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Resources and support for families dealing with cancer and serious illness in Health · Mar 10, 2008

Linda Peterson37 said:While he was in the hospital, they were giving him mannitol, but since he got discharged a week ago, he hasn't been getting any because the discharge papers didn't say anything about continuing it.
It’s all a bit blurry to me. My mom is actually heading to the doctor today to see if we can just administer this at home... I mean, is that even an option? We’re total amateurs here, and the doctors aren't saying much, so we don't even know what we should be asking or what needs to be given... the discharge summary just left us hanging on whether to continue or not.😕

From what I understand about this whole mess, patients with brain tumors stay on dexamethasone throughout the entire illness—basically as long as there's edema present.

My mom has been on dexamethasone for about a year now, with just a few short breaks.
At first, we had to drive her to the clinic every single day for shots, but six months ago, she finally qualified for a home health nurse to come by and handle the injections.

But guess what? Today I got word that Medicare rejected her!!! Yeah, apparently she doesn't qualify anymore. 😠
What does that even mean for a single board (🙂) when you're dealing with a woman who has glioblastoma, who's been living with the diagnosis for a year, is incontinent, barely mobile, completely disoriented, and suffering from dementia...? Sure, she can just waddle over to the clinic herself for her shot, right?

I'm filing an appeal tomorrow. Honestly, I don't know what else to do.

Resources and support for families dealing with cancer and serious illness in Health · Mar 6, 2008

restlesscanyon16 said:...The recurrence is inoperable, so they suggested whole-brain radiation plus Temozolomide. But honestly? The doctors aren't optimistic at all. In fact, since Medicare won't cover Temozolomide for this specific grade of tumor, the doctor straight-up told us we're just throwing money down the drain—and we're talking about a massive amount of cash here—because he doesn't think the treatment will even work anyway. 😲😲

We’ve dealt with glioblastoma (grade 4) in our family, and during a chat with my mom's oncologist, she mentioned that Temozolomide actually works better on astrocytomas than on the type of glioblastoma covered by Medicare.
That’s just what I've gathered from what we went through.

Resources and support for families dealing with cancer and serious illness in Health · Mar 4, 2008

casualpanther1 said:Hey to all the fighters out there and their families,

Today marks 18 months since my wife was diagnosed. Thank God, she’s been her usual self through all of this. I honestly don't notice anything out of the ordinary. We're just keeping things positive and refusing to let ourselves get weighed down by thoughts about the future—a future that (for both of us) I know will eventually come.
Thanks to everyone who keeps pushing us to fight and shares practical advice on how to deal with this disease.

Best wishes to everyone, stay strong.

I really want to believe that kind of dark future won't happen to you guys. Why shouldn't it be possible to avoid that? I truly mean that.

It's actually been a year since my mom got her diagnosis this month. Man, where does the time go?

As for indigo22 and emilli, honestly, I think it's better to just completely ignore them rather than even trying to talk to them. It just feeds their egos. If nobody reacts, they'll eventually just drift away on their own. ☕

Resources and support for families dealing with cancer and serious illness in Health · Mar 3, 2008

Alright everyone, sorry, I’m going to pivot away from the weekend discussions for a second...

Ever since my sister was reading Blaise's post over the phone on Friday night just to give us all a good laugh, I've been waiting for Monday to check back in (yeah, yeah, I'm stuck without internet at home because of AT&T, so I'm just waiting for the next provider to show up on my street).

So, as of Friday, my mom and I are officially roommates.
Even though we just moved from one neighborhood in the city to another, Mom acts like she just relocated to rural Memphis... or maybe Afghanistan... depending on how you look at it!
When she watches the news and sees men carrying weapons, she turns to me and asks if there’s any "unrest happening around here" too...😲

She stares out the window and tells me she really thought being on the 4th floor would give her a better view of the Mississippi River.

I even got a compliment because she thinks the choir and orchestra playing in my living room is way better than what she had back in her day, since some program called "my player" or whatever was on TV...🤣

We’re slowly learning her specific language and her weird way of making associations; sometimes I catch myself having an "aha moment" after a few hours because I finally realize what she actually meant by some nonsensical thing she just blurted out.

And honestly, no matter how heavy and serious things get, my sister and I ended up laughing so hard with Mom several times this weekend.

I want to say to anyone who is sick, or whose loved ones are sick, but still has their wits about them: be happy about that. I don't mean to diminish anyone's pain, but this combination of physical and mental decline is truly one of the worst things a person can go through.

On the flip side, with almost every type of cancer, you deal with the physical pain and the crushing awareness of the diagnosis, the bad prognosis, and the weight of the situation—but that isn't the case with Mom, so sometimes I think maybe it's actually better this way.🤷

I stumbled upon a great old post by Angela Wright. Thanks again for the advice; everything you said is spot on.

Angela Wright said:I know that feeling of helplessness, constantly asking yourself if you did everything you could. I think the best thing is to just be who you've always been and try to keep daily life as normal as possible, as much as you can. Treat the illness or the treatment like a chore you just have to get done, and never, ever show despair or tears to the disease itself. When you truly feel weak, go into the bathroom, turn on the shower, grab a pillow, and scream into it. Screaming used to release me. Afterward, I’d feel peaceful and just lighter inside.

