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

So, we’ve hit a bit of a crossroads.

The blood work looks fantastic. Even more importantly, the CT scan came back totally clear—the surgeons did an absolutely stellar job and managed to get everything out (it was a colon tumor, Dukes B stage).

Now, our oncologist has laid out two paths for us: we can go ahead with chemotherapy (Xeloda), or we can opt for a "watchful waiting" approach where she just goes in for checkups every three months without any active treatment. Since her results are so incredibly positive, the doctor actually questioned whether chemo would even provide much benefit, weighing that against the potential side effects. It’s ultimately our call to make.

To be honest, I’m feeling pretty torn. On one hand, chemotherapy feels like the "safe bet"—but then again, it’s going to take a massive toll on her body, and right now, she’s feeling wonderful. On the other hand, if we skip the chemo, she’ll have the chance to fully recover her strength and boost her immune system, which might be enough to keep the cancer from ever coming back.

I'm definitely not looking for anyone to make this decision for us; I’m just really curious to hear how others here have navigated similar situations or what your thought processes were.

Emily Hayes said:So, we've hit a bit of a crossroads.

The blood work looks fantastic. The CT scan didn't show anything else, and the consensus is that the surgeons did a flawless job—they got everything out (colon cancer, Dukes B).

Our oncologist gave us two paths: go ahead with chemotherapy (Xeloda), or opt for a "watch and wait" approach where we just come in for checkups every three months without any active treatment. Since her results are so strong, he mentioned it's questionable whether chemo will actually offer much benefit, and the real question is how much damage it might do. We have to make the call ourselves.

Honestly, I’m torn. On one hand, chemo feels like the "safe bet," but then again, it's going to beat her system down, and right now, she feels great. On the other hand, skipping chemo gives her a chance to build up her strength and immunity, potentially preventing a recurrence naturally.

I'm not asking anyone to make the decision for us; I just want to hear what the folks on this forum think.

To be perfectly blunt, if this were anything other than Xeloda, I’d tell you to sleep on it. But since we're talking about Xeloda—and God forbid it's anyone else in my family—I’d say go for it. It’s taken orally and is usually pretty easy to handle. Imagine passing this up only to have things get complicated later and spending the rest of your life wondering "what if"... plus, if she really can't stomach it, she can always stop.
In my view, that’s the smart move. Xeloda isn't your heavy-duty, traditional chemo; it's more of a cytostatic drug that slows down malignant cell division. This gives the immune system enough breathing room to recognize and take them out.
Combine Xeloda with boosting her immunity, and she could live a very long, full life. 😉
Good luck! 🙂

Xeloda is a type of chemotherapy. While many patients deal with side effects from Xeloda, if you know what to look out for before starting treatment, most of them can be caught early and managed effectively.

Thanks to both of you. The doctor mentioned they’ll want frequent check-ups for now, and if things take a turn for the worse, we'll pick a treatment plan that fits the situation. Right now, it's not that she definitely needs chemo, but it's not exactly a "clear" case either—it's sitting in this gray area. That puts the weight on us to help decide, because there are no guarantees regardless of which path we take.

She made a miraculous recovery from the surgery and the physical decline that happened right before it (honestly, none of us realized those were tumor symptoms at the time; we just chalked it up to her existing health issues), which makes the decision about chemo feel even heavier for all of us. Of course, the final call is hers. She’s incredibly sharp and responsible, so she’ll make a thoughtful choice, but we’re doing our best to feed her as much solid information as possible to help her through it.

@Ethan Roberts23

Could you go into more detail on that? How exactly do they manage the side effects? So far, all I've heard about is hair loss (which isn't our main concern), mouth sores, fatigue, weakness, vomiting, digestive issues...

