw and eat it daily, sometimes more, sometimes less; on average, one batch would last her about four or five days.

Rachel Williams said:My mom used to make this mix of grated carrots (about 2 lbs), apples (2 lbs), and beets (2 lbs) with a little bit of honey both times she went through treatment. Even back then, twenty years ago, and again just three years ago, her blood work looked absolutely perfect during chemo. She’d just grate everything up raw and eat it every day—sometimes more, sometimes less—and one batch would usually last her about four or five days.

I’ve been juicing beets, carrots, and apples every single day, and I usually toss in some honey with propolis and some pollen too. He also drinks blackberry juice and green smoothies, but I can't help wondering if it's actually enough. His blood work was totally fine before the first round, but even though he’s been drinking the juice, it wasn't quite as perfect before the second series.

Joshua Kim69 said:I make him a blend of beet, carrot, and apple every single day, adding a touch of honey with propolis and pollen. He also drinks pressed blackberry juice and green smoothies, but I find myself wondering if any of this is actually enough. Before his first round of treatment, his blood work was absolutely perfect; yet, despite all these juices, things haven't stayed that way heading into the second round.

To be honest, what you're making is more of a syrup than a juice. When you juice everything like that, you're essentially throwing away most of the fiber along with a significant amount of the nutrients and beneficial compounds. Now, propolis and pollen are fantastic additions for anyone who can handle them. 🙂(My own mother can't tolerate anything but honey because her system reacts so violently to everything else.)
As for white blood cell counts, I suspect things like speck, garlic, and onions might help; so many patients swear by those. 😁

Rachel Williams said:Honestly, this stuff is more like a puree than a juice, since juicing usually ends up tossing out most of the fiber and a good chunk of the nutrients and healthy bits. I also think propolis and bee pollen are amazing if someone can handle them.🙂 (My mom can’t really do anything except honey because she reacts so strongly to everything else.)
I guess things like speckled trout, pork rinds, and onions might be good for white blood cell counts; I feel like so many people swear by those for that.😁

I suppose his white blood cell count and bilirubin were fine, mostly because he eats bacon or pork rinds along with garlic or onions every single morning.
I tried making a puree instead of a juice once, but he just didn't seem to take to it at all. Maybe I'll give it another shot.
On top of all that, we're also dealing with Candida issues.😢

Joshua Kim69 said:I suppose his white blood cell count and bilirubin were fine, considering he eats bacon or pork rinds with garlic or onions every single morning.
I tried making porridge instead of juice, but it just didn't sit right with him. I'll give it another shot.
On top of all that, we're dealing with Candida too. 😢

Uh... that's a mess. Honestly, I don't have any "ace up my sleeve" for this, especially since I've been battling it myself for years and I'm not even an oncology patient. Perhaps someone more intelligent or experienced will chime in with some actual advice.

How does Candida actually show up? My dad had some issues in his mouth, so he was prescribed this gel, but it completely cleared up within two days.

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Robin Diaz4 said:How does candidiasis actually show up? My dad had it in his mouth and was given some kind of gel that cleared everything up in just two days.

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If you can recall the name of that gel, perhaps Joshua Kim69 could look into it for us?

For most oncology patients, weakened immunity typically causes it to manifest in the throat, mouth, or gums. In our case—among non-oncology women—it most frequently appears in the vaginal area. There is an entire dedicated thread about this over on the women's health forum.

Robin Diaz4 said:How does candidiasis actually show up? My dad had some issues in his mouth and was given this gel that cleared everything right up in just two days.

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It usually presents as these thick, cheesy patches on the tongue and deep in the throat.
Soor.
The standard approach is treating it with a Rojazol gel—though some people find relief by rinsing with baking soda or even sparkling water.

Hi everyone, I have a few questions and could really use some help from this group. To give you the short version—my mom was diagnosed with stomach cancer. She went through surgery, followed by chemo and radiation, all of which wrapped up a little over six months ago. She’s had two follow-up appointments at three-month intervals, and after the second one, her oncologist told her to come back in six months. And that’s where we hit a wall.
The thing is, she’s still dealing with pain and other issues. Her test results aren't bad, but there were some things flagged during her ultrasound that have her worried. The problem is that whenever she brings anything up to the oncologist, he just doesn't listen. He ignores her questions, mostly leaves them unanswered, and barely even glances at her labs—sometimes he won't even open certain files. Naturally, she has zero trust in him now and wants to seek a second opinion.
I need some advice—what should we do, how do we go about this, and is it even possible at this stage? Should we just call a hospital and ask if she can schedule an appointment with an oncologist for a second opinion, mentioning the treatment she’s already completed? Does anyone have a recommendation for an oncologist? (She’s been doing all her treatment at Mount Sinai). I know it might seem a bit late to be asking this, but everything moved so fast when it first happened. We were basically in survival mode, trying to get everything handled immediately without overthinking it, but now we're in this position, and we all know how hard it is to actually get useful information out of the hospital system. I know Dr. Cepulic is always an option, but I'm looking for more ideas.
Hang in there, everyone. Wishing you all lots of luck and strength in your fights.

Rachel Williams said:If you can recall the specific name of that gel, maybe Joshua Kim69 could ask Dr. Smith to look into it?

I haven’t been replying much because the site hasn't been letting me log in over the last few days...

Look, I know how Candida typically presents itself; I was asking about a very specific case here—specifically whether it shows up in the mouth.
As it turns out, what my dad was prescribed was called GlaxoSmithKline. He had those exact same creamy patches all over his tongue and throat...

By the way, I went to check my dad's medicine cabinet to find the name of that gel, and seeing everything there just prompted me to pack up all his medications. I'm taking them to the doctor tomorrow so they can be used before they expire. It's a massive bag. Honestly, it's overwhelming. I didn't even include the supplements. This damn illness is relentless.

My husband actually saw an oral pathologist recently, and they prescribed him some GlaxoSmithKline, so he’s started using that now. On top of that, they recommended laser therapy for his mouth along with nine Neurobion injections, which we went ahead and picked up since they require a white prescription rather than a red one—it ended up costing a bit more than $33. It doesn't seem like it's just a simple case of thrush either; apparently, there's something else going on that's causing a lack of saliva and this burning sensation in his palate and throat, if I remember correctly, so he feels a little better if he just keeps a sugar-free candy or gum in his mouth. He mentioned that dealing with this whole situation and the treatment itself has been dragging on for 😢

Joshua Kim69 said:My husband actually saw an oral pathologist recently, and they prescribed him GlaxoSmithKline, which he’s been using now. On top of that, they recommended laser therapy for his oral cavity along with a series of nine Neurobion injections—we ended up buying those ourselves since they aren't covered by standard insurance and require a special prescription, costing upwards of $33. It isn't just a simple case of candida, either; there's something else going on that causes a lack of saliva and this constant burning sensation in his palate and throat (if I recall correctly)—which is why he finds it much easier to manage if he keeps a sugar-free candy or gum in his mouth. He mentioned that this whole situation, and the treatment itself, has been dragging on for quite some 😢

Why skip the sugar? You generally want to avoid sugar whenever you're dealing with candida. You might also want to ask your doctor about Caphasol (artificial saliva).