Resources and support for families dealing with cancer and serious illness in Health · Feb 29, 2008

Sandra Martin60 said:Look, I’m not embarrassed. Honestly, I’ve dealt with plenty of people in my own circle who were battling cancer, and I tried everything in my power to help them. But they were so blindly devoted to their doctors that there was nothing more I could do... and now those people are gone. I didn't ask this to be awkward; I asked because I want to know how everyone else actually thinks about this.

So, what does "helping" actually look like in your case? Were you specifically trying to offer alternatives to standard medical treatments?

Resources and support for families dealing with cancer and serious illness in Health · Feb 25, 2008

Grace Fowler said:Hey there, my dear friends! pozdrav din!

There aren't any malignant cells to worry about... Sincerely, Vasa din TOOOOOOOOOOO

Vasa din TOOOOOOOOOOO, Grace Fowler!🙂

Resources and support for families dealing with cancer and serious illness in Health · Feb 22, 2008

electrictinker40 said:please help me, I have no idea what to do

First off, hey there. I’m really sorry you’ve ended up having to search through forums like this, but here we are.

If you can manage it, try to read through as many posts in this thread as possible; you'll find plenty of answers in there.

Also, check out www.mayoclinic.org. You'll find a ton of solid data regarding specific types of cancer there.

We're all hanging out here for pretty much the same reasons.
Hang in there!🙂

Resources and support for families dealing with cancer and serious illness in Health · Feb 20, 2008

Melissa Kim45;12721846 said:
On top of everything, it looks like I’m moving in with her. 🙂 😁 Do I even need to tell you guys how much of a gut punch that is?😁

😁 It’s not like I don’t get where you’re coming from...
Things are pretty much the same way over here. My mom’s health has taken a massive dive, so I decided to move in with her. But thanks to some ridiculous stroke of bad luck—and because her place is all the way across town while mine is just a ten-minute walk from my job, plus my sister lives right around the corner from me—we actually decided to move Mom into my apartment instead. Great, right?
I have zero clue how this is going to work out, but we have to give it a shot. We don't really have an option. The two of us are just going to try to tag-team things so we can at least try to stay sane.
My biggest fear is the nights and the lack of sleep, because Mom gets up several times throughout the night and... well, she makes a mess everywhere, especially around the bathroom.

You mentioned you have a caregiver watching her while you're at work. Who was looking after her during the afternoons???

Resources and support for families dealing with cancer and serious illness in Health · Feb 19, 2008

Where did all the old-school forum regulars disappear to? Like Dandelion, Blaise, Dina, or Amy Hayes28...???
Maybe they moved over to the association's website... I honestly don't have the bandwidth to keep up with everything lately.

Resources and support for families dealing with cancer and serious illness in Health · Feb 19, 2008

cosmicridge5 said:velvetgull9... 🙂
My parents have been separated for a while now, and I actually live at a different address myself, but throughout my whole childhood, he was always the one I was closest to.

Trust me, you aren't the only one dealing with this—there are plenty of us here. My situation is just flipped; my mom is sick, and she’s the one I was (and am) close to.
Everyone has already told you that we’re all walking the same path, dealing with the exact same doubts, fears, and realizations. You're going to go through different "phases" of processing this, and eventually, you'll accept it. You don't really have a choice in the matter.
Do yourself a favor and scroll back to the very beginning of this thread; you'll learn a ton from what people have shared.
I actually printed out most of them and keep them at home like a book. Every once in a while, I look back at how someone else reacted, and it helps me realize that I'm going through the exact same things.
The only difference is this "technical" side of the struggle...

At the end of the day, you're the one who stays. And you can't afford to take your own life for granted. You only get this one shot.

Resources and support for families dealing with cancer and serious illness in Health · Feb 19, 2008

Angela Wright said:Hey everyone, we’re heading down to the state capitol next week to actually talk to our representatives.
Drop all your biggest concerns in your posts—what should we be asking them? What issues do we need to shove right under their noses as our top priorities? I’m really hoping we can get some actual traction on at least a few of these things.

For example, will there ever be a real network of palliative care facilities here in the US for those facing terminal illness? Or maybe even dedicated medical teams that provide actual home care for the sick (I'm not talking about someone swinging by for twenty minutes once a day). That’s what’s weighing on me right now; nothing else is jumping out.
My new ID card finally arrived! 🙂

Resources and support for families dealing with cancer and serious illness in Health · Feb 7, 2008

Hannah Thomas28 said:I saw the news report!

Ana74, it's been forever! How have things been on your end? How's your mom doing?

Big hugs, Din !!! So glad you're back.

Resources and support for families dealing with cancer and serious illness in Health · Feb 4, 2008

Anonymous said:My mom passed away this morning at 10:05, just three and a half months after her diagnosis...

I am so sorry, The One. Sending you my deepest condolences.