Dad is heading back to the hospital today... He claims he's just going "to check in." Honestly, I still can't battle these demons and this grief on my own. I go to bed in tears and wake up the same way. The only time I feel okay is when I'm not near him—the moment I see him, the urge to cry hits, and he offers zero support with his constant negativity. I don't get how a person can fail to realize they have cancer and that every single day actually matters. All he cares about is how long he'll be stuck in the hospital because he hates being there; he's obsessed with how soon he can get back home... it's exhausting. I feel completely powerless and angry, and I can't believe Mom just sits there watching this happen with total indifference. Today, she's even making me feel like I shouldn't go to the hospital to tell the doctor that it's her responsibility to give him the truth and explain things clearly... instead, Mom just sits and waits, and once he's finished, she doesn't ask a single question. She leaves everything up to a man who lied to us for months just to avoid facing the doctor—someone for whom the truth is clearly an afterthought. Is it common to deal with people like this, or is my father truly one of a kind?

Kate Wells44 said:Xeloda IS chemotherapy. A lot of patients deal with side effects from Xeloda, but if they're briefed before starting therapy, most of them can be spotted early and managed symptomatically.

I didn't express myself very clearly—I meant to explain better, but honestly, it’s hard to keep my thoughts straight when kids are constantly running circles around my head: what I meant was that people usually picture chemo as some liquid in a bag hooked up to an IV that just nukes cancer cells and triggers a massive reaction. This specific drug actually slows down growth; it acts cytostatically... that's the distinction I was trying to make, but I failed miserably. 😁
As for side effects, yeah, they exist, just like plenty of people have adverse reactions to Aspirin. But you simply cannot compare those side effects in terms of frequency or intensity to something like a heavy hitter such as Adriamycin.
I'm frustrated because I can't find that statistical table comparing different chemotherapeutics and their side effects organized by incidence rates and reaction severity... I swear I saw it somewhere recently and now I can't track it down anywhere. 🙄

Regarding my indirect experience with Xeloda, not a single person I know (and unfortunately, I know quite a few) who took it had any side effects at all—none whatsoever. If they felt anything, they probably didn't link it to the Xeloda, or it wasn't significant. The last person in my inner circle who was on Xeloda was my late great-aunt; she had a very invasive breast cancer and didn't seek treatment promptly or adequately. She was put on Xeloda, and it definitely gave her maybe another 1.5 precious days of life. She was 83 years old and experienced zero side effects. Later, all the doctors said how lucky it was that she hadn't started Xeloda earlier or used a different radiation dose.

We have the example here of Zachary Howard2's father-in-law—the guy was operated on, everything was cleared out, and he was sent home without therapy, as if it wasn't needed... about six months passed—you probably read what was written and saw what his CT scan showed. 😢 I'm not 100% sure if his indication and diagnosis qualify him for Xeloda, but I know people have received it off-label for things other than breast or colorectal cancer, mostly through private oncologists. (@Zachary Howard2, I found some info from the FDA suggesting it's used off-label for head, neck, and esophageal tumors, so hmmm, maybe it would work in this stage. Just a thought, maybe worth looking into further.)

The truth is, there are no guarantees for anything. But damn if I don't know that something can act on any potentially lingering cells (and there are always some left). Look, I'm the type of person who would do everything in my power to further reduce that "guarantee" of a recurrence, even if it means dealing with some side effects. Hell, an oncologist wouldn't suggest it if they didn't think it was necessary. Honestly, I hate that they leave the choice to you without laying out every single pro and con right in front of you to guide your decision, forcing you to go googling just to figure out what to do. 😠

Carol Price6 said:My dad is heading back to the hospital today... he claims he’s just going "to check in." Honestly, I still can't deal with these demons and this grief on my own. I go to bed in tears and wake up the same way. I only feel okay when I'm not near him; the moment I see him, I just want to break down, and he doesn't help at all with his constant negativity. I don't get how a person can't grasp that they have cancer and that every single day matters. All he cares about is how much longer he has to stay in the hospital because he hates being there—he just wants to be back home... it's exhausting. I feel so helpless and angry, and I can't believe Mom just sits there watching everything happen with total indifference. Today, she wouldn't even let me go to the hospital to tell the doctor that it's her turn to demand the truth and get some real explanations. Instead, Mom just sits and waits, and when he's done, she doesn't even ask anything; she just leaves everything up to a man who lied to us for months just to avoid facing the doctors, even though the truth is staring him right in the face. Is it common to have people like this, or is my father a one-of-a-kind case?

