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Support resources for families dealing with cancer and other serious illnesses

Started by James Cox6 · · 👁 375 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 …
slyowl10 slyowl10 Member
14 messages
joined Apr 2010
#1761 ·
My dad’s liver is incredibly swollen right now. He just had an ultrasound, and it showed fluid starting to build up on the right side of his liver. The doctors are acting like it's no big deal, though, since he already has metastases in the liver and needs to start chemo.
Will chemotherapy actually help reduce the swelling, or what?
I’m honestly terrified... I can't stop worrying that the swelling—or that fluid buildup—might just burst or something and suffocate him.
James Cox6 James Cox6 Active MemberOP
150 messages
joined Mar 2009
#1762 ·
Every time I open this thread, my heart just sinks 😢
Good luck to everyone 🙂
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1763 ·
slyowl10 said:My dad has severe liver swelling. He just had an ultrasound, and it shows fluid starting to build up on the right side of his liver. The doctors are playing it down, saying it’s nothing to worry about because he already has metastases in the liver and needs to start chemo.
Won't the chemo actually do anything about the swelling?
I'm honestly terrified that this buildup—this fluid—is going to rupture or something and suffocate him..

Saying it isn't "serious" isn't exactly accurate, though given the liver metastases, it's a predictable development. How much that fluid recedes will depend entirely on how he responds to the treatment. You have to keep that fluid accumulation under tight control; if too much builds up at once, it becomes life-threatening, and that's when they have to perform a paracentesis to drain it. Doctors usually prescribe diuretics like Fursemid, but obviously, everything has to be managed strictly by his physician.
Sophia Ross53 Sophia Ross53 Member
20 messages
joined Jul 2010
#1764 ·
Is anyone actually going to get back to me?
Or am I just shouting into the void here?
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#1765 ·
Sophia Ross53 said:Is anyone actually going to answer me?
Or am I just shouting into the void here?

Look, if this thing actually cured cancer, it wouldn't be sitting on a shelf. It would have won a Nobel Prize in Medicine by now, because let’s face it—nobody has cracked the code on a cure yet.
In my estimation, this is just another immune booster and antioxidant, much like Imunomax or Biobran. It might help support the immune system or perhaps slow down the progression, but that's about it. I don't have direct experience with this specific product, but having dealt with cancer myself, I’ve spent my fair share of time researching and "trying" countless things on my mother. In the end, all we really managed to do was buy her a little more time.
I know you're terrified right now and everything feels completely overwhelming, but once the initial shock settles and you can think clearly, you'll find the strength to fight. You need to stay strong for your mom; she's going to need you to lead the way.
Sophia Ross53 Sophia Ross53 Member
20 messages
joined Jul 2010
#1766 ·
Thanks, Amanda Miller69.
I know there’s no magic pill here; I was just curious about what you've experienced. With so many different supplements and dietary hacks out there, it's hard to know what actually works.
I try my best to stay strong, but sometimes I just hit a breaking point—especially when dealing with people who seem to have no heart. Of course, I don't let her see that.
But seeing her looking so thin, hooked up to those tubes and IVs... it's tough.
Everything is going to be okay.
Sean Ross8 Sean Ross8 Newcomer
4 messages
joined May 2012
#1767 ·
Angela Wright said:I'm hanging in there😳. It really helps me stay afloat when I can offer someone else a bit of advice, though sometimes I wonder if focusing on others is just a way to distract myself from my own struggles, don't you think?😳

