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Support resources for families dealing with cancer and other serious illnesses

Started by James Cox6 · · 👁 83 views · 3.9K replies

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Participants James Cox6Lisa White54shadowmason6Angela Wrightbrightgardener8Melissa Moore39James Martinez3Grace Stewart6Megan Fowler78Zachary Howard2Ashley Rodriguez41Douglas Lee13rowdyheron17placidheron24slyseal28jadesailor14Michael Newman3jadetinker42Benjamin Grant6wanderingharbor61cosmicviper76Dana Baker37Jason Torres5Peter Chavez6 …
Austin Miller49 Austin Miller49 Newcomer
1 message
joined Jun 2009
#701 ·
Dear Casey Palmer5!

Your news really hit me hard... I am truly sorry to hear that.
And regarding what you said the other night (before everyone headed home), you were absolutely right!
By this Friday, it will have been two months since I lost my love.
Diagnosis: testicular tumor; outcome: the same.

As time goes by, everything feels a bit heavier... and I feel more alone. Life can be quite cruel sometimes.

Sending you a hug and a little extra strength.

(p.s. just so you know, I usually go by SanjaS on this forum)
Lisa Ross14 Lisa Ross14 Member
26 messages
joined Dec 2006
#702 ·
Hey everyone... I haven't been around here for a while—mostly because I just didn't have the energy to keep reading through all the bad news.

My mother passed away yesterday after a six-month battle with glioblastoma. To make matters worse, she had already dealt with Stage 3 breast cancer, and then just a month ago, things took a turn for the worse with multiple metastases in her lungs...
Honestly, the stuff I’ve been looking at over the last few days—the kind of things I wouldn't wish on my worst enemy—makes me see her death as a release. Like a beginning rather than an end...
Sadly, I think that's something only people who have walked a similar path can truly understand...
But if there's one silver lining from this short, brutal period, it's seeing who your real friends are. As for our absolute disaster of a healthcare system and everything we had to endure? I could probably write ten pages on that alone... the worst experiences were at the local county hospital (anyone who's been in a similar spot knows exactly what I mean), while the best care was at the new neurosurgery wing at Mount Sinai Hospital...

Mom, I'm certain it's everything we imagined it would be. Enjoy paradise up there...
And give Grandpa a hug for me too.😁
brisksurfer brisksurfer Newcomer
6 messages
joined Jun 2009
#703 ·
Terry Rogers said:Hey everyone... I haven't been around here in a while because I just didn't have the strength to keep reading bad news.

My mother passed away yesterday after six months of agony with glioblastoma. To make matters even worse, she had already battled Stage 3 breast cancer, and then just a month ago, numerous metastases appeared in her lungs...
What I’ve been looking into over the last few days—something I wouldn't wish on my worst enemy—makes me see her death as a release. It feels like a beginning, not an end....
Unfortunately, I think only people who have dealt with similar struggles can truly understand this...
But through this brief period, I can tell you one thing: you realize who your real friends are. At least there's some good to come from all this. As for our catastrophic healthcare system and everything we went through, I could write ten pages about it... the worst experiences were at the local county hospital (anyone who has been in a similar spot knows exactly what I mean), while the best care was at the new neurosurgery unit at Mount Sinai Hospital...

Mom, I am certain it is exactly how we imagined it. Enjoy yourself up there...
And give my love to djed Flo while you're at it.😁


I am so sorry about your mom.😢
But I'm really glad to see you holding up so well.😘
brisksurfer brisksurfer Newcomer
6 messages
joined Jun 2009
#704 ·
My dad starts chemotherapy this Tuesday... I honestly have no clue how long this is going to drag on or what the whole ordeal will actually look like. He’s heading in for blood work on Monday, so hopefully, they'll give him some more concrete answers then.
I'm wondering if there are any specific anti-nausea medications he could take, and whether those can be picked up with a prescription?
Lisa Ross14 Lisa Ross14 Member
26 messages
joined Dec 2006
#705 ·
For nausea, Zofran was easily the winner...
+It’d probably be a smart move if you can swing getting some kind of immune booster too—my mom used to take native propolis, beta 1,3 glucan (the 500mg stuff), royal jelly, aloe vera, and so on...
feralridge3 feralridge3 Active Member
54 messages
joined Dec 2010
#706 ·
Terry Rogers said:...my mother used to take raw propolis, beta 1,3 glucan at 500mg, royal jelly, aloe vera, and so on...

I tend to ask rather foolish questions sometimes...
🙄
Surely one shouldn't start everything all at once? 🤷

Right now, I'm taking raw propolis. Honestly, these capsules are revolting. Every time I put one in my mouth and try to swallow it, my stomach just turns. 😲 Next time, I think I'll just get the liquid drops.

And one more thing,
will Temodal cause my hair to fall out?
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#707 ·
Terry Rogers said:Hello everyone... I haven't been around here for a while, as I simply didn't have the strength to keep reading through the bad news...