Your father is actually an incredibly positive example! What would you rather have—someone weeping, fussing, and spiraling into despair because they have cancer?!
Do you honestly think he's so dense or ignorant that he doesn't know what's happening? This is just how he processes things; it makes life easier for him, and it makes it easier for your mom. If you ask me, the man is handling this better than most. You're the one struggling the most here. You need to find a way to accept his way of doing things: "Yeah, I have a problem, but I'm not going to let it wreck my life or my peace of mind." He isn't letting the disease dictate his existence; he's trying to dictate terms to the disease. He's the boss. He's handling business.
You need to pull yourself together and stop being a burden to him. For God's sake, you're an adult and a responsible person. I know it's hard—it's hard for everyone—but you cannot allow yourself to become a weight on him instead of a pillar of support. Being supportive doesn't mean forcing someone to act the way you think they should; in fact, it's quite the opposite. He is going to do what he thinks is best, and your job is to stand by him and offer support regardless of his decisions. You can offer advice, but always frame it like this: "It says here in this article that this might happen if we don't do this... wouldn't it maybe be smarter to try this or that, what do you think?" You have to leave him the room to make his own calls, just like you love making your own decisions.
Be his rock and get your head on straight. Go somewhere else to cry, find a therapist, scream into a pillow—do whatever you need to do—but when you stand in front of him, you need to be positive and smiling, even if you have to fake it. That is the least you can do for a father you love so much.
Get a grip and protect your own peace and sanity, because you're going to need it!

Yeah, he’s handling this situation perfectly—if you consider being completely unmotivated "handling" it. All he wants is to "get away from the doctors." Honestly, I had to pull some serious strings across half the city just to secure an appointment within the next 48 hours, because they discharged him from Mercy Hospital again at his own insistence. Now, we finally have a slot for a CT scan. It might be easier for me to deal with all this if he would just acknowledge his symptoms instead of denying everything the doctors say and insisting on doing things his way. I can finally breathe a little now that we managed to get this appointment scheduled so quickly... thanks for reading, sometimes I just need someone to actually listen to me 😁 😁

Angela Wright said:The truth is, nothing is ever guaranteed—but damn if I don't want to know if something can hit those lingering cells (and there are always some left over). I’m the type who would do absolutely everything in my power to lower that recurrence risk, even if it means dealing with side effects. Honestly, an oncologist shouldn't even be suggesting you skip it if they think it helps. It really rubs me the wrong way that they leave the choice up to you without laying out every single "pro" and "con" first—leaving you to go googling just to make an informed decision. 😠

I have to admit, I've been following this closely and even I was shocked that the doctor is asking the patient to decide. I mean, what is their job then? There should always be a clear list of pros and cons provided so patients actually have something to base a decision on.
This isn't some harmless antibiotic you just toss back without thinking... 🙄

Angela Wright, could you please find that chart somewhere? I'm interested because we're being told chemo is next, but I've read it might not be that effective for lung cancer cases—and I know my dad is going to ask for my opinion. He'll definitely think ten times over before deciding whether to go through with it.

Carol Price6 said:I have to admit, I’ve been following all this, and it honestly shocks me that a doctor would just leave the decision up to the patient like that. I mean, who's actually running the show here? A doctor should always be providing a clear breakdown of the pros and cons so patients can make an informed choice.
It's not like we're talking about some harmless antibiotic where you can just pop a pill without thinking twice... 🙄

Angela Wright, could you please find that chart somewhere? I'm really interested because they're mentioning chemo for us soon, and from what I'm reading, it isn't even that effective for lung cancer. I know my dad is going to ask for my input and my opinion, and he's definitely going to think ten times over before deciding if he wants to go through with it.

I've been Googling all morning and I just can't find it. 🙂😠
I'll try again later this evening; I can't get to my computer right now because of the kids.