Angela Wright, please, I need your help. My mom just finished her first round of Temodar, and I’m at a complete loss for words regarding how to interpret everything. The MRI taken right before the Temodar—just thirty days after her radiation—showed some pretty terrifying results; even though I'm certainly no medical expert, anything described as a "large, expansive process involving a wide area" sounds incredibly ominous, doesn't it? I’ve been too intimidated to press the doctor for details because she tends to be so pessimistic, so I haven't asked much, but she did start the Temodar. Mom made it through those first five days, with only the first day bringing up vomiting, while the other four were relatively manageable. However, I am dying to know, what does a "good response" to Temodar actually look like in practice? We've been giving her 4 mg of dexamethasone daily, but as of this afternoon, we've added another 4 mg ampoule to the mix. She is struggling to walk now, her left leg seems to be failing her completely, and it feels as though she isn't quite present or aware of her surroundings anymore. Have you noticed any specific reactions to Temodar like this? Is there reason to hold onto hope? Her blood work isn't due until Thursday, and then I have to see the doctor on Friday with the results—but the doctor told me Mom doesn't even need to come along. I honestly don't know how I'm going to face that appointment alone. I've been trying so hard to keep my head above water, but I feel like I'm just sinking deeper and deeper every single day.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1768 ·
Susan Hayes25 said:Angela Wright, please help me. My mom just finished her first round of Temozolomide, and I don't even know how to describe it... the MRI right before the Temozolomide (30 days after radiation) sounded terrible. I’m no doctor, but anything described as a massive, expansive process involving a wide area sounds bad enough that I didn't feel the need to press the doctor for details—which I'm honestly terrified of anyway, since she's incredibly negative. So, I didn't ask anything. She started the Temozolomide, and she got through those first five days; she only vomited on day one, and the other four were relatively okay. But I want to know, what does a "good response" to Temozolomide actually look like? We were giving her 4 mg of dex daily, but this afternoon we added another 4 mg ampule. She can barely walk, her left leg is failing her completely, and I feel like she isn't even aware of her surroundings. Have you noticed any specific reactions to Temozolomide? Is there reason to hope for improvement? Her blood work isn't until Thursday, and then I have the appointment with the doctor on Friday with the results—but the doctor told me Mom doesn't need to come with me. I don't know how I'm going to go alone. I've been trying to hold it all together, but I feel like I'm sinking deeper and deeper.

A "good response" means the disease hasn't progressed; it means things are either receding or at least holding steady.
It's obvious the edema is running wild with your mom, so it's a good thing you bumped up the dex. You can actually scale that dose up to 24 mg in extreme cases. You really need to monitor her closely and adjust the dosage in 2 mg increments—that’s the only way to do it, or at least that's what the hospital staff advised me. Also, try splitting the dex dose into three parts throughout the day. That worked wonders for my mom because it kept her condition stable; if you dump the whole dose at once, she'll seem fine initially, but then she starts crashing toward the end of the day. If you can't manage the three-part split, give her one injection a day and handle the rest of the dose via 0.5 mg tablets.
As for what to expect, it's hard to say. My advice to you is to stop obsessing over the future. Just focus entirely on today, and maybe a little bit on tomorrow. You know as well as I do that this is a brutal, cruel disease, and you have to keep that reality in mind, but you still have to hope for the best and do everything in your power to make her life easier and ensure she gets the best possible care. It seems like she is receiving that right now.
Whatever you do, ask someone to sit with your mom while you head to the doctor. Never leave her unsupervised. I used to handle that by calling in volunteers from the Hospice Foundation of America, who would come stay with her for a few hours while I went out to take care of business.
neonbadger50 neonbadger50 Newcomer
7 messages
joined Jun 2010
#1769 ·
Angela Wright said:Which specific tumor are we dealing with? Is it a glioblastoma or an astrocytoma?

Of course this feels terrible. This is a fundamentally difficult life situation, and it’s the kind of news you spend your whole life thinking, "that will never happen to me," yet somehow, it does.
I remember that when I received my diagnosis, my entire world collapsed. I was essentially in a coma for six months—completely dysfunctional and deeply depressed. Honestly, I don't think I would have been capable of even posting on a forum back then. You are clearly handling this much better than I did, and I truly admire your strength.
You must try to stay focused and avoid overthinking the future.
Right now, the most critical factor is determining if the tumor is operable, as that significantly impacts the quality of follow-up treatment and life expectancy.

Best regards,
I am not sure how to answer that question, Angela Wright, as I only know the diagnosis provided (frontal lobe brain tumor; left-sided hemiparesis) which was sent to me. She was discharged from the hospital a few days ago and sent home because, after the doctors met, they decided the surgical risk was simply too high. Her only remaining option is chemotherapy. It is the only path forward, so we will see how things unfold. Thank you all for your concern and advice; it really is easier when you can share this with people who have been in a similar or identical situation. Warm wishes to everyone...
Sean Ross8 Sean Ross8 Newcomer
4 messages
joined May 2012
#1770 ·
Angela Wright;10668730 said:Anything is possible, even if there's some confusion regarding that PhD! I honestly think you could just mail them, or better yet, put someone on a bus to New York City to hand-deliver those results directly to the specialists at Ribbon under Paladin—or perhaps even catch one of his neurosurgeons for a quick face-to-face chat. Paul actually emailed her husband's test results all the way to Houston, and they were incredibly diligent about getting back to her.
Apparently, this glioblastoma comes in several different variations. There are even transitional stages from grade III astrocytoma to MF glioblastoma, which impacts how successful the treatment will be and how quickly the tumor might progress.
I truly hope everything becomes clear very soon.😢[/QU

