Resources and support for families dealing with cancer and serious illness

Grace Fowler said:Hey there! How's it going?
So, I’m all set for Monday. Chemotherapy starts then. I went ahead and shaved my head already, and I’ve finally picked out a wig... honestly, what can I even say? It’s just one of those things. But since I’ve been through this whole process once before, it doesn't feel like such a total mystery. I know exactly what the drill is. I’m just really, truly hoping that this time around goes as well as the last.
It’s just one of those things... it simply has to happen. There isn't really any other way around it.
Hey everyone, just wanted to say hello.

Whether you're wearing a wig or not, I truly believe you are beautiful!😘

So, Mom’s finally heading home today. We did two "trial runs" first to make sure we were ready, and now she's officially transitioning from hospital care to managing her therapies from home. Honestly, it feels like a step in the right direction. She seems okay—her blood work came back looking good, and mentally, she’s holding up relatively well, all things considered. We’re just taking it one day at a time and seeing how things go. Her doctor actually described her current condition as "excellent," which was such a relief to hear.
Regarding those "good blood results," I really hope they’re our own local ones. 😛 I honestly can't believe it, but after everything I tried, I finally managed to conceive. It was such a long road, and I ended up experimenting with so many different things. I was taking native propolis, consuming noni, drinking Taheebo tea, and I stayed on a strict regimen of Biotta juices—specifically the red varieties. I also made sure to include tomato juice and fresh cheese paired with just a little bit of flaxseed oil in my daily routine. After all that, it finally happened.
Hey there! Just wanted to say hello.

Here I am...
The fight continues, everyone, I can see that.👍
To those girls currently going through chemo—you know how it goes—just go out there and kill it.🙂

Things have calmed down a bit on my end. My husband finally realized he can't deal with my mom any other way than having me right here by her side. I went on strike for two weeks, and once he got back from his vacation😁 👍, he finally caught on that this wasn't working.
The result: A little extra cash in my pocket, a massive ache in my back, eczema breaking out on my hands, a messy house with a mountain of laundry waiting to be washed and ironed, and most importantly, my husband has nothing left to complain about. I did everything exactly the way he wanted, and it just didn't work. So now, we’re doing things my way.

I want to thank all of you who encouraged me and gave me the strength to keep pushing forward!😘 😘 😘

Mom hasn't changed one bit. Dad reached out to his cousin, a neurologist, to take another look at Mom's last MRI. He suggested repeating the decompression surgery (stereotactic procedure) because she developed hydrocephalus back then (three months in), and it's almost certainly worsened by now. He says if they could just drain some of that fluid to give her some relief, it would mean the world to me just to have her able to speak again. We actually contacted a famous neurosurgeon through a connection—a friend of my dad's cousin—but he isn't on board with the procedure, seemingly for purely pragmatic hospital reasons. We'll see what my dad's cousin decides to do next.
Palliative care in this country, whether it's in the hospital or at home, is a total disaster👎. Honestly, I don't see why they haven't legalized euthanasia yet. If they refuse to make it easier for a person to live out their remaining days with dignity and without pain, then why not just let them go? They'd save a fortune on end-of-life care; instead of letting someone suffer, just let them die peacefully.😠

Around here, palliative care—whether you're stuck in a hospital bed or trying to manage at home—is a complete and utter circus👎. Honestly, I don't see why they don't just legalize euthanasia. If they aren't willing to actually make life easier for someone during their final days, why not just save the money? Instead of pouring endless cash into treatments for people who can't even recover, why not just let them go peacefully instead of forcing them to suffer through it?

Why would THEY bother caring about anything happening outside the hospital walls...? It’s pretty obvious. My sister and I are slowly getting a front-row seat to the absolute chaos of our healthcare system😈. We were spared from seeing this side of things until my mom got her diagnosis. Lucky us, right?
Can you please walk me through what hydrocephalus actually entails? I might have stumbled into some medical jargon, but clearly, I'm not an expert yet🙂
Hey everyone. Catch you later.

I’m just so incredibly happy to hear that you’re spending more quality time with your mom again! 🙂
And honestly, when it comes to the healthcare system, there isn't much else I can say besides: just trust your own gut and believe in your own... 😠

I did a little digging on my own, so there’s no need to explain hydrocephalus to me. Just wanted to save you the trouble.

Angela Wright said:Well, here I am again...
Well, folks, it looks like the struggle continues.👍
Ladies currently undergoing chemo—how do you say it? Just go out there and kill it.🙂

Things have settled down a bit on my end. My husband finally had that moment of clarity where he realized there’s no way to deal with his mother unless I stay in the picture to manage her. He actually spent two weeks off work, and once the dust settled from his vacation, he finally saw that our current setup is the only thing keeping the peace.😁 👍).
The result: A little extra cash in my pocket, a nagging ache in my lower back, some eczema flaring up on my hands, and an apartment that’s a total disaster zone—piles of laundry just waiting to be washed and ironed. Plus, the old man doesn't have anything left to complain about anymore. I did everything exactly the way he wanted, and frankly, it didn't matter. It wasn't enough. So, now? Now we're doing things my way.