Resources and support for families dealing with cancer and serious illness in Health · Jan 28, 2008

gentlemoose62 said:So, I just have to share some amazing news with all of you. I went in for my ovarian cancer follow-up, and everything is PERFECT! My doctor actually told me we can move to once-a-year checkups! Can you believe that? Once a year! If anyone had told me that seven years ago, or even after my last relapse four and a half years back, I would’ve thought they were just being nice to spare my feelings.
But seriously, it’s real, I’m not dreaming—CURE is possible, even after a relapse.
My doctor literally said, "You can consider yourself cured," and that's the first time I've ever heard someone be that bold about it.
I really want to use my story to encourage everyone else out there fighting this. No matter what happens next, you can never, ever give up!
And finally, I want to dedicate these last words to our biggest warrior, Dina, who is currently recovering from surgery.😁Dina, all our thoughts and prayers are with you—please let us know when you have some good news!

Way to go!!!

Sending love to Dina too—hope she checks in with us soon.

Resources and support for families dealing with cancer and serious illness in Health · Jan 28, 2008

Melissa Kim45 said:Results look good. Next checkup is in a month. 🙏

Melissa Kim45, I'm really glad to hear the results came back okay.
Honestly, you guys were even being talked about over lunch here this past Saturday. 😁
Tell your mom I said hi—she's becoming a local celebrity. Don't take that the wrong way, but we could really use the laugh right now.

We’ve got our own set of "moments" too... I can't even begin to explain it properly, so I won't even try. It's not exactly hilarious, but...
I let my mom hang out the laundry on Sunday (she’s always trying to feel useful and stay busy), and I left her to it. Man, what a sight that was... A photo would have been much more descriptive. It was like watching a scene straight out of a sitcom. 🙄 And heaven forbid you actually tell her she can't do something...

Resources and support for families dealing with cancer and serious illness in Health · Jan 25, 2008

Unfortunately, there isn't much good news on our end today.😢
Last week's MR shows the tumor is progressing, and a massive area of the brain is dealing with edema, post-radiation glioma, necrotic tissue... the whole works.

I'm trying my best not to spiral. Like Angela Wright said once, what we saw on today's scan is already physically there—the report itself doesn't change reality.
The main thing is that Mom hasn't had any sudden, drastic shifts; those usually creep up on you slowly until you just get used to them and they start feeling "normal."

I looked into DCVax, and the word is that it's not an option here in the States. There have been cases abroad where people tried it—for tens of thousands of dollars!—but unfortunately, the outcome remains the same. I’m mentioning this specifically regarding glioblastoma, just so nobody else here gets their hopes up unnecessarily.

George, I am so sorry for what you're going through.

casualpanther1, I'm rooting for you guys to stay one step ahead of this glioblastoma!

Resources and support for families dealing with cancer and serious illness in Health · Jan 18, 2008

Grace Fowler said:Hey everyone!!
Just checking in before I head out—I actually have my surgical residency interview tomorrow....
I'll be back with updates soon..

Dina, good luck!!!!!

Resources and support for families dealing with cancer and serious illness in Health · Jan 17, 2008

casualpanther1 said:First off, my heart goes out to everyone who has lost someone close to them.
I haven't been able to dig up anything regarding DCVax-L in Europe yet, but if you check this site: http://www.clinicaltrials.gov/ct2/sh...forme&rank=33; you can see the specific criteria for getting into the clinical trials for that glioblastoma drug here in the US. It looks like they're targeting patients who have already had surgery and finished Temozolomide. I'm assuming they'll follow the same playbook in Europe if it ever makes its way there...

Bendamustine, how did the surgery go? Is everything okay?

Regarding that vaccine, I asked my mom's doctor about it, but he just mumbled something vague and wouldn't give me a straight answer.
The truth is, he won't tell me anything until we get back with the new scans. We had the MRI done today, so once I have the images in hand next time, maybe I'll be able to squeeze some actual information out of him.

Resources and support for families dealing with cancer and serious illness in Health · Jan 15, 2008

Laura Kelly91 said:Hey everyone,
I’ve been away for a while. Unfortunately, some really bad things happened. My dad passed away on January 10th...

Mary, I am seriously so sorry about your dad. I can't even wrap my head around what you're going through, especially having to face this twice. Hang in there, okay?

Resources and support for families dealing with cancer and serious illness in Health · Jan 6, 2008

Angela Wright said:Listen, that high blood sugar is happening because of the dexamethasone. It’s driving those numbers up. A sugar level of 30 is incredibly high—we're talking coma territory here. You absolutely need to ask them to give her some glucose tablets, even if 30 is already high enough to warrant insulin. Give Vuk Vrhovec a call and get some advice on how to handle patients like this whose blood sugar is totally haywire.

And here I was thinking my mom's 17 was way too high.🙄 She was taking Eglukon.

Look, we all know dexamethasone spikes your sugar, but there were times when Mom was on a higher dose and her levels stayed lower just because she was being more sensible and staying away from the junk. Now? We can't win. Food has become an obsession for her. If we try to step in, we end up looking like the big bad bullies, like we're literally taking away her oxygen. That's how she perceives it.
She’s on insulin three times a day, and regardless, she still manages to push her sugar up to 30...
It’s just this endless battle with her, and honestly, there’s no way for us to come out on top.🤷