Angela, would you mind sharing that email address for the team in Houston? I've tried searching, but I couldn't find a contact email or any info on their consultation fees on their official website (I assume they take credit cards, but it doesn't say). I was thinking of emailing them to get a second opinion, especially since our local oncologist isn't sounding very optimistic. She actually let it slip right in front of my mom when she mentioned Temozolomide toward the end of radiation; she implied that if she knew we were prepared to pay for it, she would have suggested it immediately—but she didn't, likely because she made a wrong assumption. Then, right in front of my mother, she remarked that she didn't think we'd even make it through the full course of radiation. It’s hard to rely on her judgment when she seems to be basing everything on what God Knows! It feels like she assumes that since she wouldn't go to any lengths to get Temozolomide for her own mother, nobody else would either...
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1771 ·
neonbadger50 said:Hi everyone,
I can't give you a definitive answer, Angela Wright, because all I have is the diagnosis they sent over (brain tumor, left frontal region; left-sided hemiparesis). They discharged her from the hospital a few days ago and sent her home because after the doctors met, they decided surgery was just too risky. Now, chemotherapy is her only shot. That’s the path we're on, and we'll take it as it comes. Thanks to all of you for the support and advice—it honestly makes things easier when you can talk to people who have walked a similar path. Best to everyone...

That "brain tumor, left frontal region; left-sided hemiparesis" bit isn't a complete diagnosis. All they've done is state there's a tumor in the frontal lobe and some neurological deficit causing weakness on one side of the body. It's nowhere near enough information to actually provide quality medical care.
Did they perform a biopsy to get tissue samples for pathology so they can actually type the tumor?
It is completely unprofessional and frankly irresponsible to discharge patients like this based solely on an imaging scan without providing a specific diagnosis. From what I can gather based on those notes, you can't even tell if we're dealing with something benign or malignant.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1772 ·
Susan Hayes25 said:Angela, please, if you happen to have that email address for the contact in Houston, could you send it my way? I tried hunting for it on their official site, but I couldn't find a single email address or any info regarding what a second opinion costs (I assume it's via credit card, but they don't say). I was thinking about emailing them to see what they think, especially since our oncologist isn't feeling very optimistic. She actually said it right to my mother's face once she remembered mentioning Temozolomide (at the end of radiation). When she realized we were actually prepared to pay for it, she would have brought it up sooner—but she didn't, probably because she jumped to conclusions. Then, right in front of my mom, she basically implied we wouldn't even make it to the end of the radiation sessions. Honestly, I can't rely on her judgment; she seems to be making decisions based on whatever God Knows, and clearly, she thinks no one would go to such lengths for their own mother, so she assumes nobody else will either...

Unfortunately, I don't have that specific contact😢
But you should reach out to the Dana-Farber Cancer Institute instead. Just fill out this form, and make sure you explicitly mention that you are outside the USA and are seeking a second opinion and diagnostic verification. They claim they'll call you within 24 hours, and based on our experience so far, they actually follow through on that. You'll need to get all the medical records translated into English and request the tissue samples; once you send those over along with the translated files and the CT/MRI/PET-CT scans on a CD, they'll handle it. They'll ship the samples back once they've finished their analysis.
slyowl10 slyowl10 Member
14 messages
joined Apr 2010
#1773 ·
My dad is battling a pancreatic tumor, and honestly, things are looking really grim. He’s starting to get disoriented, like he doesn't even know where he is anymore.
He keeps insisting on going home, but he’s already there. He hasn't eaten anything for days; he just lies there. Is it possible the cancer has spread to his brain? He isn't complaining about headaches—just pain in his stomach area—but he’s incredibly depressed.
How can I make this easier on him? It’s terrifying even typing this out, and I can only imagine what he’s actually going through right now.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1774 ·
slyowl10 said:My dad has a pancreatic tumor and he’s doing really poorly. He’s starting to get disoriented and doesn't seem to know where he is.
He keeps asking to go home, but he’s already there. He hasn't eaten anything for days; he just lies there. Is it possible that the metastases have spread to his brain? He isn't having headaches, just pain in his stomach area, and he's incredibly depressed.
How can I make this easier for him? It’s terrifying even to write about this, let alone imagine what he’s actually going through.