I want to extend my sincere thanks to everyone here for the encouragement and the strength you've given me to keep moving forward. It truly means a lot.😘 😘 😘

Mom is still in the same state. Dad reached out to his cousin, who’s a neurologist, to take another look at Mom's latest MRI results. His take? He’s suggesting we revisit that decompression procedure—the stereotactic surgery—because she developed hydrocephalus back in March, and it’s almost certain things have worsened since then. He mentioned that if they could just drain some of that fluid, she might find some relief, and honestly, it would mean the world to me if she could regain even a fraction of her ability to speak. We actually went through a connection to get a second opinion from a renowned neurosurgeon—another one of Dad's cousins—but he isn't pushing for the surgery, seemingly for purely pragmatic hospital-related reasons. We’re just waiting now to see what my cousin decides to do next.
The palliative care situation here—whether you’re looking at hospital settings or home health services—is an absolute shambles. It's just complete and utter chaos.👎 I honestly fail to see the logic behind refusing to legalize euthanasia. If we aren't willing to grant people a way to navigate their final days with a bit more dignity and significantly less agony, then why bother? From a purely pragmatic standpoint—and I know this sounds cold—wouldn't the state save a fortune by not pouring endless resources into treating terminal dependencies or futile end-of-life struggles? It seems far more efficient to let someone go peacefully rather than forcing them to endure a slow, agonizing decline just for the sake of tradition.😠

I’m glad things have finally settled down back home. Even in this exhausting world, you need those moments where the clouds break and you can actually see the sun for a second. It's about time. 🙂

I’m checking in too 🙂
Angela Wright, I am truly glad to hear that you and your father have finally buried the hatchet, and I sincerely hope things stay peaceful between you both from here on out.

I do have a question for the group, though.

As I mentioned previously, my grandfather is battling lung cancer. He has already completed six rounds of chemotherapy, and now we are waiting to present his case before the oncology board to decide on the next steps in his treatment plan. One of the requirements for that review is a bone scan. We went ahead and had that done, but honestly, I’m feeling a bit anxious waiting for the doctor to sit down and explain what these results actually mean, so I was hoping someone might be able to offer some insight.
Can a bone scan effectively identify skeletal metastases?

Here is the report:
The bone scintigrams show an area of increased radiopharmaceutical uptake in the central torso region involving the four lumbar vertebrae and the central portion of the manubrium near the xiphoid process of the sternum. The rest of the skeletal system shows physiological distribution of the radiopharmaceutical.

Best wishes to everyone!! 😘

Carol Ramirez said:I'm also here to 🙂
Angela Wright, I’m really glad you and your dad have finally buried the hatchet—I truly hope things stay peaceful between you two moving forward.

That said, I do have a question.

Like I mentioned before, my grandfather is dealing with lung cancer. He’s already gone through six rounds of chemo, and now he’s waiting to face the oncology board to decide on the next steps. One requirement for that review is a bone scan. We’ve already had the test done, but I’m anxiously waiting for someone to sit down and explain what the results actually mean, so I’m hoping for a little insight here.
Can a bone scan actually detect skeletal metastases?

Here is the report:
The bone scan shows an area of increased radiopharmaceutical uptake in the midsection involving four lumbar vertebrae and the central portion of the manubrium near the xiphoid process of the sternum. The rest of the skeleton shows normal physiological distribution of the radiopharmaceutical.

Best to everyone!! 😘

Honestly, I think the admin, ante dumbledore, might be the one to ask, or maybe sarkom, though I haven't seen him around lately. I have to admit, I’m pretty worried😳. Send him a private message and ask him to post the answer publicly here, since I can't be sure if he actually reads every single thread.

Alright, thanks so much, dear, I'll be sure to check in with them. 😘

GREETINGS TO ALL THE FIGHTERS OUT THERE!

Does anyone here possess any deeper insight regarding tumor markers?
To be precise, my mother just received her latest lab results. Her blood count looks fine, but one specific marker has me deeply unsettled. The numbers are as follows: CEA is at 1.9 (within range), CA 19-9 is 3.73 (also fine), but the PSA test is sitting at 96.4—which is significantly elevated, considering the normal threshold is 35. This was taken following her first round of chemotherapy, and she is scheduled for her second cycle next week. She is currently being treated for stomach cancer following an extensive surgical procedure. If anyone here actually understands the nuances of these readings, please, lend me your expertise.

Linda Campbell said:HEY EVERYONE, HELLO TO ALL THE FIGHTERS OUT THERE!

