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Support resources for families dealing with cancer and other serious illnesses

Started by casualpanther1 · · 👁 84 views · 1.9K replies

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Participants casualpanther1quietpilot87Angela WrightJames Young87Zachary Howard2Benjamin Grant6wanderingharbor61Roger Hall15Zachary Booth3brightgardener8feralwolf24hiddentiger80Karen Fox36Elizabeth Diaz60slyseal28Linda Wright5James Martinez3Jeremy Kelly6gentlemoose62Maria Scott4shadowmason6Kevin Edwards35jadetinker42John Chase6 …
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#621 ·
Lisa White54 said:Given how my husband looks physically, I’m hoping the CT scan results come back clear. We’re still hoping for the best. After the CT, we have to head in for a bone scan because of the pain in his shoulders and arms, even though the X-rays didn't show anything unusual.
I suspect those aches are just linked to these sudden temperature swings—going from sweltering heat to freezing cold...
The more tests we schedule, the more the anxiety builds. What if things have actually taken a turn for the worse?

Physical appearance isn't always a reliable indicator of what's truly happening internally; overall physical strength is what really matters. You both understand this perfectly well, which is likely why the fear feels so much heavier. However, dwelling on "what if" scenarios will only serve to fuel your anxiety further. Please, try to believe that these pains are indeed just a reaction to the weather shifts, and regardless of whatever the results may be, you will find the strength to face it... Hang in there.
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#622 ·
My cousin—my mom’s brother—was recently diagnosed with bladder cancer. He’s already undergone two surgeries, with the second one happening just the other day, where they had to remove his entire bladder because the tumor had completely taken over. From what I gather, they used a section of his small intestine to create a substitute for the bladder (though I’ll admit, the medical specifics are a bit fuzzy to me). Since he's a more distant relative, my aunt wasn't able to provide a precise breakdown of the details; she’s getting on in years, nearly 80, and isn't exactly an expert on all the surgical terminology. Has anyone here dealt with this specific type of cancer, or does anyone have experience with the treatment process and general prognosis?
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#623 ·
Amanda Miller69 said:A cousin of mine—my mom’s uncle—was just diagnosed with bladder cancer. He’s already gone through two surgeries, including one just the day before yesterday where they had to remove his entire bladder because the tumor had completely taken over. Apparently, they used a section of his small intestine to reconstruct things, though I don't fully grasp the mechanics of it. Since he’s a distant relative, my great-aunt didn't have all the specifics (she’s getting up there, almost 80, and doesn't quite follow all the medical jargon), so I'm a bit in the dark. Has anyone here dealt with this specific type of cancer, the treatment protocols, or the actual survival outlook?

God, I am so sorry. You guys are really going through the wringer right now.🙄
http://www.cancerhelp.org.uk/help/default.asp?page=2680

This site is gold👍. Hopefully, one day our local support group sites will be designed with this much utility in mind.
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#624 ·
Angela Wright;15351757 said:🙄"God, things really seem to be piling up for you all lately."

Precisely. It’s almost as if there’s some sort of cosmic hex on us. From what I understand so far, they haven't even prescribed any follow-up treatment yet, so I'm inclined to believe it might not be quite as dire as it looks.
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#625 ·
Here is a little something for you to ponder...
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#626 ·
Amanda Miller69;15358178 said:
Angela Wright said:Good grief, it really seems like everything is hitting you all at once...🙄

Exactly. It feels almost as if we’ve been cursed by some unseen force. From what I understand so far, they haven't even prescribed a specific follow-up treatment plan yet, so perhaps the situation isn't quite as dire as it seems...

Unfortunately, that is simply the nature of existence. Just when you believe you have reached your limit, life finds a way to present a new hardship, reminding you that things can always become more difficult and more painful. And those circumstances, much like life itself, are often entirely beyond our individual control...

Time will pass, and you will eventually gain a clearer understanding of the illness and what the reality of it truly entails. Try to remain resilient...😉

Thank you for sharing such an interesting perspective; I think I'll go read up on it now. I've actually heard some talk about those theories regarding how fasting might starve cancer cells, so I'm curious to see what the actual data says about Vitamin C...
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#627 ·
"I've heard those theories about how fasting can shrink cancer cells, so I'm curious to see what Vitamin C actually brings to the table."