It’s possible there are brain metastases, but it's not a certainty. When the liver and kidneys start failing—which they likely are if they've been hit by the cancer too—toxins build up in the system. That buildup poisons the cells, which manifests as that loss of mental clarity.
The main thing is making sure your dad gets IV fluids if he can't keep anything down.
Regrettably, your father is in the terminal stage of his illness. You should look into requesting placement in a hospice facility where they can provide the level of specialized care you simply can't manage at home. I know how heartbreaking that sounds, but honestly, he isn't even fully aware of his surroundings right now, and hospice will ensure he isn't in pain, thirsty, or hungry, which are the most critical things for someone in his position. Plus, they can provide sedatives to help with the depression.
Personally, if this were my family and there was a hospice available here in the US, I would do it in a heartbeat.
Sophia Ross53 Sophia Ross53 Member
20 messages
joined Jul 2010
#1775 ·
My mom had some heavy bleeding from her throat last night. Apparently, a blood vessel burst. They managed to stop the bleeding, and the doctor mentioned this is pretty common, though it could get dangerous if a larger vessel were to rupture. In that scenario, she could bleed out. On a brighter note, yesterday's scan showed the tumor mass has completely disappeared! However, we have to push through with the full course of therapy to make sure that garbage doesn't come back. We won't know the final results until about a month after the radiation treatment ends. But here's the kicker: one "lovely" nurse told my aunt that it would actually be better for her if that vessel just burst so she could bleed out. Seriously? Get lost with those "well wishes." If that's how you really feel, keep it to yourself. To make matters worse, now she can't come home this weekend like we were all looking forward to.
Still, it's probably better that she's there. If something like that happened while she was at home and the hospital was far away, what could we even do? Nothing.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1776 ·
Sophia Ross53 said:My mom had some heavy bleeding from her throat last night. They’re saying a blood vessel burst. It's stopped now, and the doctor claims this is totally standard, though he warned things could get ugly if a major artery goes. If that happens, she could bleed out. Yesterday's scan actually showed the tumor mass has completely vanished, but we have to push through the rest of the treatment so that piece of garbage doesn't come back. We won't know the real results until a month after the radiation ends. To top it all off, one "lovely" nurse told my aunt that it would actually be better if that vessel just burst so she could bleed out. Seriously, lady, shove your "kind wishes" where the sun don't shine. If that's how you feel, keep your mouth shut. The worst part is she can't come home this weekend like we were all looking forward to.
But honestly, it's better she's there. If something like that happened while she was at home and the hospital was far away, they wouldn't be able to do a damn thing.

Just let the old woman talk nonsense. What a total jerk.😠
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#1777 ·
Sophia Ross53 said:My mother experienced severe throat bleeding last night... they mentioned a vessel ruptured. While the bleeding was eventually controlled, the doctor noted this is quite common, though potentially catastrophic if a larger artery were to give way, leading to uncontrollable hemorrhaging. Interestingly, yesterday's scans indicated the tumor mass has completely vanished, yet we must persist with the treatment regimen to ensure that garbage doesn't resurface... true results won't be clear until a month after radiation therapy concludes. To make matters worse, a certain lovely nurse told my aunt that it might actually be best if that vessel simply burst so she could bleed out... honestly, she can take those "beautiful" wishes elsewhere; if that is truly her sentiment, she ought to keep it to herself. The most frustrating part is that she won't be able to come home this weekend as we had all anticipated.
But perhaps it is better that she remains there, because if such an event occurred while she was at home, far from the hospital, there would be absolutely nothing anyone could do...