Does anyone actually know what they're talking about when it comes to tumor markers?
My mom just got her labs back; her blood work looks fine overall, but one specific tumor marker is eating at me. Here are the numbers: CEA 1.9 (normal), CA 19-9 3.73 (normal), but the PSA test is 96.4—way up, considering normal is under 35. She had this done after her first round of chemo, and she’s scheduled for the second cycle next week. She’s fighting stomach cancer following major surgery. If anyone here actually knows their stuff, please weigh in.

That PSA test is typically used as a marker for ovarian cancer cells. However, it often spikes due to endometriosis (those endometrial cysts on the ovaries), and those levels can skyrocket—I have endometriosis myself and my levels jumped past 135! It’s common for it to be elevated in women of childbearing age, regardless of whether there's an actual issue or not. Honestly, it isn't the most reliable indicator on its own; it’s more like a red flag that tells doctors they need to dig deeper with more tests. Your mom should probably head to a gynecologist for an ultrasound just to put your mind at ease. It might be nothing at all—she could have been carrying a chocolate cyst for years without ever knowing. Besides, if I remember correctly, it can also indicate various growths within the abdominal cavity (since your mom is dealing with stomach cancer), so in that context, this number isn't even that extreme compared to my own marker which was massive despite my condition being benign.
I really think things are looking up for your mom.

I have a buddy in San Francisco whose dad battled stomach cancer five years ago. He went through surgery, almost died, finished his chemo, and look at him now: alive, healthy, hitting the docks every weekend for fishing, and built like a tank at over 220 pounds.
She’s going to be fine, don't sweat it!😘

Hey there!
So, about that PSA test—it’s originally used as a tumor marker linked to prostate issues, but since no single marker is ever 100% specific, you can't really bank on its diagnostic power alone. I mean, a PSA test can spike because of all sorts of things related to the pelvic area, the bladder, or even just general abdominal inflammation... it's tricky like that. From what I've seen, doctors mostly use it as one of those baseline indicators to track how a diagnosed condition is progressing over time. Don't let this get in your head too much, okay? It might not be what you think.
I'm keeping my fingers crossed for you and sending a million rays of sunshine your way....

Grace Fowler said:Hey there!
Look, the PSA test is originally a tumor marker linked to ovarian cancer, but since no single marker is ever 100% specific, you can't rely on it blindly to determine its diagnostic power. A PSA test can spike due to all sorts of things involving the ovaries, uterus, or just general abdominal inflammation or stomach issues. From what I've seen in practice, doctors mostly use it as one data point to track how a diagnosed disease is progressing over time. Don't let this number get in your head too much.
Keeping my fingers crossed for you and sending a million rays of sunshine...

So, I just did some digging online, and it looks like those other two markers are actually way more significant than the PSA test—and since yours came back negative, that’s absolutely fantastic news!
http://jjco.oxfordjournals.org/cgi/c...full/29/11/550

It seems only you folks on this forum truly know how to provide the kind of "resuscitation" one needs when things get grim!
My thanks to everyone for the support and the shared insights. People really step up for one another; just hang in there. May God watch over you and your loved ones!

Grace Fowler said:Hey there!!!
So, I’m all set to start chemo this Monday; I’ve already shaved my head and picked out a wig... though honestly, what am I even saying? I guess since I’ve been through this before, I know exactly what the drill is, so it isn't exactly a mystery... I'm just really hoping things go smoothly this time around...
Hang in there...
BEST

Stay strong, lady. 👍

Amanda Williams64 thank you so much👍
I haven't been online for days, so I’m just now getting a chance to express my gratitude.

To be honest, I am at a complete loss as to how I can convince my mother to undergo chemotherapy.
She is absolutely terrified of it. This isn't even her first battle; about ten years ago, she was diagnosed with uterine cancer. Back then, she went through intense chemo but decided on her own to stop treatment in favor of alternative medicine. Everything seemed fine for a while, but three years ago, breast cancer appeared.
She underwent surgery and started a few rounds of chemotherapy, but she ended up stopping again because she couldn't handle losing her hair and dealing with the brutal side effects.
Now, she is fighting colon cancer. She has already had surgery for this, and she is experiencing excruciating pain in her left leg because they had to remove some lymph nodes and a vein from that leg during the procedure.
Her entire left foot and leg are incredibly sensitive to even the slightest touch, and it has already been six weeks since the surgery. Everyone is telling us that it is absolutely critical that she starts chemo now because there are metastases in her liver and diaphragm, but she is so physically weakened that I truly don't know if her body can even handle it.
I am just feeling so helpless and don't know what the right move is.😢 😢

God, it’s just one of those terrible, unlucky streaks where the body decides to go rogue and develop something malignant. I truly, deeply feel for your family right now—honestly, my heart goes out to you guys—but look, it’s time to pull out all the stops. You really need to get Mom started on her treatment as soon as humanly possible... I should probably mention, though, that there's actually been some decent progress lately with drugs designed to handle those nasty chemo side effects (you know, those extended-release medications).
I'm keeping everything crossed for you.🙂