Carol Price6 said:Yeah, he’s handling this situation beautifully. He’s being incredibly stubborn. All he wants to do is "get away from the doctors." That’s why I practically had to mobilize half of Washington, D.C. just to snag an appointment within the next two days—because he insisted on being discharged from the hospital against medical advice, and now here we are, finally getting a slot for a PET/CT. Honestly, I might be able to cope better if he’d just face his symptoms instead of constantly dismissing what the doctors say and trying to run the show himself. I finally snapped once we actually secured this appointment so quickly... thanks to everyone reading, sometimes I just need someone to listen to me. 😁 😁

Trust me, his head is in the right place. 😉 These reactions are textbook. It isn't necessarily a bad thing that he's acting like this, always hunting for a "second opinion."
This isn't just some internet wisdom, honey; these are insights from someone who has been a world champion at navigating exactly what you're going through right now. Only difference is, I had to smash my head against a wall before I found my footing, and in the process, I wasted precious time with my mother, whose diagnosis was much more grim from the jump.
Just let everything else go. Focus on the "here and now" and maybe a tiny bit of tomorrow. I'm telling you, once the wheels are finally in motion, you'll all feel a lot better.

http://2012-transformacijasvijesti.c...-raka-i-tumora

Does anyone actually know anything about this supplement? I’ve been endlessly Googling and digging through research—stumbled upon this...

Carol Price6 said:http://2012-transformacijasvijesti.c...-raka-i-tumora

Does anyone happen to know more about this supplement? I've been Googling and digging around online, and I just stumbled upon this..

Check out some alternative options.
From my own perspective and experience, the actual impact of these kinds of supplements is nowhere near what they claim in their advertisements. Sure, boosting your immune system or getting certain vitamins and minerals—fine. But the idea that they can cure all types of cancer? There's zero chance of that happening. Absolutely none.

I have been debating this for quite some time now, but I feel a profound need to just let it all out and share my experience with all of you here.
My mother is currently in the terminal stage.
Back in May, she was diagnosed with Leiomyosarcoma.
The whole story really begins around July or August of 2012; she had been dealing with various gynecological issues, but they finally reached a breaking point then. After a month or two of trying to manage, she ended up in the hospital for what was supposed to be a routine surgery to remove fibroids that were causing heavy bleeding. That happened in September. Of course, a routine procedure turned complicated, and they ended up having to perform a hysterectomy as well. At the time, the pathology results indicated nothing but fibroids—all five of them.
About a year after that surgery, she noticed some strange discharge and actually had to start using pads! She went to see her gynecologist, but the doctor basically dismissed her, implying there wasn't much left to report anyway...
After five months of endless testing—ranging from potential urological issues to who knows what else—she finally underwent an abdominal CT scan, where the doctor coolly informs her, "Well, the uterus is still in place!"!!!!! Naturally, Mom was absolutely devastated, and through emergency procedures, she was rushed back to the gynecology department.
That was in February 2014. In the meantime, they discovered another tumor on her lungs. First, they attempted to remove the abdominal tumor (it was 3 or 4 months prior, I can't recall exactly). Following the surgery, the outlook seemed positive because the medical team was top-tier, and they believed they had removed the entire mass. They thought it looked benign and told us she just needed to recover before they tackled the one on her lung.
Then come the complications: constipation, stays in surgery...
A month later, at her follow-up, comes a new shock—the mass had grown again, reaching 6 cm. WTF?
The tumors were still being labeled as benign.
Shortly after that, they decided to try removing the lung tumor.
What a mess.
The CT scan and the actual reality were worlds apart. They just admitted her.
She was discharged toward the end of May, and in the interim, the pathology report arrived. It is Leiomyosarcoma. It WAS there back in 2012. Apparently, they are incredibly difficult to diagnose. Even a nurse who is also a physician might miss it until it’s too late, leaving them unsure how to fight it.
In short, we tried alternative methods as well. Unfortunately, nothing helps. I am just watching her fade away.
In medicine, there is simply no help for cases like hers.
Over the last month, she hasn't even been able to walk, even with assistance; for the last three weeks, she hasn't spoken; and for the last five days, she hasn't even eaten, only sipping liquids.
The hardest part is seeing that clear gaze and knowing she is fully conscious.
It breaks my heart when I am changing her, bathing her, feeding her... and tears just stream from her eyes.
I am not alone in this; my younger brother has taken on a massive burden, staying with her while I work, and my older brother is here now that the season has ended. But man... it is so hard.
Please forgive the length of this post, but I just had to vent my frustrations somewhere.
To anyone finding yourselves in a similar situation: do not give up. For some, there is still hope. I know people who have recovered. Sadly, in my case, that won't be the outcome.

placidwalker452 said:...