My boyfriend was diagnosed with leukemia, and unfortunately, it was caught quite late. He managed to get things under control using that Brewster treatment (I might have misspelled the name), and now he’s out there hiking the Rocky Mountains, just walking around and keeping everything stable for the time being.
I'm hoping this Vitamin C approach yields some success as well.
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#628 ·
Amanda Miller69 said:I have been hearing all these theories about how fasting might actually starve cancer cells... so I am considering seeing what Vitamin C can do for me...

A friend of my boyfriend’s was diagnosed with leukemia, and unfortunately, it wasn't caught nearly early enough... He managed to get the disease under control using that Brewster treatment—I might have the name slightly wrong, though—and now he's back to hiking through the Rocky Mountains, just walking around and keeping everything stable for the time being...
I am hopeful that this approach involving Vitamin C might actually yield some results...

So, it appears that is a possibility... I appreciate being made aware of these insights. It is certainly worth understanding what we might be able to do for ourselves...
Lisa White54 Lisa White54 Active Member
213 messages
joined Jul 2008
#629 ·
I’ve heard plenty of talk about all these different diets, but honestly, I’ve always been pretty sketched out by them. I don't know, I just get this feeling that you might end up totally draining your system. You need to be pouring everything into building up your immune system so it can actually fight the disease. We've been focusing entirely on boosting immunity to keep things from getting worse, and so far, it's actually working.
briskskipper71 briskskipper71 Member
27 messages
joined Sep 2008
#630 ·
Hey everyone
I have a question about an elderly gentleman who’s eighty years old and was diagnosed with lung cancer after smoking for over sixty years. Since I’m mostly getting info through my grandma from people who aren't really tech-savvy or educated, I don't know all the specifics. All I know is it's squamous cell carcinoma, he finished ten days of radiation, and he's had three rounds of chemo. After that third round, he started having this diarrhea that just won't quit—not even after fifteen days of a strict diet and taking Linex and Ercefuryl. It's absolutely draining him, so I guess I'm wondering if this could be a side effect of the chemotherapy? And if it is, does anyone know how we can fix it?
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#631 ·
briskskipper71 said:Hi everyone
I have a question regarding an elderly man in his eighties who developed lung cancer after smoking for over sixty years. Since I'm dealing with folks who aren't very tech-savvy or educated—people I know through my grandmother—I don't have all the specifics. All I know is that it's squamous cell carcinoma, he underwent ten days of radiation, and he's had three rounds of chemo. After that third round, he started having diarrhea that just won't quit, even after fifteen days on a strict diet and taking Linex and Ercefuryl. This is absolutely draining him, so I'm wondering: could this be a direct side effect of the chemotherapy? And if so, what can actually be done to fix it?

He should try eating more bananas and some dark chocolate. It's an old-school remedy. The main thing is making sure his gut flora doesn't get completely wiped out. Probiotic lozenges like PROLIFE containing lactobacilli are great for regulating the intestinal flora.
Beyond that, you have to be extremely careful about dehydration; you really need to push for IV fluids.
briskskipper71 briskskipper71 Member
27 messages
joined Sep 2008
#632 ·
Thanks, Angela Wright. I actually already know all that, and it’s what we're doing now—I just thought maybe someone on here had some secret trick up their sleeve, you know, like that thing with the popcorn to help with the chemo nausea
John Chase6 John Chase6 Newcomer
5 messages
joined Jun 2007
#633 ·
Hey there, my favorites!!
Just wanted to check in—things are pretty much staying the same, unfortunately!!! We actually managed to get away to the beach for a few days, but after about ten days, everything just went south again :-( a fever hit, the lab results were terrible, and we raced back to Chicago at lightning speed. We had our consultations and, for now, nothing has changed—just "REST." Pffft, seriously? That’s supposed to be actual advice!? I've done plenty of resting, but honestly, it doesn't do squat to calm things down. So, for the next few days, I guess I'll just play the part of a pillow and stare blankly at some impossible TV shows...