I am at a complete loss regarding what we should do about my father. He was supposed to begin his third round of chemotherapy—he keeps insisting he’s starting next week—but the thing is, he hasn't even gone in for his lung scans yet. And the worst part? He lied and told us he already did them. It’s become this constant cycle of dishonesty and avoidance; honestly, it isn't even new since the diagnosis, it’s been this way for years. You just can't have a straight conversation with him. I can't help but feel as though he has simply given up on life—as if he doesn't care about his own survival, or even our well-being—and it feels like he thinks he knows more than any of us combined. To make matters worse, we don't have the funds for the high-end medications, and I have spent countless hours researching specialized diets and holistic options, but he refuses to even consider anything that's right in front of him. My mother is so fragile, my brother struggles with his mental health, and frankly, my own health isn't where it needs to be either... I truly don't know what to hold onto. How on earth can I convince him to cooperate?

Honestly, guys, the stupidity just never ends. Mom is continuing her home treatments, which makes sense. It means from Monday through Friday, we’re heading to the hospital for radiation and her Unknown + dexamethasone, and then on the weekends, we have to hit up the urgent care clinic just for her dexamethasone injection. We haven't actually sat Mom down to talk about the prognosis regarding her glioblastoma. Once she starts asking too many questions, my sister and I do our best to dodge the specifics—we basically just hedge and try to stay positive, encouraging her to keep fighting. Essentially, we’re doing everything we can to downplay how serious this really is.
Then, we walk into the clinic and some idiot nurse or doctor lets slip that Mom actually has a "benign" tumor and that everything is going to be fine. Of course, Mom lights up. She says she finally has hope. If I didn't pass out right then and there, I almost did. Look, I am all for support and encouragement, but this? I honestly don't know if I'm the crazy one here or what.
First, we get blindsided at the hospital by the surgeon, who wasn't subtle at all when he made it clear that this disease is incurable and that we're looking at a fight just to extend her life for maybe 18 months max. We spend days just trying to process that devastating news, and then we hear that the tumor is "benign." Obviously, no one would be happier to hear that if it were true, but this...
Sending love to everyone!

Amanda Williams64 said:Honestly, people, the stupidity is endless! Mom is continuing her treatments at home, which makes sense. That means Monday through Friday we’re heading to the hospital for radiation and taking Temodale plus dexamethasone, and then on weekends, we hit the urgent care clinic just for her dexamethasone injection. We haven't said a single word to Mom about her prognosis regarding this glioblastoma. Once she starts asking "too many questions," my sister and I do our best to dodge the issue—we play it vague, avoid direct answers, and try our hardest to comfort her and keep her fighting spirit up. Basically, we’re doing everything in our power to downplay how serious this actually is.
Then we walk into the clinic and some idiot nurse or doctor lets slip that Mom actually has a "benign" tumor and that everything is going to be fine. Naturally, Mom is overjoyed. She’s full of hope now. Honestly, if I didn't pass out right then and there, I almost did. I can handle support and encouragement, but this? Now I’m starting to wonder if I’m the one who's losing it.
First, we get blindsided at the hospital by the surgeon, who makes it crystal clear—without being subtle at all—that this disease is incurable and that we’re looking at a fight just to extend life to maybe 18 months. We spend days struggling to even process that information, and then we hear the tumor is "benign." Of course, nobody would be happier if that were actually true, but this...
Best to everyone!

Just let her stay in that belief😳. My mom and I went through the exact same battle, and looking back, I realize we wasted an insane amount of energy on it, because in the end, she figured out what was really happening anyway. You don't need to be a neurosurgeon to eventually realize that if you're undergoing radiation and chemo, you're dealing with a malignant tumor.
It is what it is; she’s getting treatment and everything is in God's hands... I think it’s best to look at things that way and not overthink or argue about it, because once the wheels start falling off, they fall fast...👎

This lie from the medical staff is completely unprofessional and deserves condemnation, even if it was likely intended with good intentions 🙄 (with cancer, the road to hell is paved with good intentions). If you can't tell the truth, there's a way to remain silent or phrase things so the patient isn't crushed by it, but that's another failure of the American healthcare system, where they teach medicine from textbooks rather than out in the field among real people 😠. Learning how to deliver bad news should be a mandatory subject in medical school.

Even though I keep seeing news about people passing away from glioma, I still deeply believe it's possible to somehow beat this disease, and you have to remain persistent in the fight, because who knows, maybe your mom will be the one to beat it.
The quality of care—both physical and psychological—is incredibly important, perhaps even vital. Pamper her and take care of her, but don't smother her. Let the woman live as peacefully as she can and enjoy her time with her family.