My mother passed away yesterday after six months of agony with glioblastoma; to make matters worse, she had already fought through Stage 3 breast cancer, and just a month ago, numerous metastases appeared in her lungs...
What I’ve been looking at over the last few days is something I wouldn't wish upon my worst enemy, and so I realize her death is actually a release, a beginning rather than an end...
Unfortunately, I can only truly understand this if you've dealt with similar struggles...
But through this brief period, I can say that you really learn who your true friends are—at least there is some good to come from all this—and regarding our catastrophic healthcare system and everything we endured, I could write ten pages... the worst experiences were at the local county clinic (if anyone has been in a similar situation, you know exactly what I mean), while the best was at the new hospital in neurosurgery...

Mom, I am certain it is exactly as we imagined; enjoy paradise up there...
And give my regards to Grandpa 😁

My sincere condolences. No matter how much the outcome feels like final peace for her, or that sigh of relief that "at least she isn't suffering anymore," it is still incredibly difficult to reconcile with the fact that the person is no longer by your side.

What I maintain, and I am convinced everyone experiences similarly when caught in impossible situations—is this: facing such a heavy illness teaches you how to accept life and find a sense of balance to the point where it seems trivial when someone gets irritated over something like a cigarette.

In any case—stay strong, because the hardest days are often yet to come.🙂
brightgardener8 brightgardener8 Active Member
157 messages
joined Jul 2007
#708 ·
feralridge3 said:I’m currently taking native propolis, but honestly, those capsules are disgusting. Every time I try to swallow one, my stomach just turns. 😲 Next time, I think I'll just grab some drops.

One more thing,
will Temodal make my hair fall out?

Just dump the contents of the capsule into some yogurt and wash it down—it’ll be way easier on you. And just a heads-up, propolis drops aren't the same thing as native propolis; the concentration is usually much lower.

As for the hair? Yeah, combining Temodal with radiation is definitely going to cause hair loss, and honestly, even Temodal on its own will likely do the trick...
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#709 ·
Terry Rogers, I'm so sorry 😢
Keep being brave
brisksurfer brisksurfer Newcomer
6 messages
joined Jun 2009
#710 ·
Terry Rogers said:for nausea, Zofran was hands down the best...
+it’s honestly best if you can afford to pick up some immune stimulants too... my mother was taking raw propolis, beta 1,3 glucan at 500mg, royal jelly, aloe vera, and all that stuff...

Can you get Zofran with a prescription, and how much does it cost if you can't?
We actually just picked up some raw propolis based on a recommendation from someone on this forum. Plus, I've had great results using propolis for tonsillitis myself, so I trust it more than anything else. She’s also drinking plenty of green tea, beet juice, honey... and so on.
Lisa White54 Lisa White54 Active Member
213 messages
joined Jul 2008
#711 ·
Terry Rogers said:Hey everyone... haven't been around here in a while. Honestly, I just didn't have the energy to keep reading through all the bad news.

My mom passed away yesterday after six months of pure agony fighting glioblastoma. To make matters even worse, she’d already battled Stage 3 breast cancer, and then just a month ago, everything just fell apart with metastases spreading to her lungs...
The stuff I've been looking into over the last few days—man, I wouldn't wish it on my worst enemy. It makes me see her death as a kind of release, like a beginning rather than an end....
Sadly, I think only people who've dealt with the same or similar nightmares can actually get where I'm coming from...
But if there's one silver lining in this short, brutal stretch, it's seeing who your real friends are. At least there's that. As for our absolute disaster of a healthcare system and everything we had to endure? I could write ten pages on that alone... the absolute worst experiences we had at the local county hospital (if you've ever been in a spot like this, you know exactly what I mean), versus how much better things were at the neurosurgery department in the new hospital...

Mom, I'm certain it's everything we imagined it would be. Enjoy being at peace up there...
And hey, give djed Flo a hug for me too.😁

Terry Rogers, please accept my condolences. I'm sure your mother is in a much more beautiful place now, somewhere where pain and suffering just don't exist.
brisksurfer brisksurfer Newcomer
6 messages
joined Jun 2009
#712 ·
brisksurfer said:Can you get Zofran with a prescription, and if not, how much does it cost?

I’m quoting myself here just to say I finally got an answer on the For a New Day Association forum. 😍
You can get it without a prescription—provided you coordinate with your doctor, obviously—and $6.75 the price is...
Carol Newman21 Carol Newman21 Newcomer
9 messages
joined May 2009
#713 ·
feralridge3 said:I usually have stupid questions...
🙄
Surely not all at once? 🤷

Right now I’m taking native propolis. Those capsules are disgusting. Every time I try to swallow one, my stomach turns. 😲 Next time I'll just get the drops.

And one more thing,
will Temodal make my hair fall out?

Hey,
hope you guys handle the treatment okay.
Temodal doesn't cause hair loss; that usually comes from radiation. But there's a catch—at the hospital, they used a targeted radiation machine, which is way better than the old stuff because it only hits what needs hitting, leaving the rest of the body—or the head—protected.
With that kind of targeted radiation, hair only falls out right where the beam hits, and it grows back pretty fast. My dad's hair was already fully grown back after a month, so you can't even tell.
I'm here if you need any advice.
Hang in there.
Scott Green4 Scott Green4 Newcomer
1 message
joined Jul 2009
#714 ·
Terry Rogers my condolences... just stay strong...
Lisa Ross14 Lisa Ross14 Member
26 messages
joined Dec 2006
#715 ·
Thanks, everyone... the funeral is tomorrow... I need to get ready for that...