Fighters,
I really hope everything is okay with the Pigeon and that you're all leading the charge toward a win.!!
Nancy Hernandez43, I'm keeping my fingers crossed that you're still holding strong!
Muscle girl, I bet you're already tan as a dark chocolate bar by now...
Angela Wright!!!! Zivaj for me too
Greetings Din
Lisa White54 Lisa White54 Active Member
213 messages
joined Jul 2008
#634 ·
briskskipper71 said:Hey everyone
I’ve got a question about this old guy I know. He’s eighty, and after smoking for over sixty years, he ended up with lung cancer. Since I'm mostly hearing things through my grandma, and the people involved aren't exactly scholars, I don't have all the specifics. All I know is it's squamous cell carcinoma, he did ten days of radiation, and he’s had three rounds of chemo. After that third round, he started dealing with this diarrhea that just won't quit—even after fifteen days on a strict diet and taking Linex and Ercefuryl. It’s absolutely draining him, so I'm wondering: could this be a direct side effect of the chemo? And if it is, what can actually fix it?

Diarrhea, vomiting, nausea, and just feeling totally grossed out by food are classic side effects of chemo. Usually, that stuff lasts about ten days. My husband went through those exact symptoms after his chemo under the MIC protocol. But honestly, when he was on Taxotere, the side effects were way worse. It wasn't even the nausea as much as it was the bone pain... the pelvic area... it was brutal. But look, it passes. You just have to focus on boosting the immune system afterward so the body is ready to handle the next round.
Lisa White54 Lisa White54 Active Member
213 messages
joined Jul 2008
#635 ·
My husband went in for his CT today. We won't get the results until Monday. Honestly, I am such a nervous wreck right now.
slyseal28 slyseal28 Member
11 messages
joined Mar 2007
#636 ·
Grace Fowler said:Hey there, my dears!!
Just checking in to let you know things are more or less steady!!! We managed to get to the beach for a few days, but about ten days later—bam:-( fever spiked, bad test results, and we rushed back to Chicago at lightning speed. We had our consultations and for now, the word is nothing else can be done—just REST. Pfft, and that’s supposed to be advice!? Telling me to just rest doesn't exactly work when the fever won't quit. So, for the next few days, I guess I'll just pretend to be a pillow and stare blankly at some terrible TV programming...

Fighters,
I hope everything is okay with Pigeon and that you're all leading the charge toward victory.!!
Nancy Hernandez43, I'm keeping my fingers crossed that you're staying brave!
Muscles, I bet you're already tan as a dark chocolate bar...
Ivanić!!!! Z I V A J for me too
Greetings Din

Dear Grace Fowler, sending you a huge hug!

Things have taken a turn for the worse on our end... much worse than we ever anticipated.

His blood work is mostly fine (his white cell count was 8.9 today, though his erythrocytes, hemoglobin, and hematocrit are low, and liver enzymes are elevated as usual), but after the second round of Gemzar, we dealt with some minor fever issues, which we managed to knock down with a Voltaren suppository. However, over the last two days, his cough has intensified so much that it irritates him to the point of vomiting everything he eats. He didn't sleep a wink last night because of the coughing, so this morning we went to a private clinic to get a chest and heart X-ray. To put it bluntly, the results were grim. The Radiologist looked at me and said, "As an old doctor, I first have to tell you that I am incredibly sorry." I nearly collapsed right then and there... Thank God Pigeon was waiting outside and didn't hear that sentence. The Radiologist suspects pneumonia has set in... And the worst part is, Pigeon is already on antibiotics...
After that, I took him to the hospital and he was admitted... I spoke with the doctor, but she actually thinks it isn't pneumonia; she said they compared the current scans to the previous ones and nothing significant has changed. However, she does believe we're seeing side effects from that first line of chemo (that miserable Adriamycin), which is known to be cardiotoxic.

We also had a cardiac ultrasound yesterday, and our cardiologist briefly mentioned there are changes to the heart valve... We should have the full report and explanation on Monday. Regardless, the situation is dire.

Pigeon has been weak all week, getting exhausted incredibly fast... and he's struggling so hard to breathe...

The absolute worst part of this third line of chemo is the uncertainty... what if we have to stop? If his heart is starting to fail, what are we supposed to do then??? Ugh... Damn this sarcoma! I hate it with every fiber of my being!
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#637 ·
Grace Fowler said:Hi everyone!!
Just checking in to let you know things are more or less status quo... We managed to escape to the coast for a few days, but after about ten days, everything went south again :-( fever hit, the labs looked bad, and we rushed back to Chicago at lightning speed. We had our consultations, but for now, there’s nothing—just "rest." Honestly, is that even advice? I've been told to rest plenty, but damn, the fever won't listen to reason. So, for the next few days, I suppose I’ll just pretend to be a pillow and stare blankly at some impossible TV programming...