🙂
I am just so incredibly sorry to hear about what you're going through right now.

placidwalker452 said:I’ve been sitting on this for a while, but I feel like I just need to vent somewhere and share what we’re going through with all of you.
My mom is in her final stages.
She was diagnosed with Leiomyosarcoma back in May.
The whole mess started around July or August of 2012; she had various gynecological issues that finally hit a breaking point. After stalling for a month or two, she ended up in the hospital for a routine surgery to remove fibroids that were causing bleeding. That was in September. Of course, what should have been a standard procedure went sideways, and they had to perform a hysterectomy too. At the time, the pathology results pointed toward fibroids—all five of them.
About a year after the surgery, she noticed some strange discharge and started needing pads. She saw a gynecologist who basically brushed her off, acting like there wasn't much left to report.
After five months of endless tests—maybe it was urological, maybe something else, who knows—she finally got an abdominal CT, where the doctor tells her, with total indifference, "the uterus is still in place"!!!!! Naturally, my mom was devastated, and she was rushed back to the gynecology ward as an emergency.
That was February 2014. In the meantime, they discovered another tumor in her lungs. First, they tried removing the abdominal tumor (it was 3 or 4 months prior, I can't remember exactly). After the surgery, everyone was optimistic because the surgical team was top-tier; they believed they had removed the entire mass, that it looked benign, and that once she recovered, they could deal with the lung issue.
Then come the complications: constipation, stays in surgery...
A month later at a follow-up, comes the next gut punch—the damn thing grew back to 6 cm. WTF.
They kept saying the tumors were benign.
Shortly after that, they decided to try removing the lung tumor.
Total disaster.
The CT scan and the actual reality were worlds apart. They just shut her down.
At the end of May, she’s discharged, and in the meantime, the pathology report finally arrives. It’s Leiomyosarcoma. It WAS there back in 2012. Apparently, they are notoriously hard to diagnose. Even when a nurse is a doctor herself, they don't see it until it's too late, and then they don't know how to fight it.
In short, we tried alternative methods too. Unfortunately, nothing works. I'm just watching her fade away.
Modern medicine offers no help for cases like hers.
Over the last month, she hasn't been able to walk, even with help; for the last three weeks, she hasn't spoken; and for the last five days, she hasn't even eaten—just liquids.
The worst part is seeing that clear gaze, knowing she’s conscious.
The hardest part is changing her, bathing her, feeding her... while tears stream from her eyes.
I’m not alone in this; my younger brother has taken on a massive burden, staying with her while I work, and my older brother is here now that the season is over. But man... it is hard.
Sorry for the long rant, but I just needed to get this frustration out somewhere.
To anyone finding themselves in a similar situation: don't give up. There is hope for some. I know people who have recovered. For us, unfortunately, it won't be the case.

I am so incredibly sorry... I know exactly what you're going through... I've been there myself.😢

Honestly, I think your mom was failed by the system, and all these excuses about how hard it is to detect it just don't hold water. I wish you had reached out sooner... maybe someone could have pointed you in the right direction.😢
Hang in there. We have more strength inside us than we realize; that's the only thing I've learned from my own experience.

placidwalker452--
Hats off to all of you for showing this kind of courage. Reading this was difficult 🙂. Wishing you all strength to endure this agony together... stay strong and hold your ground...

Dear placidwalker452, I am truly sorry to hear about what you're going through.
If it helps at all, we're thinking of you... stay strong.

Dear placidwalker452, I am truly sorry; I understand everything perfectly.

placidwalker452, reading your post just hit me with this wave of overwhelming sadness. I really want to send so much strength to your whole family... you guys can get through this.