My mom's illness has completely shifted my perspective on life—certain things just mean more now. It sounds cliché, I know, but before all this, my life felt kind of hollow. I was constantly getting worked up over trivial nonsense and wasting so much time on things that didn't matter... Now? I can just sit out in the sun with a regular cup of coffee and actually feel happy.

It’s honestly tragic that it takes something like this to finally teach us what actually matters.
Roger Hall15 Roger Hall15 Active Member
107 messages
joined Jul 2003
#716 ·
Terry Rogers, please accept my sincere condolences and hang in there.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#717 ·
We were at Congress yesterday. Here’s the report:
feralridge3 feralridge3 Active Member
54 messages
joined Dec 2010
#718 ·
Carol Newman21 said:Hey,
I really hope you guys handle the treatment okay.
With Temodal, you don't lose your hair, though radiation might cause some issues. But there's a silver lining: they used a targeted radiation device on my dad's rib, which is miles better than the standard stuff because it only hits the specific area needed while keeping the rest of his body—and head—protected.
With that kind of targeted radiation, hair only falls out right where the beam hits, and it grows back incredibly fast. My dad’s hair was already fully grown back after just a month; you can't even tell.
If anyone needs advice, I'm here.
Hang in there.

Tomorrow marks the end of the first cycle.
The very first day, I was vomiting all morning long. My oncologist prescribed some dexamethasone, and by Tuesday I took Reglan and felt alright. I get a bit nauseous in the mornings, but once the afternoon hits, I'm fine. I'm crossing my fingers it stays that way.

Oh, I actually went through head radiation last year after my first tumor, so I'm clear for five years. Maybe the technology will have advanced even further by the time I ever need radiation again—though I'm praying this recurrence is the first and last time.

In my case, the hair fell out specifically in the areas where I was radiated, and honestly, it looks pretty ridiculous right now. Some parts of my hair grew back, but that specific spot from the radiation is struggling. It's thin, and what makes it funny is that it's turned gray, so I look totally patchy. 😁
wanderinggardener57 wanderinggardener57 Newcomer
3 messages
joined Jun 2009
#719 ·
Hello everyone.. I have a quick question for you all, does anyone happen to know which association in the US deals specifically with ectophilia?
I'm currently helping a family raise funds for their daughter's surgery, so I really need to connect with some people who can help.
If anyone happens to have any information or leads on this, please reach out to me.
amberskipper13 amberskipper13 Newcomer
3 messages
joined May 2009
#720 ·
I’ve been reading through your posts all afternoon, and I honestly just stand in awe of everyone's courage and resilience. It actually prompted me to reach out—maybe you all could offer me some advice, or perhaps just a little bit of encouragement.
My mother-in-law is battling cancer. She was feeling terrible for a long time—stomach issues, mostly—but she was so terrified of getting a gastroscopy that she kept putting it off. By the time she finally worked up the nerve to go, the results were devastating. There were more tests, then extensive surgery where they had to remove quite a lot, but by then, it was too late. The metastases have spread to her bones. She’s been in the hospital since January; from then until now, she’s probably spent maybe seven days total at home. There is no saving her anymore, no more treatment options left... all that remains is a feeding tube, regular transfusions, and a massive, massive amount of morphine :-(
I’m not as emotionally attached, so I can think somewhat realistically and try not to let my emotions cloud my judgment. It’s hard, obviously, but I feel like I can endure it somehow.
But I am worried about my husband. His father made a huge mistake. He didn't want to tell him his mom had cancer, and he wouldn't even tell him how much was removed during the surgery. He just kept repeating that everything would be fine once Mom started eating again.
Once he realized things were spiraling out of control, he talked to me in early April and asked if we could tell my husband that Mom has cancer. Then, a few weeks ago, I was "given the honor" of telling my husband that there is no hope for Mom—that they are stopping treatment because her body is simply too weak to handle anything else.
This isn't my first encounter with this vicious disease. When I was ten, my grandmother was diagnosed with breast cancer. When I was fifteen, she passed away. I was too young to fully grasp all the suffering and trauma my parents went through during those five years, but I remember the moment they told me Grandma had died as if it were yesterday. That moment was the trigger for all my later struggles (if you read any of my previous posts, you’ll know what I’m talking about). I never knew how to deal with that loss, and honestly, I still don't.
That’s why I’m so concerned about my husband; he is incredibly close to his mother.
His way of coping is to retreat into his own shell; he says he doesn't want to burden me with it. But it breaks my heart to see him suffering like this.
So, I’m asking for your advice. How can I help him? How can I make this remaining time for my mother-in-law as beautiful and comfortable as possible? Will it ever get easier?

Again, I truly admire your strength. Any advice at all is welcome.

Thanks!

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