Fighters,
I hope everything is fine with the Pigeon and that you're all front and center for the big win!!
Nancy Hernandez43, I'm keeping my fingers crossed that you're staying brave!
Muscles, I bet you're already tanned like a fine piece of dark chocolate...
Angela Wright, U Z I V A J for me too
Greetings Din

Oh, Grace, I am so incredibly sorry that things aren't better and that you're dealing with fevers and poor lab results amidst this summer heat and all these unfavorable expenses... Ugh, I don't have any real advice or anything smarter to say, other than please don't let this shake your spirit. It might be this way today, but I truly believe your strength will overcome everything, time and time again!

We are feeling quite brave over here; we had an ultrasound done the day before yesterday and the results were perfectly fine! Sending lovely greetings and a massive virtual hug from San Francisco! We are right there with you!!!!
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#638 ·
slyseal28 said:Dear Grace Fowler, sending you a huge hug!

Things have taken a turn for the worse here... and frankly, it’s much more complicated than we ever anticipated.

His blood work looks okay for the most part (leukocytes were at 8.9 today; it's just the erythrocytes, hemoglobin, and hematocrit that are running low, plus his liver enzymes are elevated as usual), and after the second round of Gemzar, we dealt with some minor fever issues, which we managed to knock down with a Voltaren suppository. However, over the last two days, his cough has intensified to the point where it irritates him so badly he ends up vomiting everything he eats. He didn't sleep a wink last night because of it, so first thing this morning, we headed to a private clinic—the Mayo Clinic—to get a chest and heart X-ray. Long story short, the results aren't good. The Radiologist actually looked at me and said, "As an old doctor, I have to tell you first that I am incredibly sorry." I nearly collapsed right there. Thank goodness the Pigeon was waiting outside and didn't hear that sentence. The Radiologist suspects pneumonia has set in... And the worst part? He's already on antibiotics...
Afterward, I took him over to the medical center downtown, and he had to be admitted. I spoke with the doctor, and she actually thinks it might not be pneumonia; she mentioned they compared his current scans to the previous ones and didn't see any significant changes. Instead, she believes we're seeing side effects from that first line of chemo—that miserable Adriamycin, which is known for being cardiotoxic.

We also had a cardiac ultrasound yesterday, and our cardiologist gave us a brief update, mentioning there are some changes to his heart valve... We won't get the full report and explanation until Monday. Regardless, the situation is grim.

He's been weak all week, getting exhausted incredibly fast... and he's struggling so much to breathe...

The absolute worst part is how hard this third line of chemo is hitting... what if we have to stop? If his heart is starting to fail, what are we supposed to do then??? Ugh... To hell with sarcoma! I hate it with everything in me!


I am so incredibly sorry things have turned this way. Your guy is a fighter and he isn't going down without a fight. Hang in there.👍
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#639 ·
Grace Fowler said:Hey everyone!!
Just checking in to let you know things are more or less status quo. We managed to sneak away to the coast for a few days, but about ten days later—bam. Everything went south. A fever hit, the lab results looked grim, and we rushed back to Chicago at lightning speed. We’ve had our consultations, and for now, the advice is... nothing. Just rest. Seriously? That’s their big medical breakthrough? Apparently, enough rest should theoretically calm my temperature, but honestly, I doubt it. So, I guess for the next few days, I’ll be playing the part of a decorative pillow, staring blankly at some mindless TV shows...

Fighters,
I really hope everything is going okay with the Pigeon and that you're all leading the charge toward a win.!!
Nancy Hernandez43, I'm keeping my fingers crossed that you're still holding strong!
Misice, I bet you're already tan as a dark chocolate bar by now...
Angela Wright, Zivaj, do it for me too
Greetings Din


Don't back down; I know you're going to come out on top.🙂
brightgardener8 brightgardener8 Active Member
157 messages
joined Jul 2007
#640 ·
Grace Fowler said:Hey everyone!!
Just wanted to check in—things have been mostly steady!!! We managed to get away to the coast for a few days, but about ten days later, everything went south again :-(

slyseal28 said:Things have taken a turn for the worse over here... and it's way more complicated than we ever anticipated.


Damn this disease!!!
Hang in there, ladies! 🙂

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