How horrific... where is the medical ethics in all of this?😠

I certainly hope that after spending the weekend with you all, she emerges even stronger than before...👍
Sophia Ross53 Sophia Ross53 Member
20 messages
joined Jul 2010
#1778 ·
Mom is finally coming home this Friday! She has her last radiation session on Monday, and then she gets discharged from the hospital🙂.
The doctors are actually stunned by the latest scans—the tumor is completely gone. It’s still too early to throw a party, obviously, but they had practically given up on her from the start. When she first arrived at the hospital, they told us to prepare for the worst. Now, even her favorite nurse is speechless. They clearly didn't know what she was made of.
We're keeping our fingers crossed that her next follow-up on August 31st shows the exact same results.
Our whole family is in total shock; news is flying around so fast we can barely keep up. Honestly, she's handling this better than any of us.
Best to everyone.
Sean Ross8 Sean Ross8 Newcomer
4 messages
joined May 2012
#1779 ·
Angela Wright, could you please help me out?
I went to see my mom's doctor for her checkup yesterday, and it's already time to start her second cycle of Temozolomide.
The most terrifying part is seeing the fear in my mother's eyes; I practically begged her to just prescribe the start of this second cycle, yet the doctor found a thousand different reasons why she shouldn't proceed—essentially suggesting we give up because it's easier for her. But how can we possibly walk away when we can't even judge how effective the Temozolomide was based on just one completed cycle?
Anyway, Mom is currently on 16 mg of dexamethasone, and she told me they would gradually taper it down, even prescribing a reduction to 13 mg. Fine. But this reduction is supposed to start today.
The Temozolomide starts tomorrow, and on top of that, the doctor prescribed dexamethasone at 4 doses of 2 tablets of 0.5 mg each, which means a total of only 4 mg per day!!!!!!!
It is always the same story with this doctor—I only see these surprises after I leave her office and calmly read the medical report. I honestly cannot believe she wants to drop the dex from 13 mg to 4 mg in a single day while simultaneously starting the Temozolomide! It is absolutely horrific. Does she have any idea what kind of reaction this might cause? On top of all that, she actually threatened me by talking about potential bleeding caused by corticosteroids and lecturing me on how harmful they are. But isn't every medication harmful? We don't exactly have a luxury of choice here. I am terrified that if I reduce the dose this drastically, it will lead to a total catastrophe, yet the doctor seems completely unconcerned. She's just scared.
What should I do? I feel absolutely terrible. The Temozolomide is meant to start tomorrow, and I have everything else ready, plus since it's the weekend, I'll be by her side all day to monitor everything closely.
Was your mother taking dexamethasone alongside the Temozolomide, and if so, what were the dosages? Thank you so much in advance.
Eric Diaz75 Eric Diaz75 Newcomer
7 messages
joined Aug 2010
#1780 ·
Hey, I could really use some advice if anyone's got it.
My dad was diagnosed with colon cancer that had spread to his liver last September. He had surgery to remove the primary tumor and started chemo right after. But get this—right after the surgery, he and my sister saw this doctor who was incredibly rude to him, and right then, he felt numbness spreading down his entire left side. When it came time for chemo, they found two tiny spots on his brain. They think it’s a metastasis, but honestly, there’s a chance it was just a stroke triggered by the stress of that encounter with the doctor. It feels like once you have a cancer diagnosis, every little glitch in the body gets labeled a metastasis without them even running the proper tests. 🙏
After a few rounds of radiation, those spots on his brain shrank a bit, so he started taking dexamethasone to keep things under control. Then he moved on to chemo: 8 cycles of Xeloda. He’d get an infusion every other week and then take two Xeloda pills orally for the rest of that week.
He was doing great, honestly. No nausea, he was working, walking, doing everything himself—you wouldn't even know he was sick. The cancer seemed to be backing off and his labs were always solid. But eventually, the therapy hit its limit; it stopped fighting the cancer and just started beating up his system instead. His blood work tanked, so they prescribed 8 more cycles of a much harsher treatment. I don't know the exact name, but doctors usually call these the "heavy hitters" used here in the States. After the treatment, he gets wiped out and can't even get out of bed, but it only lasts a couple of days before he's back to feeling awesome. We even looked into getting Avastin, but his doctor said it wasn't necessary since things aren't catastrophic yet; he figured it would just wreck his body even more.
So, after his last treatment last Tuesday (July 27th, 2010), he was weak for a few days like usual, then fine. But then this Sunday, everything changed. He suddenly stopped eating, has zero strength in his arms and legs, won't talk, and if he tries to eat anything, he vomits. Since he takes a ton of meds but isn't eating, he just throws the pills straight back up. His urine has turned reddish, too. He already had two IV infusions, but he kept vomiting. This morning, we rushed him to the ER because he was a total wreck—he couldn't even lift his head, so we had to carry him in on a stretcher. They checked his heart, lungs, bloodwork, blood pressure—everything looked perfect. The doctors say this is "normal" for his diagnosis because he hasn't been eating. They gave him fluids (basically meal replacements for chemo patients) and anti-nausea meds, because he took Zofran one day and still puked. They think the IV will stabilize him and he'll turn a corner.
Today, my sister and mom tried helping him to the bathroom, and even though they were basically carrying him, he just blacked out. He came to quickly, but his eyes rolled back in his head.
I'm hoping it's just from the lack of food, given he's juggling 30 pills a day, heavy chemo, and IVs. But I'm terrified something is going on with those spots on his brain, especially since he didn't take his dexamethasone last night to stop the vomiting. I'm scared it might have spread to his stomach.
We thought about leaving him at the hospital today because we just don't know how to handle it when stuff like this happens. But then again, he'll definitely get better care at home. In a hospital, nurses might let him vomit or deal with accidents and then make him struggle through the cleanup and changing. At home, we make sure he's comfortable immediately. We bought him adult diapers today because we don't want him struggling to make it to the bathroom.
If anyone has any thoughts or advice, please just be real with me. Anything helps.
I just want all of this to be over. I can't stand watching a man who was working and enjoying life just a few days ago suffer like this and be stuck in bed.

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